The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Adjuvant ipi for resected high risk trial help!

Forums General Melanoma Community Adjuvant ipi for resected high risk trial help!

  • Post
    Junk1962
    Participant
      My husband decided on this clinical trial at DFCI. After reading so many posts I can’t believe no one else is in this trial?? Am I just “searching”
      The wrong way? I’ve put in many ways to search for other participants-no luck! He is starting the trial on Tuesday and got the 10mg ipi arm. Since he is currently NED and we have only had one large (15mm) tumor in his leg removed in June-we would love to hear from other stage III -stage IV patients who went right to ipi after initial diagnosis (and resection) before any other signs of spreading. So many posts here show great success with ipi shrinking tumors! But, thoughts on ipi when no tumors or mets are present? Need a crystal ball!
    Viewing 8 reply threads
    • Replies
        HopefulOne
        Participant

          Hi there – my husband is on ipi after having a tumor resected that was intertwined around his spinal cord. He isn't part of a trial but on the FDA approved regiment. I asked the same question – how do we know ipi is working if we can't see it shrinking something? Our doctor told us the hope/test would be if everything stays all-clear. His last infusion is tomorrow (Tuesday, 9/10) and then he needs a PET scan within a week or two – she said as a baseline then another PET – I forget how long she said – within a few months. Hoping and praying that ipi works its magic. Good luck to you and your husband.

          HopefulOne
          Participant

            Hi there – my husband is on ipi after having a tumor resected that was intertwined around his spinal cord. He isn't part of a trial but on the FDA approved regiment. I asked the same question – how do we know ipi is working if we can't see it shrinking something? Our doctor told us the hope/test would be if everything stays all-clear. His last infusion is tomorrow (Tuesday, 9/10) and then he needs a PET scan within a week or two – she said as a baseline then another PET – I forget how long she said – within a few months. Hoping and praying that ipi works its magic. Good luck to you and your husband.

            HopefulOne
            Participant

              Hi there – my husband is on ipi after having a tumor resected that was intertwined around his spinal cord. He isn't part of a trial but on the FDA approved regiment. I asked the same question – how do we know ipi is working if we can't see it shrinking something? Our doctor told us the hope/test would be if everything stays all-clear. His last infusion is tomorrow (Tuesday, 9/10) and then he needs a PET scan within a week or two – she said as a baseline then another PET – I forget how long she said – within a few months. Hoping and praying that ipi works its magic. Good luck to you and your husband.

                kyminga
                Participant

                  Hi.  I was just recently(last week) offered a spot in this trial.  I had done my homework and knew what to expect with Interferon, but I wasn't expecting the Ipi option.  The 10mg side effects scared me.  I haven't yet made a decision on whether to do the trial or not.  I am currently stage IIIb, resected scalp melanoma 1mm, 1 node micromet.  I'm really not sure what direction to go.  How has your husband's experience been with the Ipi 10mg?  Thank you so much.

                  HopefulOne
                  Participant

                    Hi – I know your 10mg question wasn't directed to me since my husband is getting the 3mg … but I believe I have seen study results that showed better results with the higher dosage. Good luck with your decision.

                    HopefulOne
                    Participant

                      Hi – I know your 10mg question wasn't directed to me since my husband is getting the 3mg … but I believe I have seen study results that showed better results with the higher dosage. Good luck with your decision.

                      HopefulOne
                      Participant

                        Hi – I know your 10mg question wasn't directed to me since my husband is getting the 3mg … but I believe I have seen study results that showed better results with the higher dosage. Good luck with your decision.

                        Junk1962
                        Participant

                          We struggled with the decision too and at one point said we wouldn't do the trial if we got the 10mg ipi option.  But, after reading through a lot more data and outcomes – my husband decided it is not worth the risk NOT to do anything.  He wasn't impressed with the interferon outcomes.  Ipi seems to be working on tumors – so hopefully, if anything is lurking in his system now the ipi will kill it.  We are prepared for side effects and would rather see a long life with no melanoma!  He starts tomorrow.  Will keep you posted!

                          Junk1962
                          Participant

                            We struggled with the decision too and at one point said we wouldn't do the trial if we got the 10mg ipi option.  But, after reading through a lot more data and outcomes – my husband decided it is not worth the risk NOT to do anything.  He wasn't impressed with the interferon outcomes.  Ipi seems to be working on tumors – so hopefully, if anything is lurking in his system now the ipi will kill it.  We are prepared for side effects and would rather see a long life with no melanoma!  He starts tomorrow.  Will keep you posted!

