# Quick help needed! OTC Med for swollen thyroid?



## HeidiBR

Hi all -

My thyroid is visibly swollen. My neck is enlarged. My voice is going hoarse. I am not in any pain. I don't have any problems swallowing.

Question: is there anything over the counter I can take that will bring down the swelling? If so, which med is preferred?

Thanks for your responses.


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## CA-Lynn

Try an ice pack.

How do you know it's your thyroid and not one of the joints?


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## HeidiBR

It is definitely the thyroid. I tried some Aleve and that didn't work. I'll try the ice pack - I didn't think of that. Thanks!


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## peaches

My thyroid acts up at night and my throat feels like someone has sandblasted it with pepper. I start having harder time breathing and swallowing. I also get really hoarse and phlemy during the day. I use an ice pack and it is the only thing that I have found that gives me any relief. I use it almost every night.


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## HeidiBR

I used an icepack today and it helped.

My neck looks like a tree.

I hate this.


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## Andros

HeidiBR said:


> I used an icepack today and it helped.
> 
> My neck looks like a tree.
> 
> I hate this.


I hate this for you also and I do hope you plan on calling your doctor Monday and letting him/her know what is going on.


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## HeidiBR

I called my doctor on Friday. I never got a call back.


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## Andros

HeidiBR said:


> I called my doctor on Friday. I never got a call back.


Lovely! Totally lovely! I am so so sorry that your doctor did not extend the courtesy of calling you back.

Hope you can get some "action" Monday.

Let us know how we can help you through cyber-space if we can.

Hugs,


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## HeidiBR

Thank you , Andros (and everyone here).

You all are way more helpful than my physician.
I am accepting that I will be swollen like a tree trunk forever.
What are the criteria for taking this #$%^& gland out of my body?
I want it GONE.


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## Andros

Andros said:


> Lovely! Totally lovely! I am so so sorry that your doctor did not extend the courtesy of calling you back.
> 
> Hope you can get some "action" Monday.
> 
> Let us know how we can help you through cyber-space if we can.
> 
> Hugs,


I am not familiar with your whole history. Have you had RAIU and were there nodules of a suspicious nature, vascularity, heterogeneous thyroid tissue..........anything like that? Were you diagnosed Hashi's based on high titers of TPO or did you in fact have FNA which determined that Hurthle cells indigenous to Hashi's were present?

If you have time and I know you don't feel good but I need to be brought up to snuff here.

One thing I do know and it may even be true. You can say you can't breathe, can't swallow, apnea and that you are in pain etc..

Do you have swollen lymph glands also? Do you feel this doctor has been on top of this for you? I did note that your FT3 is below mid-range. That in and of it's self is not a good thing.

I and others will help you all we can.


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## McKenna

That really stinks! 
My endo's recommendation was that if you have a painful nodule that feels swollen or pressure that it should be taken out. 
I go through periods where I have pain in my thryoid and I feel pressure in my throat and into my face. Like someone has their hands around my throat. I will have to try the ice pack too.


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## HeidiBR

Thank you!

In March at my first endo appointment when I started this whole roller coaster, the doctor felt nodules on my thyroid. However, the ultrasound showed a normal thyroid.

I was diagnosed based on a TPO of only 35 (range greater than 35 is abnormal) with lots of hypo symptoms and a heavy (mother, sister, brother) family history of autoimmune thyroid issues.

I don't even know what RAIU is  I'm sure I didn't have it done.

Yes, lymph glands are a bit swollen, too.

My voice is hoarse.

The thyroid is visibly swollen.

All other symptoms are actually better.

I wonder if I have something else going on, and the swollen thyroid is a byproduct?


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## Andros

HeidiBR said:


> Thank you!
> 
> In March at my first endo appointment when I started this whole roller coaster, the doctor felt nodules on my thyroid. However, the ultrasound showed a normal thyroid.
> 
> I was diagnosed based on a TPO of only 35 (range greater than 35 is abnormal) with lots of hypo symptoms and a heavy (mother, sister, brother) family history of autoimmune thyroid issues.
> 
> I don't even know what RAIU is  I'm sure I didn't have it done.
> 
> Yes, lymph glands are a bit swollen, too.
> 
> My voice is hoarse.
> 
> The thyroid is visibly swollen.
> 
> All other symptoms are actually better.
> 
> I wonder if I have something else going on, and the swollen thyroid is a byproduct?


Heidi; you have been on this board and no doubt others long enough to know that the when a patient has the above symptoms, cancer must be ruled out.

I am really really worried about you and I do recommend that you insist on a radioactive uptake scan (RAIU.)

Please scroll down and read the symptoms...........

http://www.cumc.columbia.edu/dept/thyroid/risks.html

Thinking of you hard today.

By the way; high titers of TPO (antimicrosomal antibodies) [[[like 700, 800 and in the thousands]]] are "suggestive" Hashimotos and when that happens, the doctor should always do FNA if possible or do an uptake scan. Yours were not high at the time but they could be now.

I am on the verge of thinking that you may wish to consider going doctor shopping.


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## peaches

HeidiBr

Have you had a chance to speak with your doc? I am anxious to hear from you and see if you are feeling any better? Andros may be right, you may need a second opinion. Hope you are in a better place and feeling better. Hugs x 10!!!


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## Andros

peaches said:


> HeidiBr
> 
> Have you had a chance to speak with your doc? I am anxious to hear from you and see if you are feeling any better? Andros may be right, you may need a second opinion. Hope you are in a better place and feeling better. Hugs x 10!!!


I agree; we have not heard from Heidi and I share your concern.


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## HeidiBR

Hi folks.

Thank you all for thinking of me.

I have not been concentrating on myself. My husband had an abnormal chest x-ray last Thursday, and a CT scan on Friday. He is a 51 year old man who has never smoked. CT scan shows a giant (approx. 4.8" by 3.7" by 3.6") mass in his lung, with a couple of other smaller densities in the same lung.

The other lung is clear. The lymph nodes appear to be clear. Upper abdomen seems for now to be clear. Bones from the CT scan look good.

Please pray for him. We are praying that this is some sort of large benign cystic thing as anything else at this point is too hard to think about.

Thanks,
Heidi


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## Andros

HeidiBR said:


> Hi folks.
> 
> Thank you all for thinking of me.
> 
> I have not been concentrating on myself. My husband had an abnormal chest x-ray last Thursday, and a CT scan on Friday. He is a 51 year old man who has never smoked. CT scan shows a giant (approx. 4.8" by 3.7" by 3.6") mass in his lung, with a couple of other smaller densities in the same lung.
> 
> The other lung is clear. The lymph nodes appear to be clear. Upper abdomen seems for now to be clear. Bones from the CT scan look good.
> 
> Please pray for him. We are praying that this is some sort of large benign cystic thing as anything else at this point is too hard to think about.
> 
> Thanks,
> Heidi


Oooooooooooooooooooh; Heidi, Honey Bunny! OMG!! Yes I will pray. I am putting your husband on my prayer list right now this minute. And you will be on it also.

Yes, yes; benign.

You are under a lot of stress but please please let us hear from you when you are able.

{{{{Heidi and Heidi's husband}}}}


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## HeidiBR

Thank you all.
This is a very confusing time. We are totally freaked out, to say the least.
All we have is the CT scan report. And an appointment for 10/12 for a bronchoscope.
And, if you can believe it, we are going to Mexico to a resort for 9 days. My husband is insistent that we still go. His doctor says no problem with going. The thought of going makes me want to throw up, but...he wants to go.

I hate reading the CT report. It is very vague. Nowhere does it say "suspicious for malignancy."

This is the worst thing that has ever happened to us so far in 22 years of marriage.

My husband is nowhere near as freaked out as I am. He is of the thought that we don't know what it is, and until we do, we cannot freak out. I lost my father to lung cancer so I am not as calm.

Thank you for your prayers. They are really appreciated and needed.


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## Andros

HeidiBR said:


> Thank you all.
> This is a very confusing time. We are totally freaked out, to say the least.
> All we have is the CT scan report. And an appointment for 10/12 for a bronchoscope.
> And, if you can believe it, we are going to Mexico to a resort for 9 days. My husband is insistent that we still go. His doctor says no problem with going. The thought of going makes me want to throw up, but...he wants to go.
> 
> I hate reading the CT report. It is very vague. Nowhere does it say "suspicious for malignancy."
> 
> This is the worst thing that has ever happened to us so far in 22 years of marriage.
> 
> My husband is nowhere near as freaked out as I am. He is of the thought that we don't know what it is, and until we do, we cannot freak out. I lost my father to lung cancer so I am not as calm.
> 
> Thank you for your prayers. They are really appreciated and needed.


You are welcome. When I say I do something, I do it! You can count on it.

Did hubby have "symptoms" which prompted him to see the doctor?

You know, when it is all said and done, your husband is right. Do what he wants to do (I know you are) and be happy. Carpe' Diem as they say. Each day is precious!


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## HeidiBR

He had a cough. A dry cough. That's it. One round of low fever.


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## Andros

HeidiBR said:


> He had a cough. A dry cough. That's it. One round of low fever.


Wow!! I am so glad he got into the doctor. Most men would not be that prompt! That right there is a good sign.


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## HeidiBR

He had a cough and slight fever after going swimming and doing massive amounts of yard work on a hot day. The cough hung on so after 3 weeks he went to the doctor. She gave him a z-pack in case of infection. After the z-pack the cough got a bit better and no fever. After coming back from a business trip last week he thought he should follow up since he still had a slight cough. He's been tired and dragged out, but not to a high degree; just some malaise.

I should say he was never had bronchitis, pneumonia, or any other trouble with his lungs. He doesn't smoke.

He is not sick feeling. He feels fine. Some coughing now and then. He's lost 2 pounds in the last few months.

So the chest x-ray showed a mass. The CT confirmed "Bulky left hemithoracis neoplastic disease with associated left upper lobe involvement." That's it. That's all we know. It didn't say anything about malignancy or suspected anything.

He has an appointment at Duke Medical Center the second week of October. His doctor tried to get him in earlier but wasn't able to. She had no problem with him traveling to Mexico on Saturday and with him not being seen until the second week of October.

I am so confused and scared.


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## Debbie from Milwaukee

Heidi:
I am just catching up on your story--I am so sorry that you and your husband have this huge uncertainty on top of your health issues! I know from personal experience as well as work as a school counselor that times of "not knowing" something as huge as this are some of the most extreme emotional states that a person can experience.

I too will pray about your husband's health situation. I hope this Oct. 12th test is about the soonest he can get in after your vacation. Until then, you are doing the best things you can do for you and your husband: you are praying, getting information about both of your health conditions, and looking for support where ever you can get it. Take care!


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## HeidiBR

Thank you all! Your prayers are much appreciated.

We're flying out tomorrow into a possible tropical storm. And you know what? I don't even care.

By the way, my doc called back almost a week after I called. Said for me to try Claritin as my hoarseness and swollen thyroid might be allergies.

That's so helpful, isn't it?

Meanwhile, we're off to deliver my husband's CT images of his chest to his DOCTOR. She only has the report. Not the images.

I hate medicine right now.


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## Andros

HeidiBR said:


> He had a cough and slight fever after going swimming and doing massive amounts of yard work on a hot day. The cough hung on so after 3 weeks he went to the doctor. She gave him a z-pack in case of infection. After the z-pack the cough got a bit better and no fever. After coming back from a business trip last week he thought he should follow up since he still had a slight cough. He's been tired and dragged out, but not to a high degree; just some malaise.
> 
> I should say he was never had bronchitis, pneumonia, or any other trouble with his lungs. He doesn't smoke.
> 
> He is not sick feeling. He feels fine. Some coughing now and then. He's lost 2 pounds in the last few months.
> 
> So the chest x-ray showed a mass. The CT confirmed "Bulky left hemithoracis neoplastic disease with associated left upper lobe involvement." That's it. That's all we know. It didn't say anything about malignancy or suspected anything.
> 
> He has an appointment at Duke Medical Center the second week of October. His doctor tried to get him in earlier but wasn't able to. She had no problem with him traveling to Mexico on Saturday and with him not being seen until the second week of October.
> 
> I am so confused and scared.


