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need stage IV melanoma advice

Forums General Melanoma Community need stage IV melanoma advice

  • Post
    hass71
    Participant

      hello

      my wife had her second infusion of Keytruda the anti PD1 by Merck after failing Yervoy, we are expecting to have low response due to the large sizes of the tumors but this is our last hope after doing chemo and radiation for the brain and being negative on BRAF, has any one been on this treatment to share his experience and inform us with the side effects.

      I've a question, melanoma in our country is rare but from what i read i can see that most of who get treatment are coping well with it somehow but i see my wife from the day she started treatment with chemotherapy  and getting worse, she lost her hair since that and after that a while did a whole brain radiation and since then her hair didn't grow yet, she's in bed 90 percent of the time in pain and not able to lift her self up, has no appetite to eat and losing weight and the doctors gave me no explanation but that it's because of the disease, is that normal? and what can i do to change this situation?

    Viewing 8 reply threads
    • Replies
        joelcairo
        Participant

          I have no way of knowing how much of this is a direct effect of the drugs and radiation, but chronic loss of appetite and weight loss in cancer CAN be due to cachexia. This is a disruption of the metabolism caused by the release of a large number of inflammatory cytokines from the tumor, by the body's immune system, and by the breakdown of healthy tissue.

          This is a dangerous condition and it's important to get the body back to a normal state. Some foods/supplements that have been tried with come success are:

          – Omega-3 fatty acids

          – EGCG and theophylline, both nutrients found in green tea

          – Ketogenic diet

          – CoRN protocol, a combination of coenzyme Q10, riboflavin and niacon

          – NSAIDs such as Celebrex

          – Curcumin

           

          joelcairo
          Participant

            I have no way of knowing how much of this is a direct effect of the drugs and radiation, but chronic loss of appetite and weight loss in cancer CAN be due to cachexia. This is a disruption of the metabolism caused by the release of a large number of inflammatory cytokines from the tumor, by the body's immune system, and by the breakdown of healthy tissue.

            This is a dangerous condition and it's important to get the body back to a normal state. Some foods/supplements that have been tried with come success are:

            – Omega-3 fatty acids

            – EGCG and theophylline, both nutrients found in green tea

            – Ketogenic diet

            – CoRN protocol, a combination of coenzyme Q10, riboflavin and niacon

            – NSAIDs such as Celebrex

            – Curcumin

             

            joelcairo
            Participant

              I have no way of knowing how much of this is a direct effect of the drugs and radiation, but chronic loss of appetite and weight loss in cancer CAN be due to cachexia. This is a disruption of the metabolism caused by the release of a large number of inflammatory cytokines from the tumor, by the body's immune system, and by the breakdown of healthy tissue.

              This is a dangerous condition and it's important to get the body back to a normal state. Some foods/supplements that have been tried with come success are:

              – Omega-3 fatty acids

              – EGCG and theophylline, both nutrients found in green tea

              – Ketogenic diet

              – CoRN protocol, a combination of coenzyme Q10, riboflavin and niacon

              – NSAIDs such as Celebrex

              – Curcumin

               

              Nicklobianco
              Participant

                Hass71,

                Is your wife on any steroids (Dexamethasone)? If so, an increase may help with appetite and energy. Also, how is her red blood cell count? If low, she may be anemic. Possibly a blood transfusion and/or Iron IV could help. 

                My question to you is how long after completing Yervoy did they start Keytruda treatment?  My beautiful wife is currently going through a very similiar situation as yours with the diiference of completing Yervoy and now waiting for scans to determine PD-1.  

                I truly feel what you are going through and we can only be positive do everything we can for them. Take care of yourself and your wife. I will look for your reply ~Nick

                Nicklobianco
                Participant

                  Hass71,

                  Is your wife on any steroids (Dexamethasone)? If so, an increase may help with appetite and energy. Also, how is her red blood cell count? If low, she may be anemic. Possibly a blood transfusion and/or Iron IV could help. 

                  My question to you is how long after completing Yervoy did they start Keytruda treatment?  My beautiful wife is currently going through a very similiar situation as yours with the diiference of completing Yervoy and now waiting for scans to determine PD-1.  

                  I truly feel what you are going through and we can only be positive do everything we can for them. Take care of yourself and your wife. I will look for your reply ~Nick

                  Nicklobianco
                  Participant

                    Hass71,

                    Is your wife on any steroids (Dexamethasone)? If so, an increase may help with appetite and energy. Also, how is her red blood cell count? If low, she may be anemic. Possibly a blood transfusion and/or Iron IV could help. 

                    My question to you is how long after completing Yervoy did they start Keytruda treatment?  My beautiful wife is currently going through a very similiar situation as yours with the diiference of completing Yervoy and now waiting for scans to determine PD-1.  

                    I truly feel what you are going through and we can only be positive do everything we can for them. Take care of yourself and your wife. I will look for your reply ~Nick

                    arthurjedi007
                    Participant

                      In America there is a group of cancer places called cancer center treatments of America. Normally I dont care for them. However they do advertise a wholistic approach to cancer. This includes nutrition. The reason I bring it up there was a lady whose daughter had pancreatic cancer 5 years ago and is fine now. But she got her treatment elsewhere. Then went there to get her health back including lots of weight loss and everything. They provided all the food, exercise and everything specifically for her. Dunno if you have such a place but it sounds like your wife needs lots of proper nutrition and things to get her back. The cancer chemo and radiation takes a lot out of a person. I'm going through that again with radiation. I have not experienced that with keytruda though and I've had dose 14. Actually quite the opposite. Usually I feel a little stronger after a dose for a few hours to a couple days.

                      Artie

                      arthurjedi007
                      Participant

                        In America there is a group of cancer places called cancer center treatments of America. Normally I dont care for them. However they do advertise a wholistic approach to cancer. This includes nutrition. The reason I bring it up there was a lady whose daughter had pancreatic cancer 5 years ago and is fine now. But she got her treatment elsewhere. Then went there to get her health back including lots of weight loss and everything. They provided all the food, exercise and everything specifically for her. Dunno if you have such a place but it sounds like your wife needs lots of proper nutrition and things to get her back. The cancer chemo and radiation takes a lot out of a person. I'm going through that again with radiation. I have not experienced that with keytruda though and I've had dose 14. Actually quite the opposite. Usually I feel a little stronger after a dose for a few hours to a couple days.

                        Artie

                        arthurjedi007
                        Participant

                          In America there is a group of cancer places called cancer center treatments of America. Normally I dont care for them. However they do advertise a wholistic approach to cancer. This includes nutrition. The reason I bring it up there was a lady whose daughter had pancreatic cancer 5 years ago and is fine now. But she got her treatment elsewhere. Then went there to get her health back including lots of weight loss and everything. They provided all the food, exercise and everything specifically for her. Dunno if you have such a place but it sounds like your wife needs lots of proper nutrition and things to get her back. The cancer chemo and radiation takes a lot out of a person. I'm going through that again with radiation. I have not experienced that with keytruda though and I've had dose 14. Actually quite the opposite. Usually I feel a little stronger after a dose for a few hours to a couple days.

                          Artie

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