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decarbazine (chemo) before ipi (yervoy) ??
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decarbazine (chemo) before ipi (yervoy) ??

› Forums › General Melanoma Community › decarbazine (chemo) before ipi (yervoy) ??

  • Post
    • August 11, 2011 at 6:27 pm
    lyndaloo
    Participant

      My husband was tested for BRAF and is negative.  Currently his brain mets are stable (after radiation and surgery) and his lung mets are not there anymore (after surgery).  He does have a few small spots that we know about but nothing in his vital organs. Watching and waiting is an option our doctor has given him or chemo (decarbazine), if chemo fails then he can get ipi. I am wondering how many rounds of chemo must be tried in order to be eligible for ipi (yervoy).  I am fearful they may pull the ipi study soon.

      My husband was tested for BRAF and is negative.  Currently his brain mets are stable (after radiation and surgery) and his lung mets are not there anymore (after surgery).  He does have a few small spots that we know about but nothing in his vital organs. Watching and waiting is an option our doctor has given him or chemo (decarbazine), if chemo fails then he can get ipi. I am wondering how many rounds of chemo must be tried in order to be eligible for ipi (yervoy).  I am fearful they may pull the ipi study soon.  Any insight would be helpful at this point, 

      Loving wife,

      lyndaloo

    Viewing 3 reply threads
    • Replies
        • August 11, 2011 at 6:38 pm
        Teodora
        Guest

          Hi Lynda,

           

          Funny enoufh today is the second time I am about to mention Lisa from Toronto-she is identical case and I hope she sees  your posting and replies straight away.

          She just completed Decarbazine with no results and had started Ipi/lung nodules/.You can look her up "Lisa13" in the "Search"field.

          Good luck to your husband.

            • August 11, 2011 at 6:54 pm
            lyndaloo
            Participant

              Thank you, I have contacted Lisa, waiting to hear back. 

               

              Lyndaloo

              • August 11, 2011 at 10:00 pm
              Lisa13
              Participant

                I'm popular today!  Thanks Teodora 🙂

                I did 2 rounds of dacarbazine and it didn't work for my lung mets.  Yesterday I started ipi which was 29 days after my last dose of DTIC.  In Canada, you have to attempt 2 rounds before going onto another treatment. Some people have responsed to DTIC (dacarbazine) and if so, they would continue on with the chemo.

                I had a choice between doing dacarbazine or a clinical trial for IL-21. I chose the dacarbazine as I didn't want to wait for a bed to become available – I wanted to start treatment ASAP. After 2 rounds of chemo, I only had limited growth in almost all the nodules in my lungs, so they were still very small and ready for ipi.   Since ipi needs time to work, it's best to do it when you have the time and arn't progressing rapidly.

                P.S.  Dacarbazine was a breeze for me. Except for 2-3 days of feeling like I had the flu, the rest was a walk in the park.

                If you have any other questions, I'm here!

                Best of luck,

                Lisa

                • August 11, 2011 at 10:31 pm
                lyndaloo
                Participant

                  Thank you for your quick response Lisa, I will pass the information on to my husband.  Its good to know the chemo can be done without making a person sick to the point of having no quality of life.  I hope and pray the ipi drug will get to work on your mets, it sounds very promising. My husband willl probably start chemo in September, trying to keep life positive as my husband was really disappointed with the BRAF news this week.

                  lyndaloo

                  • August 11, 2011 at 11:41 pm
                  Lisa13
                  Participant

                    Hi Lyndaloo,

                    Everyone responds differently to chemo, so maybe I was lucky. I know if I had continued on it, the fatigue probably would have set in.   Other than that, I continued on as if I wasn't on chemo.

                    I'm not BRAF positive either so I know your disappointment. There are other treatments available and promising clinical trials, so something is bound to come out with as much promise as these BRAF inhibitors. My oncologist said researchers are now working for something for BRAF negative people. 

                    Lisa

                    • August 11, 2011 at 11:41 pm
                    Lisa13
                    Participant

                      Hi Lyndaloo,

                      Everyone responds differently to chemo, so maybe I was lucky. I know if I had continued on it, the fatigue probably would have set in.   Other than that, I continued on as if I wasn't on chemo.

                      I'm not BRAF positive either so I know your disappointment. There are other treatments available and promising clinical trials, so something is bound to come out with as much promise as these BRAF inhibitors. My oncologist said researchers are now working for something for BRAF negative people. 

