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New to this forum, Brain met question and help
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New to this forum, Brain met question and help

› Forums › Cutaneous Melanoma Community › New to this forum, Brain met question and help

  • Post
    • February 17, 2019 at 11:45 pm
    Zoe6565
    Participant

      Hi everyone!

      It's my first time posting here on behalf of my husband! for the past few months since my husband progressed to stage 4, this community has been a tremendous source of help and hope for both of us!

      quick background:

      First diagnosed Sep 2017, 6 mm nodular melanoma on scalp

      April 2018: progressed to stage 4 with bone mets on right shoulder

      August 2018: Successful surgery to remove the shoulder mass

      September 2018: clear scan/brain MRI

      October 2018: 2 big lumps started to grow very quickly around the surgery site, Ct scan confirmed 3 big masses around 5-7 cm (this time very agressive).  following CT and MRI confirmed nodules in lungs, scalp and small mass in the brain.

      After this point, he started the IPI/Nivo combo, not too many major side effects except for Liver enzymes elevated, which lead him stop the treatments and go on prednisone to calm everything down. after the first treatment the mass on the shoulder grew very very large. So his oncologist decided to resume the treatment (he got the second infusion about 3 weeks ago). We noticed this huge mass has been now softer to touch and quite smaller (he also had radiotherapy to the mass due to it's rapid growth).

      Now my quistion is about the spot in the brain. the second MRI on Feb 8th showd it has increased in size from 4mm to 9mm, nothing new!

      his doctor is suggesting,

      Wait and watch for the third treatment to work!

      Get the spot treated with radiotherapy!

      thanks everyon for reading this, any thoghts would be helpful!

      God bless you all

       

       

       

       

       

    Viewing 5 reply threads
    • Replies
        • February 18, 2019 at 1:33 am
        Bubbles
        Participant

          Sorry you and your husband are dealing with this, Zoe.  However, your doc (as best as I can understand from your post) seems on track.  Immunotherapy DOES work in the brain!!  However, we have also learned that when radiation is COMBINED with immunotherapy the response is greater than when either immunotherapy or radiation is used alone.  Here are a zillion posts/articles that may help explain: 

           https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy  

          Hope that helps.  Many of us on this board have dealt with brain mets and most of us were treated with very specific radiation to the met via gamma knife or stereotactic radiation combined with immunotherapy.  

          Here is a primer I put together regarding melanoma treatments generally that you may find useful:

          https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

          I wish you and your husband my best,  Celeste

            • February 18, 2019 at 2:59 am
            Zoe6565
            Participant

              Thanks a lot Celeste for your quick and informative response! I’v always been reading your inspiaring and informative posts, and it’s been such help and hope for us! 

              Would you please let me know if there is any common or known side effects for These two types of radiotherapy?

              many thanks!

              • February 18, 2019 at 1:20 pm
              marta010
              Participant

                Hi Zoe – my husband has had 5 gamma knife treatments with little immediate side effects.  His major complaint is with the head frame placement needed for the procedure.  Post treatment he experiences pressure at the pin sites and fatigue which generally resolves within a few days.  He has experienced radiation necrosis/brain edema but this didn't occur immediately after the gamma knife, rather months later and may have been due to the size of the tumors treated.  It didn't happen with every treatment so may not be anything you and your husband need to worry about.  I would do the gamma knife sooner rather than later while the tumors are relatively small.  Take care.

                Ann

                • February 18, 2019 at 2:37 pm
                Zoe6565
                Participant

                  Hi Ann, thanks a lot for your sharing your experience! We are meeting with his oncologist tomorrow  and we definitely are going for the treatment. My understanding also was to get this thing zapped before it gets way worse! 

                  One other worry , (which may sounds silly!) was about any  partial hair loss. We both are relatively young (early 30), so that actually kind of matter for him! Not me 😉

                  zoe 🙂

                  • February 18, 2019 at 3:40 pm
                  marta010
                  Participant

                    Not silly at all – my husband did not experience hair loss from gamma knife treatments.  He did have hair loss in spots from immunotherapy – alopecia is an autoimmune disease.  In this case, the hair eventually grew back but is thinner in those areas.

                  • February 18, 2019 at 4:47 pm
                  RichInLife2
                  Participant

                    Hi, Zoe. You didn't mention your husband's braf status. If his tumors are braf positive, then you might see rapid turnaround from braf/mek combo therapy. I mention this because braf positive melanoma tends to be more aggressive and, from the rapid growth you've mentioned, that sounds like it's aggressive. 

