MRF-Logo2019-Horizontal-RGB
Mat
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.

Mat

Forum Replies Created

Viewing 11 reply threads
1 2 3 … 113 114 115
  • Replies
      • March 19, 2019 at 11:24 pm
      Mat
      Participant

        Maggie, sorry to hear.  I might consider a phase II trial where safety has been demonstrated in phase I and you're guaranteed to get the drug (maybe just not the right amount)?  If you can ride it, you may be able to return to BRAF-MEK after a break.

        • March 11, 2019 at 11:43 am
        Mat
        Participant

          BRAF-MEK can clean up a heavy tumor burden and fast, including bone mets.

          • February 28, 2019 at 8:17 pm
          Mat
          Participant

            Jenn, I have a similar diagnosis–unspecified arthritis from nivo–since early 2017 when I began to taper off of nivo.  I've been on some level of prednisone the entire time since.  I started with sulfasalizine and it had no effect for me.  I then moved to methotrexate.  After the onset period, I had some success with it.  At its best, it takes the edge off and more–but not 100% relief.  I did not need any steroid injections for arthritis while on methotrexate and off nivo.  I recently restarted Opdivo.  I now find the methotrexate to be less effective and will likely need to supplement with steroid injections.  I may also look to add plaquenil.  If you find the magic bullet, please let me know.  (Up to this point, I've sought to avoid Remicade.)

            • February 19, 2019 at 10:38 pm
            Mat
            Participant

              I prefer–cancer patient, currently surviving.  Let them say I was a cancer survivor when I die from something else, preferably in the distant future.

              • February 7, 2019 at 3:38 pm
              Mat
              Participant

                I echo John’s response, particularly around your headaches.  Might be a pituitary/adrenal/cortisol issue requiring treatment with steroids. 

                • January 29, 2019 at 12:35 am
                Mat
                Participant

                  Consider requesting an MRI of the spine, particularly if his walking is impaired.

                  • January 2, 2019 at 12:34 pm
                  Mat
                  Participant

                    Happy New Year, Celeste!  I'm thankful to have had a lovely holiday season with family and looking forward to a happy and hopefully healthy 2019.  Best wishes to all for a happy, healthy and prosperous New Year.

                    • December 20, 2018 at 1:25 am
                    Mat
                    Participant

                      Vince, when I was on ipi/nivo for 1.5 years (~20 nivo maintenance infusions)–I was never NOT in prednisone–for the most part ~20mg/day.  That said, steroids gave me little relief for my recent spinal tumor.  Hopefully they did an MRI of your spine and not just a CT to see if surgery or radiation is warranted.  As for me (you asked in a prior post), BRAF-MEK is presently doing its job with some additional work ahead.

                      • December 17, 2018 at 10:08 pm
                      Mat
                      Participant

                        Caitlin, I'm glad to hear that you're feeling well and have a good plan.  

                        • November 1, 2018 at 7:18 pm
                        Mat
                        Participant

                          Vince, sorry to hear.  I was also knocked out of TIL after initial approval due to a brain met. I would go for ipi-nivo.  If you look at my many historical posts, you’ll see that I failed all prior treatments (they failed me, whatever) before ipi-nivo and remained stable on ipi nivo for almost 3 years.

                          • October 27, 2018 at 1:05 pm
                          Mat
                          Participant

                            A quick update—CT scans show no other progression.  So, in theory, Braf-Mek can focus on cleaning up CSF and surgical site (aka low tumor burden).  Folks here know that I push for regular scans, including a Battle Royale to include brain MRI.  I do that in an attempt to mitigate the possibility of an uncaught and dangerous progression.  Yet, here I am.  Not much we can control in this world despite best efforts.  That said, I’m in a good spot mentally and up for this latest challenge.  Thank G-d for strength of mind and direction and for the assistance of a top quality and open minded medical team.

                            • October 27, 2018 at 12:57 pm
                            Mat
                            Participant

                              Great news Bill—stable disease is a good place to be.

                              • October 26, 2018 at 4:00 pm
                              Mat
                              Participant

                                Celeste, you are setting too low of a bar for yourself if you’re using me for PT motivation!  In any case, glad to report that I’m headed to a rehab facility later today—an important step for getting to the meds.

                                • October 26, 2018 at 3:56 pm
                                Mat
                                Participant

                                  Thanks Caitlin.  Sounds like you have a good plan too.  We’ve started talking about next steps—similar to your next steps—once we see results from braf-mek.  Like you, we eere originally considering the newer combo, but decided to go with the original since I already had some success with it and I haven’t used it for almost 3 years.  

                                  • October 25, 2018 at 12:45 pm
                                  Mat
                                  Participant

                                    Celeste, Brian, all, thank you.  Surgery was successful.  Today is my first PT day.  Need to recover strength in hips and legs.  We’re skipping radiation to clean up surgery site.  Going straight to original (not newer) Braf-Mek since I personally saw the benefits of that combo, including in brain, and was able to nicely tolerate.  It has been almost 3 years since my last Braf-Mek, so we’re optimistic that it will work.  At this point, I can’t comfortably travel, so MDA is out.

                                Viewing 11 reply threads
                                1 2 3 … 113 114 115