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Tolerating IPI too well?
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Tolerating IPI too well?

› Forums › General Melanoma Community › Tolerating IPI too well?

  • Post
    • July 12, 2011 at 5:00 am
    MaryBeth and Jeff
    Participant

      My husband has completed 3 of 4 Yervoy  treatments (his 4th treatment is this Friday). He has tolerated it extremely well.  No rash, no colitis,some fatigue. One week after the 1st treatment he did not felt slightly flu like and developed slight pnemonia. This lasted for about 1 day. One week after his 2nd treatment he felt a little bit worse and was tired for about 3 days. After 3rd treament …he felt virtually fine. I have read posts on here about doctors getting excited when the "yervoy" rash develops..meaning that it is working.

      My husband has completed 3 of 4 Yervoy  treatments (his 4th treatment is this Friday). He has tolerated it extremely well.  No rash, no colitis,some fatigue. One week after the 1st treatment he did not felt slightly flu like and developed slight pnemonia. This lasted for about 1 day. One week after his 2nd treatment he felt a little bit worse and was tired for about 3 days. After 3rd treament …he felt virtually fine. I have read posts on here about doctors getting excited when the "yervoy" rash develops..meaning that it is working. I am getting scared that Yervoy is not working. Since his 1st treatment he has developed a mass on his back and several other "lumpy" areas on his arms and legs. His onc just looks at the lumpy areas and says that its the melanoma breaking off and taking up residence elsewhere. For know he just wants to keep an eye on the mass on his back as it is close to his spine. (It was MRI'd). Here is what gets me ….I spoke to his onc tonight and he asks me how far have we gotten on his meds? I ask "what meds". Onc says the Thalidomide and Temador. (we discussed this last week as a next course of action if he fails Yervoy). I had to tell the onc that we havent gotten that far. Onc says we shouldnt wait for the last Yervoy treatment and begin with the Thalidomide and temador. I told onc …heck no…his final treament is this Friday…we might as well do it. He then agrees with me. I then have to practically school the onc and remind him that  the literature indicates with Yervoy , the mel often gets worse b4 it gets better. Am I wrong here? Does the development of an additional mass and lumps mean Yervoy failed for my husband? I did ask this of his onc and he says he believes it failed. By no means will I hold off on the T & T treatment…but is it fair to decare Yervoy failure b4 his 12 week and 16 week scans?  (I apologize if this post seems rambling)

    Viewing 5 reply threads
    • Replies
        • July 12, 2011 at 11:58 am
        jim Breitfeller
        Participant

           

          You may want to try High Dose IL-2 Therapy,  Once the Yervoy has blocked the Tregs, The Tcells would need IL-2 to grow and survive. I would ask your oncolgist to try interluekin-2 .

          http://www.box.net/shared/n0xcdimy5d

          http://www.box.net/shared/kjgr6dkztj

          http://www.box.net/shared/gnflaue91s

          Best regards,

           

          Jimmy B

          http://melanomamissionary.blogspot.com/

           

          • July 12, 2011 at 11:58 am
          jim Breitfeller
          Participant

             

            You may want to try High Dose IL-2 Therapy,  Once the Yervoy has blocked the Tregs, The Tcells would need IL-2 to grow and survive. I would ask your oncolgist to try interluekin-2 .

            http://www.box.net/shared/n0xcdimy5d

            http://www.box.net/shared/kjgr6dkztj

            http://www.box.net/shared/gnflaue91s

            Best regards,

             

            Jimmy B

            http://melanomamissionary.blogspot.com/

             

            • July 12, 2011 at 2:12 pm
            lhaley
            Participant

              I just had a long talk about Ipi with my mel specialist. He explained to me that when the nodes in the area get lumpy it's the lymphocites activating and it's a good thing. (I think I have the explaination right). I'm not on the drug, this was in response to my next  step and then I had questions about things I've read here.  He told me that he scans at 12 weeks and then rescans at 16 weeks because of delayed response. To him that's the reason he likes to use the drug when there is low tumor burden because of the time it takes to work. 

