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Experiences please…Carbo/taxol..prednisone anyone?

Forums General Melanoma Community Experiences please…Carbo/taxol..prednisone anyone?

  • Post
    IvanaDim
    Participant
      Hello,

      Last results shows my father has progression πŸ™ more mets to liver, one spot to lung. So far tried keytruda, biochemo and now dr says carbo/taxol. Did anyone got good results from carbo/taxol? Is it very brutal?
      He is in pain and I need your opinion allso on prednisone. I read that it supresses the immune system and we dont need that, but… Anyone has expirience? Does it help and how much you take? How long?

      Thanks for any suggetions…
      Best wishes to all!

      Kind regards,
      Ivana

    Viewing 5 reply threads
    • Replies
        Polymath
        Participant

          Hello Ivana,

          Sorry to hear about Dad.  First question; Is he being treated by a melanoma specialist, at a large research institution?  He should be treated by a doctor who ONLY treats melanoma patients.  If not, go find one.  I have no direct experience with this chemo-combo but a quick read online suggests it is primarily used for non-small cell lung cancer, and I found no mention at all about melanoma.  I am assuming you are here because his diagnosis is melanoma. And yes, side-effects appear brutal which is why they treat with steroids first, to minimize the effects.  Finally, while my specialist does not like steroids during treatment, thinking inflammation of a tumor is good to achieve immune response, many here and many experts disagree with that conclusion.  Frankly, its the least of the worries.  More important is why Dad is going this route when it appears better avenues of treatment have not been explored? (your profile does not reveal anything).  Best in the battle.

          Gary

          Polymath
          Participant

            Hello Ivana,

            Sorry to hear about Dad.  First question; Is he being treated by a melanoma specialist, at a large research institution?  He should be treated by a doctor who ONLY treats melanoma patients.  If not, go find one.  I have no direct experience with this chemo-combo but a quick read online suggests it is primarily used for non-small cell lung cancer, and I found no mention at all about melanoma.  I am assuming you are here because his diagnosis is melanoma. And yes, side-effects appear brutal which is why they treat with steroids first, to minimize the effects.  Finally, while my specialist does not like steroids during treatment, thinking inflammation of a tumor is good to achieve immune response, many here and many experts disagree with that conclusion.  Frankly, its the least of the worries.  More important is why Dad is going this route when it appears better avenues of treatment have not been explored? (your profile does not reveal anything).  Best in the battle.

            Gary

            Polymath
            Participant

              Hello Ivana,

              Sorry to hear about Dad.  First question; Is he being treated by a melanoma specialist, at a large research institution?  He should be treated by a doctor who ONLY treats melanoma patients.  If not, go find one.  I have no direct experience with this chemo-combo but a quick read online suggests it is primarily used for non-small cell lung cancer, and I found no mention at all about melanoma.  I am assuming you are here because his diagnosis is melanoma. And yes, side-effects appear brutal which is why they treat with steroids first, to minimize the effects.  Finally, while my specialist does not like steroids during treatment, thinking inflammation of a tumor is good to achieve immune response, many here and many experts disagree with that conclusion.  Frankly, its the least of the worries.  More important is why Dad is going this route when it appears better avenues of treatment have not been explored? (your profile does not reveal anything).  Best in the battle.

              Gary

                IvanaDim
                Participant
                  Hi Gary,

                  Thanks for the reply. My dad has mucosal melanoma wild type. Since we live in small country on Balkan unfortunately non of the new approved therapies is covered by insurance, somehow we collected money for 6 rounds of keytruda and that is it πŸ™ other problem is the melaboma specialist…not existing such here πŸ™ so my source of knowledge is this precious forum and advices for all of you.. He is too weak now to go travel abroad so I try to find out if chemotherapy will do any good or I have to leave therapies out.. I know it souds like dead end but I know that God takes care for my dad and things will work out. He must win this terrible melanoma!!!

                  IvanaDim
                  Participant
                    Hi Gary,

                    Thanks for the reply. My dad has mucosal melanoma wild type. Since we live in small country on Balkan unfortunately non of the new approved therapies is covered by insurance, somehow we collected money for 6 rounds of keytruda and that is it πŸ™ other problem is the melaboma specialist…not existing such here πŸ™ so my source of knowledge is this precious forum and advices for all of you.. He is too weak now to go travel abroad so I try to find out if chemotherapy will do any good or I have to leave therapies out.. I know it souds like dead end but I know that God takes care for my dad and things will work out. He must win this terrible melanoma!!!

                    IvanaDim
                    Participant
                      Hi Gary,

                      Thanks for the reply. My dad has mucosal melanoma wild type. Since we live in small country on Balkan unfortunately non of the new approved therapies is covered by insurance, somehow we collected money for 6 rounds of keytruda and that is it πŸ™ other problem is the melaboma specialist…not existing such here πŸ™ so my source of knowledge is this precious forum and advices for all of you.. He is too weak now to go travel abroad so I try to find out if chemotherapy will do any good or I have to leave therapies out.. I know it souds like dead end but I know that God takes care for my dad and things will work out. He must win this terrible melanoma!!!

