Melanoma (Stage IV), autoimmune disease and immunotherapy

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  • Post
    • November 22, 2016 at 1:39 pm
    SMacBosch
    Participant

      Good day, everyone.

      My husband is 39 years old and has systemic lupus erythematosus (SLE) and antiphospholipid antibody sydrome (APS – basically, an autoimmune blood clot disorder). 

      He was diagnosed with stage III melanoma 2.5 years ago in the jawline area, just in front of his left ear. After his GP did not get it biopsied the first time it was removed (even though ulcerated!), it came back with a vengeance and a dermatologist caught it about 5 months later. A neck resection removed a 5cm round and 42 lymph nodes in his neck. The surgeon did a great job and the edges were clean; however, the cancer was discovered in the sentinel node (but only in 1 out of 42 nodes!). Because my husband has SLE and APS and the cancer team was sure they got everything with the surgery, it was decided that no chemo would be performed at that time. The risk was too high for the 3% chance of benefit. He recovered from the surgery and we got on with our lives.

      In August of this year, he developed a headache that wouldn't go away. A CT discovered a walnut-sized met in his right frontal lobe. It was removed and a body scan was scheduled to check for other mets. His recovery from the brain surgery progressed well but at about 3 weeks post-op he started to decline, feeling weak, had vomiting, night sweats and a loss of appetite. It was around this time that a CT scan found a 10x11x13 tumour in his liver – inoperable. There are a couple other ones in the liver but this was the biggie.

      There was also something in his jejunum (bowel). Blood tests also showed that he was slowly losing blood and his INR was at 12 (a normal person should be 1, his therapeutic level to avoid clots is between 2 and 3). A couple transfusions were done over the next week as they tried to determine the cause of the bleed. A bowel resection was done to remove an egg-sized mass in his bowel. His blood levels returned somewhat to normal off at that point.

      Due to the inoperable tumour in his liver, his prognosis was 6 months to a year.

      In spite of the inherent dangers of chemo to someone with SLE and APS, we decided to go ahead using decarbazine (rather than the more dangerous immunotherapy). He felt great for a week and a half, then his body started going haywire again. High INR, low hemoglobin. More transfusions and hospital stays.

      Yesterday we found out that the decarbazine is not working, the tumour has grown a couple centimetres and he is still quite sick in spite of the fact that the chemo should have been out of his system over a week ago. He is currently in the hospital. The medical oncologist is now giving us only a couple months but has suggested Yervoy immunotherapy as a last resort to buy us more time. It is now up to us as to whether or not to go ahead on Friday with Yervoy. As someone with SLE/APS, the treatment could, literally, kill him, but if we want more time this would be our only option. My husband is leaning towards taking Yervoy.

      Anyone have experience with melanoma, autoimmune disease and side effects/results?

      Thanks, 

      Sandra

      p.s. I'm from Canada

    Viewing 14 reply threads
    • Replies
        • November 22, 2016 at 2:39 pm
        keepthefaith11
        Participant
          First off I am so sorry about all this happening to you. Someone else will have more insights but I just wanted to ask if Keytruda or Opdivo was mentioned as treatment? It has a much better response rate and is overall easier on the patient’s system than Yervoy.

          My heart goes out to you and I will be praying.

          Annie

          • November 22, 2016 at 2:39 pm
          keepthefaith11
          Participant
            First off I am so sorry about all this happening to you. Someone else will have more insights but I just wanted to ask if Keytruda or Opdivo was mentioned as treatment? It has a much better response rate and is overall easier on the patient’s system than Yervoy.

            My heart goes out to you and I will be praying.

            Annie

              • November 22, 2016 at 11:35 pm
              SMacBosch
              Participant

                I have heard good things about Keytruda and Opdivo. Thanks for the reminder. I will be sure to mention those options to the oncologist.

                The oncologist is in touch with my husband's lupus specialist and they have discussed options, There really aren't enough applicable stats, unfortunately. We just know it is very dangerous, which is why it was left as a last ditch effort. I have asked that they do monitor him very closely for any adverse reactions during and following immunotherapy.

                • November 22, 2016 at 11:35 pm
                SMacBosch
                Participant

                  I have heard good things about Keytruda and Opdivo. Thanks for the reminder. I will be sure to mention those options to the oncologist.

