5 mos Zel still working -> onto IPI-> back to Zel

› Forums › General Melanoma Community › 5 mos Zel still working -> onto IPI-> back to Zel

  • Post
    • September 18, 2012 at 2:00 pm
    awillett1991
    Participant
      After some very questionable areas on my PET 2 weeks ago, I had a clear CT report yesterday. So after 5 mos on ( and off) Zel, tiny brain met resolved, and cardiac tumor has shrunk to the point it isn’t visible on PET but MRI shows it as 7×11. And NOTHING NEW!!

      Due to my low lymphs (thanks biochemo) + cardiac met, I am intelligible for HD IL2 or any trials :(. Before Zel fails we are going to try IPI since I’ve never been on it. Probably next wk – waiting on insurance and I have to wean off 5mg of Prednisone I’ve been on since April.

      Then going back on the Zel, or hoping the new BRAF and MEK drugs will be approved by then. Some lesser side effects would be great. At 5 mos, the hair on my head JUST stopped falling out, it is so thin now – blech.

      Would love to know if anyone has tried this or similar. I don’t really have a lot of options, yso this seems reasonable to me while I have very little disease.

    Viewing 5 reply threads
    • Replies
        • September 18, 2012 at 10:14 pm
        POW
        Participant

          Amy, I think you're doing great! It sounds like you had a really rough time with Zelboraf side effects, but you and your doctor seem to be working out the best dose/regimen for you and, most importantly, IT'S WORKING!! Hooray for you! My brother (Stage IV with brain mets) had no side effects from Zelboraf, but it did not work for him. So maybe there is something to the idea that side effects are directly related to effectiveness. Only time and many case reports will tell. But good for you!

           

          Knowing that melanoma does become resistant to Z in a span of months, I think you are wise to hit the cancer with Ipi now and go back to the Z later. Yes, you are wandering into uncharted territory here, but your logic is sound.  I wish you all the best.

          • September 18, 2012 at 10:14 pm
          POW
          Participant

            Amy, I think you're doing great! It sounds like you had a really rough time with Zelboraf side effects, but you and your doctor seem to be working out the best dose/regimen for you and, most importantly, IT'S WORKING!! Hooray for you! My brother (Stage IV with brain mets) had no side effects from Zelboraf, but it did not work for him. So maybe there is something to the idea that side effects are directly related to effectiveness. Only time and many case reports will tell. But good for you!

             

            Knowing that melanoma does become resistant to Z in a span of months, I think you are wise to hit the cancer with Ipi now and go back to the Z later. Yes, you are wandering into uncharted territory here, but your logic is sound.  I wish you all the best.

            • September 18, 2012 at 10:14 pm
            POW
            Participant

              Amy, I think you're doing great! It sounds like you had a really rough time with Zelboraf side effects, but you and your doctor seem to be working out the best dose/regimen for you and, most importantly, IT'S WORKING!! Hooray for you! My brother (Stage IV with brain mets) had no side effects from Zelboraf, but it did not work for him. So maybe there is something to the idea that side effects are directly related to effectiveness. Only time and many case reports will tell. But good for you!

               

              Knowing that melanoma does become resistant to Z in a span of months, I think you are wise to hit the cancer with Ipi now and go back to the Z later. Yes, you are wandering into uncharted territory here, but your logic is sound.  I wish you all the best.

              • September 19, 2012 at 2:03 am
              AllyNTAus
              Participant
                Amy, so glad to hear Zel still seems to be working for you, but it sure is a tightrope to walk, knowing that it might fail. Glad your hair loss has stopped, I know what you feel like, mine has gotten so thin too, and is still coming out, I can’t do anything with it, irk.

                I would keep fingers crossed for the MEK inhibitor, surely it must get to the market shortlybut in the meantime, going to Ipi sounds like a good plan.

                I am sitting here this morning having had my scans, trying not to worry about what I will read when I pick them up this afternoon, but the darned new lump in my armpit is freaking me out. I reckon Ipi might be the next option for me too if things are not looking good today and if GSK won’t extend me compassionate access to the MEK inhibitor (doc I spoke to last week seemed to thinks this might be possible but have to wait and talk to the team tomorrow).

                Best of luck,
                Ally

                • September 19, 2012 at 2:03 am
                AllyNTAus
                Participant
                  Amy, so glad to hear Zel still seems to be working for you, but it sure is a tightrope to walk, knowing that it might fail. Glad your hair loss has stopped, I know what you feel like, mine has gotten so thin too, and is still coming out, I can’t do anything with it, irk.

                  I would keep fingers crossed for the MEK inhibitor, surely it must get to the market shortlybut in the meantime, going to Ipi sounds like a good plan.

                  I am sitting here this morning having had my scans, trying not to worry about what I will read when I pick them up this afternoon, but the darned new lump in my armpit is freaking me out. I reckon Ipi might be the next option for me too if things are not looking good today and if GSK won’t extend me compassionate access to the MEK inhibitor (doc I spoke to last week seemed to thinks this might be possible but have to wait and talk to the team tomorrow).

                  Best of luck,
                  Ally

                  • September 19, 2012 at 2:03 am
                  AllyNTAus
                  Participant
                    Amy, so glad to hear Zel still seems to be working for you, but it sure is a tightrope to walk, knowing that it might fail. Glad your hair loss has stopped, I know what you feel like, mine has gotten so thin too, and is still coming out, I can’t do anything with it, irk.

                    I would keep fingers crossed for the MEK inhibitor, surely it must get to the market shortlybut in the meantime, going to Ipi sounds like a good plan.

                    I am sitting here this morning having had my scans, trying not to worry about what I will read when I pick them up this afternoon, but the darned new lump in my armpit is freaking me out. I reckon Ipi might be the next option for me too if things are not looking good today and if GSK won’t extend me compassionate access to the MEK inhibitor (doc I spoke to last week seemed to thinks this might be possible but have to wait and talk to the team tomorrow).

                    Best of luck,
                    Ally

                Viewing 5 reply threads
                • You must be logged in to reply to this topic.
                About the MRF Patient Forum

                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                Popular Topics