This is scary and a mighty big bump in the road. Glad he is going to Duke. And thank you so much for the up-date.

Prayers are flying on my end.

This appt. really is not that far away.

Hugs to you and yours,


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## CA-Lynn

Hi, Heidi,

I've been down and out all week with, of all things, bronchitis and an asthma event, so Andros reached me to tell me your news. Not sure if you'll get this in time for your trip.

I'm glad you're going to Duke for this. Perhaps your pulmonologist there will want her own set of x-rays.

I think you should be thinking positively at this stage. There's nothing in the report to make you suspect something fatal.

Is your husband asthmatic? Sometimes during an allergic attack my xrays show some quirky things that go away with propert inhalant treatment.

Am thinking of you.

And by the way, Andros' prayer list is pretty powerful.


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## HeidiBR

Lynn,

Thanks for your note. I hope you are feeling better!
We saw my husband's primary doc and she talked to the radiologist who read the ct scan and says it is suspicious for cancer.
My husband is not asthmatic nor has he ever had any lung illness.
This is all out of the blue.
The mass is huge. The size of a grapefruit.
I have hope and faith in Andro's prayer list. I'm not a person of faith but I am becoming one.

Thank you all!


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## Andros

HeidiBR said:


> Thank you all! Your prayers are much appreciated.
> 
> We're flying out tomorrow into a possible tropical storm. And you know what? I don't even care.
> 
> By the way, my doc called back almost a week after I called. Said for me to try Claritin as my hoarseness and swollen thyroid might be allergies.
> 
> That's so helpful, isn't it?
> 
> Meanwhile, we're off to deliver my husband's CT images of his chest to his DOCTOR. She only has the report. Not the images.
> 
> I hate medicine right now.


Fire your doctor "after" you get through this w/ your hubby! Wishing all the best for the "both" of you!

Put your troubles aside for now and make some great memories!


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## drahaskell

Swelling of the thyroid can be due to cysts or just simply what's called a goiter. There are several reasons for a goiter and to determine which you have requires an ultra sound.

Having a goiter with Hashi's is not all that rare. Goiters are mostly caused by a lack of iodide and sometimes by elevated estrogens.

Yet taking Iodide is not a great idea since you have Hashi's. Iodide stimulates the production of TSH and higher levels of TSH will stimulate the thyroid cells to make more hydrogen peroxide to convert iodide to iodine, so that more thyroid hormones can be produced.

I'd like to invite you to a free webinar I'm hosting next week to explain more details about the causes of Hashi's and some very effective and natural ways to reduce thyroid inflammation and thyroid antibodies. I'll also discuss the importance of thyroid medication and which on works best.

I'm a Naturopathic Physician with 27 years of experience. I've published two books on both optimizing thyroid hormones and Hashimoto's. All of what I'll be speaking about is based upon medical research and the latest in thyroid physiology.

If you'd like to sign up or for more information go to our site at HopeForHashimotos.com.
All the best,
Dr. Haskell


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## CA-Lynn

Haskell is a "naturopathic physician" who is selling his books/other materials.

Spam.


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## CA-Lynn

Heidi - how's it going?


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## HeidiBR

Hi Lynn -

We are still here in Mexico on vacation. We leave for home tomorrow. My husband continues to feel good. I am still a mess but Valium does help some at night.

Thanks for asking. I really appreciate it.


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## CA-Lynn

When is the Duke appointment?

Take care of yourselves! Keep us posted.


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## HeidiBR

Duke appt is Oct 13.

OK, so here is a question. I have been panic-attacking since this whole issue arose. I get my blood drawn for thyroid tests tomorrow and see the endo 10/15. I am wondering if some of this panic is due to my thyroid? It's like I've gone hyper. Is that possible?


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## Andros

HeidiBR said:


> Duke appt is Oct 13.
> 
> OK, so here is a question. I have been panic-attacking since this whole issue arose. I get my blood drawn for thyroid tests tomorrow and see the endo 10/15. I am wondering if some of this panic is due to my thyroid? It's like I've gone hyper. Is that possible?


It sure is possible. You may wish to ask the doctor to run TSI (thyroid stimulating immunoglobulin) just to be sure. There should be no TSI. If you have any, that is responsible for hyper.

And then of course, any chance of being over-medicated on your thyroxine replacement?? Have you eaten a lot of seafood recently? Any changes in supplements or other meds?

All these things must be ruled in or ruled out.

God bless; prayers still 'aflyin' from my end.


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## CA-Lynn

While what Andros said has merit, I think you have to look at the stressors you've encountered in the last month. I have to wonder if your body won't come closer to your "personal normal" once you've got clear answers regarding your husband after the 13th. Any chance you can postpone your lab tests until the end of the month? Stress has a nasty way of causing hormones to run amuck.

http://www.thyroid-info.com/articles/tsh-fluctuating.htm

Take care, Heidi.


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## Andros

CA-Lynn said:


> While what Andros said has merit, I think you have to look at the stressors you've encountered in the last month. I have to wonder if your body won't come closer to your "personal normal" once you've got clear answers regarding your husband after the 13th. Any chance you can postpone your lab tests until the end of the month? Stress has a nasty way of causing hormones to run amuck.
> 
> http://www.thyroid-info.com/articles/tsh-fluctuating.htm
> 
> Take care, Heidi.


That too; stressors will tip the boat every time. Glad you brought that up!


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## HeidiBR

Thank you all for your prayers. We really, really need them, I am afraid.

I have never been more afraid in my life. Not when my parents (my dad died of small cell lung cancer) died. My mom of Alzheimer's. My sister had a cardiac arrest a few years ago and by all rights should have not recovered - but she did, and fully. But I am frightened to death, and I think this is having a huge effect on my body. For example, before where I couldn't lose weight, I am now losing rapidly. My heart feels all fluttery. I am nervous as a cat in a room of rocking chairs.

I will talk to the endo about all of this, and I do not a higher dose of Synthroid, that is for sure.

Thank you all so much - being able to vent about this is very helpful as I sit here and literally watch my mind fly out the window.


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## Andros

HeidiBR said:


> Thank you all for your prayers. We really, really need them, I am afraid.
> 
> I have never been more afraid in my life. Not when my parents (my dad died of small cell lung cancer) died. My mom of Alzheimer's. My sister had a cardiac arrest a few years ago and by all rights should have not recovered - but she did, and fully. But I am frightened to death, and I think this is having a huge effect on my body. For example, before where I couldn't lose weight, I am now losing rapidly. My heart feels all fluttery. I am nervous as a cat in a room of rocking chairs.
> 
> I will talk to the endo about all of this, and I do not a higher dose of Synthroid, that is for sure.
> 
> Thank you all so much - being able to vent about this is very helpful as I sit here and literally watch my mind fly out the window.


Heidi, you are most welcome and you can count on continuity. Let your mind fly; this is a life-altering situation. Your mind is only resting when it flies out the window. Sending White Light, Good Karma and Vibes too!!


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## HeidiBR

Why does my mind fly to all the wrong places and assume the worst? I am not normally a pessimistic person. I am out of my league.


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## CA-Lynn

Heidi,

You might need a refresher course in stress management. In the interim I'll give you two options:

1. When you're feeling stressed out, go into the winter coat closet and scream at the top of your lungs into one of the heavy coats.

2. Allow yourself 15 minutes a day to be stressed out. I mean it. You choose the time and it must be the same time every day. During that 15 minute period you're allowed to stress out as much as you like, vent, get frustrated, beat the pillow....... But at the end of 15 minutes that's it. You cut it off. And if by chance you look up at the clock one day and realize you missed your "stress appointment time" then too bad, you wait until the next day.

I'm serious. Give either of them a try.

And after you're done, just remember that being stressed out doesn't solve a darned thing.

Lynn


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## HeidiBR

That sounds like solid advice. But my mind is racing in panic attack mode. Kind of hard to schedule that, although it is indeed worth a try.

Thanks again - this is my cyber version of screaming in the coat closet.


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## HeidiBR

Hi all -

A very quick update on what's happening in our world. After a bronchoscope, it does not appear that the tumor/mass is in my husband's lung, but in his chest (mediastinum). The Duke docs were stumped as to where this thing is until they bronched him and didn't see the tumor. The other areas of small masses in the lung turned out not to be masses but engorged blood vessels in the lung. If I understood it correctly, the lungs do not have tumors. It is so hard to know if I am understanding it correctly or not.

Today is a needle biopsy. The results of that should be diagnostic.

Thank you all for your continued thoughts and prayers. We appreciate them from the bottom of our hearts.

P.S. I had to cancel my endo appt and he won't renew my prescription w/o seeing him so I hope I can see him next week as rescheduled so that I don't risk running out of Synthroid.


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## Andros

HeidiBR said:


> Hi all -
> 
> A very quick update on what's happening in our world. After a bronchoscope, it does not appear that the tumor/mass is in my husband's lung, but in his chest (mediastinum). The Duke docs were stumped as to where this thing is until they bronched him and didn't see the tumor. The other areas of small masses in the lung turned out not to be masses but engorged blood vessels in the lung. If I understood it correctly, the lungs do not have tumors. It is so hard to know if I am understanding it correctly or not.
> 
> Today is a needle biopsy. The results of that should be diagnostic.
> 
> Thank you all for your continued thoughts and prayers. We appreciate them from the bottom of our hearts.
> 
> P.S. I had to cancel my endo appt and he won't renew my prescription w/o seeing him so I hope I can see him next week as rescheduled so that I don't risk running out of Synthroid.


It sure is good to hear from you!! You almost made me thing of a substernal goiter and then I had to tell myself that "not everything is thyroid related!" Gosh.

Still holding you both in prayer and will be anxious to hear the results of the biopsy.

Your doc won't make one exception re scripting your meds? Geez!! Now that is worrisome also. You have too much on your plate but I am really glad to hear from you. We all are.

How is hubby holding up?


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## HeidiBR

Nice to hear for you, and thanks for the prayers. We really, really appreciate them. And need them.

King Endo (aka my thyroid doc) will see me today @ 3:45 PM since there was a cancellation. We just got back from the needle biopsy so that works out well.

We really, really want to know what this tumor is; I do think thyroid is actually one of the things the Duke docs are looking, although this tumor is so large (12 x 10 x 9 cm) that I can't imagine a thyroid-related tumor being that big?

I think they are looking at thymoma, teratoma, lymphoma. They are all terrifying.

Hubby is holding up well - better than I am. He just "wants the damn thing out of him" as he says it. I don't blame him - it hurts. It's hard to get comfortable when he lays down.

Thank you for your continued thoughts and prayers. It would be a miracle if this thing is benign. A true miracle. Because of its size, though, that is doubtful.


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## Andros

HeidiBR said:


> Nice to hear for you, and thanks for the prayers. We really, really appreciate them. And need them.
> 
> King Endo (aka my thyroid doc) will see me today @ 3:45 PM since there was a cancellation. We just got back from the needle biopsy so that works out well.
> 
> We really, really want to know what this tumor is; I do think thyroid is actually one of the things the Duke docs are looking, although this tumor is so large (12 x 10 x 9 cm) that I can't imagine a thyroid-related tumor being that big?
> 
> I think they are looking at thymoma, teratoma, lymphoma. They are all terrifying.
> 
> Hubby is holding up well - better than I am. He just "wants the damn thing out of him" as he says it. I don't blame him - it hurts. It's hard to get comfortable when he lays down.
> 
> Thank you for your continued thoughts and prayers. It would be a miracle if this thing is benign. A true miracle. Because of its size, though, that is doubtful.


