Was told today by my radiation oncologist that my best option right now is to see if I am eligible for the immunotherapy clinical trial.
I am looking for treatment either in NY or Boston if possible as I live in CT.
I previously had surgery to remove 1 nodule, and I had SBRT (cyberknife) for treatment on 5 nodules. The SBRT did destroy the nodules, The problem is that I have 2 new nodules that developed in the last three months. I have had a total of 8 nodules since my diagnosis in Dec 2011. Was told today that they could do SBRT again, but because of the likely hood that more nodules will develop and one can only have just so much radiation before side effects appear, they dont think its something I should consider because of side effects.They dont believe I am a candidate for surgery.
The radiation oncologist basically told me that while I'm feeling well,to do things that I've always wanted to do, say things to people that I've always wanted to say.He said we dont know how long anyone has to live but the best part of SS is that it is very slow-growing.
To say the least, I was quite upset during my discussion with the oncologist.
So, my questions are: Has anyone tried the immunotherapy for SS in lungs? If so, was it successful?
Are there any trials in NY or Boston also I am willing to travel.
I understand that not everyone is eligible for the trial need to meet the criteria, have to have the right protein.
Has anyone has any successful chemo besides the typical chem for SS which I had in Feb 2012.
Thanks in advance, need advice.