Lin wilki Posted December 6, 2019 Share Posted December 6, 2019 Stage !V adenocarcinoma - first line of treatment is clinical trial. 5 treatments of stereotactic radiation, followed by bi monthy infusions of immunotherapy. Opdivo every infusion, and Yervoy added every 3rd infusion. Having my 6 month scans. First PET scan since treatment began. Hoping ...praying.... for good news. . Since I have plenty of annoying side effects from immunotherapy ..dry mouth, constipation, itchy, dry skin, LOTS of muscle pain ..breathlessness and cough --- I sure hope it's worth it! Please keep good thoughts for me! I am happy I can go to this forum and reach out to others like me! It makes all the difference in being able to unload my hopes and fears. Will update results next week. Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 6, 2019 Share Posted December 6, 2019 We’re all here with you. Hang on. No easy way through this waiting part. Try & keep yourself busy doing normal things, and find some luxurious fun things to do. You got this! Link to comment Share on other sites More sharing options...
DFK Posted December 6, 2019 Share Posted December 6, 2019 Wishing you the best results with that immunotherapy cocktail and chaser of side effects. I am sending you positive loving thoughts to ease the burden of waiting. We should both get our results from our Scans next week. I had mine done last week and elected to wait the two weeks for my next MD appt. to discuss results. For some strange reason, I am totally ok with waiting. I wanted a drama free Thanksgiving and some time with my family where my cancer wasn’t present and center stage. Take Care, DFK Link to comment Share on other sites More sharing options...
Lin wilki Posted December 6, 2019 Author Share Posted December 6, 2019 You are brave - waiting for results! Hopefully good news for us! Then can sit back and enjoy the holiday season Link to comment Share on other sites More sharing options...
Tom Galli Posted December 6, 2019 Share Posted December 6, 2019 Lin, This is the first I've heard of a trial of stereotactic radiation coupled with immunotherapy. My lung cancer was very persistent with 4 recurrences after what were supposed to be NED producing treatments. My last treatment was stereotactic radiation and in my research at the time, literature discussed an unproven secondary effect called the Abscopal Effect. Essentially, the high power focused radiation disrupted the cancer cells in such a way that alerted the bodies immune system to recognize and destroy other or future metastasis. I believe my stereotactic radiation alone stopped future recurrences. My last treatment was in March 2007 and I've been NED since. I do very much hope your PET scan shows NED and I really, really hope it stays NED. Stay the course. Tom Link to comment Share on other sites More sharing options...
Lin wilki Posted December 6, 2019 Author Share Posted December 6, 2019 Promising info. I would be happy with STABLE at this point Fingers crossed Link to comment Share on other sites More sharing options...
DarlaK Posted December 6, 2019 Share Posted December 6, 2019 Tom, Abscopal Effect - Is there anything recent on this theory/effect? - Stereotactic radiation alone stopped future recurrences - So in order to get Stereotactic radiation the cancer has to come back somewhere where they can do radiation? Darla Link to comment Share on other sites More sharing options...
Tom Galli Posted December 7, 2019 Share Posted December 7, 2019 Darla, Lin’s mention of a trial is the first I’ve heard about validating the theory. My knowledge started with a lengthy discussion with a radiation oncologist at a Lunch and Learn. In my case, this doctor believed the stereotactic radiation alone extinguished recurrences but his rational was theoretical. Now a trial has a chance of moving from theory to practice. On stereotactic radiation, some have it in place of surgery alone or in combination with chemo as first line treatment. Mine was a fourth line treatment without chemo. Radiation oncologists are getting aggressive with the method. Some treat Stage IV disease “spot welding” or “scarring down” tumors as a curative approach. Why not fry tumors? There is no surgical risk. I bet health insurance doesn’t cover stage IV because it is not a standard of care. Stay the course. Tom Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.