                  The oncologist is in touch with my husband's lupus specialist and they have discussed options, There really aren't enough applicable stats, unfortunately. We just know it is very dangerous, which is why it was left as a last ditch effort. I have asked that they do monitor him very closely for any adverse reactions during and following immunotherapy.

                  • November 22, 2016 at 11:35 pm
                  SMacBosch
                  Participant

                    I have heard good things about Keytruda and Opdivo. Thanks for the reminder. I will be sure to mention those options to the oncologist.

                    The oncologist is in touch with my husband's lupus specialist and they have discussed options, There really aren't enough applicable stats, unfortunately. We just know it is very dangerous, which is why it was left as a last ditch effort. I have asked that they do monitor him very closely for any adverse reactions during and following immunotherapy.

                  • November 22, 2016 at 2:39 pm
                  keepthefaith11
                  Participant
                    First off I am so sorry about all this happening to you. Someone else will have more insights but I just wanted to ask if Keytruda or Opdivo was mentioned as treatment? It has a much better response rate and is overall easier on the patient’s system than Yervoy.

                    My heart goes out to you and I will be praying.

                    Annie

                    • November 22, 2016 at 2:43 pm
                    cancersnewnormal
                    Participant

                      Sandra, I'm so sorry that you and your husband are faced with this terrible crisis. Unfortunately, there seems to be limited research for pre-existing autoimmune patients being treated with Yervoy. I did find one study, from a year ago, that was referenced in several articles. 

                      http://www.the-dermatologist.com/content/ipilimumab-ok-close-monitoring-autoimmune-disease-patients

                      Have the doctors tested for whether he is BRAF + or – ? With the lupus and APS, do doctors feel it would be safe to use BRAF inhibitor drugs? They tend to work more rapidly than immunotheraputic agents. Would it be possible to do just enough BRAF or immunotherapy to shrink the large liver mass down to a resectable size? I know that is not an easy surgery, as I have a friend who, prior to diagnosis, was an oncological surgeon. He discovered his own large liver mass and endured the surgical proceedure himself.

                      Here is another more recent article that I came across regarding treatment with anti-pd1 drugs on patients with autoimmune diseases. — http://www.medscape.com/viewarticle/864856

                      Best wishes to you both!  

                      • November 22, 2016 at 2:43 pm
                      cancersnewnormal
                      Participant

                        Sandra, I'm so sorry that you and your husband are faced with this terrible crisis. Unfortunately, there seems to be limited research for pre-existing autoimmune patients being treated with Yervoy. I did find one study, from a year ago, that was referenced in several articles. 

                        http://www.the-dermatologist.com/content/ipilimumab-ok-close-monitoring-autoimmune-disease-patients

                        Have the doctors tested for whether he is BRAF + or – ? With the lupus and APS, do doctors feel it would be safe to use BRAF inhibitor drugs? They tend to work more rapidly than immunotheraputic agents. Would it be possible to do just enough BRAF or immunotherapy to shrink the large liver mass down to a resectable size? I know that is not an easy surgery, as I have a friend who, prior to diagnosis, was an oncological surgeon. He discovered his own large liver mass and endured the surgical proceedure himself.

                        Here is another more recent article that I came across regarding treatment with anti-pd1 drugs on patients with autoimmune diseases. — http://www.medscape.com/viewarticle/864856

                        Best wishes to you both!  

                          • November 22, 2016 at 11:28 pm
                          SMacBosch
                          Participant

                            Unfortunately, he was BRAF negative at the primary site and in the mets. They tested both as it has changed in other cases.

                            Thanks for the links to further info. I will check those out.

                            Sandra

                            • November 22, 2016 at 11:28 pm
                            SMacBosch
                            Participant

                              Unfortunately, he was BRAF negative at the primary site and in the mets. They tested both as it has changed in other cases.

                              Thanks for the links to further info. I will check those out.

                              Sandra

                              • November 22, 2016 at 11:28 pm
                              SMacBosch
                              Participant

                                Unfortunately, he was BRAF negative at the primary site and in the mets. They tested both as it has changed in other cases.

                                Thanks for the links to further info. I will check those out.

                                Sandra

                              • November 22, 2016 at 2:43 pm
                              cancersnewnormal
                              Participant

                                Sandra, I'm so sorry that you and your husband are faced with this terrible crisis. Unfortunately, there seems to be limited research for pre-existing autoimmune patients being treated with Yervoy. I did find one study, from a year ago, that was referenced in several articles. 

