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Treatment for Brain Mets – Need some shared experiences please

Forums General Melanoma Community Treatment for Brain Mets – Need some shared experiences please

  • Post
    sandyd77
    Participant
      Hi – I have been a member of the forum for some time now – my husband has had melanoma since 2018 which is at stage 4.  A brief history:

      • Initial melanoma was on back and required wide excision surgery in March of 2018 which was successful for the most part.  This was performed around the same time he had an UNRELATED right lung lobe removed due to Lung Cancer which was found around the same time as the melanoma.
      • The good news is the lung cancer was fully addressed with the surgery and has not returned.
      • Back to the melanoma – he had a full lymph node dissection in the fall of 2018 (which was delayed because of the lung cancer surgery).  The good news here is that all nodes removed were negative even though his sentinel node was positive at the time of the original wide excision on his back.  At this point he was placed on monitoring with an oncology team.
      • In April of 2019 he was seen for a routine follow-up by the oncologist and a PET Scan was recommended.  The PET Scan revealed mets to the lungs (NOT related to earlier Lung Cancer, validated to be melanoma mets, as well as a recurrence at the original back site and a very small lesion in his liver.
      • He began a course of monthly Opdivo infusions which were given through January 0f 2020 with mixed results – some reductions in met size initially but then increased growth.
      • Because he had tested BRAF positive – his oncologist switched him  from Opdivo to Taflinar /Mekinist targeted oral chemo beginning March of 2020.  This produced great results.  The instances on his back disappeared and ALL lung mets cleared up.   The liver met remained stable for the most part.
      • He had intermittent fevers, fatigue and rashes on the targeted therapy but we have been able to manage very well with Tylenol.  In January of this year (2021) his doctor sent him for a quarterly CT Scan of Chest/Abdomen ( which he had been having quarterly while on targeted therapy) and  all was good with the back and lungs, but the liver met had doubled in size so she recommended we continue with targeted therapy and meet with his original surgical oncologist to see if he could surgically remove the liver met based on size and location.  She also sent him for a full body, head to toe PET scan to be sure nothing else was brewing.  That is when the bottom fell out – there was SUV uptake noted in his brain and they recommended a brain MRI which he had on 2/9.
      • The oncologist called us this morning to confirm he has several small mets in his brain and some inflammation.  We are supposed to meet with Radiation Oncology on Monday 2/15.  Although he has no real symptoms related to the brain mets, they are concerned about the inflammation and have put him on Dexamethasone to head off problems from brain swelling.  He has never been on Dex before.
      • I will admit we are scared.

      Can any of you who have radiation for brain mets  let me know about your experience – side effects and results.  They have told us they have had some success with this in treating brain mets from melanoma.

      Also – any advise on dexamethasone would be helpful too.

      They have advised us to hold off on pursuing addressing the liver met at this point, as they feel the brain issue is much more serious.

      I appreciate everyone on this forum for being here to listen.  Melanoma really sucks.

      Sandy D

       

       

       

    Viewing 14 reply threads
    • Replies
        Bubbles
        Participant
          I am sorry for what you and your husband are dealing with, Sandy.  I can personally relate to your ordeal in that I have had brain and lung mets due to melanoma (2010) after having been diagnosed with Stage III melanoma in 2003.  In 2018 I was diagnosed with a completely different cancer for which I underwent old school chemo and lots of surgery.  So – yeah.  That ALL sucks!  And melanoma in particular sucks great big green stinky hairy wizard balls for sure!

          For my brain met in 2010 I had SRS (stereotactic radiation) followed by surgery to the tumor in my lung followed by a 2 1/2 year phase 1 trial of nivo.  Luckily, I have been NED for melanoma ever since.  But, to get to the information you need….

          I did have dexamethasone for potential brain swelling post radiation.  I had no swelling.  I feel very tired when on prednisone.  Many peeps feel very energized, have trouble sleeping and increased appetite.  Other than that, dex is usually utilized for a limited time or at the very least weaned as soon as possible to a low maintenance dose and there are not usually any significant problems with that.

