› Forums › General Melanoma Community › Adjuvant ipi for resected high risk trial help!
- This topic has 27 replies, 6 voices, and was last updated 11 years ago by
TSchulz.
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- September 9, 2013 at 2:22 am
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!
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- September 9, 2013 at 2:07 pm
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.
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- September 9, 2013 at 2:07 pm
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.
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- September 9, 2013 at 2:07 pm
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.
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- September 9, 2013 at 3:35 pm
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.
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- September 9, 2013 at 4:04 pm
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.
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- September 9, 2013 at 4:04 pm
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.
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- September 9, 2013 at 4:04 pm
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.
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- September 9, 2013 at 5:16 pm
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!
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- September 9, 2013 at 5:16 pm
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!
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- September 9, 2013 at 5:16 pm
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!
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- September 9, 2013 at 3:35 pm
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.
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- September 9, 2013 at 3:35 pm
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.
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- September 10, 2013 at 12:05 am
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
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- September 10, 2013 at 12:05 am
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
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- September 10, 2013 at 12:05 am
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
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- September 12, 2013 at 1:05 pm
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.
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- September 12, 2013 at 1:05 pm
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.
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- September 12, 2013 at 1:05 pm
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.
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- September 10, 2013 at 11:40 am
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
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- September 10, 2013 at 11:40 am
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
-
- September 10, 2013 at 11:40 am
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
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- September 14, 2013 at 8:41 pm
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
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- September 14, 2013 at 8:41 pm
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
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- September 14, 2013 at 8:41 pm
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
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