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Adjuvant Ipi: 30 months NED

Forums Ocular Melanoma Community Adjuvant Ipi: 30 months NED

  • Post
    katie1
    Participant

      Given the recent FDA approval of adjuvant Ipi, I wanted to let people know my husband has been NED now for 30 months since starting the IPi vs Interferon trial. He was in the 3mg/kg arm of Ipi.  He only received the 4 induction doses due to side effects. He is stage IIIC (T4bn2cM0- with deep amelanotic nodular lesion).  He had rash and itching beginning after the first dose (and then ongoing which was treated with topical steroid and benadrly), ocular (after 3rd dose-resolved with steroid drops). and He also started with minor diarrhea after 3rd dose which coninued on and off managed by Immodium.  Following the 4th dose he developed hypophysitis.  He was treated with high dose steroids and all his hormones returned to normal.  However, after his taper from steroids he went into adrenal crisis and has been steroid dependant ever since (due to adrenal insufficiency). It took a little over a year for the dosage required to stabilize (required higher dosage of hydrocortisone over time).  He is currently doing really well and is very thankful for the trial option.

      I wish all of you starting on Ipi the best.  Report all side effects even if they appear minor to your oncologist right away.  Make sure you are being treated by a melanoma specialist with experience treating these side effects.

      Kate

    Viewing 14 reply threads
    • Replies
        Stlmag
        Participant

          My husband began Yervoy 12/9/15. He declined futher treatments due to the side effects (itching & rash).

          Diagnosed 10/13/15 with Stage 3C amelanotic melanoma.

          Stlmag
          Participant

            My husband began Yervoy 12/9/15. He declined futher treatments due to the side effects (itching & rash).

            Diagnosed 10/13/15 with Stage 3C amelanotic melanoma.

            Stlmag
            Participant

              My husband began Yervoy 12/9/15. He declined futher treatments due to the side effects (itching & rash).

              Diagnosed 10/13/15 with Stage 3C amelanotic melanoma.

              mkirkland
              Participant

                Thanks for sharing!!! I go for round 2 Monday. Round 1 was pretty good but I know that can change at anytime!! 

                Misty

                mkirkland
                Participant

                  Thanks for sharing!!! I go for round 2 Monday. Round 1 was pretty good but I know that can change at anytime!! 

                  Misty

                  mkirkland
                  Participant

                    Thanks for sharing!!! I go for round 2 Monday. Round 1 was pretty good but I know that can change at anytime!! 

                    Misty

                      jmm1052
                      Participant

                        That is awesome to hear- my husband starts on March 10 and he's nervous so it's great to hear from someone who just began the ipi. 

                        jmm1052
                        Participant

                          That is awesome to hear- my husband starts on March 10 and he's nervous so it's great to hear from someone who just began the ipi. 

                          jmm1052
                          Participant

                            That is awesome to hear- my husband starts on March 10 and he's nervous so it's great to hear from someone who just began the ipi. 

                          Eileensulliv
                          Participant

                            Wonderful news! Thank you for sharing, Kate! 

                            Eileensulliv
                            Participant

                              Wonderful news! Thank you for sharing, Kate! 

                              Eileensulliv
                              Participant

                                Wonderful news! Thank you for sharing, Kate! 

                                gregor913
                                Participant

                                  Thanks for the post. Im currently taking ippi but I might have to have the second dose postponed by one week which my doctor said is not a big deal.( 10mg) I caught a virus from my daughter and tested positive for adeno virus that gave me fever for 7 days, sore throat, and terrible congestion. My next scheduled dose is the 18th. Do I think I can do it yes. But Im going to go on caution and wait one more week to get fully better since I can start to breathe out of my nose finally. Just a reminder to all people on ippi. You can get sick very easily. I recommend wearing a mask in public because this cold really ripped through me hard.

                                  I was thinking about the dosages compared to 3mg and 10mg. If i did the 3mg dose my total medicine would be 1076mg. Since Im doing the 10mg dose it will be alot higher. My first dose alone was 910mg. That is almost the equivillant to all 3mg doses.