                    I'm not braf positive, but I did have a rapidly growing brain met. In fact it was 9mm when I had SRS treatment in September of 2018. The SRS stopped the growth and I've had no side effects since then (knock on wood). I also started on Nivolumab at about the same time. As Celeste writes, the combo of SRS and immunotherapy seem to have synergistic effects.

                    Good luck to you and your husband!

                      • February 18, 2019 at 8:08 pm
                      Zoe6565
                      Participant

                        Hi Rich,

                        thanks a lot for the valuable input. What you mentioned was exactly my next question. His medical oncologist did mentioned the pills( not sure what kind since I wasn’t present  in that appointment) but she’s never actually mentioned testing for mutations. Her idea is to give the third infusion ipi/nivo a chance, if it didn’t work fast enough, then she is gonna switch to the pills. Do you think that’s a good idea?! We are meeting with her tomorrow, I am gonna make sure we leave her office with a plan!

                        God bless you 

                        Zoe 

                        • February 18, 2019 at 9:17 pm
                        marta010
                        Participant

                          Hi Zoe – me again….my husband is Braf + and he has been on Dabrafenib(Tafinlar) pills for 5+years.  This treatment was available long before immunotherapy was available.  He is now concurrently on Keytruda and Dabrafenib and will continue both for another year.  Often, Dabrafenib is taken with Mekinist but my husband was not able to tolerate those two drugs in combination.  I think that research does support Braf drugs for patients with brain mets.  That being said, my husband did have a couple of flare ups with his brain mets while on the drugs.  I think either the Opdivo/Ipi combo or Keytruda is more effective with brain mets….just my humble opinion.  let me know if you have any questions.  Thanks.

                          Ann

                          • February 18, 2019 at 9:49 pm
                          Bubbles
                          Participant

                            Actually ipilimumab (anti-CTLA-4 an immunotherapy) and Vemurafenib were both FDA approved for Stage IV melanoma the same year – 2011.  My primer covers both immunotherapy as well as targeted therapy (the oral combination of a BRAF inhibitor and a MEK inhibitor).  Additional BRAF/MEK combo's have been approved since as well as additional immunotherapy options – anti-PD-1 products Pembrolizumab (Keytruda) and Nivolumab (Opdivo), not to mention the ipi/nivo combo.  

                            Here is an old report…but still valid one…with general info regarding targeted therapy if you are interested, Zoe:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html  Both targeted and immunotherapy have been found to work in the brain.

                            Hope this helps you prepare for your talk with the onc.  Celeste

                            • February 18, 2019 at 10:18 pm
                            Bubbles
                            Participant

                              And for more than you ever wanted to know about melanoma brain mets – there are these reports/articles (if you are interested) – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets&max-results=20&by-date=true

                              c

                            • February 18, 2019 at 11:28 pm
                            ed williams
                            Participant

                              Hi Zoe, here are a couple of video links from ASCO onclive last year talking about findings of checkmate 204 trial on treating brain mets. https://www.youtube.com/watch?v=0FAZ-NPM_DU   

                              ttps://www.onclive.com/web-exclusives/nivolumabipilimumab-doubles-intracranial-response-in-melanoma-brain-mets

                              • February 19, 2019 at 1:33 am
                              Zoe6565
                              Participant

                                Thank you all for your responses, much appreciated. I am hoping for a beneficial appointment tomorrow! Will post an update soon.

                                cheers,

                                Zoe

                                • February 20, 2019 at 9:50 pm
                                ed williams
                                Participant
                                  • February 21, 2019 at 2:52 pm
                                  cancersnewnormal
                                  Participant

                                    I've been reading a lot about treating CNS metastasis (my rad onc sent his textbook – https://www.amazon.com/Adult-CNS-Radiation-Oncology-Principles-ebook/dp/B07FKCZ5KL). Definitely some very interesting reading material! Obviously, this is skewed toward the radiation oncology perspective… but this paragraph from the article Ed referenced (see post above), certainly caught my attention: "Patients with greater immune infiltration were more likely to have been treated with radiation in the past. This association provides support for combining immune checkpoint blockade with radiation, a concept currently being explored in clinical trials. “This is the first data from patients to demonstrate that radiation can increase immune cell infiltration in brain tumors,” Davies said."  You could watch and wait… however… currently, the science points to targeted radiation of the lesion. 

                                      • February 21, 2019 at 7:50 pm
                                      Zoe6565
                                      Participant

                                        Thanks a lot Niki! Very helpful:) we already made the decision and we are going to get it treated. So that was a reassuring post for us!

                                        much appreciated 

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