                                http://www.the-dermatologist.com/content/ipilimumab-ok-close-monitoring-autoimmune-disease-patients

                                Have the doctors tested for whether he is BRAF + or – ? With the lupus and APS, do doctors feel it would be safe to use BRAF inhibitor drugs? They tend to work more rapidly than immunotheraputic agents. Would it be possible to do just enough BRAF or immunotherapy to shrink the large liver mass down to a resectable size? I know that is not an easy surgery, as I have a friend who, prior to diagnosis, was an oncological surgeon. He discovered his own large liver mass and endured the surgical proceedure himself.

                                Here is another more recent article that I came across regarding treatment with anti-pd1 drugs on patients with autoimmune diseases. — http://www.medscape.com/viewarticle/864856

                                Best wishes to you both!  

                                • November 23, 2016 at 1:39 am
                                Bubbles
                                Participant

                                  Sorry for all that you and your husband are dealing with, Sandra. Annie makes an important point…. ipi has a response rate of about 15% – while both anti-PD1 products (Keytruda and Opdivo) have a 40% response rate. But, perhaps even more important for your situation is that anti-PD1 triggers much fewer immune related side effects (though there are certainly some and they can be very serious) than ipi. While not easy, we are learning that with careful monitoring and using the least side effect prone meds as possible, folks with pre-existing immune related disease can tolerate and find success with immumotherapy. Here is just one case report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/anti-pd1-success-in-melanoma-despite.html

                                  I wish you and your husband my best. Celeste

                                  • November 23, 2016 at 1:39 am
                                  Bubbles
                                  Participant

                                    Sorry for all that you and your husband are dealing with, Sandra. Annie makes an important point…. ipi has a response rate of about 15% – while both anti-PD1 products (Keytruda and Opdivo) have a 40% response rate. But, perhaps even more important for your situation is that anti-PD1 triggers much fewer immune related side effects (though there are certainly some and they can be very serious) than ipi. While not easy, we are learning that with careful monitoring and using the least side effect prone meds as possible, folks with pre-existing immune related disease can tolerate and find success with immumotherapy. Here is just one case report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/anti-pd1-success-in-melanoma-despite.html

                                    I wish you and your husband my best. Celeste

                                    • November 23, 2016 at 1:39 am
                                    Bubbles
                                    Participant

                                      Sorry for all that you and your husband are dealing with, Sandra. Annie makes an important point…. ipi has a response rate of about 15% – while both anti-PD1 products (Keytruda and Opdivo) have a 40% response rate. But, perhaps even more important for your situation is that anti-PD1 triggers much fewer immune related side effects (though there are certainly some and they can be very serious) than ipi. While not easy, we are learning that with careful monitoring and using the least side effect prone meds as possible, folks with pre-existing immune related disease can tolerate and find success with immumotherapy. Here is just one case report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/anti-pd1-success-in-melanoma-despite.html

                                      I wish you and your husband my best. Celeste

                                      • November 23, 2016 at 4:57 pm
                                      Tim–MRF
                                      Guest

                                        Using immunotherapy in patients with autoimmune disease is tricky, but in many cases can be done. I have known of other patients with Lupus who had ipi or one of the anti-PD1 drugs (Keytruda/Opdivo). 

                                        I don't know the treatment team in Nova Scotia, but recommend strongly that this only be done by doctors who have a lot of experience with these drugs. If your husband's treatment team don't have extensive experience I recommend they try to collaborate with one of the leading experts in using these drugs. I know that doctors like Jedd Wolchok at Sloan-Kettering, Steve Hodi at Dana Farber, Jeff Weber at NYU, and others have dealt with this issue before. 

                                        Your doctors likely know of these experts and have those connections. If not I am happy to reach out to them and see if they are willing to collaborate. Let me know if I can help.

                                        Tim–MRF

                                        • November 23, 2016 at 4:57 pm
                                        Tim–MRF
                                        Guest

                                          Using immunotherapy in patients with autoimmune disease is tricky, but in many cases can be done. I have known of other patients with Lupus who had ipi or one of the anti-PD1 drugs (Keytruda/Opdivo). 

                                          I don't know the treatment team in Nova Scotia, but recommend strongly that this only be done by doctors who have a lot of experience with these drugs. If your husband's treatment team don't have extensive experience I recommend they try to collaborate with one of the leading experts in using these drugs. I know that doctors like Jedd Wolchok at Sloan-Kettering, Steve Hodi at Dana Farber, Jeff Weber at NYU, and others have dealt with this issue before. 

