Oct 07, 2012 - 9:21 pm
Looking for feedback from anyone who might have had a simillar recurrance and or same treatment.
I have metastatic spread from SCC / right tonsil/ mets to lymph nodes in neck.
The spread is to the lymph nodes in my Mediastynum (outside of lung) and several tumors in my right side of my lung. Doc's think it was probably there at the same time of my original diagnosis, but so small, it never showed up on any scans until now. NOTE: if they were there at time of original diagnosis, it took almost 2 years for them to grow to the tiny state they currently are.
The fact that it is in my nodes outside of the lung makes it pretty dangerous, VS just having it in one of the lobes in my lung where it could be surgically removed.
My treatment is considered a trial, not because the meds are experimantal, just a trial to see the difference between the US and European versions of the meds combined with adding 5FU to the mix.
My treatment is 3 drugs given in the following cycle.
First treatment over one day is Carboplatin and Erbitux, and then I am sent home with a 4 day infusion of 5FU.
One week later I receive just the Erbitux, and one more week later I receive just the Carboplatin. One week later I repeat with the 3 drugs at once and the cycle keeps going in the same pattern for 22 weeks.
In short, I am looking for any success story with tumor shrinkage / remission ETC. I am also looking for side effect stories. The first 5-6 days went really well, followed by one bad bout of diareah, and severe mouth sores and now sores appearing on my scalp and face.
My docs say I can stay on this treatment as long as there are NO new tumors found, or no growth of existing tumors over 20 percent. If for some reason I have to come off this trial, they say there are 5-7 other drug combos they can try.
I am of the opinion if the first option which I assume they think is the best, does not work, this will be the beginning of my demise??
I hope my unorganized jibberish makes some kind of sense to someone out there.