Stopping Immunotherapy for Metastatic Melanoma due to Toxicity
It wasn't long ago that I introduced myself here at Mayo Clinic Connect by saying I was actively and successfully undergoing Keytruda infusions for metastatic melanoma that had been detected in my lung approximately five years after a lesion had been treated on my face. If a person could consider themselves lucky with such a diagnosis, I suppose I'd have to say I was, as the lung nodule was a lone incidental finding on imaging that had been done for an entirely separate reason; I was able to undergo a biopsy and begin immunotherapy within two months of detection. Even luckier, the lesion was fully resolved within the first three months of treatment.
But I've often compared metastatic melanoma to Whack-A-Mole as you may successfully whack down one metastasis, only to have another pop up somewhere else. That is why it was proposed I stay on the full two year course of treatment, a plan I was totally on board with. Although I initially had what's referred to as an adverse event triggered by the therapy in the form of it causing an inflammation of my thyroid, I was treated appropriately and continued on with my routine infusions.
Things changed rather suddenly in September following a hospitalization for fever of unknown origin. This began a downhill course of gastrointestinal symptoms that quickly spiriled with a series of subsequent hospitalizations: C-diff, then CMV (cytomegalovirus) colitis, followed by a confirmation of ICI (immune checkpoint inhibitor) colitis. It was two months of some of the most intense pain I've ever experienced; I described it as childbirth combined with colonoscopy prep 24/7! There had been a very real chance of colon perforation or sepsis, but thankfully I was well monitored throughout this time. Needless to say, during this period my Keytruda infusions were place on hold.
When I met with my oncologist in December, after I had achieved some stability, he informed me that due to the toxicity demonstrated by my reaction the risk vs benefit of continuing immunotherapy was too great; the chance of recurrence of the symptoms I experienced too high. However, this really hit me: I felt as if my safety net of Keytruda keeping the recurrence of melanoma away was being pulled from beneath me. My oncologist went on to reassure me that I demonstrated a rapid response, I obtained a positive result within the first six months and that strong reactions such as mine are often linked to more favorable long term outcomes.
I've come to accept all of this as reassuring. Even in the midst of my current ICI flare, I was further encouraged after having met with a GI doctor who specializes in this condition and feels confident with treatment it can be managed, even to the point of eventually restarting immunotherapy sometime in the future.
Most encouraging of all, my PET scan yesterday was clear. I now remain as I had been previously: a large degree of optimism for the future combined with confidence that I can handle whatever awaits down this melanoma journey.
Interested in more discussions like this? Go to the Melanoma & Skin Cancer Support Group.
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@grammato3 I did send a question to AIM but never heard back k unless I am not sure where to find the response.
@songinmyheart54: check to be sure you included your correct contact phone number or email address. If you provided the latter, check your spam folder.
Melissa fields several inquires so if you don’t hear back in another week or so you can try submitting your brief question again. Let me know if you get a response.
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