Is it possible to reverse advanced cachexia?

› Forums › General Melanoma Community › Is it possible to reverse advanced cachexia?

  • Post
    • April 15, 2016 at 1:01 am
    DZnDef
    Participant

      My brother has continued to deteriorate and is in the hospital now waiting for a transfer to a skilled nursing facility.  He has a healthy appetite and continues to have bowel movements but nutrition does not appear to be reaching his muscles.  They have attempted to rule out other causes of his multiple myeloma (I think that's the right term).  He is down to 4mg every other day of his steroid.  Brain MRI shows all of his brain mets have shrunk by half (he had SRS and was on Zelboraf for one month, off for one week for side effects (lung pain), due to re-start soon).  His chest scans show his lung mets have either disappeared or shrunk by half.  Yet during this time he has continued to weaken and appears to weigh even less.  He cannot get out of bed without assistance and cannot sit up for more than a few minutes at a time without needing to lean on something.  The Zelboraf appears to be working, yet his strength is not returning.  This is very confusing.  Is there a point where cachexia cannot be reversed even if the cancer drugs are working?  Where is all that nutrition going if not to his muscles?  I would guess the cancer except the cancer is shrinking.  We don't know for sure this is cachexia but what else could it be?  Any ideas?  Suggestions?

      Thank you all for your support.

      Maggie

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    • Replies
        • April 15, 2016 at 2:20 am
        Polymath
        Participant

          Hi Maggie,

          I'm not sure it applies but Zelboraf really kicked my ass, with all kinds of side-effects including quick and extreme weight loss and no matter what I ate, the weight would not return.  Not until I switched meds.  But the Zel made quick work on my tumors with reductions noted within days.  But alas, after three months the Zel stopped working anyway.  

          Gary

          • April 15, 2016 at 2:20 am
          Polymath
          Participant

            Hi Maggie,

            I'm not sure it applies but Zelboraf really kicked my ass, with all kinds of side-effects including quick and extreme weight loss and no matter what I ate, the weight would not return.  Not until I switched meds.  But the Zel made quick work on my tumors with reductions noted within days.  But alas, after three months the Zel stopped working anyway.  

            Gary

              • April 15, 2016 at 3:26 am
              DZnDef
              Participant

                Good info, Gary, thanks so much for responding.  He has a really good appetite which is unusual for cachexia so maybe the Zel is a contributing factor.  I will look into that more and discuss with his doc.  Thanks again.

                • April 15, 2016 at 3:26 am
                DZnDef
                Participant

                  Good info, Gary, thanks so much for responding.  He has a really good appetite which is unusual for cachexia so maybe the Zel is a contributing factor.  I will look into that more and discuss with his doc.  Thanks again.

                  • April 15, 2016 at 3:26 am
                  DZnDef
                  Participant

                    Good info, Gary, thanks so much for responding.  He has a really good appetite which is unusual for cachexia so maybe the Zel is a contributing factor.  I will look into that more and discuss with his doc.  Thanks again.

                  • April 15, 2016 at 2:20 am
                  Polymath
                  Participant

                    Hi Maggie,

                    I'm not sure it applies but Zelboraf really kicked my ass, with all kinds of side-effects including quick and extreme weight loss and no matter what I ate, the weight would not return.  Not until I switched meds.  But the Zel made quick work on my tumors with reductions noted within days.  But alas, after three months the Zel stopped working anyway.  

                    Gary

                    • April 15, 2016 at 11:10 am
                    WithinMySkin
                    Participant
                      Hi Maggie. I’m so terribly sorry to hear about your brother. I don’t have any experience with Zelboraf, but glad to hear it seems to be working on decreasing his tumor load. Definitely worth discussing if it could be causing the weight loss, though. On Sylatron I got down close to 100 pounds (45 kg) and couldn’t keep on any weight no matter what I ate, and its taken me a few weeks after stopping treatment to start gaining again. It has helped to drink lots of high calorie liquids – things like boost, soup, and Gatorade. Easy to digest and kept me hydrated. Hoping he gains his strength soon!
                      • April 15, 2016 at 11:10 am
                      WithinMySkin
                      Participant
                        Hi Maggie. I’m so terribly sorry to hear about your brother. I don’t have any experience with Zelboraf, but glad to hear it seems to be working on decreasing his tumor load. Definitely worth discussing if it could be causing the weight loss, though. On Sylatron I got down close to 100 pounds (45 kg) and couldn’t keep on any weight no matter what I ate, and its taken me a few weeks after stopping treatment to start gaining again. It has helped to drink lots of high calorie liquids – things like boost, soup, and Gatorade. Easy to digest and kept me hydrated. Hoping he gains his strength soon!
                          • April 17, 2016 at 12:29 am
                          DZnDef
                          Participant

                            Thank you for responding, Lauren.  They weighed my brother using a hammock today.  He's down to 150 pounds and he is 6'1".  Though in college he weighed 145 (bean pole).  His weight is distributed very differently now.  All in his abdomen.  He appears to be improving as he takes a break from the Zel.  But of course he will need to resume treatment soon.  So frustrating to get such a great tumor response but then needing to stop because of the side effects.  This is a real dance the oncologist has to do.  Trying to maximize response and minimize adverse effects.  They have a really tough job.

                            • April 17, 2016 at 12:29 am
                            DZnDef
                            Participant

                              Thank you for responding, Lauren.  They weighed my brother using a hammock today.  He's down to 150 pounds and he is 6'1".  Though in college he weighed 145 (bean pole).  His weight is distributed very differently now.  All in his abdomen.  He appears to be improving as he takes a break from the Zel.  But of course he will need to resume treatment soon.  So frustrating to get such a great tumor response but then needing to stop because of the side effects.  This is a real dance the oncologist has to do.  Trying to maximize response and minimize adverse effects.  They have a really tough job.

                              • April 17, 2016 at 12:29 am
                              DZnDef
                              Participant

                                Thank you for responding, Lauren.  They weighed my brother using a hammock today.  He's down to 150 pounds and he is 6'1".  Though in college he weighed 145 (bean pole).  His weight is distributed very differently now.  All in his abdomen.  He appears to be improving as he takes a break from the Zel.  But of course he will need to resume treatment soon.  So frustrating to get such a great tumor response but then needing to stop because of the side effects.  This is a real dance the oncologist has to do.  Trying to maximize response and minimize adverse effects.  They have a really tough job.

                              • April 15, 2016 at 11:10 am
                              WithinMySkin
                              Participant
                                Hi Maggie. I’m so terribly sorry to hear about your brother. I don’t have any experience with Zelboraf, but glad to hear it seems to be working on decreasing his tumor load. Definitely worth discussing if it could be causing the weight loss, though. On Sylatron I got down close to 100 pounds (45 kg) and couldn’t keep on any weight no matter what I ate, and its taken me a few weeks after stopping treatment to start gaining again. It has helped to drink lots of high calorie liquids – things like boost, soup, and Gatorade. Easy to digest and kept me hydrated. Hoping he gains his strength soon!
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