                            Junk1962
                            Participant

                              We struggled with the decision too and at one point said we wouldn't do the trial if we got the 10mg ipi option.  But, after reading through a lot more data and outcomes – my husband decided it is not worth the risk NOT to do anything.  He wasn't impressed with the interferon outcomes.  Ipi seems to be working on tumors – so hopefully, if anything is lurking in his system now the ipi will kill it.  We are prepared for side effects and would rather see a long life with no melanoma!  He starts tomorrow.  Will keep you posted!

                              kyminga
                              Participant

                                Hi.  I was just recently(last week) offered a spot in this trial.  I had done my homework and knew what to expect with Interferon, but I wasn't expecting the Ipi option.  The 10mg side effects scared me.  I haven't yet made a decision on whether to do the trial or not.  I am currently stage IIIb, resected scalp melanoma 1mm, 1 node micromet.  I'm really not sure what direction to go.  How has your husband's experience been with the Ipi 10mg?  Thank you so much.

                                kyminga
                                Participant

                                  Hi.  I was just recently(last week) offered a spot in this trial.  I had done my homework and knew what to expect with Interferon, but I wasn't expecting the Ipi option.  The 10mg side effects scared me.  I haven't yet made a decision on whether to do the trial or not.  I am currently stage IIIb, resected scalp melanoma 1mm, 1 node micromet.  I'm really not sure what direction to go.  How has your husband's experience been with the Ipi 10mg?  Thank you so much.

                                  Junk1962
                                  Participant

                                    Thanks for your response!  How has he been dealing with the ipi infusions?  Is he on the 3mg or 10mg?   What have his side effects been?  Being informed is really helping me cope!  Thanks, again!  Good luck to your husband (and you!)>>>

                                    Junk1962
                                    Participant

                                      Thanks for your response!  How has he been dealing with the ipi infusions?  Is he on the 3mg or 10mg?   What have his side effects been?  Being informed is really helping me cope!  Thanks, again!  Good luck to your husband (and you!)>>>

                                      Junk1962
                                      Participant

                                        Thanks for your response!  How has he been dealing with the ipi infusions?  Is he on the 3mg or 10mg?   What have his side effects been?  Being informed is really helping me cope!  Thanks, again!  Good luck to your husband (and you!)>>>

                                        karebear1905
                                        Participant
                                          Hi! I am so sorry to hear about your experiences. It down right sucks. I had my primary on my upper thigh with that I had Wbl and lymphorectory. 3 positive nodes which put me in a class of 3b. I am currently on the trial for interferon, 3 mg ippi and 10 mg ippi. I am receiving the amount of 10 mg which as you know is 3 x the amount approved by the FDA for non rescectable melanoma.

                                          My experience has been in the infusion phase where I was given 10 mg of ippi every 3 weeks for 4 treatments was somewhat difficult. Initially for the first 2 infusions I handled it pretty well but the 3rd and 4th ones took a toll. I lost 30 pounds and could not get out of bed for about 2 weeks. Itching and nausea was a problem along with elevated liver enzymes. After the infusion I moved on to mainence phase where infusions were every 3 months along with scans. The first infusioni was fine but the second was not able to be done because of my thyroid was enlarged. I was put on prednisone to put it down. I had my third and my fourth and final one is coming up the 26th. All my scans had been good and I am happy that I have participated in the trial. Personally, I think it’s better than interferon. I have not had a reoccurence other than an abnormal mole. I feel blessed. If you need more info I did write a short blog about my experience called melanoma diaries.blogspot.com. Best of luck in the decision you make and i will keep you in my prayers

                                          karebear1905
                                          Participant
                                            Hi! I am so sorry to hear about your experiences. It down right sucks. I had my primary on my upper thigh with that I had Wbl and lymphorectory. 3 positive nodes which put me in a class of 3b. I am currently on the trial for interferon, 3 mg ippi and 10 mg ippi. I am receiving the amount of 10 mg which as you know is 3 x the amount approved by the FDA for non rescectable melanoma.

                                            My experience has been in the infusion phase where I was given 10 mg of ippi every 3 weeks for 4 treatments was somewhat difficult. Initially for the first 2 infusions I handled it pretty well but the 3rd and 4th ones took a toll. I lost 30 pounds and could not get out of bed for about 2 weeks. Itching and nausea was a problem along with elevated liver enzymes. After the infusion I moved on to mainence phase where infusions were every 3 months along with scans. The first infusioni was fine but the second was not able to be done because of my thyroid was enlarged. I was put on prednisone to put it down. I had my third and my fourth and final one is coming up the 26th. All my scans had been good and I am happy that I have participated in the trial. Personally, I think it’s better than interferon. I have not had a reoccurence other than an abnormal mole. I feel blessed. If you need more info I did write a short blog about my experience called melanoma diaries.blogspot.com. Best of luck in the decision you make and i will keep you in my prayers

                                            karebear1905
                                            Participant
                                              Hi! I am so sorry to hear about your experiences. It down right sucks. I had my primary on my upper thigh with that I had Wbl and lymphorectory. 3 positive nodes which put me in a class of 3b. I am currently on the trial for interferon, 3 mg ippi and 10 mg ippi. I am receiving the amount of 10 mg which as you know is 3 x the amount approved by the FDA for non rescectable melanoma.

