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Lin wilki

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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.   

 

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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

 

 

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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

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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

 

 

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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

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