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I was diagnosed in January of FY20. Unknown primary of my parotid gland. Anyway fast forward to 6 months ago. I was on IPI/NIVO and doing fine. Got colitis, then myositis. The doctors dropped the ball at MDA and didn’t run a MRI like they always have. Blamed COVID and pushed to a different doctor that misdiagnosed me with arthritis. So I did not have immunotherapy during this whole time. 6 months of nothing. So I went for a MRI and was told I need gamma knife but when I went back for surgery, I was told Whole Brain was the only thing left. Tumors are 23 and 4 are 2 cm. They said they would consider IPI/NIVO again since I had a good response but want to put me on a Chemo drug while I take the or if I take Whole Brain. They said to prepare for end of life. Confused. What should I do? What would you guys do?
I am so sorry you are facing all this. While the science of treating melanoma has improved greatly over the years, so much of what we choose as treatment, the order we choose to do it in, and all that – boils down to personal preference. Whether or not to do WBR is a personal decision. Only the person facing it at the time can really speak with any authority. I do know that some here have thrived after having been dealt similar cards and were treated in that manner. “Barb” whose handle is “sister of patient” – recently noted this:
Not 5 years yet but in the 5th – so happy to report that my sister, Leisa, remains NED!!!
The site’s changed so much and most of the profile info seems wiped out (maybe it’s there and I can’t find it) but I’ll just add that this is NED after a huge tumour load in bones and organs and hundreds of micro-mets in her brain. Immunotherapy (mostly nivo) and WBR did it all!!!
Please, never lose hope ..!!.. though I know that’s much easier said than done!!
Big hugs to all. Barb
Will be holding you in my heart and wishing you my best ~ whatever you decide. celeste
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