          As to SRS – I had to have a halo placed due to the methods used by my radiologist.  If that is the method used, you are then bolted to the frame of the machine so that you hold completely still, ensuring that only the proper place can be zapped.  Many facilities create a mask of your face, rather than using the halo, that helps mark the position the patient needs to be in and is a bit less miserable.  SRS allows multiple beams of criss-crossing radiation to be directed via different directions – all intersecting at the lesion (or lesions) – so that you do not damage important brain tissue but do get rid of the met.  If you were to direct one beam at the lesion – you could zap the lesion but you would also zap the viable brain tissue that lays in that path.  Gamma knife works much the same.  Both of these can be used to address multiple lesions.  We have patients on the forum who have had as many as 13 lesions treated in this manner.  Though if the lesions are numerous, the process may be provided in multiple treatments, rather than one.  Further, this sort of radiation is preferred for the treatment of melanoma, as whole brain radiation causes more residual damage and diminished response for most.

          While radiation has been found to be helpful for melanoma, it works far better when it is combined with systemic therapy.  We have learned that radiation COMBINED with systemic therapy works far better (in the brain and body – something that might be important to think about regarding the liver lesion) than either therapy alone.  I would think it would be very important to rapidly switch to a therapy like the ipi/nivo combo AND provide SRS to the brain lesions ASAP.  I realize your husband did not attain a complete response to nivo alone, but the addition of ipi may yeild a positive result.  It is clear that his targeted therapy is no longer effective, so switching quickly could make a world of difference.  After he has had his brain mets treated, there may be trials with systemic therapies that could be helpful.  Unfortunately, a trial is unlikely to accept him until the CNS lesions are addressed, but you could still ask your doc about that option.  It is also of supreme importance that he is being treated by a melanoma specialist – or at least an oncologist well versed in melanoma, its treatments and with access to trial options.

          Here is a basic post I created about melanoma treatments generally (which may be of no help at this point given all you have already clearly dealt with) – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

          Here are a zillion articles and reports on the treatment and management of brain mets:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets

          These reports cover many years, so scroll through to get to the latest data.

          This post – and the link to more data/reports in it – is probably most important to you right now – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/05/the-ipinivo-combo-with-radiation-to.html

          It specifically addresses brain mets, radiation and the improved results when radiation is combined with systemic therapy.

          Something that comes up a lot with oncs not terribly familiar with melanoma – is a fear of combining radiation, immunotherapy AND prednisone.  The old mentality was that steroids would prevent a response to the immunotherapy.  However, many many melanoma ratties have taught us that is NOT true!  Many melanoma peeps require steroids due to brain mets or side effects and are still able to attain a response despite being on them.  Further, some fear using immunotherapy with radiation, thinking it may increase the problem of necrosis.  However, that too has been unfounded as this report indicates – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=necrosis

          In thinking about what path to choose next – clinical trials may be a good option.  Looking through this site:  https://www.clinicaltrials.gov/  may be helpful.  You can narrow the search with diagnosis “stage IV melanoma” and “recruiting” trials.  Once you have that list up, you will see the drugs involved, the inclusion and exclusion criteria, and when you look on down – all the locations at which the trial is offered.  If the options are not feasible for melanoma, sometimes “solid tumors” can yield more results.   If you are remotely interested in any trial – CALL!!  The doc, institution, and/or clinical trial coordinator is usually listed.  In calling you may find that your husband may be able to participate, even if the exclusion criteria makes it seem as though he could not, as often there are many arms to a study.  Further, you may find out about another trial entirely that is even better for his needs.  That is what happened for me.  My husband was calling about one trial when his discussion led to the trial of nivo that I actually participated in.

          I know this is a lot – but so is melanoma.  I hope this helps.  There are many smart caring peeps on this board who have been treated with radiation for brain mets, so I’m sure they will chime in.  Take care of you.  Your husband is lucky to have you in his corner.  Ask more questions as you have the need.  celeste

          ed williams
          Participant
            Just to give you some more stuff to read, a link to an interview Q and A with Dr. Tawbi of MD Anderson from Jan.2020. https://www.hematologyandoncology.net/archives/january-2020/the-standard-of-care-for-brain-metastases-in-melanoma/
              ed williams
              Participant
                One more trial that might be of interest! https://clinicaltrials.gov/ct2/show/NCT04511013
                sandyd77
                Participant
                  Caregiver
                  Ed,

                  Thanks so much for taking the time to respond to me and for the information you have provided.  It was very informative.

                  You and Celeste have been so helpful and I really appreciate it.

                   

                  Best,

                  Sandy D

                  sandyd77
                  Participant
                    Caregiver
                    Celeste – thank you so much for all of the information you have provided.  It is so very helpful and I have shared it with my husband.  I have learned along the way on this journey being informed is the best ally.  We feel a bit more hopeful after reading your response and the information, although we do realize everyone’s case is different.

