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Treatment Options Stage 3

Forums Mucosal Melanoma Community Treatment Options Stage 3

  • Post
    sjl
    Participant

      Well, here I am again with more questions.  My husband is currently stage 3c mucosal melanoma and is responding exceptionally well to carbo/taxil.  Plus he feels good.  The doctor intially said it would have no durable response but after the first treatment they think there's a chance that it might just work for him.  Some of you have pointed out to me that all too often the response is only temporary.  So, what might plan B be?  He's been told that he can't have IL2, is BRAF and CKit negative, and can't do clinical trials because of a seconday

      Well, here I am again with more questions.  My husband is currently stage 3c mucosal melanoma and is responding exceptionally well to carbo/taxil.  Plus he feels good.  The doctor intially said it would have no durable response but after the first treatment they think there's a chance that it might just work for him.  Some of you have pointed out to me that all too often the response is only temporary.  So, what might plan B be?  He's been told that he can't have IL2, is BRAF and CKit negative, and can't do clinical trials because of a seconday primary lung cancer.  Yervoy was the one they were going to try but because his tumors were so extremely aggressive they went with the chemo to get things under control and then move on to something else.  I just checked our insurance company's formulary and Yervoy is not covered.  There is absolutely NO WAY that we can pay for it.  The expenses are hard enough as it is already.  Anyone have any luck getting the insurance to pay somehow?  We have PPO Blue – Highmark Blue Cross Blue/Shield.  If Yerovy is not an option then what in the world is left for my husband?  Initally they were going to do interferon and radiation but that plan went out the window when the tumors popped up overnight and took off like wild fire.  The radiologist who is treating the lung cancer mentioned that he may, at some point, radiate the neck area where the tumors popped up.  Honestly, I don't know how all of you good people handle this.  It's been 5 months and I'm still a basket case.  Thankfully, my husband is a "go with the flow" type of guy and is handling this far better than I.  I'm scared out of my mind but I try my darndest not to let him know. 

    Viewing 8 reply threads
    • Replies
        Linny
        Participant

          Have you tried checking your insurance company's formulary to see if Ipilimumab is covered? Maybe it's listed under that name instead of Yervoy.

          Moffitt over in Tampa, FL expanded their Anti PD-1 trial to include stage IIIc patients. It might be worth your while contacting them. I don't know what the specifics of that trial are, though.

          Linny
          Participant

            Have you tried checking your insurance company's formulary to see if Ipilimumab is covered? Maybe it's listed under that name instead of Yervoy.

            Moffitt over in Tampa, FL expanded their Anti PD-1 trial to include stage IIIc patients. It might be worth your while contacting them. I don't know what the specifics of that trial are, though.

            Linny
            Participant

              Have you tried checking your insurance company's formulary to see if Ipilimumab is covered? Maybe it's listed under that name instead of Yervoy.

              Moffitt over in Tampa, FL expanded their Anti PD-1 trial to include stage IIIc patients. It might be worth your while contacting them. I don't know what the specifics of that trial are, though.

              Tim–MRF
              Guest

                You can get help from the maker of Yervoy, both in working to get it approved for your husband's treatment and, if that doesn't work, in getting reduced cost for the drug.  Your healthcare provider can start the process by going to http://www.destinationaccess.com  or by calling 800 861-0048.  

                If you have problems with this process let me know and I will contact the company to get some internal help.

                Hopefully this  won't be needed and your huisband will continue to respond to the chemo.

                Tim–MRF

                Tim–MRF
                Guest

                  You can get help from the maker of Yervoy, both in working to get it approved for your husband's treatment and, if that doesn't work, in getting reduced cost for the drug.  Your healthcare provider can start the process by going to http://www.destinationaccess.com  or by calling 800 861-0048.  

                  If you have problems with this process let me know and I will contact the company to get some internal help.

                  Hopefully this  won't be needed and your huisband will continue to respond to the chemo.

