Immunotherapy treatment for Melanoma with Metastasis

Posted by emmasmimi123 @emmasmimi123, Sep 4 6:24pm

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?

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?

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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.

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@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?

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@colleenyoung

@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?

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It sounds like you are starting the maintenance phase of dosing for immunotherapy. Congratulations! This should mean you have had interval re-stagging imaging studies such as PET/CT or plan CT that revealed stable disease “no growth/metastasis” or response “ decrease in tumor burden or “ shrinkage”. Not to mention you tolerated the immunotherapy without any significant side effects.
This is great news!

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@bboseski12

It sounds like you are starting the maintenance phase of dosing for immunotherapy. Congratulations! This should mean you have had interval re-stagging imaging studies such as PET/CT or plan CT that revealed stable disease “no growth/metastasis” or response “ decrease in tumor burden or “ shrinkage”. Not to mention you tolerated the immunotherapy without any significant side effects.
This is great news!

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Unfortunately no, new hyper metabolic metastasis in neck, chest and abdomen as well as osseous structures consistent with progression of disease, from PetScan report. I’m wondering if there is an additional intervention or therapy.

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@emmasmimi123

Unfortunately no, new hyper metabolic metastasis in neck, chest and abdomen as well as osseous structures consistent with progression of disease, from PetScan report. I’m wondering if there is an additional intervention or therapy.

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I’m so sorry to hear this terrible news. I hope there are treatment options to consider. Sending prayers your way

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@mlenney167

I’m so sorry to hear this terrible news. I hope there are treatment options to consider. Sending prayers your way

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Thank you. Just met with Dr. Will continue with planned treatment and scan again in 2 months. He definitely wasn’t as concerned as I was. Trying to stay positive!

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@emmasmimi123

Thank you. Just met with Dr. Will continue with planned treatment and scan again in 2 months. He definitely wasn’t as concerned as I was. Trying to stay positive!

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Staying positive is key! Are you at Mayo Clinic …. wish we were.

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@emmasmimi123

Unfortunately no, new hyper metabolic metastasis in neck, chest and abdomen as well as osseous structures consistent with progression of disease, from PetScan report. I’m wondering if there is an additional intervention or therapy.

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I’m sorry to hear that. Did the oncologist do any molecular testing on the tumor tissue to see if you have any targetable mutations? An alternative treatment option are clinical trials. Generally you will be required to have a “washout” period prior to enrolling. This means no treatment for either 2 or 4 weeks.
I would ask about potential clinical trial options or start researching some clinical trials in your area at Clinicaltrials.gov.
Good luck

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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

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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!

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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?

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