                                  Cant wait to jump back into this yervoy medicine

                                  Greg

                                  gregor913
                                  Participant

                                    Thanks for the post. Im currently taking ippi but I might have to have the second dose postponed by one week which my doctor said is not a big deal.( 10mg) I caught a virus from my daughter and tested positive for adeno virus that gave me fever for 7 days, sore throat, and terrible congestion. My next scheduled dose is the 18th. Do I think I can do it yes. But Im going to go on caution and wait one more week to get fully better since I can start to breathe out of my nose finally. Just a reminder to all people on ippi. You can get sick very easily. I recommend wearing a mask in public because this cold really ripped through me hard.

                                    I was thinking about the dosages compared to 3mg and 10mg. If i did the 3mg dose my total medicine would be 1076mg. Since Im doing the 10mg dose it will be alot higher. My first dose alone was 910mg. That is almost the equivillant to all 3mg doses.

                                    Cant wait to jump back into this yervoy medicine

                                    Greg

                                    gregor913
                                    Participant

                                      Thanks for the post. Im currently taking ippi but I might have to have the second dose postponed by one week which my doctor said is not a big deal.( 10mg) I caught a virus from my daughter and tested positive for adeno virus that gave me fever for 7 days, sore throat, and terrible congestion. My next scheduled dose is the 18th. Do I think I can do it yes. But Im going to go on caution and wait one more week to get fully better since I can start to breathe out of my nose finally. Just a reminder to all people on ippi. You can get sick very easily. I recommend wearing a mask in public because this cold really ripped through me hard.

                                      I was thinking about the dosages compared to 3mg and 10mg. If i did the 3mg dose my total medicine would be 1076mg. Since Im doing the 10mg dose it will be alot higher. My first dose alone was 910mg. That is almost the equivillant to all 3mg doses.

                                      Cant wait to jump back into this yervoy medicine

                                      Greg

                                        Marianne quinn
                                        Participant

                                          I would encourage anyone not to stop ipi due to itching.it can be managed and it is a universal side effect. My husband is 2 years NED. The itching goes away after stopping ipi. The itching is a sign that your immune system is getting stimulated. Hang in there!

                                          Marianne quinn
                                          Participant

                                            I would encourage anyone not to stop ipi due to itching.it can be managed and it is a universal side effect. My husband is 2 years NED. The itching goes away after stopping ipi. The itching is a sign that your immune system is getting stimulated. Hang in there!

                                            Marianne quinn
                                            Participant

                                              I would encourage anyone not to stop ipi due to itching.it can be managed and it is a universal side effect. My husband is 2 years NED. The itching goes away after stopping ipi. The itching is a sign that your immune system is getting stimulated. Hang in there!

                                              jmm1052
                                              Participant

                                                Great advice! My husband starts his on Mar 10- 10mg. We have heard that he definitely needs to be careful around crowds. I don't quite understand it because I thought the immune system gets boosted. 

                                                I hope you are feeling much better now!

                                                 

                                                gregor913
                                                Participant
                                                  Well I said be careful of germs. I got sick with a viral cold and my onc said it was like the perfect storm yervoy and a virus. It was like x10. But since the cold is done my second infusion went well. I’ve really had no side effects except some days being a little tired. Also probiotics and goat milk soap for the skin. I think that really helped me out so far too. I got it from amazon. Good luck greg
                                                  gregor913
                                                  Participant
                                                    Well I said be careful of germs. I got sick with a viral cold and my onc said it was like the perfect storm yervoy and a virus. It was like x10. But since the cold is done my second infusion went well. I’ve really had no side effects except some days being a little tired. Also probiotics and goat milk soap for the skin. I think that really helped me out so far too. I got it from amazon. Good luck greg
                                                    gregor913
                                                    Participant
                                                      Well I said be careful of germs. I got sick with a viral cold and my onc said it was like the perfect storm yervoy and a virus. It was like x10. But since the cold is done my second infusion went well. I’ve really had no side effects except some days being a little tired. Also probiotics and goat milk soap for the skin. I think that really helped me out so far too. I got it from amazon. Good luck greg
                                                      jmm1052
                                                      Participant

                                                        Great advice! My husband starts his on Mar 10- 10mg. We have heard that he definitely needs to be careful around crowds. I don't quite understand it because I thought the immune system gets boosted. 