It is not uncommon for substernal thyroid to be mediastinal. Keep the faith here if you can. I know it is hard because we always question why. That is human nature, of course. Most of them represent benign goiter. Keeping fingers crossed here also.

Thank goodness your endo will see you today. Now of all times, you need to be steady on w/your thyroxine replacement.

Sending hugs from afar,


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## CA-Lynn

Hi, Heidi,

I"m glad you're getting down to business on this tumor. You wrote earlier that you didn't think there was such a thing as a lung tumor and actually that is not true. There can be benign and malignant tumors of the lung.

There's also a third class of tumors:

Carcinoid tumors have also been called "cancers in slow motion." Even though they have the potential for being malignant, they mostly tend to grow so slowly that people with carcinoid tumors usually live for many years (sometimes for a normal lifetime).

Carcinoid lung tumors are an uncommon group of lung tumors, developing from neuroendocrine cells. The neuroendocrine cells are in some respect like nerve cells and in other ways like cells of endocrine (hormone-producing) glands. These cells are scattered throughout the body and can be found in different organs, for instance, the lungs, stomach, and intestines. These neuroendocrine cells can form growths (tumors) in many different organs, but usually occur in other endocrine glands such as the adrenal or thyroid glands, or the intestinal tract.

On the subject of the Synthroid:

Glad you got the Rx, but if you ever find yourself in a hospital with a loved one, just explain to his doctor that your had to cancel your own appointment and you need a refill of a certain drug until you can get home again. Most doctors are pretty decent sorts and if they see that you know the name of your drug and the dosage, they might just write an Rx for you for a week's supply.

Thinking about you.


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## HeidiBR

Hi Lynn -

Thanks for that info. I appreciate it. I have read about carcinoid tumors, and all of the other stuff. In this case, we now know that the tumor is not in the lung - it is in the mediastinum (left chest). At least there is a higher chance that it could be benign in the chest, although the sheer size of it probably means malignancy according to the pulmonologist.

I just got my new labs:

TSH = 0.01
FT3 = 3.9
FT4 = 2.0

Ranges are in my signature.
The doc is cutting back on the Synthroid from 125 to 112.


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## Andros

HeidiBR said:


> Hi Lynn -
> 
> Thanks for that info. I appreciate it. I have read about carcinoid tumors, and all of the other stuff. In this case, we now know that the tumor is not in the lung - it is in the mediastinum (left chest). At least there is a higher chance that it could be benign in the chest, although the sheer size of it probably means malignancy according to the pulmonologist.
> 
> I just got my new labs:
> 
> TSH = 0.01
> FT3 = 3.9
> FT4 = 2.0
> 
> Ranges are in my signature.
> The doc is cutting back on the Synthroid from 125 to 112.


Have you lost weight through all of this? I am thinking that may be why you got over-medicated? Hopefully, you will feel better w/ this tiny titration downward.

I think you have a good doc; he does not seem to go to extremes as some are wont to do. LOL!!


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## CA-Lynn

Heidi,

Not the news you wanted to hear for your husband, but so much wonderful medical science is out there, so lots to be positive about. Your attitude and his will go a long way towards the outcome - I believe that.

For those who want to know more about mediastinal tumors, Cleveland Clinic has a good overview.

http://my.clevelandclinic.org/disorders/mediastinal_tumor/hic_mediastinal_tumors.aspx

I'm thinking of you, Heidi.


----------



## HeidiBR

Thank you all for the info.

Sitting here on pins and needles until we know the biopsy results. And then we'll see what we do next. After the bronchoscopy and the needle biopsy, AND this thing hurting him, my husband is not feeling so great. Aleve does help.

The body is a really complicated thing, isn't it?

Yes, I have lost a bit of weight, but it is the stress, I think and not the Synthroid. The stress level right now is through the roof.

I really can't thank you all enough for your thoughts and prayers.


----------



## CA-Lynn

Heidi, please remember that being stressed burns off a lot of energy that only runs you down. Think about it: stress serves no useful function.


----------



## Andros

HeidiBR said:


> Thank you all for the info.
> 
> Sitting here on pins and needles until we know the biopsy results. And then we'll see what we do next. After the bronchoscopy and the needle biopsy, AND this thing hurting him, my husband is not feeling so great. Aleve does help.
> 
> The body is a really complicated thing, isn't it?
> 
> Yes, I have lost a bit of weight, but it is the stress, I think and not the Synthroid. The stress level right now is through the roof.
> 
> I really can't thank you all enough for your thoughts and prayers.


The body is very complicated and quite the miracle. Yes; when you lose weight, that person usually has to cut back a bit on the thyroxine replacement lest they go hyper. So, I do hope your little cut has you feeling in good stead.

We have to keep you on your feet so you can keep hubby on his.


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## HeidiBR

I picked up my lower Synthroid dose today. We'll see how that goes.

Thank you all for caring. It is SO appreciated, I can't even tell you.


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## CA-Lynn

Keep us posted, Heidi. Andros and I check daily to see if you've posted.


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## midgetmaid

I've been following every day, also.

Renee


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## HeidiBR

We should know something this evening or tomorrow. 
I have honestly never been as frightened in my life.
My husband is ready for whatever it is - and ready to fight.


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## Guest

My thoughts and prayers are with both of you. I am glad to hear that he is ready to fight whatever this may be. Hang in there and keep us updated.

Sending Hugs & Blessings to you both!!

Thinking if you,
Kay


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## Debbie from Milwaukee

My personal stress reducer is breathing a slow belly breath through my nose, holding it for 5 seconds, then exhaling through the mouth. I know it doesn't work for everyone. I have heard it is used with people who have undergone traumatic events and those with chronic pain.

Also, maybe tell yourself the news might not come until Thursday...I'll continue the prayers for you and your husband, as well. I wonder if writing out "good news" and "bad news" action plans would help the anxiety as well? Sounds like your husband is trying to marshall the emotion that comes with this uncertainty to prepare him for his upcoming fight. God bless both of you during this very stressful time...


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## Andros

HeidiBR said:


> I picked up my lower Synthroid dose today. We'll see how that goes.
> 
> Thank you all for caring. It is SO appreciated, I can't even tell you.


Glad you got your Synthroid. That is a relief off your mind. Every little bit counts.

We know that if the tables were turned that you would be there for us. That is a given. And we most certainly "do" care.........................; for "both" of you!


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## CA-Lynn

OK, Heidi, this is the time when you need to forget being scared or anxious and put on a positive front for your husband. YOUR anxiety just might be making HIM anxious.

Come on, Heidi. You can do it.


----------



## Guest

I remember being told and shown a poster after my father went missing & was found murderded that help me get thru so really tough days and it said from top to bttom and left to right: Breathe In, Breathe Out! So just remember to do this when you get really stressed.

Prayers are going up for both of you!

Sending you both Big Hugs & Blessings!

Kay


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## HeidiBR

It is a malignancy. It is NOT lymphoma. Other than that, they don't know yet. The cells are poorly differentiated. Possibly germ cell or thymus.


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## midgetmaid

Heidi,

You, your husband, and the doctors are in my prayers. I wish I could give you a big hug right now!

Renee


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## Guest

I am so sorry to hear this news. I will continue to keep you and your husband in my prayers.

Stay strong and lean on each other and your friends during this time.

Sending Hugs, Thoughts and Prayers to you and him!


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## Allihurley

You and your husband are in my prayers for healing. Seriously, keep the faith, as it is the faith that allows healing to take place. God Bless. Stay strong.


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## Andros

HeidiBR said:


> It is a malignancy. It is NOT lymphoma. Other than that, they don't know yet. The cells are poorly differentiated. Possibly germ cell or thymus.


Oh, dear!! They "will" get it. Wonderful things are happening today re this sort of situation.

Ramping up the prayers, the concern and the caring.

The news is not what we wanted to hear but it is not the end of the road. Your husband and you are going to survive this.

You will always find a shoulder to lean on here.

If you are able, keep us in the loop.


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## greatdanes

I will be praying for you and your husband. I had a friend who had colon cancer 2 yrs ago, she had a bleak outcome, but she beat it, and gives God the glory everyday. I also have another friend who beat leukemia 4 yeras ago. There is always hope! Hang in there!:hugs:


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## CA-Lynn

Heidi,

It's not the news you wanted to hear, but this is where you have to let it sink in and then go into full fight mode. Get a positive attitude in place and make sure your husband follows suit. You've done the research and you know what the stats are AND you know it's beatable. So rather than think the worst, this is the time to perk up and set yourself on course to being the strong one and fighting this with everything you've got.

You can do it. I know you can.

Hugs, my friend. Lots of hugs.


----------



## HeidiBR

We met with the thoracic cancer surgeon today. My husband is scheduled for a more invasive biopsy on Friday. Had a PET scan today. I asked the doctor what his hunch of what this is is and he said mediastinal germ cell tumor. I guess we'll know something on Friday, and then more definitively next week. If this is what it is he's looking at 6 weeks of chemo; that will shrink the tumor (or get rid of it altogether). When shrunk, after my husband builds back up from the chemo, then they take the darn thing out.

So...let's hope for germ cell and not thymic cancer. And that it hasn't spread. Please keep your fingers crossed for us.

Thank you all for your hugs, thoughts and prayers. I can't tell you enough how they make me feel.


----------



## Guest

I will continue to keep you both in my thoughts and prayers. We are hoping that this will be the lesser of two evils and that everything will go good for you two. I hope that he will come thru everything smoothly as can be.

Remember that you both are very special and being thought about and prayed for by a lot of people! Alot of us are there with you both mentally and spiritually.

Sending extra big hugs to you both!!


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## Debbie from Milwaukee

My prayers also go out for your husband and you as well. We already know that "if God is for us, who can be against us?", and it also sound like you have some sharp docs on the case. At least you KNOW something now, and you will find out more details in the following days. Breathe; eat well; drink lots of water; sleep when you can; and let the prayers of others hold you up!


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## CA-Lynn

Heidi,

Which is his? Benign or not? [80% of these are benign.]

Germ cell tumors may be benign or malignant. Benign varieties include benign teratoma and teratodermoids. Malignant tumors include seminomas and nonseminomatous tumors (malignant teratomas). Nonseminomatous tumors are further classified as teratocarcinomas, choriocarcinomas, embryonal carcinomas, and endodermal sinus or yolk-sac tumors. About 80% of mediastinal germ cell tumors are benign; these occur with equal frequency in males and females. Malignant tumors are predominant in men; the male-to-female ratio is 9:1. Benign germ cell tumors are termed teratomas or dermoids if they are primarily solid. Some tumors are predominantly cystic; these are referred to as epidermoid or dermoid cysts. Most patients are men 20-40 years of age.
About one third of patients are asymptomatic. Symptoms, when present, are related to the size of the lesion. Human chorionic gonadotropin (HCG) levels are elevated in 7-18% of patients, but alpha-fetoprotein (AFP) levels are usually normal. Metastatic spread involves the regional lymph nodes, lungs, and bone. The neoplasm is highly chemosensitive and radiosensitive, and 5-year survival rates greater than 75% are not uncommon.

Malignant germ cell tumors are subdivided into seminomas and malignant teratomas (nonseminomatous tumors). Seminoma is the second most common mediastinal germ cell tumor. The imaging features of seminomas are usually those of a large, well-marginated, homogeneous, anterior mediastinal mass with soft-tissue opacity or attenuation that shows minimal contrast enhancement. Calcification is exceptional. Embryonal carcinoma, endodermal sinus tumor, choriocarcinoma, and combinations of these histologic types constitute nonseminomatous germ cell tumors. These lesions occur almost exclusively in men.


