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Stage IV melanoma: What's your experience with immunotherapy?

Cancer | Last Active: Aug 12, 2021 | Replies (32)

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@emmasmimi123

I had initial misdiagnosis of TNBC, changed to Melanoma with lung, liver, breast, bone and small tissue involvement. After four immunotherapy treatments, Pet Scan showed great results in liver, breast, lung and initial tissue on shoulder, but new places along the spine. Is it unusual to have positive & negative results?

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Replies to "I had initial misdiagnosis of TNBC, changed to Melanoma with lung, liver, breast, bone and small..."

Sounds like you had some good news but sorry to hear about new places on your spine.

What immunotherapy treatment did you have - Opdivo, Yervoy, or some combination? Did you have any side effects after each treatment?

I had both Ipilumap & Nivolumab, four treatments 3 weeks apart. I start with one monthly treatment of a stronger dose of one drug tomorrow. Side effects included flu like symptoms & fever the first & 2nd treatment treatments and fatigue. Dr. warned fatigue would be the worst.

@emmasmimi123, I hope you'll also ask that question about positive and negative results of your oncologist. I would be interested in what you learn. I'm also tagging @bboseski12 and @texastribble on this discussion.

You may be interested in this related discussion that @mlenney167 started:
- Stage IV melanoma: What's your experience with immunotherapy? https://connect.mayoclinic.org/discussion/stage-iv-melanoma/

Emma, when do you meet with your oncologist again? How many more treatments do you have?

I was told that because I was actually showing progress I would not be enrolled in a clinical trial. I wondered about the cancer vaccine and immunotherapy trial

If there are new areas of disease that were not identified on previous imaging studies it is considered disease progression. With immunotherapy drugs like Yevory and Nivo there can be what is called “ inflammatory response” but generally if there are multiple areas of new disease the oncologist should try an alternative treatment. Vaccines are an option but most of them are only used in clinical trials.
Try to remember all drugs have to go through the clinical trial process for approval. It wasn’t that long ago that I worked on the studies for the very same drugs you are receiving as standard of care now. Best of luck!

Thank you for your comments. After another treatment I will have another scan. If it shows continued progression should I insist on an alternate treatment plan?

Thanks for your reply. Treatment 10/5, Scan 10/18. Yes I will ask him on the next treatment day what he is planning on if there continued disease progression. I’m feeling OK, some back and leg pain and of course, fatigue. Not debilitating.