Ipilmumab and Zelboraf

Forums General Melanoma Community Ipilmumab and Zelboraf

  • Post
    Dan14
    Participant
      I have stage 3 melanoma. Have been on the Ipilmumab drug its been working wonders, but in NZ is not government funded and cost thousands of dollars. I can no longer afford it. They are putting me on a drug trial of Zelboraf . How has it been for people on this? Have you got good results?? what about side effects? i feel a bit unsure of what to expect of it
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    • Replies
        tcell
        Participant

          Hi,

          sorry for the trouble you are in.

          i am neither taking Ipi nor zel but currently on the GSK BRAF / MEK combo.

          Since I have started posting here I have observed that always when it takes longer for people to give answers the question is probably pretty tricky!

          So just to understand: The only thing that Ipi and Zel have in common is that they are both there for treating melanoma.

          When you read the studies you will find that generally: 

          – a BRAF inhibitor such as Zel or Tafinlar that I am taking can achieve spectecular results in a very short time in reducing the tumor load in a kot of people but might stop to do so within the first year you take it. It has a long list of possible side effects that range from mild to severe. A very common example is hypersensitivity to the sun.

          whereas

          – Ipi as an immunotherapy is known to have helped a few people survive for more than a decade but most people do not respond to it at all. It is very toxic and can have severe side effects that require hospitalization.

          Lucky people respond well to Ipi without encountering severe problems and switch to zel or Anti-PD1 when Ipi stops working for them. 

          Maybe one possible idea would be to take Zel for a while but find a means of getring Anti-pd1 like within a trial or compassionate use program!

          Wish u all the best for whichever way you go!

          tcell
          Participant

            Hi,

            sorry for the trouble you are in.

            i am neither taking Ipi nor zel but currently on the GSK BRAF / MEK combo.

            Since I have started posting here I have observed that always when it takes longer for people to give answers the question is probably pretty tricky!

            So just to understand: The only thing that Ipi and Zel have in common is that they are both there for treating melanoma.

            When you read the studies you will find that generally: 

            – a BRAF inhibitor such as Zel or Tafinlar that I am taking can achieve spectecular results in a very short time in reducing the tumor load in a kot of people but might stop to do so within the first year you take it. It has a long list of possible side effects that range from mild to severe. A very common example is hypersensitivity to the sun.

            whereas

            – Ipi as an immunotherapy is known to have helped a few people survive for more than a decade but most people do not respond to it at all. It is very toxic and can have severe side effects that require hospitalization.

            Lucky people respond well to Ipi without encountering severe problems and switch to zel or Anti-PD1 when Ipi stops working for them. 

            Maybe one possible idea would be to take Zel for a while but find a means of getring Anti-pd1 like within a trial or compassionate use program!

            Wish u all the best for whichever way you go!

            tcell
            Participant

              Hi,

              sorry for the trouble you are in.

              i am neither taking Ipi nor zel but currently on the GSK BRAF / MEK combo.

              Since I have started posting here I have observed that always when it takes longer for people to give answers the question is probably pretty tricky!

              So just to understand: The only thing that Ipi and Zel have in common is that they are both there for treating melanoma.

              When you read the studies you will find that generally: 

              – a BRAF inhibitor such as Zel or Tafinlar that I am taking can achieve spectecular results in a very short time in reducing the tumor load in a kot of people but might stop to do so within the first year you take it. It has a long list of possible side effects that range from mild to severe. A very common example is hypersensitivity to the sun.

              whereas

              – Ipi as an immunotherapy is known to have helped a few people survive for more than a decade but most people do not respond to it at all. It is very toxic and can have severe side effects that require hospitalization.

              Lucky people respond well to Ipi without encountering severe problems and switch to zel or Anti-PD1 when Ipi stops working for them. 

              Maybe one possible idea would be to take Zel for a while but find a means of getring Anti-pd1 like within a trial or compassionate use program!

              Wish u all the best for whichever way you go!

              POW
              Participant

                Are you sure you are stage 3 (i.e., cancer in lymph nodes draining the primary lesion but no other cancer in the body)? In the US, interferon is the only approved treatment for stage 3 melanoma. Patients would not be given either ipi or zelboraf except in unusual circumstances. Why are you taking these drugs?

                POW
                Participant

                  Are you sure you are stage 3 (i.e., cancer in lymph nodes draining the primary lesion but no other cancer in the body)? In the US, interferon is the only approved treatment for stage 3 melanoma. Patients would not be given either ipi or zelboraf except in unusual circumstances. Why are you taking these drugs?

                  POW
                  Participant

                    Are you sure you are stage 3 (i.e., cancer in lymph nodes draining the primary lesion but no other cancer in the body)? In the US, interferon is the only approved treatment for stage 3 melanoma. Patients would not be given either ipi or zelboraf except in unusual circumstances. Why are you taking these drugs?

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