                                          Your doctors likely know of these experts and have those connections. If not I am happy to reach out to them and see if they are willing to collaborate. Let me know if I can help.

                                          Tim–MRF

                                          • November 23, 2016 at 4:57 pm
                                          Tim–MRF
                                          Guest

                                            Using immunotherapy in patients with autoimmune disease is tricky, but in many cases can be done. I have known of other patients with Lupus who had ipi or one of the anti-PD1 drugs (Keytruda/Opdivo). 

                                            I don't know the treatment team in Nova Scotia, but recommend strongly that this only be done by doctors who have a lot of experience with these drugs. If your husband's treatment team don't have extensive experience I recommend they try to collaborate with one of the leading experts in using these drugs. I know that doctors like Jedd Wolchok at Sloan-Kettering, Steve Hodi at Dana Farber, Jeff Weber at NYU, and others have dealt with this issue before. 

                                            Your doctors likely know of these experts and have those connections. If not I am happy to reach out to them and see if they are willing to collaborate. Let me know if I can help.

                                            Tim–MRF

                                              • November 24, 2016 at 2:08 am
                                              SMacBosch
                                              Participant

                                                Thanks so much, Tim! I will be sure to pass along those names to the medical oncologist! He seems like the type who would be open to input from sources with some experience.

                                                Sandra

                                                 

                                                • November 24, 2016 at 2:08 am
                                                SMacBosch
                                                Participant

                                                  Thanks so much, Tim! I will be sure to pass along those names to the medical oncologist! He seems like the type who would be open to input from sources with some experience.

                                                  Sandra

                                                   

                                                  • November 24, 2016 at 2:08 am
                                                  SMacBosch
                                                  Participant

                                                    Thanks so much, Tim! I will be sure to pass along those names to the medical oncologist! He seems like the type who would be open to input from sources with some experience.

                                                    Sandra

                                                     

                                                  • November 24, 2016 at 2:12 am
                                                  SMacBosch
                                                  Participant

                                                    An update: I was emailing back and forth with the oncologist today (he gave me his personal email address 🙂 ) and it appears I misheard him. He will be using Keytruda, not Yervoy.

                                                    Although, how I misheard, I'm not sure since I was familiar with both names prior to our discussion. But, we had just been told our '6 months to a year window' was closing down to 2 months just moments before so quite possible something in my brain misfired. 

                                                    • November 24, 2016 at 2:12 am
                                                    SMacBosch
                                                    Participant

                                                      An update: I was emailing back and forth with the oncologist today (he gave me his personal email address 🙂 ) and it appears I misheard him. He will be using Keytruda, not Yervoy.

                                                      Although, how I misheard, I'm not sure since I was familiar with both names prior to our discussion. But, we had just been told our '6 months to a year window' was closing down to 2 months just moments before so quite possible something in my brain misfired. 

                                                      • November 24, 2016 at 2:12 am
                                                      SMacBosch
                                                      Participant

                                                        An update: I was emailing back and forth with the oncologist today (he gave me his personal email address 🙂 ) and it appears I misheard him. He will be using Keytruda, not Yervoy.

                                                        Although, how I misheard, I'm not sure since I was familiar with both names prior to our discussion. But, we had just been told our '6 months to a year window' was closing down to 2 months just moments before so quite possible something in my brain misfired. 

                                                          • November 28, 2016 at 2:16 pm
                                                          SMacBosch
                                                          Participant

                                                            The first infusion of Keytruda was Friday afternoon (Nov 25). All went well with (so far) minimal side effects (mild diarrhea). My husband is still in the hospital and is being closely monitored, though.

                                                            • November 28, 2016 at 2:16 pm
                                                            SMacBosch
                                                            Participant

                                                              The first infusion of Keytruda was Friday afternoon (Nov 25). All went well with (so far) minimal side effects (mild diarrhea). My husband is still in the hospital and is being closely monitored, though.

                                                              • November 28, 2016 at 2:16 pm
                                                              SMacBosch
                                                              Participant

                                                                The first infusion of Keytruda was Friday afternoon (Nov 25). All went well with (so far) minimal side effects (mild diarrhea). My husband is still in the hospital and is being closely monitored, though.

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