              He also told me that many local oncologists are afraid of the drug because they don't understand it. Some are pulled off to early and some just won't use the drug because they are afraid of it.   How much experience does your husbands Doctors have? He's come this far I don't see why he would want to stop within days of the last treatment.

              Is the temador and thalidomide in a trial?  I would also want to know the reasoning behind this combination and the research to back it up.

              I would be concerned about the mass but think that the lumps pretty much are common with ipi patients.  Could you ask for an early scan to see if anything internal has changed? You commented that he has had an mri but he needs something to compare it with after more treatments.

              Let us know how it goes!

              Linda

              • July 12, 2011 at 2:12 pm
              lhaley
              Participant

                I just had a long talk about Ipi with my mel specialist. He explained to me that when the nodes in the area get lumpy it's the lymphocites activating and it's a good thing. (I think I have the explaination right). I'm not on the drug, this was in response to my next  step and then I had questions about things I've read here.  He told me that he scans at 12 weeks and then rescans at 16 weeks because of delayed response. To him that's the reason he likes to use the drug when there is low tumor burden because of the time it takes to work. 

                He also told me that many local oncologists are afraid of the drug because they don't understand it. Some are pulled off to early and some just won't use the drug because they are afraid of it.   How much experience does your husbands Doctors have? He's come this far I don't see why he would want to stop within days of the last treatment.

                Is the temador and thalidomide in a trial?  I would also want to know the reasoning behind this combination and the research to back it up.

                I would be concerned about the mass but think that the lumps pretty much are common with ipi patients.  Could you ask for an early scan to see if anything internal has changed? You commented that he has had an mri but he needs something to compare it with after more treatments.

                Let us know how it goes!

                Linda

                  • July 13, 2011 at 1:06 am
                  MaryBeth and Jeff
                  Participant

                    Lindhas

                    My husband is the 1st in the state of VA to receive Yervoy, So his doc has no experience with it. Temador and Thalidomide are not in trial. They are approved treatments for stage IV Melanoma. (And i have neer heard of this treatment). They are administered orally. Yes I agree I need the research and reasoning behind the T & T treatment.

                    We did discuss interluekin -2, but doc feels it is too harsh of a treatment at this stage. My husband has only missed 2 days of work since Yervoy and is able to continue doing all of the things he has done before the treatment (mow the lawn, work on a car…etc).

                    Yes we are concerned about the mass, but MRI showed it is not affecting the spinal cord. and thus the radiologist and the medical onc agreed to keep monitoring it. The mass is not causing any pain. He does have a bad pain in the right gluteal area. There is no visible mass and doc could not feel anything. He is scheduled to have it MRI'd since it has recently been causing severe pain.

                    I did read about the lymphocytes activating and it being a good thing. We will not discontinue Yervoy. So he will have his final treatment this Friday. He will have the scan at 12 weeks but doc wants to start him on T & T before the 16 week scan as he does not want to wait.

                     

                    Thank you for your reply. This does put my mind at ease as I suspect the lumps are activated lymphocyes. I will request an absolute lymphocyte count.

                    • July 13, 2011 at 1:06 am
                    MaryBeth and Jeff
                    Participant

                      Lindhas

                      My husband is the 1st in the state of VA to receive Yervoy, So his doc has no experience with it. Temador and Thalidomide are not in trial. They are approved treatments for stage IV Melanoma. (And i have neer heard of this treatment). They are administered orally. Yes I agree I need the research and reasoning behind the T & T treatment.

                      We did discuss interluekin -2, but doc feels it is too harsh of a treatment at this stage. My husband has only missed 2 days of work since Yervoy and is able to continue doing all of the things he has done before the treatment (mow the lawn, work on a car…etc).

                      Yes we are concerned about the mass, but MRI showed it is not affecting the spinal cord. and thus the radiologist and the medical onc agreed to keep monitoring it. The mass is not causing any pain. He does have a bad pain in the right gluteal area. There is no visible mass and doc could not feel anything. He is scheduled to have it MRI'd since it has recently been causing severe pain.