                    Our oncologist is one of the document Melanoma treatment specialists in our state so we feel like we are in good hands.  We also live in Maryland has which as many medical resources.

                    You truly are a wealth of knowledge and a treasure.  Will keep you posted on our next steps.

                    Best,

                    Sandy D.

                     

                  Threefitty
                  Participant
                    I’m somewhat in your boat. Many brain mets after a bottom falling out. Taking the combo – it may be helping.

                    Just completed 10 factors of WBR over 2 weeks, I haven’t educated myself on the particulars.

                    I just really liked my brain guy’s attitude…”you know, we’re coming in with the wide brain, but if we don’t get it all we sometimes come back with the SRS”.

                    Just a trim and a shave. There is a waiting period for the return MRI due to “tough to tell the difference between dead and live melanoma on MRI”.

                    I had a mask, it took less than 20 minute a session, and have not had side effects other than I think “no sun” means “absolutely no sun” I got pretty red with very brief exposure by the end.

                      sandyd77
                      Participant
                        Caregiver
                        Thanks so much for your response – our appointment is tomorrow.  We have now seen the MRI report and there are multiple mets so your situation does sound similar.  It is good to hear from someone going through it.  I hope all goes well for you and also for us!

                         

                        Sandy D

                      JudiAU
                      Participant
                        I’ve had brain radiation twice. The first to fry any scraps from my Schwannoma after two craniotomies. (Still stable) the second tie to fry any scraps after a Mel met craniotomies. I was tired, particularly the first time, but really just ended up with some grey hair. Most of what you read online about side effects and whatnot is really out of date. Sheesh. Boy I wish I had been able to get away with just having radiation instead of surgery.

                        But I really, really hate dex. I have no idea what level you are taking but I had to take 40 mg three different times. And the first time a mistake was made and I was on it for months. I was bat [ ] crazy and my family really suffered. I had every side effect listed. And when I got off it finally I was hospitalized for a week with sepsis. And also had to have my big toenail removed. It is a very powerful so please try and limit your time with it. It really helps to study drug interactions etc.

                        hxcadam
                        Participant
                          Your husband sounds a lot like me.  Early 2017 was my WLE and sentinel and then lymphectomy due to finding a small amount in the sentinel node.  Early 2020 recurrence in Lung, Spleen and Brain.  I had 2 small (about 1cm ea.)Brain mets that were handled with SRS radiation and went on Opdivo.  Showed progression elsewhere after 3 months of Opdivo and added targeted therapy (Not sure why your oncologist stopped Opdivo when they started targeted as it’s been shown the Trio can be good).  My most recent MRI and CT showed brain is clean (1 gone and the other just a scar at this point) and all other disease is stable or shrinking slightly.  I’ve reacted similarly as your husband to targeted.  Fevers originally on a 4-6 week basis but now they’re just sporadic.  Some fatigue and had a rash at one point but they think it was amoxicillin that caused it.
                          gopher38
                          Participant
                            Hope this went well.  Was meaning to post my experiences, which were that the apprehension was much worse than the actual procedure.  There’s nasty junk where it shouldn’t be; burn it out.  The halo things was strange, but less painful than I expected.

                            9 months after my procedure, the spot is still there, but not growing.  Hoping that it’s dead, but we’ll see.

                              sandyd77
                              Participant
                                Caregiver
                                Thanks for sharing your experience.  It helps.  Glad you are doing well.

                                 

                                Sandy D

                              marta010
                              Participant
                                Hi Sandy – just wanted to share my husband’s experience with brain mets and treatments. He was initially diagnosed in 2012 with mets to neck lymph nodes and brain. Over the past 9 years, has had 7 gamma knife procedures and 4 craniotomies. Gamma knife experience has been pretty consistent with what others have shared – primary discomfort has been the placement of the frame with very little in the way of discomfort after the procedures were completed. Brain surgeries have also gone off without complications, thankfully. He’s been on dex a few times with brain swelling/edema and also had avastin to deal with a particularly persistent swelling issue. The taper off of dexamethasone has been troublesome for him and is done very slowly. His treatments over the years includes zelboraf (6-9 mos), ipi, Tafinlar & keytruda. He’s been on Tafinlar since 2013 with Keytruda added in 2018/19. Other than a few pesky brain mets, his tumor activity in the rest of his body has been pretty minimal. We haven’t quite hit on the magic combination to address the brain and his neuro continues to treat the brain mets as they show up. Keep on keepin on! Take care.