                  Tim–MRF

                  Tim–MRF
                  Guest

                    You can get help from the maker of Yervoy, both in working to get it approved for your husband's treatment and, if that doesn't work, in getting reduced cost for the drug.  Your healthcare provider can start the process by going to http://www.destinationaccess.com  or by calling 800 861-0048.  

                    If you have problems with this process let me know and I will contact the company to get some internal help.

                    Hopefully this  won't be needed and your huisband will continue to respond to the chemo.

                    Tim–MRF

                    Gene_S
                    Participant

                      Possibly this could be plan B?

                      Mucosal malignant melanoma treated by carbon ion radiotherapy_ Cure Hunter online

                      http://search.yahoo.com/search;_ylt=ApVT7sfXLs0Nk3DmV2t2qySbvZx4?p=Mucosal+malignant+melanoma+treated+by+carbon+ion+radiotherapy_++CureHunter&toggle=1&cop=mss&ei=UTF-8&fr=yfp-t-701

                      Best wishes,

                      Gene

                        NYKaren
                        Participant
                          Hi there,
                          Sorry to meet you under these circumstances, but glad you’ve come to such a supportive site.
                          You may have been asked this already… Where is your husband being treated? Also, as far as anti- pd1 trials, or any clinical trial, it is the sponsoring drug company itself, not the hospital, that determines the criteria for acceptance into a trial, ie, stage, measurable disease, etc.

                          If your husband does receive yervoy, I cannot stress strongly enough to make sure that his onc is very experienced in the drug and its potential side-effects. FYI, I was on yervoy twice, a year apart, and the first time experienced side-effects that were entirely manageable by my docs at Sloan Kettering.
                          All the best,
                          karen.

                          NYKaren
                          Participant
                            Hi there,
                            Sorry to meet you under these circumstances, but glad you’ve come to such a supportive site.
                            You may have been asked this already… Where is your husband being treated? Also, as far as anti- pd1 trials, or any clinical trial, it is the sponsoring drug company itself, not the hospital, that determines the criteria for acceptance into a trial, ie, stage, measurable disease, etc.

                            If your husband does receive yervoy, I cannot stress strongly enough to make sure that his onc is very experienced in the drug and its potential side-effects. FYI, I was on yervoy twice, a year apart, and the first time experienced side-effects that were entirely manageable by my docs at Sloan Kettering.
                            All the best,
                            karen.

                            NYKaren
                            Participant
                              Hi there,
                              Sorry to meet you under these circumstances, but glad you’ve come to such a supportive site.
                              You may have been asked this already… Where is your husband being treated? Also, as far as anti- pd1 trials, or any clinical trial, it is the sponsoring drug company itself, not the hospital, that determines the criteria for acceptance into a trial, ie, stage, measurable disease, etc.

                              If your husband does receive yervoy, I cannot stress strongly enough to make sure that his onc is very experienced in the drug and its potential side-effects. FYI, I was on yervoy twice, a year apart, and the first time experienced side-effects that were entirely manageable by my docs at Sloan Kettering.
                              All the best,
                              karen.

                            Gene_S
                            Participant

                              Possibly this could be plan B?

                              Mucosal malignant melanoma treated by carbon ion radiotherapy_ Cure Hunter online

                              http://search.yahoo.com/search;_ylt=ApVT7sfXLs0Nk3DmV2t2qySbvZx4?p=Mucosal+malignant+melanoma+treated+by+carbon+ion+radiotherapy_++CureHunter&toggle=1&cop=mss&ei=UTF-8&fr=yfp-t-701

                              Best wishes,

                              Gene

                              Gene_S
                              Participant

                                Possibly this could be plan B?

                                Mucosal malignant melanoma treated by carbon ion radiotherapy_ Cure Hunter online

                                http://search.yahoo.com/search;_ylt=ApVT7sfXLs0Nk3DmV2t2qySbvZx4?p=Mucosal+malignant+melanoma+treated+by+carbon+ion+radiotherapy_++CureHunter&toggle=1&cop=mss&ei=UTF-8&fr=yfp-t-701

                                Best wishes,

                                Gene

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