----------



## Andros

HeidiBR said:


> We met with the thoracic cancer surgeon today. My husband is scheduled for a more invasive biopsy on Friday. Had a PET scan today. I asked the doctor what his hunch of what this is is and he said mediastinal germ cell tumor. I guess we'll know something on Friday, and then more definitively next week. If this is what it is he's looking at 6 weeks of chemo; that will shrink the tumor (or get rid of it altogether). When shrunk, after my husband builds back up from the chemo, then they take the darn thing out.
> 
> So...let's hope for germ cell and not thymic cancer. And that it hasn't spread. Please keep your fingers crossed for us.
> 
> Thank you all for your hugs, thoughts and prayers. I can't tell you enough how they make me feel.


Fingers crossed and a steady flow of prayer also. You both must be just exhausted at this point. Too much stress. But, I am looking for a happy ending.................we "all" are!


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## HeidiBR

Excellent summary Lynn! Seminoma versus nonseminoma is what I am praying for, if indeed it is a germ cell tumor.

It is malignant. And it is not germ cell for sure - the needle biopsy was not definitive - sounds like they ran out of tissue to test. The only thing they know is that it is poorly differentiated malignant neoplasm.

"There are large epithelioid cells with nucleoli in fibrous tissue containing chronic inflammatory cells. Immunoreactivity for PLAP with patchy staining for pan-keratin, and very weak staining for CK76. Cells negative for TTF-1, CD45, CD3, CD20, PSA, CDX-2, CK20, MART/45, CD45 and CD30. Not enough tissue to test for S-100, CD117 and CD5. "These findings are not diagnostic for tumor type but raise the possibility of mediastinal germ cell tumor/seminoma, with additional diagostic considerations being thymic carcinoma and other non-small cell carcinomas. The findings do not support a diagnosis of lymphoma. Additional tissue is required for more definitive characterization of this tumor."

So... they will take more tissue on Friday and do a frozen section to get a preliminary diagnosis. Surgeon's hunch is germ cell. That would be treatable and potentially curable. Germ cells can easily get as large as the on my husband has and the surgeon says he has seen larger. He also said that my husband is very healthy (other than that, how was the play President Lincoln?) - heart is healthy and strong, no other medical issues, he isn't on any meds.

Thank you all. I will post as I know. This outlet is so helpful to me.

I have finally stopped crying and we laughed and smiled yesterday.

On a funny note: there was a Better Homes & Gardens magazine in the PET scan lounge from 1994. Yes, 1994. Good lord.

Let's pray for that. I so appreciate your prayers.

Oh, I should add: surgeon said that if this is a germ cell tumor, it might have started out benign. Also, they took blood to check for markers HCP and AFP. HCP I believe is a component of a pregnancy test.


----------



## Andros

HeidiBR said:


> Excellent summary Lynn! Seminoma versus nonseminoma is what I am praying for, if indeed it is a germ cell tumor.
> 
> It is malignant. And it is not germ cell for sure - the needle biopsy was not definitive - sounds like they ran out of tissue to test. The only thing they know is that it is poorly differentiated malignant neoplasm.
> 
> "There are large epithelioid cells with nucleoli in fibrous tissue containing chronic inflammatory cells. Immunoreactivity for PLAP with patchy staining for pan-keratin, and very weak staining for CK76. Cells negative for TTF-1, CD45, CD3, CD20, PSA, CDX-2, CK20, MART/45, CD45 and CD30. Not enough tissue to test for S-100, CD117 and CD5. "These findings are not diagnostic for tumor type but raise the possibility of mediastinal germ cell tumor/seminoma, with additional diagostic considerations being thymic carcinoma and other non-small cell carcinomas. The findings do not support a diagnosis of lymphoma. Additional tissue is required for more definitive characterization of this tumor."
> 
> So... they will take more tissue on Friday and do a frozen section to get a preliminary diagnosis. Surgeon's hunch is germ cell. That would be treatable and potentially curable. Germ cells can easily get as large as the on my husband has and the surgeon says he has seen larger. He also said that my husband is very healthy (other than that, how was the play President Lincoln?) - heart is healthy and strong, no other medical issues, he isn't on any meds.
> 
> Thank you all. I will post as I know. This outlet is so helpful to me.
> 
> I have finally stopped crying and we laughed and smiled yesterday.
> 
> On a funny note: there was a Better Homes & Gardens magazine in the PET scan lounge from 1994. Yes, 1994. Good lord.
> 
> Let's pray for that. I so appreciate your prayers.
> 
> Oh, I should add: surgeon said that if this is a germ cell tumor, it might have started out benign. Also, they took blood to check for markers HCP and AFP. HCP I believe is a component of a pregnancy test.


Heidi! It is so good of you to keep us informed and I am sure that writing about and sharing your angst is somewhat of an outlet for you also.

You have many cyber-friends here who are rooting for your husband and you.

That is pitiful about the magazine. Not like they can't afford up to date ones. LOL!!

Hey, librarian! Take a book w/ you!!! I love to have my nose in a good book and there are a lot of good ones out there!


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## HeidiBR

I did have a book with me, but a 1994 magazine with "hot new hair styles" was WAY more entertaining!


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## Andros

HeidiBR said:


> I did have a book with me, but a 1994 magazine with "hot new hair styles" was WAY more entertaining!


Too funny!!! How things do change in a decade or so!


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## HeidiBR

Biopsy surgical procedure is 7 AM on Friday. I am hoping we'll have some more answers, and that it won't be bad news.

Thanks for everything all.


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## CA-Lynn

Hi, Heidi,

Just keeping fingers crossed for Friday. Think positive!!!


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## Andros

HeidiBR said:


> Biopsy surgical procedure is 7 AM on Friday. I am hoping we'll have some more answers, and that it won't be bad news.
> 
> Thanks for everything all.


Sending all the "forces" that be on behalf of your husband today!


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## HeidiBR

There is wifi in the recovery room if you can believe it.

From the biopsy they just did, initial pathology: germ cell tumor, seminoma type, is what the initial pathology and blood work shows. PET showed NO spread - only areas that "lit up" were the tumor and part of the lung, but they think the lung is inflammed hence the response. No spread to bones or lymph nodes showed on the PET.

We'll have the final pathology next week. He meets with an oncologist next week. Chemo should start soon. Sometimes these things are so chemo-receptive that surgery is not needed.

I continue to pray that the final pathology shows seminoma, and that he is chemo receptive. The surgeon thinks he will do well with the treatment. Seminoma (if that is indeed the diagnosis when we get the final pathology) is treatable and mostly curable through intensive chemo.

THANK YOU ALL FOR YOUR SUPPORT.


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## HeidiBR

Andros said:


> Sending all the "forces" that be on behalf of your husband today!


You have powerful forces - the news is better than expected!!!!!!!!!


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## Andros

HeidiBR said:


> There is wifi in the recovery room if you can believe it.
> 
> From the biopsy they just did, initial pathology: germ cell tumor, seminoma type, is what the initial pathology and blood work shows. PET showed NO spread - only areas that "lit up" were the tumor and part of the lung, but they think the lung is inflammed hence the response. No spread to bones or lymph nodes showed on the PET.
> 
> We'll have the final pathology next week. He meets with an oncologist next week. Chemo should start soon. Sometimes these things are so chemo-receptive that surgery is not needed.
> 
> I continue to pray that the final pathology shows seminoma, and that he is chemo receptive. The surgeon thinks he will do well with the treatment. Seminoma (if that is indeed the diagnosis when we get the final pathology) is treatable and mostly curable through intensive chemo.
> 
> THANK YOU ALL FOR YOUR SUPPORT.


And we will continue to pray with you. Apparently, God "is" listening! Keep the faith and we will also. This is the best news so far.

Hey; the WiFi makes up for the magazine. Ha, ha!


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## Andros

HeidiBR said:


> You have powerful forces - the news is better than expected!!!!!!!!!


So I see and I am so glad. We are only a part of the way there so you know the prayers and good thoughts will continue.

I have no force but our Creator has a lot of force. I just happen to have the right phone number! LOL!!


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## CA-Lynn

Heidi,

Glad to hear the news. Modern science is phenomenal today and treatment for such tumors is nothing like it would have been 10 years ago. We've come so far.

Now take a deep sigh of relief and know that the worst is over.


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## Guest

I am glad to hear your news today. I will continue to pray that everything goes good as you and husband travel this road for his treatment and recovery.

Stay strong and remember that both of you are being thought of and prayed for each and everyday!

Sending Hugs & Blessings to you both!


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## Debbie from Milwaukee

Praise God for His mercy. Now you and your husband can bask in the care from your family & friends who are your support network. It must feel like a ton or two has been lifted off your shoulders! Hope this is a more targeted chemo that will zap the tumor and not have too many adverse effects. Sounds like your husband has been very healthy prior to this health crisis, so that can make a big difference. Hey--now you can maybe look at any pictures you and your husband took on your vacation!


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## HeidiBR

You know, I have never been particularly spiritual,but I feel like we experienced a true miracle.


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## Andros

HeidiBR said:


> You know, I have never been particularly spiritual,but I feel like we experienced a true miracle.


These experiences are often life-altering. There are miracles and I believe in them fervently.


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## CA-Lynn

Hey, let's not forget about advanced medical science and give some credit there, please.


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## Debbie from Milwaukee

Good point, Lynn. I've always thought that those who apply faith in God without wise management of our earthly resources as well as those who try to do it all on their own are in danger of straying. I'm just glad that Heidi and her husband can enjoy some realistic hope that this health crisis can be resolved with intense treatment in the next few weeks and months.


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## GD Women

CA-Lynn said:


> Hey, let's not forget about advanced medical science and give some credit there, please.


Miracles are made by and through GOD! Advanced medical science are made by and through GOD!

I believe in all three.

Keep the faith!


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## CA-Lynn

Actually, I believe that medical science is what it is because people have worked darned hard and long to make such things happen. Not because some power made it so.

NOthing is so disappointing for a physician that to have a patient he's saved from death thank god and not the doctor.

Let's just agree to disagree on the subject of religion.


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## HeidiBR

I am hedging all of my bets and thanking EVERYONE! EVERYONE! Including all of you.

We got a call on Friday evening from the first doctor we saw at Duke - the pulmonologist who did the needle biopsy and the bronchoscope. He was seriously relieved at the diagnosis and said, "If you are going to have a 12 cm malignancy in your chest, this is the one to have." I told him that was the quote of the week. You could hear the relief in his voice. Clearly this is not the diagnosis he was expecting.

Only a few hundred people a year get this type of tumor. It is closely related to testicular cancer, and an area where medical science has made such strides in cure rates the last 30 years it is unbelievable.

We see the oncologist on Wednesday and get the final pathology results, too. We should have a plan of treatment.

I have a feeling this is going to be fairly intensive chemo, since this is the way to treat and cure these tumors.

Shooting for a cure here.


----------



## Debbie from Milwaukee

It must be so nice to have that pulmonary doc contact you. This shows real compassion and sensitivity on his part. If this is a precurser of the attitude and dedication of the other Duke physicians who will be working with your husband, then you are in good hands!

I know this condition is quite rare, but maybe you can find a support group on the Internet (or the docs can point you towards one) to give you and your husband some feedback on what to expect with his treatments. Sounds like the docs have to shrink such a massive tumor first so then they can use surgery to remove it. I'm sure at this point you could give yourself a good laugh by listing all of the things you considered "problems" a couple of months ago. Amazing how a health crisis can put things into perspective!


----------



## Andros

HeidiBR said:


> I am hedging all of my bets and thanking EVERYONE! EVERYONE! Including all of you.
> 
> We got a call on Friday evening from the first doctor we saw at Duke - the pulmonologist who did the needle biopsy and the bronchoscope. He was seriously relieved at the diagnosis and said, "If you are going to have a 12 cm malignancy in your chest, this is the one to have." I told him that was the quote of the week. You could hear the relief in his voice. Clearly this is not the diagnosis he was expecting.
> 
> Only a few hundred people a year get this type of tumor. It is closely related to testicular cancer, and an area where medical science has made such strides in cure rates the last 30 years it is unbelievable.
> 
> We see the oncologist on Wednesday and get the final pathology results, too. We should have a plan of treatment.
> 
> I have a feeling this is going to be fairly intensive chemo, since this is the way to treat and cure these tumors.
> 
> Shooting for a cure here.


