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Breathing Problems & Sutent

Thehoffs5
Posts: 2
Joined: Mar 2011

My wife (34 yrs old) was diagnosed with Thyroid Cancer in June 2010. Had a TT and removed 60ish lymph nodes from neck with 50% being cancerous. During the pre-treatment for RAI they found micro-nodules are throughout her lungs. Were told not to worry because there were a lot of small particles and that a high dose of RAI would work. She received 250 mc of RAI. Every month checked TGB Levels and it was going down (i.e. 3,000 to 300 to 30).

Then December 2010/January 2011, breathing problems started. Doctors thought it was pneumonia, double pneumonia, some strange infection. After a Open Lung Biopsy told us that it was the Thyroid Cancer causing the problems. The biopsy showed fibrosis, thyca, and inflamation.

She has on 6 liters of continous oxygen. December was only 2L, then Jan/Feb 2 to 4 liters. Seemed like breathing was just getting worse every month. Doctors decided to try Sutent. Her breathing appeared better during this 1st cycle. Then went on the 2 week off period, breathing went back to just as bad as before treatment. Starting 2nd cycle of Sutent today. Asked doctor and they said that they had hoped that breathing would not have gone back to bad during 2 week off period.

All the doctors say that they have no experience with someone this bad and that they gave Sutent before knowing for sure if resistant to more RAI. We get told two schools of thought. 1)More RAI in August 2011 or January 2012. 2)Stay on Sutent.

Because we see improvement when on Sutent we think Option 2. Scared that at some point it won't be effective and breathing won't get better.

Looking for anyone in similiar boat that can share experience.

Brian

LBlackman
Posts: 113
Joined: Mar 2011

Thyroid cancer is one of the least common types and I have come to learn the doctors are not as use to some of the symptoms as they don't see them as much. There are times I can't catch my breath, but I would definately do alot of research (as I see you are) with groups and online. Only you can be an advocate for your health. I found out some information and shared this with my Dr. who was clueless. Your wife is lucky to have you and I wish you both the best. Sorry I couldn't be more help, but there are alot of people on here with alot of knowledge.
Best wishes to you both
Lynne

john1960
Posts: 8
Joined: Apr 2007

Hi, Brian - firstly, I'm sorry to hear that you and your wife are having to go through this. It can really be a challenge. She's lucky have your support!

I was diagnosed as having thyroid cancer that had metathesized to my lungs and other places in December, 2006, when I was 46 years old. I underwent radioactive iodine ablation in January, 2007. Afterwards, it was discovered that, for whatever reason, my thyroid cancer material was not "radiation hungry" and could not be treated by standard methods.

I started looking for clinical trials. I have been on a cycle of 50mg of Sutent (four weeks on, two weeks off) since April, 2007, as part of a clinical trial run by the University of Chicago.

In that time, I've had no new tumors and some slight shrinkage in the existing ones, so the disease is considered stable. This stability is the goal of my clinical trial; it's not a cure, but a treatment that keeps me going until an actual cure comes along.

I've experienced the usual side effects of being treated with Sutent. This includes Hand-Foot Syndrome, anemia, diarrhea, fatigue, thinning hair, lost of hair pigment, and chest pain, among other things. I've found things that help with these side effects to a greater or lesser degree. They're all worth it because I'm still here!

It's good to hear your wife's breathing improves on the Sutent. That implies that she's getting some shrinkage.

Your wife is the first person I've encountered who is also using Sutent to treat thyroid cancer. I know there are many more people in my clinical trial, but I don't know the numbers or how they are doing.

I guess I can't give you any specific advice. I hope it helps some knowing that you and your wife are not alone in this.

My thoughts and prayers are with you both.

John

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