                                                        I hope you are feeling much better now!

                                                         

                                                        jmm1052
                                                        Participant

                                                          Great advice! My husband starts his on Mar 10- 10mg. We have heard that he definitely needs to be careful around crowds. I don't quite understand it because I thought the immune system gets boosted. 

                                                          I hope you are feeling much better now!

                                                           

                                                        MoiraM
                                                        Participant

                                                          I am new to the forum. I am very interested in your husband's experience. I have also been treated with 3mg/kg Ipi – 4 doses at 3 week intervals. I finished the last treatment 6 months ago. My tumours have shrunk – I guess I am NED but my doctor is too cautious to say it. I also had hypophystis but my anterior pituitary has shown no sign of recovery, so I am dependent on thyroxine and a cortisol replacement – currently prednisolone.

                                                          I was most interested in when you say it took over a year to stablisise your husband's hydrocortisone dose. In a way it helps, because I am really struggling with this. I felt very happy and healthy on 10 mg prednisolone but my endrocrine specialist wants me on between 5 and 7.5 mg, preferrably 5 mg.

                                                          One of the melanoma specialists I saw said the damage to my anterior pituitary is permanent. My endocrine specialist says there is a chance of recovery if I get my steroid dose down low enough. Unfortunately 'low enough' appears to mean I am barely able to function.

                                                          30 months. Wow! My melanomma specialist says if I make it to 3 years there is a good chance I will make it to 10. I have my fingers crossed for your husband.

                                                          MoiraM
                                                          Participant

                                                            I am new to the forum. I am very interested in your husband's experience. I have also been treated with 3mg/kg Ipi – 4 doses at 3 week intervals. I finished the last treatment 6 months ago. My tumours have shrunk – I guess I am NED but my doctor is too cautious to say it. I also had hypophystis but my anterior pituitary has shown no sign of recovery, so I am dependent on thyroxine and a cortisol replacement – currently prednisolone.

                                                            I was most interested in when you say it took over a year to stablisise your husband's hydrocortisone dose. In a way it helps, because I am really struggling with this. I felt very happy and healthy on 10 mg prednisolone but my endrocrine specialist wants me on between 5 and 7.5 mg, preferrably 5 mg.

                                                            One of the melanoma specialists I saw said the damage to my anterior pituitary is permanent. My endocrine specialist says there is a chance of recovery if I get my steroid dose down low enough. Unfortunately 'low enough' appears to mean I am barely able to function.

                                                            30 months. Wow! My melanomma specialist says if I make it to 3 years there is a good chance I will make it to 10. I have my fingers crossed for your husband.

                                                            MoiraM
                                                            Participant

                                                              I am new to the forum. I am very interested in your husband's experience. I have also been treated with 3mg/kg Ipi – 4 doses at 3 week intervals. I finished the last treatment 6 months ago. My tumours have shrunk – I guess I am NED but my doctor is too cautious to say it. I also had hypophystis but my anterior pituitary has shown no sign of recovery, so I am dependent on thyroxine and a cortisol replacement – currently prednisolone.

                                                              I was most interested in when you say it took over a year to stablisise your husband's hydrocortisone dose. In a way it helps, because I am really struggling with this. I felt very happy and healthy on 10 mg prednisolone but my endrocrine specialist wants me on between 5 and 7.5 mg, preferrably 5 mg.

                                                              One of the melanoma specialists I saw said the damage to my anterior pituitary is permanent. My endocrine specialist says there is a chance of recovery if I get my steroid dose down low enough. Unfortunately 'low enough' appears to mean I am barely able to function.

                                                              30 months. Wow! My melanomma specialist says if I make it to 3 years there is a good chance I will make it to 10. I have my fingers crossed for your husband.

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