Mar 10, 2011 - 10:24 pm
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.