This is truly wonderful news and you are entitled to hedge all bets. I hate that hubby has to go through this and you too but gosh. We all know it could have been far worse.

We will be here for you for the duration and for as long as need be. You can count on that.

There might be some rough days ahead but your husband has a great attitude and so do you. That is part of the battle. Fight to win is the motto here!


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## HeidiBR

We'll find out tomorrow what the course of treatment will be.

I think the standard treatment for the testicular version is BEP (* B = Bleomycin* E = Etoposide * P = Platinum cisplatin is the proper name for this drug).

As for support groups or message forums, I've looked and looked to no avail.

As for the thyroid stuff, I no longer feel hyper, although ladies, I sure am eating like crazy and not gaining anything. Quite a change from having to watch every morsel I ate.


----------



## Andros

HeidiBR said:


> We'll find out tomorrow what the course of treatment will be.
> 
> I think the standard treatment for the testicular version is BEP (* B = Bleomycin* E = Etoposide * P = Platinum cisplatin is the proper name for this drug).
> 
> As for support groups or message forums, I've looked and looked to no avail.
> 
> As for the thyroid stuff, I no longer feel hyper, although ladies, I sure am eating like crazy and not gaining anything. Quite a change from having to watch every morsel I ate.


So glad you are feeling better. It is no fun to be hyper! Hopefully you are in a euthryoid state right now and will continue to be. We can all wish for that.


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## HeidiBR

I think I am running on adrenaline.
It is amazing how much my FT3 and FT4 came up. I started taking my pill in the AM instead of the late PM and I think that is what made the major difference.


----------



## Andros

HeidiBR said:


> I think I am running on adrenaline.
> It is amazing how much my FT3 and FT4 came up. I started taking my pill in the AM instead of the late PM and I think that is what made the major difference.


I am glad to hear this. I had no idea; I personally am opposed to taking thyroxine meds in the PM because it messes w/ the circadian cycle and the adrenals not to mention the TSH is nocturnal.

Taking the thryoxine at night blunts the nocturnal surge of TSH which is approx. 2 A.M. in the morning for most people.

There is all kinds of info on this but here is an excerpt from an abstract:

As TSH is secreted in a pulsatile fashion with maximum secretion in the early morning, we investigated whether measurement of the nocturnal TSH surge is

http://www.ncbi.nlm.nih.gov/pubmed/10077363

http://informahealthcare.com/doi/abs/10.3109/03009737409178391


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## HeidiBR

Clearly, my taking them in the AM made a HUGE difference!

On the cancer front: So... it is definitely germ cell seminoma, the more curable type. THANK GOD. We got the final pathology today. However, we met with the oncologist, only to be told that she is not the right type of oncologist for us. We will be meeting with another oncologist who treats these types of tumors. The appt is on Friday in the afternoon. In the meantime, Luis had an ultrasound of the testicles (to make sure the cancer didn't start there) and will have a CT scan of the abdomen and pelvis to make sure nothing has spread there. Hopefully, we'll have a treatment plan on Friday.

Closer and closer we go...


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## CA-Lynn

How wonderful that the doctor was forthright and recommended a different type of oncologist. It's getting so that you really have to find the "sub-specialty" within the specialty. But better to change now and have an expert carry the case.

I think this is great news.


----------



## Andros

HeidiBR said:


> Clearly, my taking them in the AM made a HUGE difference!
> 
> On the cancer front: So... it is definitely germ cell seminoma, the more curable type. THANK GOD. We got the final pathology today. However, we met with the oncologist, only to be told that she is not the right type of oncologist for us. We will be meeting with another oncologist who treats these types of tumors. The appt is on Friday in the afternoon. In the meantime, Luis had an ultrasound of the testicles (to make sure the cancer didn't start there) and will have a CT scan of the abdomen and pelvis to make sure nothing has spread there. Hopefully, we'll have a treatment plan on Friday.
> 
> Closer and closer we go...


Wow!!! What very happy news!!! I was wondering about checking the other body parts. They sure are on top of everything. I am impressed w/ the care and impressed w/ the continued good news.

I am being grateful on your behalf today!!!

Please let us know about the other tests.

How is Luis holding up emotionally? You?

Many hugs,


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## HeidiBR

Luis is doing very well. He is in pain from the chest biopsy (incision and a deep cut) and it is hard to get comfortable at night because the tumor is right up against his ribs. He has low fevers at night they actually call "tumor fevers." He is ready to start treatment.

I am doing well in that I have regained my sanity and good humor 

The first oncologist was a lung cancer one and she told us "I am happy I am not treating you. You have an excellent prognosis. I don't often get to say that to my patients."

It's funny how the definition of "good news" is so changeable


----------



## Andros

HeidiBR said:


> Luis is doing very well. He is in pain from the chest biopsy (incision and a deep cut) and it is hard to get comfortable at night because the tumor is right up against his ribs. He has low fevers at night they actually call "tumor fevers." He is ready to start treatment.
> 
> I am doing well in that I have regained my sanity and good humor
> 
> The first oncologist was a lung cancer one and she told us "I am happy I am not treating you. You have an excellent prognosis. I don't often get to say that to my patients."
> 
> It's funny how the definition of "good news" is so changeable


Interesting observation you have made about the definition of "good news!" I have pondered that and will some more!

No wonder the poor guy was having trouble w/ coughing and such.


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## CA-Lynn

Any time you've been put through the wringer not knowing what the problem really is, then finding out it could be cancer, then finding out that the problem is a form that responds well to treatment, that's GREAT news.

Something Heidi said brought back memories. About 20 years ago I had some abnormal labs and was sent to a neurologist. Tentative diagnosis - tumor. Not sure which kind. More tests and finally he said, "It's a pituitary microadenoma. If you have to have a brain tumor, this is the one you want."

Boy, was he right. Very treatable.

All things are relative.


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## HeidiBR

You had a brain tumor? Good Lord.


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## CA-Lynn

Yes, but the point I was trying to make was that treatment has come a long way. And that some words [e.g., tumor] can really push the adrenaline charge. We all need to put things in perspective.

Medical science is phenomenal nowadays. In the vast majority of cases, we really shouldn't be so frightened of medical problems.


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## HeidiBR

Medical science is indeed amazing. I wish I didn't have to be so amazed by it right now, though 

It is truly amazing. The type of tumor my husband has used to have a cure rate of 10%, then 30%, now 90 or above. The research emphasis for these tumors now is not how to increase the cure rate, but how to make the treatment less toxic.


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## HeidiBR

Tomorrow my husband starts chemo.

Wow, that is a sentence I did not anticipate writing.

He starts 4 cycles of BEP chemo. Week one is Monday through Friday for 5 hours of the E & P. Week two one short infusion on Wednesday of the B. Week three one short infusion on Wednesday of the B. Then cycle two begins the next week.

If it goes according to plan, he'll be finished with chemo in mid January.

The oncologist says it is possible he'll only need three cycles. She says he has an 80% shot at a cure with the chemo alone. Most journal articles I have read actually put the rate higher, but this doc clearly very aggressive in her treatment approach and wants to slam this tumor hard. It doesn't appear to have spread, and it is questionable if there is a small area of the left lung where it has infiltrated, but these tumors are very chemo-responsive and my husband should do very well. Surgery may or may not be an option after chemo. Usually, the patient is left with a residual non-cancerous mass (a hunk of junk really) that is surgically removed if it is large and left in place if small.

So... chemo tomorrow. The hospital has excellent wifi so I'll bring the laptop and the new Grisham novel.


----------



## CA-Lynn

Good luck, Heidi.

My 40 year-old friend was recently diagnosed with lymphoma and underwent an agressive chemo very successfully. Part of that success, I believe, is that there were drugs available to her to help her through the periods when she was sick. Anti-nausea, etc., drugs. I mention this so that if your husband's doctor doesn't mention this or prescribe them, just know they are available and he should ask for them.


----------



## Andros

HeidiBR said:


> Tomorrow my husband starts chemo.
> 
> Wow, that is a sentence I did not anticipate writing.
> 
> He starts 4 cycles of BEP chemo. Week one is Monday through Friday for 5 hours of the E & P. Week two one short infusion on Wednesday of the B. Week three one short infusion on Wednesday of the B. Then cycle two begins the next week.
> 
> If it goes according to plan, he'll be finished with chemo in mid January.
> 
> The oncologist says it is possible he'll only need three cycles. She says he has an 80% shot at a cure with the chemo alone. Most journal articles I have read actually put the rate higher, but this doc clearly very aggressive in her treatment approach and wants to slam this tumor hard. It doesn't appear to have spread, and it is questionable if there is a small area of the left lung where it has infiltrated, but these tumors are very chemo-responsive and my husband should do very well. Surgery may or may not be an option after chemo. Usually, the patient is left with a residual non-cancerous mass (a hunk of junk really) that is surgically removed if it is large and left in place if small.
> 
> So... chemo tomorrow. The hospital has excellent wifi so I'll bring the laptop and the new Grisham novel.


It "will" go according to plan! This is absolutely stunning news. Luis will hit some bumps but w/ you by his side, he will pull through this.

I love Grisham. What about hubby; will he read while receiving his chemo?

God bless the both of you! Stay strong; this won't be easy but we are here for you and rooting for you!


----------



## HeidiBR

@Lynn - we already have the anti-nausea pills and he will receive them via infusion before the chemo drugs. Hooray for a doctor who is anticipating!

@Andros - he will probably sleep from the anti-nausea drugs, I suspect.


----------



## Andros

HeidiBR said:


> @Lynn - we already have the anti-nausea pills and he will receive them via infusion before the chemo drugs. Hooray for a doctor who is anticipating!
> 
> @Andros - he will probably sleep from the anti-nausea drugs, I suspect.


Sleep is good. The body heals most during sleep. Seriously!

Hugs,


----------



## Debbie from Milwaukee

Heidi:
Thanks for giving us the update. All sounds like the stage is set for success with the treatment plan these excellent physicians have been setting up for your husband. Both of you have been going at a breakneck pace with all of this--hope you both can strengthen and comfort each other as you wait this thing out out. I also hope that your husband will steadily feel less discomfort from the tumor itself as the chemo shrinks (and hopefully) deals a mortal blow to this invader. Still continuing to pray and wish both of you the best!


----------



## HeidiBR

Thanks everyone. Today went well and now we know what to expect from the hospital.

May these three months pass quickly


----------



## Andros

HeidiBR said:


> Thanks everyone. Today went well and now we know what to expect from the hospital.
> 
> May these three months pass quickly


They will. You and Luis will zoom into the New Year with happy faces! Glad things went well on the first day. May they continue to do so!


----------



## HeidiBR

Hi all -

I hope everyone is well. Just a quick update from my world. My husband starts round 2 of chemo tomorrow. He will start it hairless, and bit weaker than round 1. But... he also had a port installed in his chest on Friday so he should be a much happier "chemo camper" and give his veins a big rest!

After the first week of round one of chemo, he was able to comfortably sleep on his side, back and tummy. Before chemo, the tumor was pressing on his chest wall and the only way he could sleep was propped up on a pillow. His night sweats and "tumor" fevers also stopped. The cough is much better. His blood work after 2.5 weeks of chemo showed one of his tumor markers (the HCG) down from 34 to under 5 and normal. So... he would no longer turn a pregnancy test positive (HCG is produced by germ cell tumors and is also the hormone used in home pregnancy tests). I'd like to see a couple other tumor markers come down; one went up slightly but is still normal (I am a worrywart). Anyway... somehow I have to fit in my thyroid bloodwork and trip to the endo. The trip to the endo is scheduled in December during the week my husband has chemo. My stupid endo refuses to give me an extension on the script so I guess I will just cobble together my remnant meds for a week or two.