                      I did read about the lymphocytes activating and it being a good thing. We will not discontinue Yervoy. So he will have his final treatment this Friday. He will have the scan at 12 weeks but doc wants to start him on T & T before the 16 week scan as he does not want to wait.

                       

                      Thank you for your reply. This does put my mind at ease as I suspect the lumps are activated lymphocyes. I will request an absolute lymphocyte count.

                      • July 13, 2011 at 1:26 am
                      MaryBeth and Jeff
                      Participant

                        I was mistaken regarding the Thalidomide and Temodar treatment. It is per phase II Trial Sloan- Kettering. It is a treament for the for the evidence of progressive brain mets. Next step for systemic treatment would be IL-2. Just so darn overwhelmed and getting confused with the various treatment plans.

                        • July 13, 2011 at 1:26 am
                        MaryBeth and Jeff
                        Participant

                          I was mistaken regarding the Thalidomide and Temodar treatment. It is per phase II Trial Sloan- Kettering. It is a treament for the for the evidence of progressive brain mets. Next step for systemic treatment would be IL-2. Just so darn overwhelmed and getting confused with the various treatment plans.

                          • July 13, 2011 at 1:54 am
                          lhaley
                          Participant

                            I know of 2 people on this board that go to UVA to a melanoma specialist. Both did IL2 there. Not sure of what trials are available.  You need to e-mail either DebbieVa or Jerry from Fauq.  If you can't find their e-mails let me know and I'll send them directly to you.

                            I saw on your profile that your in Yorktown. When we lived in Delaware we vacationed in Williamsburg at least once a year. That was our weekend getaway.

                            Linda

                            • July 13, 2011 at 1:54 am
                            lhaley
                            Participant

                              I know of 2 people on this board that go to UVA to a melanoma specialist. Both did IL2 there. Not sure of what trials are available.  You need to e-mail either DebbieVa or Jerry from Fauq.  If you can't find their e-mails let me know and I'll send them directly to you.

                              I saw on your profile that your in Yorktown. When we lived in Delaware we vacationed in Williamsburg at least once a year. That was our weekend getaway.

                              Linda

                              • July 13, 2011 at 2:25 am
                              MaryBeth and Jeff
                              Participant

                                Linda please email Debbie and Jerry's email addresses. My email address is [email protected]. I greatly appreciate it.

                                • July 13, 2011 at 2:25 am
                                MaryBeth and Jeff
                                Participant

                                  Linda please email Debbie and Jerry's email addresses. My email address is [email protected]. I greatly appreciate it.

                                • July 12, 2011 at 7:19 pm
                                jim Breitfeller
                                Participant

                                  Do you know if your husband's  ALC (absolute Lymphocyte Count) increased?

                                  If it doubles from the begining of Yervoy to week 12, you would be considered a responder.

                                  Tracking the Absolute Lymphocyte Count while on yervoy

                                  http://i384.photobucket.com/albums/oo290/jimmy_b/ClinicalBenefitwithCTLA-4MelanomaWo.jpg

                                  Warm Regards,

                                  Jimmy B

                                  • July 12, 2011 at 7:19 pm
                                  jim Breitfeller
                                  Participant

                                    Do you know if your husband's  ALC (absolute Lymphocyte Count) increased?

                                    If it doubles from the begining of Yervoy to week 12, you would be considered a responder.

                                    Tracking the Absolute Lymphocyte Count while on yervoy

                                    http://i384.photobucket.com/albums/oo290/jimmy_b/ClinicalBenefitwithCTLA-4MelanomaWo.jpg

                                    Warm Regards,

                                    Jimmy B

                                      • July 13, 2011 at 1:19 am
                                      MaryBeth and Jeff
                                      Participant

                                        Thank You Jimmy B. I will request an absolute lymphocye count.

                                        • July 13, 2011 at 1:19 am
                                        MaryBeth and Jeff
                                        Participant

                                          Thank You Jimmy B. I will request an absolute lymphocye count.

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