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Brain mets slow growing? And sorry, but a lengthy update on how I got to now!
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Brain mets slow growing? And sorry, but a lengthy update on how I got to now!

› Forums › General Melanoma Community › Brain mets slow growing? And sorry, but a lengthy update on how I got to now!

  • Post
    • January 15, 2021 at 10:47 pm
    Rosiepup
    Participant
      Sorry I’ve probably shared a lot of this before, and sorry too that I’ve not been on for a while! But any thoughts/advice/links, would be greatly appreciated! Thanks

      March 2014-mole on right ankle removed and Melanoma confirmed. Wide excision carried out and failed skin graft, unfortunately. But at this point they felt sure that margins were clear.

      March 2015-I discovered lumps in my right groin, and, being a nurse, immediately feared the worst. And after needle biopsies, this was confirmed. I was booked for a total groin lymph node dissection.  Prior to surgery, from the plastic surgeon, I had a PET scan and was given the devastating news it had also spread to my spleen and possibly liver. It was therefore changed to partial removal and I had daycase surgery and was started on dabraf/trametinibtargeted therapy within a week!

      This was the treatment that worked really well, body CT scans just got better and better!????????until 2yrs ago.  Doing well I thought, then I had an MRI brain scan, and a 5mm lesion was found and stereotactic radiotherapy carried out, November 2018. And at this time it was recommended I stop the targeted therapy and change to combination immunotherapy, ipi/nivo. This is where I find I now struggle with where things are now.????????????

      I took my last dose of dabrafinib/trametinib on the Sunday and had my ipi/nivo infusions on the Monday. So in my mind, I effectively had 4 drugs in my body at the one time. I took very unwell with breathing difficulties within a week. And ended up in hospital.  At first they thought it was pneumonitis but it wasn’t, I had bilateral plural effusions! Which eventually settled with water tablets.

      As a result, the combined immunotherapy was stopped and after everything settled, I was started on nivolumab alone, monthly. I continue on this treatment but I’ve had possible issues with a further 2 small brain lesions in the occipital lobe, which although very small, and slow growing, are increasing in size. In two and a half years they have grown to 8mm and 4mm. I just got my latest MRI head results yesterday! My consultant is waiting to hear back from the neuro oncologist to see what the plan is

      I wondered what your thoughts are? I know more stereotactic radiotherapy is a possibility. But I’m a bit concerned about it. My original brain lesion, which was in the left hippocampal, that was zapped two and a half years ago, is consistently getting slightly bigger? It’s been thought this was radio necrosis but could it be tumour?

      I have also raised the question about adding the ipi back to the nivo, as I’ve read this combination has better success with brain mets?

      Sorry, War and Peace finished ????????But I’m hoping to write the second volume! With any help and advice you have?</p>
      <p class=”p1″>Thanks </p>
      <p class=”p2″>????????????????</p>

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        • January 16, 2021 at 9:16 am
        Rosiepup
        Participant
          Sorry I also meant to say I’m in Scotland and some treatments may not be available here.  But any suggestions would be greatly appreciated! I will hopefully be hearing what the plan is next week, so I would really like to be as armed with information as I can be! Thanks 🙏👍
          • January 17, 2021 at 9:20 pm
          MelWave
          Participant
            Hi Rosie,

            From what I know (mostly from reading this forum and some articles) SRT with Ipi/Nivo with standard dosing (3/1 mg) are the standard when treating brain mets. I don’t think you will be unreasonable to insist to try adding Ipi again. The fact that you once have  had a side effect doesn’t mean you will have it again.

            The site IS glitchy. Hopefully someone more experienced will be along shortly with more info.

             

            Best of luck.

            • January 17, 2021 at 9:39 pm
            Rosiepup
            Participant
              Thanks so much for that Melwave👍 I have been thinking that too but my consultant isn’t keen. She would rather go potentially with stereotactic x2. But it’s down to the neuro oncologist.
              Also I don’t know if anyone else has had this but I literally stopped the Debraf/mek on the Sunday and then had  the ipi/nivo infusion on the Monday?

              Thanks again for your helpful message Malwave👍

              • January 17, 2021 at 9:50 pm
              Rosiepup
              Participant
                Sorry Melwave for the spelling at the end there!🙄❣️ Also can you remember any articles? I did get a couple from this site but if there’s any others that would be greatly appreciated. Thanks
                • January 17, 2021 at 10:31 pm
                MelWave
                Participant
                  Hi,

                  Here is some discussion from the ASCO conference this summer discussing the recent advances in therapy. The relevant bit is where they discuss flipped  vs standard ipi nivo dosage and one of the consultants states that for patients with brain Mets standard dosage is standard of care still.

                  https://www.onclive.com/view/melanoma-experts-make-sense-of-asco-2020-data-and-advise-on-clinical-implications

                  here is a review of current practice in treatment of  brain Mets:

                  https://pubmed.ncbi.nlm.nih.gov/32350685/

                   

                   

                   

                  • January 17, 2021 at 10:40 pm
                  Rosiepup
                  Participant
                    Thanks so much for that 👍
                    • January 18, 2021 at 1:56 pm
                    Bubbles
                    Participant
                      Sorry you are dealing with all of this Rosie.  Melanoma is a persistent B!$(%!!!!!  Here are my thoughts –

                      1.  Though the lesions have grown, perhaps the continued nivolumab (Opdivo) is keeping them at bay since they have been very slow growing.
                      2. Add SRS and carry on!
                      3. The more confusing option is that they are not melanoma but some other slow growing tumor type.  In the brain that is very difficult to ascertain given the complexity of biopsy – so you’re probably back to SRS as a treatment option anyway.  Given your history, they are probably melanoma, but melanoma patients can develop other things.
                      4. There have been some occasions where ipi/nivo was repeated after a bad response and was tolerated by patients.  Some docs will try the combo again with very close observation and the rapid addition of steroids and other care if needed.  That would require a detailed conversation with your doc and a very clear treatment plan.

                      Here are some links that you might find helpful:

                      My most recent post on brain mets:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/05/the-ipinivo-combo-with-radiation-to.html

                      Here are tons of links on brain mets – scroll through to find more recent posts and those you feel are more pertinent:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets

                      A post with links to others regarding those with a prior adverse reaction or preexisting immune related disease attaining success with mmunotherapy:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/03/patients-with-preexisting-immune.html

                      The search bubble on my blog might be helpful.  Hope this bit helps.  I’m sure your docs will help you develop a good treatment plan in the coming week.  Let us know.

                      Wishing you my best.  Celeste

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