Last week, I burned boiling hot eyebrow-type wax on my right hand and got a trip to the ER and second degree burns on my hand. So, I am not as "handy" right now as I normally am. At least next week during chemo, I don't need to do anything other than sit with my husband.

Have a great week!


----------



## Debbie from Milwaukee

Heidi:
Glad to hear from you with an update on you and your husband. It sounds like the two of you are in a manageable routine, even though it is not very pleasant. It must be such a relief to watch the tumor marker numbers go down and see your husband more comfortable from the tumor shrinkage. I continue to keep the both of you in my prayers.

I also got friction/chemical burns on both of my hands a few years ago from an airbag expanding when I rear-ended the truck ahead of me. I found that it IS important to follow the advice of the docs on even small burns because they can get goopy and not heal properly if you don't. I still have the scars to remind me that sterile gauze & Silvadine cream works MUCH better than an ordinary bandaid!


----------



## Andros

HeidiBR said:


> Hi all -
> 
> I hope everyone is well. Just a quick update from my world. My husband starts round 2 of chemo tomorrow. He will start it hairless, and bit weaker than round 1. But... he also had a port installed in his chest on Friday so he should be a much happier "chemo camper" and give his veins a big rest!
> 
> After the first week of round one of chemo, he was able to comfortably sleep on his side, back and tummy. Before chemo, the tumor was pressing on his chest wall and the only way he could sleep was propped up on a pillow. His night sweats and "tumor" fevers also stopped. The cough is much better. His blood work after 2.5 weeks of chemo showed one of his tumor markers (the HCG) down from 34 to under 5 and normal. So... he would no longer turn a pregnancy test positive (HCG is produced by germ cell tumors and is also the hormone used in home pregnancy tests). I'd like to see a couple other tumor markers come down; one went up slightly but is still normal (I am a worrywart). Anyway... somehow I have to fit in my thyroid bloodwork and trip to the endo. The trip to the endo is scheduled in December during the week my husband has chemo. My stupid endo refuses to give me an extension on the script so I guess I will just cobble together my remnant meds for a week or two.
> 
> Last week, I burned boiling hot eyebrow-type wax on my right hand and got a trip to the ER and second degree burns on my hand. So, I am not as "handy" right now as I normally am. At least next week during chemo, I don't need to do anything other than sit with my husband.
> 
> Have a great week!


Oh, Heidi!! That is not such a great person, your endo. Maybe one of the docs that are involved w/ your hubby might write an Rx for you if you just "happened" to mention this.

And your poor hand. OMG!! What next?? How are you doing now? I can't imagine the pain of it!

Glad they put a port in for Luis and so so glad to hear of the progress made but feel awfully bad still that this has happened to such a very nice couple.

You be "careful" now and give Luis a gentle hug from "all" of us. Prayers continue on my end; you can count on that.


----------



## lavender

Ouch on the Burn!
Glad to hear your husband is improving. I will ontinue to keep you both in my prayers.


----------



## CA-Lynn

Heidi,

So great to hear from you. It sounds as though Luis is doing better and I'm glad to hear it. Modern medicine is "shock and awe"!

Now about the scripts you need....did your endo know what you've been up to? Wow! If he did, then I'd be royally ticked off at the endo. In any case, just ask one of the docs treating your husband to give you a one week reprieve of meds. Bring your current Rx bottle so he can copy the dosing.

Thinking about you. And remember - you have a lot to be thankful for!


----------



## HeidiBR

Debbie from Milwaukee said:


> Heidi:
> I still have the scars to remind me that sterile gauze & Silvadine cream works MUCH better than an ordinary bandaid!


Thank you Debbie for your prayers.

Oh no - you had a burn too? I am using gauze and silvadine. Tomorrow I will go to an urgent care place near the hospital and have them look at the burn. One part of it doesn't look great. I don't care from a cosmetic perspective, but I am concerned that it heal w/o scar tissue.


----------



## HeidiBR

CA-Lynn said:


> Heidi,
> 
> So great to hear from you. It sounds as though Luis is doing better and I'm glad to hear it. Modern medicine is "shock and awe"!
> 
> Now about the scripts you need....did your endo know what you've been up to? Wow! If he did, then I'd be royally ticked off at the endo. In any case, just ask one of the docs treating your husband to give you a one week reprieve of meds. Bring your current Rx bottle so he can copy the dosing.
> 
> Thinking about you. And remember - you have a lot to be thankful for!


I am going to call my endo and explain - he better give me a couple of weeks reprieve or I'll fire him.

I am amazingly thankful for many, many things. You know, my neighbor who I don't know much at all but who went through cancer treatment at the same hospital as my husband helps us every day. A woman whom I correspond with on a travel forum sent me flowers. A distant relative whom I barely know checks in with me constantly - while my sister in law (her sister) doesn't. People at work I don't know make us food. And all of you have been so helpful in listening throughout this nightmare. I am very, very, thankful, indeed.


----------



## Andros

HeidiBR said:


> I am going to call my endo and explain - he better give me a couple of weeks reprieve or I'll fire him.
> 
> I am amazingly thankful for many, many things. You know, my neighbor who I don't know much at all but who went through cancer treatment at the same hospital as my husband helps us every day. A woman whom I correspond with on a travel forum sent me flowers. A distant relative whom I barely know checks in with me constantly - while my sister in law (her sister) doesn't. People at work I don't know make us food. And all of you have been so helpful in listening throughout this nightmare. I am very, very, thankful, indeed.


Love to hear this w/Thanksgiving only 48 hours away. You are soooooooooo right, my friend. There "are" some mighty good folks out there who bring many blessings to the table.


----------



## HeidiBR

Hi everyone !

Best news ever! It is nice to have some good news to report.

My husband will have three cycles of chemo - not four. His chemo will be complete on 12/29. His tumor has responded so well to the chemo that he will be done with it one cycle early. The tumor was originally 10 x 9 cm and is now 2.5 by 3.7 cm. Apparently, this is an amazing response and his doctor was very happy. His blood tumor markers are now normal. Three cycles total (ie, one more cycle) should take care of this once and for all.

I see the endo next Friday. I am a full 10 pounds heavier than when I saw him at the end of October - stress eating of total crap. I think, though, that I am probably in a good place with my thyroid. For the first time in my life, I am not cold all the time. What a blessing that is! I think I'll probably end up with Synthroid 112.

Anyway, I just wanted to share some happy news for once  Thank you all for being there for me! You are lifesavers.


----------



## Andros

HeidiBR said:


> Hi everyone !
> 
> Best news ever! It is nice to have some good news to report.
> 
> My husband will have three cycles of chemo - not four. His chemo will be complete on 12/29. His tumor has responded so well to the chemo that he will be done with it one cycle early. The tumor was originally 10 x 9 cm and is now 2.5 by 3.7 cm. Apparently, this is an amazing response and his doctor was very happy. His blood tumor markers are now normal. Three cycles total (ie, one more cycle) should take care of this once and for all.
> 
> I see the endo next Friday. I am a full 10 pounds heavier than when I saw him at the end of October - stress eating of total crap. I think, though, that I am probably in a good place with my thyroid. For the first time in my life, I am not cold all the time. What a blessing that is! I think I'll probably end up with Synthroid 112.
> 
> Anyway, I just wanted to share some happy news for once  Thank you all for being there for me! You are lifesavers.


Whoa!! We are going to "all" have a joyful and happy holidays because of this good news!

I think you both have lucked out with some very wonderful doctors. I am so grateful and will continue prayers for you and your husband.

If you have the time; please let us know how your visit to the endo goes.

On a personal level, you have made my holidays complete with this most wonderful update.


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## CA-Lynn

Heidi,

What totally wonderful news!!! REally happy for you.

About the added weight......hey, in the grand scheme of things it is so minor. You'll work it off after the holidays. Just enjoy it all right now.


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## HeidiBR

Andros - that was really sweet! And I will post what the ole' endo has to say.

Lynn - I agree re: weight. I could care less. But ole' endo will comment on it, maybe.


----------



## Andros

HeidiBR said:


> Andros - that was really sweet! And I will post what the ole' endo has to say.
> 
> Lynn - I agree re: weight. I could care less. But ole' endo will comment on it, maybe.


Is this the one that would not give you any slack on renewing your Rx?


----------



## HeidiBR

Do you have a photo of the Grinch? I think that would be about right.


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## Andros

HeidiBR said:


> Do you have a photo of the Grinch? I think that would be about right.


Harumph!!


----------



## Debbie from Milwaukee

Heidi:
This is the most terrific news ever! You and your husband have been through quite a lot, but you have also been blessed by extremely competent & compassionate docs (and grace from above as well). Will Luis need to be evaluated for either surgery or radiation after the beginning of the year? If so, I'm sure it will be relatively minor compared to what he has been through already. You said that he was extremely healthy prior to this rare cancer problem, so no doubt this has been a part of his recovery as well.

I bet marking the days off the calendar until Dec. 29th is your new advent calendar this year! I wish you and your husband the best over the holidays and beyond. Hey, maybe you and he can go for a short weekend getaway and REALLY relax once this whole chemo thing is over!


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## HeidiBR

Andros said:


> Harumph!!


OMG, a beautiful Maine ****! I want one or two!


----------



## Guest

So glad to hear the good news that you shared. As Andros said this will be a wonderful holiday for all. I am so proud that you and your husband has been blessed with good doctors and this miracle. You can always blame the weight gain on the holidays and worry about it after the first of the year! As of now I think you have a reason to celebrate!

Both of you take care of yourself and each other and continue to share your love and wonderful life together!

You both remain in my thoughts and prayers. Wishing you both a wonderful and joyful holiday!

Sending hugs,

Kay


----------



## Andros

HeidiBR said:


> OMG, a beautiful Maine ****! I want one or two!


I love the Maine **** myself. I love all animals! I did mean to ask about your burn?? Oversight on my part!

So....................how is your hand?


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## HeidiBR

Thank you everyone for all of your happy thoughts and comments!

As for my hand, it is healing nicely. Second and third degree burns on the top of the hand, and in the crease between the thumb and first finger. It doesn't hurt, but it is UGLY looking right now


----------



## Andros

HeidiBR said:


> Thank you everyone for all of your happy thoughts and comments!
> 
> As for my hand, it is healing nicely. Second and third degree burns on the top of the hand, and in the crease between the thumb and first finger. It doesn't hurt, but it is UGLY looking right now


Oh, gosh!! Slow to heal, isn't it? Make sure your FREE T3 is above mid-range. You cannot heal w/o sufficient T3 in your system.


----------



## HeidiBR

I will indeed make sure. Last time, I was above midrange. My dose was lowered a bit. We'll see next Friday.


----------



## Andros

HeidiBR said:


> I will indeed make sure. Last time, I was above midrange. My dose was lowered a bit. We'll see next Friday.


For most; keeping the FT3 above mid-range works best.


----------



## lavender

What a wonderful holiday blessing for you and your husband!

Andros, if I ever figure out how to get the photos off my phone, into my computer, and post them on this board, I will have to send pictures of my two lovely cats!


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## HeidiBR

I would love to see photos of your cats! Last year at this time, we lost our 18 year old cat Spot to (believe it or not) a chest tumor. His death I always believe kicked off my thyroid to be funky.


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## lavender

You poor thing! The passing of your feline friend! On top of everything else you have been through! It's too much!

My cat Milo sits on the back of my chair and has tried to crawl onto my head while I am on the computer (since he can not fit in my lap with the laptop)! He's a grey and white long haired cat who is about the same size as Andros' maine ****, and a giant baby!

Kali is a little trouble making sprite. She tries to type for me!


----------



## CA-Lynn

I adore pets. What could be better than being in front of the fire place on a cold winter's night surrounded by furry critters?