                      Polymath
                      Participant

                        Hi Ivana,

                        I am so sorry about this situation and the limited choices Dad has. It can be easily forgotten that each individual case is unique.  Again, I'm not so sure about this treatment but it could be noted that the anti PD-1 drug Opdivo, which works in an almost identical way as Keytruda has been marketed as a treatment for non-small cell lung cancer so there may be some vague connection.  But that since Keytruda did little to help, it does not look particularly good to expect carbo/taxol to do much.  A suggestion would be to find out if he is BRAF positive, and possibly use a BRAF inhibitor like Zelboraf, or the combo of Tafinlar/Mekinist which has been found effective in quickly lowering tumor burden and buying time for other more effective longer term treatments. Best to you both.

                        Gary

                        Polymath
                        Participant

                          Hi Ivana,

                          I am so sorry about this situation and the limited choices Dad has. It can be easily forgotten that each individual case is unique.  Again, I'm not so sure about this treatment but it could be noted that the anti PD-1 drug Opdivo, which works in an almost identical way as Keytruda has been marketed as a treatment for non-small cell lung cancer so there may be some vague connection.  But that since Keytruda did little to help, it does not look particularly good to expect carbo/taxol to do much.  A suggestion would be to find out if he is BRAF positive, and possibly use a BRAF inhibitor like Zelboraf, or the combo of Tafinlar/Mekinist which has been found effective in quickly lowering tumor burden and buying time for other more effective longer term treatments. Best to you both.

                          Gary

                          Polymath
                          Participant

                            Hi Ivana,

                            I am so sorry about this situation and the limited choices Dad has. It can be easily forgotten that each individual case is unique.  Again, I'm not so sure about this treatment but it could be noted that the anti PD-1 drug Opdivo, which works in an almost identical way as Keytruda has been marketed as a treatment for non-small cell lung cancer so there may be some vague connection.  But that since Keytruda did little to help, it does not look particularly good to expect carbo/taxol to do much.  A suggestion would be to find out if he is BRAF positive, and possibly use a BRAF inhibitor like Zelboraf, or the combo of Tafinlar/Mekinist which has been found effective in quickly lowering tumor burden and buying time for other more effective longer term treatments. Best to you both.

                            Gary

                          jvictoria
                          Participant

                            Hi… I was on prednisone, worked well to sooth the side effects of my treatment. Good luck

                            jvictoria
                            Participant

                              Hi… I was on prednisone, worked well to sooth the side effects of my treatment. Good luck

                              jvictoria
                              Participant

                                Hi… I was on prednisone, worked well to sooth the side effects of my treatment. Good luck

                                  Casitas1
                                  Participant

                                    I did these in low dose back in Dec. The reason was to aggravate the tumor and allow the Immunotherapy to infiltrate tumor better. Had disease in bone, lymph node and cheek. I had done 2 infusions of ipi/nivo prior to this and two doses nivo alone after. Had to stop both immunotherapies due to side effects, However, scans after nivo showed no disease in bone met or node. My soft tissue tumor in cheek had grown by a third(size of golf ball). Was going to try Nivo again but Dr. was able to get Keytruda instead. Nine infusions in and tolerating well. Tumor mostly gone. Scans and infusion this Wed to see if any disease left. Steroids worked well for bad side effects as well as Remicade.
                                     

                                    Good luck to your Dad,

                                    Paul

                                    Casitas1
                                    Participant

                                      I did these in low dose back in Dec. The reason was to aggravate the tumor and allow the Immunotherapy to infiltrate tumor better. Had disease in bone, lymph node and cheek. I had done 2 infusions of ipi/nivo prior to this and two doses nivo alone after. Had to stop both immunotherapies due to side effects, However, scans after nivo showed no disease in bone met or node. My soft tissue tumor in cheek had grown by a third(size of golf ball). Was going to try Nivo again but Dr. was able to get Keytruda instead. Nine infusions in and tolerating well. Tumor mostly gone. Scans and infusion this Wed to see if any disease left. Steroids worked well for bad side effects as well as Remicade.
                                       

                                      Good luck to your Dad,

                                      Paul

                                      Casitas1
                                      Participant

                                        I did these in low dose back in Dec. The reason was to aggravate the tumor and allow the Immunotherapy to infiltrate tumor better. Had disease in bone, lymph node and cheek. I had done 2 infusions of ipi/nivo prior to this and two doses nivo alone after. Had to stop both immunotherapies due to side effects, However, scans after nivo showed no disease in bone met or node. My soft tissue tumor in cheek had grown by a third(size of golf ball). Was going to try Nivo again but Dr. was able to get Keytruda instead. Nine infusions in and tolerating well. Tumor mostly gone. Scans and infusion this Wed to see if any disease left. Steroids worked well for bad side effects as well as Remicade.
                                         

                                        Good luck to your Dad,

                                        Paul

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