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Radiation and Clinical Trial


#1

Hello figthers! I've been fighting since Oct 12. It orginated and continues to be in my lungs. I had a left obectomy (aim chemo & rad post surgery) and it's now in my right lung. I did 4 rounds of high dose ifex which killed 2 tumors. I now have 5 and one tumor grew from 4 cm to 9 cm in two wks . Going to start radiaton to the largest this Thursday and then gemcitabine and docetaxel with the morab trial. Has anyone had quick relief with a tumor 9 cm or larger and it stabilized after radiation? I'm in a lot of pain now. Also, has anyone had the chemo that includes the morab antibody? Any success? Thanks for your thoughts!

**My visit to Memorial Sloan last week went okay. They suggested radiation (they mentioned that synovial tumors respond well to radiation), then the morab trial, the NYESO study and also votrient. I'm not quite sure my immune system is the right shape for the NYESO study but will find out from my Doc.h7b8 ni


#2

It sounds aggressive. Did the 9cm tumor grow during chemo or after it was discontinued? Which type of radiation are they offering? I heard positive things about SBRT. I had IMRT on my first met in the right lung in 2008. I can't comment on pain relief because I didn't have pain. The tumor was removed surgically right after radiation. I developed fibrosis and last year, early stage breast cancer on my right breast. But on the positive side, only one small tumor grew in my right lung since 2008 while tumors kept appearing in my left lung. I feel like my right lung became bad soil for synovial sarcoma growth thanks to the radiation...


#3

I was on Votrient for 21 months when it stopped working. They stabilized quickly and it took about 6 months for the tumors to begin shrinking. At 9 months they were too small to monitor every other month and I went to 6 month reviews. Everybody is different. Good luck! I'm off to NIH today for my first visit on the NYESO trial.


#4

Elodie ~ The tumor started growing after the chemo which is so scary. I hear that rad works really well on synovial tumors which is refreshing to hear! God willing my right lung responds well and that all the tumors start to shrink although they are only radiation the one tumor. The type of radiation is the conformal rad therapy. Have you ever heard of that? From what I understand, it targets the tumor and also shoots direct radiation through the large tumor itself inside I had rad on my lower left lung and I"ve never had prob with the area and a reoccurence in the liquid sack that has developed in that area.

JImk ~ Good to know about the votrient. I"d like to do the rad and something with it but apparently I can't. The chemo trial may not be available for my tumor type now and they aren't sure if radiation can be done in conjunction with the chemo trial. Disapointed about that but standard of care chemo is still an option, Just done know how well this cocktail (gem and tax) will work on such an aggressive SS. Good luck in NIH, that sounds exciting and makes sense to me!

Thank you for your help!!!!!! Just got past a few really difficult days, whew!


#5

Here is an article that explains different types of radiation therapy and compares some of them:

http://www.ncbi.nlm.nih.gov/books/NBK55731/

Good luck!