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## HeidiBR

After my husband recovers, I want 2 furry critters. My lap is so empty!

This was Spot: http://ils.unc.edu/~barrh/Spotback1.JPG


----------



## Andros

HeidiBR said:


> After my husband recovers, I want 2 furry critters. My lap is so empty!
> 
> This was Spot: http://ils.unc.edu/~barrh/Spotback1.JPG


OMG!! Spot looks just like our "cutie!" Goodness!! Thank you for sharing "Spot" with your forum family.


----------



## HeidiBR

Well, I never made it to the endo last Friday. The person who was supposed to take my husband to chemo got the flu. So... I called the endo and asked for an additional week prescription to get me through to my next appointment which is now on Christmas Eve. They were reluctant to do so. I pitched a small but polite fit and said, oh yes you are doing so, I cannot run out of medicine. So, they called it in to the pharmacy, and then the pharmacy decided to give me generic - which I didn't notice until I got home. Argh. I have been taking my 125 Synthroid and I will go and pick up the prescribed 112 today.

Nothing says Christmas like a trip to the endo


----------



## CA-Lynn

Hi, Heidi,

Maybe you should make a new year's resolution to find a new endo, or at least tell your current endo that you don't appreciate having to go ballistic every time you need a script.

Happy Holidays!


----------



## HeidiBR

CA-Lynn said:


> Hi, Heidi,
> 
> Maybe you should make a new year's resolution to find a new endo, or at least tell your current endo that you don't appreciate having to go ballistic every time you need a script.
> 
> Happy Holidays!


Hi Lynn!

Oh, yeah, I will be letting him know my extreme displeasure.
Happy holidays to you, too!


----------



## Andros

HeidiBR said:


> Hi Lynn!
> 
> Oh, yeah, I will be letting him know my extreme displeasure.
> Happy holidays to you, too!


I sure hope you do that Heidi!! How is Luis doing? How are you holding up?

Yes; we must do something about empty laps. By all means.

How is your hand?

Good to hear from you!


----------



## HeidiBR

Hi Andros -

We are holding up. Only one more day of treatment - next Wednesday. My hand is mostly healed. It is a bit ugly, but that's OK!

I love the photo!

Merry Christmas!


----------



## Andros

HeidiBR said:


> Hi Andros -
> 
> We are holding up. Only one more day of treatment - next Wednesday. My hand is mostly healed. It is a bit ugly, but that's OK!
> 
> I love the photo!
> 
> Merry Christmas!


Oh, wow!! Things have decidely taken a turn for the better in all arenas!! I am so so happy for the both of you. How is Luis emotionally? Good spirits and anxious to celebrate the holiday?

Hopefully your hand will look better w/ time; it is entirely possible. Burns are nasty, there is no question of this and I'll bet it bothers your hand to be even put in hot water. It will be sensitive for a long time, I fear but that is okay because you are in a better place right now.

Merry Christmas to you and Luis as well! We have much to be merry about!


----------



## HeidiBR

Just back from the endo. I have apparently hit the "sweet spot" with the meds, and actually, I do agree. I feel much better than when I started this journey.

TSH = 0.01
FT3 = 330 [230-420]
FT4 = 1.5 [.8-1.8]
Vit D = 95

Synthroid dose maintained at 112 since I was headed toward hyper on 125. I don't need to go back until March. I can work on taking off the 15 lbs. I packed on since my last appt in October. That is a result of nervous crap eating, and not thyroid.

Merry Christmas everyone, and thanks for being so supportive!

Heidi


----------



## Andros

HeidiBR said:


> Just back from the endo. I have apparently hit the "sweet spot" with the meds, and actually, I do agree. I feel much better than when I started this journey.
> 
> TSH = 0.01
> FT3 = 330 [230-420]
> FT4 = 1.5 [.8-1.8]
> Vit D = 95
> 
> Synthroid dose maintained at 112 since I was headed toward hyper on 125. I don't need to go back until March. I can work on taking off the 15 lbs. I packed on since my last appt in October. That is a result of nervous crap eating, and not thyroid.
> 
> Merry Christmas everyone, and thanks for being so supportive!
> 
> Heidi


Heidi!! Your labs look awesome. I wish everyone to have those labs. This is wonderful.

The pendulum has swung the other way; life will be good from now on!! Yay!


----------



## HeidiBR

Andros,

From your hand to God's ears 

Merry Christmas Friend!


----------



## Andros

HeidiBR said:


> Andros,
> 
> From your hand to God's ears
> 
> Merry Christmas Friend!


You both will remain on my prayer list for quite some time. Gotta' make sure our butts are covered, ya' know?

I am glad to be your friend. That is the best gift of all!


----------



## CA-Lynn

Heidi,

That's great news all the way around.

And thanks for being honest about the eating and extra pounds. We all go through that at one time or another. Now that things are under control, off with the pounds!


----------



## HeidiBR

Thanks, Lynn!

Yup, the weight gain is from devouring boxes of Mac and Cheese, candies - you name it. 15 lbs since 10/3. Yikes. Now that the thyroid is controlled, I should be able to take it off!


----------



## CA-Lynn

Hey, I could stand to lose weight, too. Good New Year's resolution. In fact, I'm buddying up with a friend via email to lose weight. Easy and doable goals. Well, maybe not THAT easy.

Amazing how anxiety can really do a number on the waistline!


----------



## HeidiBR

Hi all !

I hope you all are well.

I have a question for you all. I went to a psychiatrist last week because of general anxiety related to my husband's cancer. She diagnosed me with anxiety disorder coupled with OCD (I've had since childhood) - the two were contributing to depression she said. And prescribed Prozac.

The only experience I have had with an anti-depressant was Wellbutrin (Zyban) when I quit smoking. The normal dose is 300 mg and that dose made me feel so anxious, like I could fly to the moon. The Wellbutrin experience was also before I started thyroid replacement.

So... is there any considerations I need to pay attention to vis a vis hypothyroidism and Prozac? I know about the weight gain possibility and frankly, that might be enough to keep me from taking the drug in itself. I have gained 20 lbs since 11/11/10 from stress eating and carb cravings. I have never weighed more in my life (160 lbs, 5'7" which I know is not overweight,but very high for me and I can't fit in my clothes).

As of 12/24/10, my thyroid levels are excellent (see signature).

Thanks for any insight you all you offer. I am really ambivalent about taking the Prozac. Honestly, I am not sure I am indeed clinically depressed. Just so darn tired.

By the way, my husband is doing well. We had a bit of a scare on his last day of chemo on 12/29 when one of his blood tumor markers that had been normal since the first cycle of chemo spiked; we had to wait a VERY stressful week to retest the blood, which then came back normal and lower than the previous tests. Anyway, now he has normal tumor markers and has been recovering from the chemo. He gets a little stronger everyday! His hair hasn't started growing yet, but hopefully soon. He has his first post-chemo PET scan on 2/1 and they will also check tumor markers then, too. He probably will have a tumor remnant in his chest, but the PET scan will show if there is active cancer or not in the chest tumor and in the nodules in the left lung that they never were able to decide if they were inflammation or tumor. Please pray for NO CANCER! He so deserves to be done with active treatment.

Have a great day,
Heidi


----------



## Andros

HeidiBR said:


> Hi all !
> 
> I hope you all are well.
> 
> I have a question for you all. I went to a psychiatrist last week because of general anxiety related to my husband's cancer. She diagnosed me with anxiety disorder coupled with OCD (I've had since childhood) - the two were contributing to depression she said. And prescribed Prozac.
> 
> The only experience I have had with an anti-depressant was Wellbutrin (Zyban) when I quit smoking. The normal dose is 300 mg and that dose made me feel so anxious, like I could fly to the moon. The Wellbutrin experience was also before I started thyroid replacement.
> 
> So... is there any considerations I need to pay attention to vis a vis hypothyroidism and Prozac? I know about the weight gain possibility and frankly, that might be enough to keep me from taking the drug in itself.
> 
> Thanks for any insight you all you offer. I am really ambivalent about taking the Prozac. Honestly, I am not sure I am indeed depressed.


So wonderful to hear from you! Your last labs look really good! I would recommend that you have your ferritin checked as that can cause anxiousness if it is not 50 to 100 in the range.
Ferritin http://www.thewayup.com/newsletters/081504.htm

And, have you ever heard of total exhaustion? Huh? My humble opinion is that you should give yourself a chance for recovery here.

Have you read Prozac Nation? I have.

Are you taking Selenium, CoQ10, Omega III, Omega VI to help your body to recover from all this stress? Throw in some B-complex for the nervous system too?

Actually, I was thinking hard of you the other day and you and Luis are still on the prayer list.


----------



## HeidiBR

Hi Andros!

Yes, I was leaning toward the "total exhaustion" diagnosis, coupled with feeling fat and froozy and it is the middle of winter... All of that.

I think I just need a vacation. Really. Someplace warm.

I hope you are well, and thank you for your prayers!


----------



## Andros

HeidiBR said:


> Hi Andros!
> 
> Yes, I was leaning toward the "total exhaustion" diagnosis, coupled with feeling fat and froozy and it is the middle of winter... All of that.
> 
> I think I just need a vacation. Really. Someplace warm.
> 
> I hope you are well, and thank you for your prayers!


Yes; you do need a respite. You guys sort of did the vacation thing backwards if I recall! Now, you need another.

Some place warm ON the beach sounds really good to me also!! Just hook me up to IV lines of Virgin pina coladas. Ha,ha


----------



## lavender

I have tried anti-depressants several times myself and have not found them to be helpful. I also get a lot of undesirable side effects. My preference is to treat depression issues with therapy, lifestyle changes, and making sure there is not another medical reason for my symptoms (like thyroid). Anxiety and fatigue are normal responses to what you have been going through with your hubby. You might benefit from the support of a counselor. Meditation may also be helpful. I have found these two to be much more effective than medication myself. 
So glad to hear your husband has finished Chemo. I will keep him in my prayers.


----------



## CA-Lynn

Hi, Heidi,

Nice to hear from you again and glad to hear that Luis is doing well.

This is not intended as a diagnosis, but frankly I'm inclined to think you and Luis have been through the ringer the past month or so. There's a huge difference from being clinically depressed and being worn out and anxious over a major medical condition.

Medication for the OCD might be in order; there are a number of them out there. Prozac is broadly used for depression-anxiety-OCD. Tell you why I like Prozac: it opens a window to the mind so that you're susceptible to talk therapy. Don't be alarmed at the possible side effects. I know many who have taken it with great success. Many do NOT put on weight. Remember: what you read on the internet are the people with complaints and rarely from those who have no complaints.

You'll hear pro's and con's about talk therapy. My suggestion to you [and please don't construe this as medical advice] is to talk to a psychologist who specializes in Cognitive Behavioral treatment modality and see if you can get the anxiety under control. The psychologist should be able to tell if you warrant OCD medication, in which case s/he can refer you back to the psychiatrist [if you haven't begun the Prozac already].

Just my two cents. Though I like Andros' suggestion about taking a real vacation.

Keep us posted.


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## HeidiBR

Hi!

I am loving the Prozac so far; it is like a light switch was shut off on the carb and sugar cravings. I haven't eaten a sweet since Sunday, and have no interest at all in eating sugary stuff. It is amazing. For the first time in my life, I am enjoying being free from a sugar addiction. We'll see what happens with the OCD. I have high hopes.

Luis's PET/CT scan is next week. I hope I will be able to relax after it; right now I am a bit on pins and needles. Please let the tumor be dead. DEAD!


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## Andros

HeidiBR said:


> Hi!
> 
> I am loving the Prozac so far; it is like a light switch was shut off on the carb and sugar cravings. I haven't eaten a sweet since Sunday, and have no interest at all in eating sugary stuff. It is amazing. For the first time in my life, I am enjoying being free from a sugar addiction. We'll see what happens with the OCD. I have high hopes.
> 
> Luis's PET/CT scan is next week. I hope I will be able to relax after it; right now I am a bit on pins and needles. Please let the tumor be dead. DEAD!


