Monitoring while on Sorafenib

Hi everyone, just got home from seeing the oncologist. A little background: metastatic pap thyca. TT in 2007, 2 neck dissections, 2 RAI, non-avid. Tg has never gone down below 5, trending up, now 24. I have persistent neck node involvement, lung nodules, and hilar nodes (in chest, outside the lungs) that are PET positive. Instead of a third neck dissection, my surgeon suggested a systemic treatment that may address all fronts. The oncologist I saw today suggests starting me on Sorafenib (Nexavar), but he said he would monitor my progress with chest ex-rays and Tg only. He thinks PET scans deliver too much radiation for someone who's already had a lot.
If you are on Sorafenib or any other oral chemo for lung nodules, how are you monitored? Any opinion on the subject of PET scans and radiation exposure?

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I also am non-avid so have to be followed with pet scans. I have lung nodules discovered a year of my last pet in December they are stable. My endo and ENT surgeon suggest just following them for now. I do not know what sorafenib is and whether it is a proven treatment. There is a doctor at University of Penn who is doing trials on lung meds....her name is dr marcia Brose. If my situation changes I will be going to see her and find out about her treatment. I have heard that she has some success but that there are side effects with this treatment.

I also have concern about the amount of radiation I receive doing these Pet scans. I wonder if a regular chest xray can pick up these small lung nodes? I will ask my endo next time I am there. Tg is not always a reliable way to monitor recurrence according to posts I have read on this site. Maybe others can give us some input? Since we have lung mets then our Tg will not be zero......what is the number where we should be concerned or should we just be concerned when the Tg changes?

I will be very interested in hearing about your success with this treatment!

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Hi, Sorafenib is a chemo that is taken orally, in daily small doses, over a long period of time. It is now fairly commonly used for treating thyca in patients for whom RAI has not worked. Sorafenib does not cure thyca, but it slows down the growth of tumors for many patients. My doctors have delayed recommending it because my nodules were stable for a long time, but their recent growth and increased PET signature is worrisome and I want to do something before things get out of hand... There are many clinical trials out there, but I think I want to start with a proven treatment first, and a treatment that is covered by my insurance. There should be other options later if need to go there. The oncologist is telling me that the side effects, different for every patient, can be minimized with an adjustment of the dose. So, we'll see...
When non-avid, thyca tends to put out less Tg, or even none at all. So yes, it is unreliable, but if you do have Tg, it is not the number but the changes that count, i.e. if it keeps going up it is an indication that the cancer is active. It is the rate at which it goes up that the doctors look at over a period of time.

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