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Stage IV need help

Forums General Melanoma Community Stage IV need help

  • This topic has 6 replies, 4 voices, and was last updated 2 months ago by MB.
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      Hello, I am writing to hopefully get some guidance. My wife has Stage IV melanoma with brain mets. In June of this year, she began tafinlar + mekinist and had gamma knife radiation to her brain. She appeared to be doing very well- regained energy, appetite came back, feeling “normal.” So she got a PET scan and MRI last Friday and we saw her oncologist today and learned that her cancer has spread (it was already “everywhere” and now just more) including more brain lesions. The oncologist said she needs to start opdivo and yervoy as soon as possible and will need whole brain radiation. I asked if she should continue tafinlar and mekinist and he said no but then I said I’d read about “triplet” treatment combining immunotherapy with BRAF inhibitors, and he said he would look into it and let us know. Does anyone have any recommendations or insights about this? I’m reading WBR often has horrible side effects and might not even work for melanoma. We are both TERRIFIED and I wonder if we should seek out a second opinion? How does that work if you are already being treated by an oncologist.. to seek out someone new at the same time? I am clueless in many ways. Thank you in advance for any help.
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          I am sorry you and your wife are dealing with this. It is known that the BRAF/MEK inhibitors often have a limited time of effectiveness. The goal with their use is often to decrease the tumor burden and start immunotherapy (most effective is the ipi/nivo combo) before tumor “work around” develops. So, yes. I agree that your wife should start immunotherapy ASAP – as in yesterday. There are studies in which patients did BRAF/MEK in combination with immunotherapy. Side effects can be problematic. I fear that the most important factor in your case is that the BRAF/MEK combo is not working so adding it to immunotherapy at this time may not provide any benefit.

          There are those here who have endured WBR with limited side effects. However, I would certainly see if they could use SRS to target groups of lesions at different times if necessary. You don’t say how many lesions there are so I don’t know if that is possible or not but some on this board have had many lesions dealt with in that manner. Of course, at a certain point, depending on the number of lesions, repeated SRS is tantamount to WBR. Further, there are those (and I am not fully behind it) who advocate using immunotherapy alone for brain mets. So – the point is – immunotherapy works in the brain. The further point is – many studies show that when radiation and immunotherapy and radiation are combined, the benefits are better than when either are used alone.

          Getting a consult with a melanoma specialist is sometimes the difference between life and death. Any reputable oncologist should help you attain one and NOT be offended. I don’t know where you live, but here is a link that starts as a primer for melanoma and available treatments with with a link at the end to melanoma specialists (with their contact info) I do not hesitate to recommend. Many will even do a telehealth consult. I am partial to Dr. Weber as he was my physician and is incredibly knowledgeable and a straight shooter.

          Primer for Current Melanoma Treatments – New and Improved Version 2022!!!!

          BUT…..for some hope.

          ASCO 2021 – Outcomes of treatments on advanced disease – Reasons for HOPE!!!!!

          Advanced Melanoma – A smattering of 2020 literature for Stage IV peeps

          The ipi/nivo combo WITH radiation to melanoma brain mets leads to improved overall survival!!!!

          Bottom line –
          Contact a melanoma specialist.
          Immunotherapy works in the brain.
          Radiation alone is not a satisfactory treatment for melanoma – however, when combined with immunotherapy, the effects of both are improved.

          Hope this helps. Many of the links I gave you have additional links within. My interpretation is often in red. The data is sited. The search bubble at the top left of the blog may be helpful to you. Your wife is lucky to have an advocate in you.

          I wish you and your wife my very best. celeste

              Thank you so much, Celeste. I really appreciate your help and support. She isn’t scheduled to start immunotherapy until next Friday (9/29).. I hope that’s not too long of a wait. I think that was the soonest they could get her in. I will keep you updated.
              Hi MB,

              Sorry to hear about this very scary and unexpected time for you.
              My partner was also diagnosed with brain mets (x4) this March. It was a huge shock. He’s only 38. He had emergency neurosurgery for the biggest one in his cerebellum which went well. Fortunately he was also able to have the SRS radiation to the rest which was straightforward with minimal side effects (just a couple of bald spots!). Completed 3 rounds of the double immuno (ipi/Nivo in the UK) but colitis stopped the 4th. Still going on the single drug every month.
              Follow-up scans in June showed the mets had all shrunk by >50%. Yay! He’s completely fine now – no symptoms, back at work, eating lots, living his best life. Had another round of scans last week so anxious about results but feeling pretty confident they’ll look good.

              Our consultant told us the dual combo immunotherapy has a 50% of working on brain mets (25% complete response, 30% partial response), even without radiotherapy.

              I also work in a hospital & have come across people who have had WBR – apart from an itchy/hot scalp, the side effects don’t seem to be too bad.

              Hope this somewhat reassuring to hear that brain mets can be kept at bay with immuno. I really hope your wife is one of those who responds well as this treatment is a melanoma gamechanger!

                  Thank you, Ash! I’m so glad to hear your partner is doing so well- it’s very comforting to know that there is hope with ipo/Nivo. I am eager for her to get started on it. Interestingly, she also had a large tumor removed from her cerebellum in May, which was successful. It’s been a roller coaster for sure! Ups and downs. Right now I am just praying she stays stable until the treatment begins. Watching her like a hawk, monitoring everything. This forum and website has been so helpful and I am grateful for the support.
                  Hello, I had a nasty journey with a non melanoma brain tumor with surgery twice and was receiving regular MRIs. Which is how we discovered my stage IV melanoma and whopper of a brain met in one go. Luckily, my neurosurgeon had one of the top melanoma specialists in the country on speed dial and actually at the major hospital I was already at at (big city) he literally dialed him first before talking to me. Sometimes those waits in doctors offices aren’t what you think! I did have that nasty rapidly growing met but an overall low tumor burden.

                  I immediately started ipi/nivo. Took a week in the hospital for very high fevers. Had a third craniotomy. Restarted combo. Had a single blast of radiation. Went on to finish four doses of combo. Completed two years of immunotherapy. Took some low dose steroids along the way.

                  Now that the use of immunotherapy has become more commonplace there are a lot of less experienced and more rural oncologist treating melanoma in eyebrow raising ways that make me shudder. I am not saying anything about your care at all. Just something I am increasing seeing online. So make sure you are seeing someone who is very, very experienced with melanoma and is involved with trials even if only as a consultant. They do this all the time.

                  Incidentally I do have issues, many of which are related to the original brain tumor not melanoma, but I am technically NED at the moment. The multi-prong approach immunotherapy AND surgery AND radiation with steroids to control side effects is often needed.

                      Thanks, Judi, I’m working on getting a consultation with a melanoma specialist. I’m glad to hear you are NED!
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