We are pushing for "dead" on our end too. No more nasty tumor. Keeping fingers crossed and sending prayer w/healing thoughts.

Glad you are a happy camper. Hope all goes well for you also.


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## HeidiBR

Crossed fingers and prayers with healing thoughts gladly accepted! Thank you!


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## lavender

Glad to hear you have found some relief. It's just a matter of finding what works for each of us individually. Sending prayers and healing thoughts for Luis's scan.


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## HeidiBR

Thank you! I am surprised at the amount of relief I am getting from the med re: not having carb cravings. I wonder if it will last? And thank you Lavender for the prayers and healing thoughts.


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## HeidiBR

Hi all -

Well, the relief from the carb cravings lasted one week. When I increased the Prozac dose, they came back. Bummer. But, I do feel so much better. My anxiety is under control. I feel at peace with myself and the world 

My husband was supposed to have his post-chemo PET/CT scan two weeks ago, but he had a bad cold, so they postponed it. The doctor told us, "sure, have the scan." We get to the hospital and the radiologist is like, "Hell, NO. Inflammation and infection can light up on the PET like cancer." So, the scans are rescheduled for tomorrow, and we'll have the results on Wednesday. My husband is back to work starting today. He feels great. As far as he is concerned, he is DONE with cancer. Hopefully the scans will support that assertion. Two weeks ago his blood tumor marker tests were totally normal, and the lowest they have been. So... that is good news.

The Prozac has done wonders for my anxiety. It is so much more under control than is was before I started.

Now, I just need to get the weight under control. My thyroid is in a good place, so I am not fighting that. I started exercising again after 6 months of no exercise except for eating starchy carbs.It feels great to be back on a bike and in the water.

What a journey this has been. I am hoping and praying that it is OVER.


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## Andros

HeidiBR said:


> Hi all -
> 
> Well, the relief from the carb cravings lasted one week. When I increased the Prozac dose, they came back. Bummer. But, I do feel so much better. My anxiety is under control. I feel at peace with myself and the world
> 
> My husband was supposed to have his post-chemo PET/CT scan two weeks ago, but he had a bad cold, so they postponed it. The doctor told us, "sure, have the scan." We get to the hospital and the radiologist is like, "Hell, NO. Inflammation and infection can light up on the PET like cancer." So, the scans are rescheduled for tomorrow, and we'll have the results on Wednesday. My husband is back to work starting today. He feels great. As far as he is concerned, he is DONE with cancer. Hopefully the scans will support that assertion. Two weeks ago his blood tumor marker tests were totally normal, and the lowest they have been. So... that is good news.
> 
> The Prozac has done wonders for my anxiety. It is so much more under control than is was before I started.
> 
> Now, I just need to get the weight under control. My thyroid is in a good place, so I am not fighting that. I started exercising again after 6 months of no exercise except for eating starchy carbs.It feels great to be back on a bike and in the water.
> 
> What a journey this has been. I am hoping and praying that it is OVER.


So good to hear from you and the news about Luis is just awesome. The journey is never over but here is wishing you a very very good journey from now on.

You sound great also!!!


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## CA-Lynn

I detect a very positive change in you Heidi. Great going!


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## HeidiBR

Thank you both! I'm a bit nervous about this scan today - we'll have the results tomorrow.


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## Debbie from Milwaukee

So thankful along with others that Luis looks to be on his way to good health. Glad for you also that the thyroid symptoms and anxiety are resolving with appropriate medication. I think you first checked in with us around thanksgiving time last fall--and there continues to be great cause for thanfulness!

I also appreciate that you give us updates whenever Luis has one of these periodic checkups. I hope and pray that the news on the scan today is another good report. Hope your exercise routine and Luis going back to work make both of you feel that things are finally getting back to normal...


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## HeidiBR

Good, good, good, news!

The CT/PET scan showed that what is left of the chest mass is very small and 99% sure dead. The chest tumor used to be a massive 10 x 9 cm - it is now 8 mm x 2 cm.

There are still a couple of small lung nodules, but they think they are inflammation due to where the formerly giant chest mass was deflating and distorting the lung. This inflammation should decrease over time, now that the lung is properly inflated and healing.

Blood tumor markers are normal.

Luis is back to work. He'll have another CT scan at the end of March to see what (if anything) is up with the lung nodules. Since they are thought to be inflammation, they should be even smaller by the end of March.

He feels terrific and his hair is starting to grow back.

I have started exercising again (water aerobics and cycling/spinning) and I am really trying to eat better. I have at least 20 pounds to lose from my carb binging when Luis was sick. I think I might try Weight Watchers.

All in all, life is tons better than when I started this thread asking about a possible swollen thyroid. My thyroid seems to be in a good place right now.

Thank you all for your thoughts, prayers, help, and ears. I cannot thank you enough!


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## Andros

HeidiBR said:


> Good, good, good, news!
> 
> The CT/PET scan showed that what is left of the chest mass is very small and 99% sure dead. The chest tumor used to be a massive 10 x 9 cm - it is now 8 mm x 2 cm.
> 
> There are still a couple of small lung nodules, but they think they are inflammation due to where the formerly giant chest mass was deflating and distorting the lung. This inflammation should decrease over time, now that the lung is properly inflated and healing.
> 
> Blood tumor markers are normal.
> 
> Luis is back to work. He'll have another CT scan at the end of March to see what (if anything) is up with the lung nodules. Since they are thought to be inflammation, they should be even smaller by the end of March.
> 
> He feels terrific and his hair is starting to grow back.
> 
> I have started exercising again (water aerobics and cycling/spinning) and I am really trying to eat better. I have at least 20 pounds to lose from my carb binging when Luis was sick. I think I might try Weight Watchers.
> 
> All in all, life is tons better than when I started this thread asking about a possible swollen thyroid. My thyroid seems to be in a good place right now.
> 
> Thank you all for your thoughts, prayers, help, and ears. I cannot thank you enough!


Heidi............................thank you so much for this update. It just keeps getting better and better!!

Weight Watchers is an awesome program and most always works. Go for it.

You sound really good and I know Luis is thrilled to be out of the danger zone and back in the saddle.


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## Debbie from Milwaukee

Heidi:
A lot has transpired for your family in the last 5 months--much of it scary, but I am so happy that the prognosis for both you and Luis is increased health and happiness. Again, feel free to give us (hopefully positive) reports whenever Luis has periodic check-ups from now on. And it's also good to see that your thyroid is behaving and you are taking this nice lull to incorporate some more healthy habits for yourself as well.

Here is a link to a song I was recently introduced to, "Seize the Day." I find it inspiring myself; I'm sure it will strike a chord with you and Luis as well!






Take care,

- Debbie from Milwaukee

hugs4


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## HeidiBR

Good news from Duke today!

Luis's blood tumor markers are totally normal - and the two very important ones are lower than ever.

The CT scan showed that the giant chest mass (it used to be approximately 10 x 10 cm or 3.5 x 3.5 ") is now tiny - 8 mm (at little over a ¼"). It is same size as it was 6 weeks ago, so no growth = most likely totally dead.

The nodules in his lungs are stable from the last scan and are scattered, ill-defined and STABLE. The oncologist is confident that the lung nodules are just crap unrelated to the cancer (we all have lung nodules of some sort that would show up on CT scan).

The word stable is used six times in the very short CT reports. We've learned that short CT reports are the best, as there is nothing to report. Stable is a wonderful word in cancer treatment.

The doctor, physician's assistant, nurse and receptionist couldn't believe how good Luis looks. He looks totally and completely healthy. He feels amazingly well and it shows.

The oncologist is very happy with the results. She wants us to see a thoracic surgeon (the same one who did Luis's surgical biopsy) to see if the tiny lung nodules should be biopsied. The general consensus is that they won't be biopsied andwe came away with the idea that is purely a CYA action on the part of the oncologist.

Luis is free to get his port out whenever he wishes. He might wait until we see the surgeon at the end of April (earliest appointment we could get), but maybe not. The port removal is day surgery only.

He will return to Duke at the end of June for another CT scan and blood work.

If you've ever been to Duke Clinic, there is this very long, windowed interior walkway that leads from the parking garage to the clinics. Today it was raining and I was thinking that we have walked 3 seasons - fall, winter and spring - through that long corridor. We've walked it terrified and believing we were headed for the Oncology Clinic. I walked it the "diagnosis day" when both of my Clark's leather clogs tore to pieces and I had to duct tape them together (there's a fashion statement for ya). Some days it would take 10 minutes to walk the walkway as he walked so slow and with his eyes closed from tiredness. Some days he couldn't walk it at all and I dropped him off at the clinic door.

Today he blew through that walkway with a bounce in his step and so fast I could hardly keep up with him.

Hopefully, this journey is over. Thank each and every one of you for your support. This has been the craziest six months ever and while I would never want to repeat it, some really good things came out of it in the form of kindness and support I never knew existed.

Now we need to plan that Mexico vacation. I think the pina coladas are calling us.


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## Andros

HeidiBR said:


> Good news from Duke today!
> 
> Luis's blood tumor markers are totally normal - and the two very important ones are lower than ever.
> 
> The CT scan showed that the giant chest mass (it used to be approximately 10 x 10 cm or 3.5 x 3.5 ") is now tiny - 8 mm (at little over a ¼"). It is same size as it was 6 weeks ago, so no growth = most likely totally dead.
> 
> The nodules in his lungs are stable from the last scan and are scattered, ill-defined and STABLE. The oncologist is confident that the lung nodules are just crap unrelated to the cancer (we all have lung nodules of some sort that would show up on CT scan).
> 
> The word stable is used six times in the very short CT reports. We've learned that short CT reports are the best, as there is nothing to report. Stable is a wonderful word in cancer treatment.
> 
> The doctor, physician's assistant, nurse and receptionist couldn't believe how good Luis looks. He looks totally and completely healthy. He feels amazingly well and it shows.
> 
> The oncologist is very happy with the results. She wants us to see a thoracic surgeon (the same one who did Luis's surgical biopsy) to see if the tiny lung nodules should be biopsied. The general consensus is that they won't be biopsied andwe came away with the idea that is purely a CYA action on the part of the oncologist.
> 
> Luis is free to get his port out whenever he wishes. He might wait until we see the surgeon at the end of April (earliest appointment we could get), but maybe not. The port removal is day surgery only.
> 
> He will return to Duke at the end of June for another CT scan and blood work.
> 
> If you've ever been to Duke Clinic, there is this very long, windowed interior walkway that leads from the parking garage to the clinics. Today it was raining and I was thinking that we have walked 3 seasons - fall, winter and spring - through that long corridor. We've walked it terrified and believing we were headed for the Oncology Clinic. I walked it the "diagnosis day" when both of my Clark's leather clogs tore to pieces and I had to duct tape them together (there's a fashion statement for ya). Some days it would take 10 minutes to walk the walkway as he walked so slow and with his eyes closed from tiredness. Some days he couldn't walk it at all and I dropped him off at the clinic door.
> 
> Today he blew through that walkway with a bounce in his step and so fast I could hardly keep up with him.
> 
> Hopefully, this journey is over. Thank each and every one of you for your support. This has been the craziest six months ever and while I would never want to repeat it, some really good things came out of it in the form of kindness and support I never knew existed.
> 
> Now we need to plan that Mexico vacation. I think the pina coladas are calling us.


Heidi and Luis!!! God bless the both of you!! What absolutely wonderful news you have to share with all of us!!

I love your fashion statement. In retrospect, here and there, there will be a few things you can laugh about.

You sound like you are feeling good yourself? I sure hope so!!!

We will always be here for you guys but now that we are through the hard part; it will fun only times!!

Many hugs to two very brave persons!


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