MRF-Logo2019-Horizontal-RGB
Multiple brain mets ,immunothearpy and steroids
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Multiple brain mets ,immunothearpy and steroids

› Forums › General Melanoma Community › Multiple brain mets ,immunothearpy and steroids

  • Post
    • September 26, 2018 at 12:58 am
    Elizabeth123
    Participant

      Hello all. 

      I posted a while back,  my husband is stage 4 with a lot of brain mets, some also in the lungs and adrenal glands.   Wondering if any of you have been through this.  Last year we did gamma knife on a number of brain mets in combination with target therapy.   Things we ok on the one they treated,  but met new ones kept cropping up.  In April of this year we under went whole brain radiation and began immunothearpy.  Single agent pd1 keytruda.   At the end of June the MRI revealed 30 brain mets had progressed.  It seems alot of them doubled in size.  And then the brain swelling started.   So they put us on 16 mg of dexamethasone and decided to do Srs to 11 of the mets.   Every time we try and taper down the steroids the brain swells.  Recently we also decided to add in low dose ipi.  To our mix.  And again. As soon as I get to 8 mg of dexamethasone the brain swells and a whole bunch of mobility issues happen.  The doctor said today that we are in a heartbreaking situation,   If this combo doesn't work.  There is nothing much else.  He says we need to get off the steroids.  Anyone have any advise.  Anything else we could try.  

      You all are so  helpful and encouraging,  looking for any advise   

      Liz 

       

    Viewing 7 reply threads
    • Replies
        • September 26, 2018 at 1:06 am
        marta010
        Participant

          Liz – so sorry about your husband’s situation. My Husband has had brain mets treated with gamma knife that ultimately caused radiation necrosis. Steroids were not doing much good so his Dr treated the swelling with Avastin. Might want to see if this would be an option for your husband. Take care. 

          Ann

          • September 26, 2018 at 2:06 am
          ed williams
          Participant

            Hi Liz, there hasn't been very much new information lately on treating brain mets!!! At ASCO this year early trials in Australia and checkmate 204 I believe showed that the combination of Ipi/Nivo has the best results and durable when it works. Here is a link from a ONclive peer panel a couple of months ago!!! Best Wishes!!!Ed https://m.youtube.com/watch?time_continue=200&v=0FAZ-NPM_DU

            • September 26, 2018 at 11:52 am
            Elizabeth123
            Participant

              Thanks Ed and Ann,    We are taking pembro and ipi.  After the second dose of ipi we started seeing way more issues.  We have a MRI this Friday to see what's going on.  Not even the high dose dexamethasone is helping with mobility issues.

               

              Liz

              • September 26, 2018 at 2:15 pm
              KellyH
              Participant

                Hi Liz. 

                It sounds to me like your husband is quite the fighter!!! And you as well…it’s not easy being the family member…my young son is the patient and I can definitely relate to your role in this crazy journey. 

                I am sorry I do not have any good treatment advice like some of the other folks on here but please know I will be praying for your husband and you and sending positive thoughts your way!!!!!!!! 

                Kelly 🙂 

                • September 26, 2018 at 4:33 pm
                MelanomaMike
                Participant
                  Oh Liz! Gosh darnit! Or Damnit! Rather! Oh boy, i cant reccomend anything, im not one of the fabulous folks here who are intellegent in our shared desease & its warfare but i can offer up Hope, Prayers & a little Luck for your dear Husband..
                  Hopefully the Yervoy will be his “Key” to slowing (or elimination) of his brain buggers!..whats his name? I think its time to know his name..Mike
                    • September 26, 2018 at 4:53 pm
                    Elizabeth123
                    Participant

                      His name is Ezio.    And I pray the yervoy is working.  In the mean time wow the mobility issues are ruff.  

                      • September 27, 2018 at 9:31 am
                      aldrichdesigner
                      Participant
                        I just wanted to chime in and say it absolutely isn’t. Ive been being treated since June 2018, and now Im in the hospital again because I let myself get impacted from all the pain meds.
                      • September 26, 2018 at 9:22 pm
                      MovingOn
                      Participant

                        Hi Liz, I’m sorry that the early treatments didn’t seem to work and hope the current Ipi/Pembro is working quickly.

                        Could you provide any further details about where your husband is receiving care? I’m always thinking about my future care plans if Mel. progresses further. If you aren’t currently receiving care at a research hospital then please consider going to one for additional therapy options. My contingency plan is to escalate Care from UCSD (current, local research hospital) to UCLA (regionally of high acclaim), then to MD Anderson as my final step. Please keep pursuing multiple opinions, radiation experts, clinical trials, and never give up.

                        • September 26, 2018 at 9:23 pm
                        MovingOn
                        Participant

                          Hi Liz, I’m sorry that the early treatments didn’t seem to work and hope the current Ipi/Pembro is working quickly.

                          Could you provide any further details about where your husband is receiving care? I’m always thinking about my future care plans if Mel. progresses further. If you aren’t currently receiving care at a research hospital then please consider going to one for additional therapy options. My contingency plan is to escalate Care from UCSD (current, local research hospital) to UCLA (regionally of high acclaim), then to MD Anderson as my final step. Please keep pursuing multiple opinions, radiation experts, clinical trials, and never give up.

                            • September 26, 2018 at 11:12 pm
                            Elizabeth123
                            Participant

                              We are in canada and receiving treatments at princess Margaret hospital in Toronto.  They are a top research hospital. Unfortunately there doesn't seem to be any clinical trails for brain mets.   We are doing a MRI on Friday to see what's going on.  And at that point we will  see if the radation oncologist can do anything else.  

                              hoping and praying

                              • September 27, 2018 at 12:54 am
                              ed williams
                              Participant

                                You might want to ask why the low dose Ipi, the two trials that have shown response in the brain with Ipi/Nivo used 3mg/kg of Ipi and 1mg/kg of nivo. See checkmate 204 and the following link which features Dr. Long from Australia talking about brain mets research last summer after ASCO. https://www.youtube.com/watch?v=X5xGQpdp9OA

                              • November 27, 2018 at 3:15 am
                              Canadian melanoma wife
                              Participant
                                I hope things are progressing along in your favor! My husband had whole brain radiation along with Ipi/ Nivo started in March 2018. Had to stop treatment in July because of adverse events. I’m happy to report we are here in November 2018 and almost at the point of NED! I know it’s hard to see the lay of the land right now. Ipi/ Nivo! It’s been a miracle for us, maybe it can be for you as well. Best wishes on your journey.
                            Viewing 7 reply threads
                            • You must be logged in to reply to this topic.
                            About the MRF Patient Forum

                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                            Popular Topics