                      Lisa

                      • August 11, 2011 at 10:31 pm
                      lyndaloo
                      Participant

                        Thank you for your quick response Lisa, I will pass the information on to my husband.  Its good to know the chemo can be done without making a person sick to the point of having no quality of life.  I hope and pray the ipi drug will get to work on your mets, it sounds very promising. My husband willl probably start chemo in September, trying to keep life positive as my husband was really disappointed with the BRAF news this week.

                        lyndaloo

                        • August 11, 2011 at 10:00 pm
                        Lisa13
                        Participant

                          I'm popular today!  Thanks Teodora 🙂

                          I did 2 rounds of dacarbazine and it didn't work for my lung mets.  Yesterday I started ipi which was 29 days after my last dose of DTIC.  In Canada, you have to attempt 2 rounds before going onto another treatment. Some people have responsed to DTIC (dacarbazine) and if so, they would continue on with the chemo.

                          I had a choice between doing dacarbazine or a clinical trial for IL-21. I chose the dacarbazine as I didn't want to wait for a bed to become available – I wanted to start treatment ASAP. After 2 rounds of chemo, I only had limited growth in almost all the nodules in my lungs, so they were still very small and ready for ipi.   Since ipi needs time to work, it's best to do it when you have the time and arn't progressing rapidly.

                          P.S.  Dacarbazine was a breeze for me. Except for 2-3 days of feeling like I had the flu, the rest was a walk in the park.

                          If you have any other questions, I'm here!

                          Best of luck,

                          Lisa

                          • August 11, 2011 at 6:54 pm
                          lyndaloo
                          Participant

                            Thank you, I have contacted Lisa, waiting to hear back. 

                             

                            Lyndaloo

                          • August 11, 2011 at 6:38 pm
                          Teodora
                          Guest

                            Hi Lynda,

                             

                            Funny enoufh today is the second time I am about to mention Lisa from Toronto-she is identical case and I hope she sees  your posting and replies straight away.

                            She just completed Decarbazine with no results and had started Ipi/lung nodules/.You can look her up "Lisa13" in the "Search"field.

                            Good luck to your husband.

                            • August 13, 2011 at 3:51 am
                            liseabraham
                            Participant

                              Hi Lynda, my husband also tested BRAF negative. He was recently diagnosed with malignant melanoma to the brain and lung and chest area. He just had his first Yervoy (ipi) treatment. As Yervoy is now passed by the FDA he had no problem being covered for it's use but he has medicare so I don't know about your situation. You should check with your oncologist and ask if your husband can be put on Yervoy without first having done chemo.

                              Good luck

                              Lise

                                • August 24, 2011 at 10:35 pm
                                lyndaloo
                                Participant

                                  Thank you for the info Lise, it sounds like you have been through the same turmoil tnat I have been through as a loving caregiver to a husband.  How old is your husband, mine is 48 years. Is your husband having a positive response to ipi as of yet?

                                  • August 25, 2011 at 6:01 am
                                  JerryfromFauq
                                  Participant

                                    Matter of curiuosity , which BRAF test was your husband negative on, the Roche or the GSK?  One might be negative on the Roche and still be positive  on the GSK.

                                    • August 25, 2011 at 6:01 am
                                    JerryfromFauq
                                    Participant

                                      Matter of curiuosity , which BRAF test was your husband negative on, the Roche or the GSK?  One might be negative on the Roche and still be positive  on the GSK.

                                      • August 24, 2011 at 10:35 pm
                                      lyndaloo
                                      Participant

                                        Thank you for the info Lise, it sounds like you have been through the same turmoil tnat I have been through as a loving caregiver to a husband.  How old is your husband, mine is 48 years. Is your husband having a positive response to ipi as of yet?

                                      • August 13, 2011 at 3:51 am
                                      liseabraham
                                      Participant

                                        Hi Lynda, my husband also tested BRAF negative. He was recently diagnosed with malignant melanoma to the brain and lung and chest area. He just had his first Yervoy (ipi) treatment. As Yervoy is now passed by the FDA he had no problem being covered for it's use but he has medicare so I don't know about your situation. You should check with your oncologist and ask if your husband can be put on Yervoy without first having done chemo.

                                        Good luck

                                        Lise

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