                                              My experience has been in the infusion phase where I was given 10 mg of ippi every 3 weeks for 4 treatments was somewhat difficult. Initially for the first 2 infusions I handled it pretty well but the 3rd and 4th ones took a toll. I lost 30 pounds and could not get out of bed for about 2 weeks. Itching and nausea was a problem along with elevated liver enzymes. After the infusion I moved on to mainence phase where infusions were every 3 months along with scans. The first infusioni was fine but the second was not able to be done because of my thyroid was enlarged. I was put on prednisone to put it down. I had my third and my fourth and final one is coming up the 26th. All my scans had been good and I am happy that I have participated in the trial. Personally, I think it’s better than interferon. I have not had a reoccurence other than an abnormal mole. I feel blessed. If you need more info I did write a short blog about my experience called melanoma diaries.blogspot.com. Best of luck in the decision you make and i will keep you in my prayers

                                              HopefulOne
                                              Participant

                                                Hi there – my husband finished his fourth infusion (3mg) this week. Happy to have gotten all the doses in – his second treatment was only delayed by a week. His side effects have been relatively ok … he had intermittent issues so it's hard to say if it were the ipi or something else (i.e., he had some headaches, blurred vision, itchies, bowel issues – which could have been the radiation). Overall he feels tired which isn't like him … doctor thinks it was everything he's been through this past year and not necessarily the ipi. She did change the course of action for now. Instead of getting a baseline scan she said we're going to wait 8 weeks. She said she wouldn't be surprised to see some areas on the PET to light up. Her thinking is if there are microscopic melanoma cells throughout his body there would be activity at those areas because the ipi revved up his immune system and is doing its job. However, she said even if something lit up at this point – they'd still wait to do anything because it takes awhile for ipi to work its magic. Basically she's sparing us some anxiety and we'll wait and see what happens in 8 weeks. Hoping and praying for good news. Good luck to everyone here with your journeys.

                                                HopefulOne
                                                Participant

                                                  Hi there – my husband finished his fourth infusion (3mg) this week. Happy to have gotten all the doses in – his second treatment was only delayed by a week. His side effects have been relatively ok … he had intermittent issues so it's hard to say if it were the ipi or something else (i.e., he had some headaches, blurred vision, itchies, bowel issues – which could have been the radiation). Overall he feels tired which isn't like him … doctor thinks it was everything he's been through this past year and not necessarily the ipi. She did change the course of action for now. Instead of getting a baseline scan she said we're going to wait 8 weeks. She said she wouldn't be surprised to see some areas on the PET to light up. Her thinking is if there are microscopic melanoma cells throughout his body there would be activity at those areas because the ipi revved up his immune system and is doing its job. However, she said even if something lit up at this point – they'd still wait to do anything because it takes awhile for ipi to work its magic. Basically she's sparing us some anxiety and we'll wait and see what happens in 8 weeks. Hoping and praying for good news. Good luck to everyone here with your journeys.

                                                  HopefulOne
                                                  Participant

                                                    Hi there – my husband finished his fourth infusion (3mg) this week. Happy to have gotten all the doses in – his second treatment was only delayed by a week. His side effects have been relatively ok … he had intermittent issues so it's hard to say if it were the ipi or something else (i.e., he had some headaches, blurred vision, itchies, bowel issues – which could have been the radiation). Overall he feels tired which isn't like him … doctor thinks it was everything he's been through this past year and not necessarily the ipi. She did change the course of action for now. Instead of getting a baseline scan she said we're going to wait 8 weeks. She said she wouldn't be surprised to see some areas on the PET to light up. Her thinking is if there are microscopic melanoma cells throughout his body there would be activity at those areas because the ipi revved up his immune system and is doing its job. However, she said even if something lit up at this point – they'd still wait to do anything because it takes awhile for ipi to work its magic. Basically she's sparing us some anxiety and we'll wait and see what happens in 8 weeks. Hoping and praying for good news. Good luck to everyone here with your journeys.