                                Ann

                                  sandyd77
                                  Participant
                                    Caregiver
                                    Ann,

                                    Thanks so much for the information you shared about your husband’s treatments.  It helps SO MUCH much to hear about others who have traveled this path.    He is remaining positive about this and we are staying hopeful.  First of 10 treatments is tomorrow.  I hope your husband is doing well and you are as well!

                                    Best,

                                    Sandy

                                     

                                  sing123
                                  Participant
                                    Hi there! I started getting the worst headaches I’d ever had and this is how my brain mets were diagnosed. I had 3, 1 very small, 1 medium sized, and 1 almost too big for the doctor to radiate. He did SRS back in July, and they’ve not recurred. And just had an MRI and it was all clear! Good luck and best to you and your husband.

                                     

                                    sandyd77
                                    Participant
                                      Caregiver
                                      Hello all,

                                      Just wanted to provide an update on my husband’s brain mets.  He has completed the prescribed 10 whole brain radiation treatments with minimal side effects.  He has also successfully tapered off dexamethasone.  His hair is just starting to come out and other than a tender scalp, he is doing OK.  We have blood work including LDH level scheduled for next week and then we go back to his medical oncologist to determine next steps.  We are apprehensive but hopeful.

                                      Thanks again to all for sharing your experiences.   It has made a world of difference in how I was able to support him through this phase of his journey.   Best wishes to all for continued health improvements.

                                      Sandy D.

                                      Bubbles
                                      Participant
                                        Glad he is done with that ordeal!  I am sure that your onc will come up with a good plan for him.  Wishing you both my best.  celeste
                                        JudiAU
                                        Participant
                                          Wow. You have been through a lot. I’m glad you gotten through the other size. Wishing you happy scans.
                                          sandyd77
                                          Participant
                                            Caregiver
                                            Hello All,

                                            I have not posted since my husband completed his whole brain radiation treatments for brain mets in early March.  He weathered the treatments well but he started a significant decline a few weeks after treatment completion with extreme fatigue and loss of appetite.  We followed up with a biopsy of the liver lesion which had turned up when the brain mets did.  The thought was the lesion was a melanoma met.  Unfortunately, it proved to be a totally separate cancer called Cholangiocarcinoma.  This cancer occurs in the bile duct and is fairly uncommon.

                                            His doctors considered microwave ablation and possible chemo but by then his condition has deteriorated significantly and his CA 19-9 count was well over 600 (upper acceptable limit is around 37), indicating significant metastasis.    He was placed on home hospice on May 27th and he passed away at home surrounded by me and our sons on June 8th.  He would have been 69 years old on June 22nd.  He had weathered adenocarcinoma of the right lung (detected and removed in 2018), Stage 4 melanoma  (detected in early 2018 and treated through May 0f 2021), and the last straw which was the bile duct cancer.

                                            He was on TAF/MEK for 14 months with very good results and minimal side effects until the bottom fell out in late January of this year.  We were able to have well over 3.5 years due to wonderful doctors and nurses and treatments available for melanoma but did not count on the other cancers.  This forum helped me and him tremendously.

                                            You all are very brave and strong individuals and I wish you all good scans, happy days, and improved health.  God Bless.

                                            Sandy D.

                                              MelMel
                                              Participant
                                                I am so extremely sorry for your loss. Your husband fought bravely however we never know what awaits us just around the corner still, try to keep the wonderful memories close to your heart and find solace in knowing that your support meant the world to him.

                                                My thoughts and prayers are with you and your family.

                                                Melanie

                                              Bubbles
                                              Participant
                                                Oh Sandy.  I am so sorry – for all that the two of you endured and for the loss of your dear one.  How very unfair.  But, how incredibly blessed he was to have you there for him through all his difficulties and joys.  We cancer peeps need and appreciate our loved ones who fight our battles right along side us more than we can express.  Holding you and your boys in my heart.  yours, c
                                                ThinkingPositive
                                                Participant
                                                  Cutaneous
                                                  Dear Sandy,

                                                  My heart goes out to you and your family. Thank you for sharing your husband’s treatment pathway, as it helped me understand options as well as barriers to living with melanoma.

                                                  Sincerely,

                                                  Cindy

                                                  sing123
                                                  Participant
                                                    Sandy, I am so very sorry for your loss. May you can in some small way feel peace in the great comfort you provided your husband as caretaker. Big hugs to you and your family.
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