                                                  katie1
                                                  Participant

                                                    My husband is in  the same trial (3mg/kg Ipi arm).  He has completed the induction phase (infusions every 3 weeks). Maintenance doses will begin in a couple of months.  For now we are awaiting the results of his scans.  It is a time of great anxiety.  If he remains NED will we have no way of knowing if it was the medication….but that's the point of a large study.  Overall, they will be able to determine Ipilimumab's role in preventing recurrence.  We are hopeful…..but every scan brings anxiety.

                                                    The thing we have learned so far is to report ALL potential side effects so they can be evaluated and treated right away..Make sure you become educated on even the rare side effects so that you can recognize potential problems early.

                                                    My husband has so far been able to continue working but his schedule is flexible which means the hospital visits haven't caused too much trouble for him.  So far his side effects have been fatigue, dermatological (puritis, rash) requiring topical hydrocortisone and antihistamines, and ocular (requiring  brief courses of corticosteroid drops). He is currently being evaluated for an enlarged pituitary (having reported vague symptoms warranting further investigation).  His immune system has certainly responded.

                                                    I hope all goes well today,

                                                    Katie

                                                    katie1
                                                    Participant

                                                      My husband is in  the same trial (3mg/kg Ipi arm).  He has completed the induction phase (infusions every 3 weeks). Maintenance doses will begin in a couple of months.  For now we are awaiting the results of his scans.  It is a time of great anxiety.  If he remains NED will we have no way of knowing if it was the medication….but that's the point of a large study.  Overall, they will be able to determine Ipilimumab's role in preventing recurrence.  We are hopeful…..but every scan brings anxiety.

                                                      The thing we have learned so far is to report ALL potential side effects so they can be evaluated and treated right away..Make sure you become educated on even the rare side effects so that you can recognize potential problems early.

                                                      My husband has so far been able to continue working but his schedule is flexible which means the hospital visits haven't caused too much trouble for him.  So far his side effects have been fatigue, dermatological (puritis, rash) requiring topical hydrocortisone and antihistamines, and ocular (requiring  brief courses of corticosteroid drops). He is currently being evaluated for an enlarged pituitary (having reported vague symptoms warranting further investigation).  His immune system has certainly responded.

                                                      I hope all goes well today,

                                                      Katie

                                                      katie1
                                                      Participant

                                                        My husband is in  the same trial (3mg/kg Ipi arm).  He has completed the induction phase (infusions every 3 weeks). Maintenance doses will begin in a couple of months.  For now we are awaiting the results of his scans.  It is a time of great anxiety.  If he remains NED will we have no way of knowing if it was the medication….but that's the point of a large study.  Overall, they will be able to determine Ipilimumab's role in preventing recurrence.  We are hopeful…..but every scan brings anxiety.

                                                        The thing we have learned so far is to report ALL potential side effects so they can be evaluated and treated right away..Make sure you become educated on even the rare side effects so that you can recognize potential problems early.

                                                        My husband has so far been able to continue working but his schedule is flexible which means the hospital visits haven't caused too much trouble for him.  So far his side effects have been fatigue, dermatological (puritis, rash) requiring topical hydrocortisone and antihistamines, and ocular (requiring  brief courses of corticosteroid drops). He is currently being evaluated for an enlarged pituitary (having reported vague symptoms warranting further investigation).  His immune system has certainly responded.

                                                        I hope all goes well today,

                                                        Katie

                                                        TSchulz
                                                        Participant

                                                          Thank you for taking part in this trial.  I went from NED after 8 years to Stage IV.  I've often thought that had I gone through Stage III and was NED, i'd like to participate in a trial like this.  I think it will take some time to gain good data but hopefully it turns out to fall on the very positive side of things for future stage III patients. Good luck with the ipi and the trial.  And remember NED is NED.  Troy

                                                          TSchulz
                                                          Participant

                                                            Thank you for taking part in this trial.  I went from NED after 8 years to Stage IV.  I've often thought that had I gone through Stage III and was NED, i'd like to participate in a trial like this.  I think it will take some time to gain good data but hopefully it turns out to fall on the very positive side of things for future stage III patients. Good luck with the ipi and the trial.  And remember NED is NED.  Troy

                                                            TSchulz
                                                            Participant

                                                              Thank you for taking part in this trial.  I went from NED after 8 years to Stage IV.  I've often thought that had I gone through Stage III and was NED, i'd like to participate in a trial like this.  I think it will take some time to gain good data but hopefully it turns out to fall on the very positive side of things for future stage III patients. Good luck with the ipi and the trial.  And remember NED is NED.  Troy

                                                          Viewing 8 reply threads
                                                          • You must be logged in to reply to this topic.
                                                          About the MRF Patient Forum

                                                          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                          The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                          Popular Topics