› Forums › General Melanoma Community › Ipi after IL2
- This topic has 9 replies, 3 voices, and was last updated 10 years, 11 months ago by
Tim–MRF.
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- June 10, 2013 at 5:51 pm
I finished my last course of IL2 5 weeks ago and now must start Ipi due to progression. I have been looking for information regarding side effects of having the 2 therapies relatively close together but have pretty much come up empty. I know you have to wait at least 4 weeks after IL2 to start Ipi, and I'm past that point at 5 weeks.
Does starting Ipi close to finishing IL2 increase the likelyhood or severity of Ipi side effects?
Has anyone else had the therapies relatively close together who could share their experience with severity of side effects?
I finished my last course of IL2 5 weeks ago and now must start Ipi due to progression. I have been looking for information regarding side effects of having the 2 therapies relatively close together but have pretty much come up empty. I know you have to wait at least 4 weeks after IL2 to start Ipi, and I'm past that point at 5 weeks.
Does starting Ipi close to finishing IL2 increase the likelyhood or severity of Ipi side effects?
Has anyone else had the therapies relatively close together who could share their experience with severity of side effects?
Also, anyone who has had Ipi after IL2- were the side effects similar, or did you get completely different side effects with each therapy?
I'm relatively concerned (as are my doctors) that I will have an increased chance of the severe colitis/colon perforation because I had colitis with the IL2. I'm also wondering if having the 2 so close together puts me at any higher risk for the more severe/immune mediated side effects if my immune system is already "up in arms" so to speak (I did have many tumors shrink or dissapear with the IL2).
Any insight or information would be very helpful!
Thanks
Eva
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- June 10, 2013 at 8:12 pm
Hi Eva,
I was sorry to read your other post about the new brain mets, I know first-hand with my wife's experience (2 tiny mets on meninges after 4 rounds of Ipi) how it can delay access to clinical trials. I'm glad to know you can go ahead and start with Ipi while the brain is treated with radiation.
It is hard to predict what kind of side effects you will experience with Ipi. I'm sure they have covered what side effects or possible. I think for most people, Ipi is more easily tolerated than IL-2, but I have seen people on this board who have said otherwise. Depends on whether colitis or anything serious like that shows up, I guess.
Like you, Heather started Ipi right after (5 weeks) IL-2. She had very few, if any, side effects from Ipi. This was a very welcome change after the harshness of IL-2. She only had some tiredness after infusion days and a slight rash (more like skin-colored goosebumps in certain areas). No pain or anything like that. She was able to hit the treadmill 5 days a week, run errands, live life as she normally does, etc. However, we know another patient at Emory who had IL-2 and then Ipi at the exact same time as her, and his side effects included a pretty severe rash and lots of joint pain. I think it's one of those treatments where they really can't predict side effects and can be completely different for each patient.
Heather's scans in April (4 weeks after finishing Ipi) showed her to be mostly stable…roughly 10% growth or shrinkage in most spots, with one new larger mass that they are unsure whether it is actually melanoma or an ovarian cyst. She has a 2jd round of scans scheduled for tomorrow, so we'll see how things look. She had SRS to the meninges spots and 2 rounds of Carbo Taxol in the meantime to keep things stable/shrinking, so we're hoping the MRI is clear so we can enroll in an anti PD-1 trial later this month.
Please let me know if I can answer any other questions. Not a doctor or expert by any means, but we have gone through the same treatment sequence to some extent.
Best wishes,
Steve
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- June 10, 2013 at 8:12 pm
Hi Eva,
I was sorry to read your other post about the new brain mets, I know first-hand with my wife's experience (2 tiny mets on meninges after 4 rounds of Ipi) how it can delay access to clinical trials. I'm glad to know you can go ahead and start with Ipi while the brain is treated with radiation.
It is hard to predict what kind of side effects you will experience with Ipi. I'm sure they have covered what side effects or possible. I think for most people, Ipi is more easily tolerated than IL-2, but I have seen people on this board who have said otherwise. Depends on whether colitis or anything serious like that shows up, I guess.
Like you, Heather started Ipi right after (5 weeks) IL-2. She had very few, if any, side effects from Ipi. This was a very welcome change after the harshness of IL-2. She only had some tiredness after infusion days and a slight rash (more like skin-colored goosebumps in certain areas). No pain or anything like that. She was able to hit the treadmill 5 days a week, run errands, live life as she normally does, etc. However, we know another patient at Emory who had IL-2 and then Ipi at the exact same time as her, and his side effects included a pretty severe rash and lots of joint pain. I think it's one of those treatments where they really can't predict side effects and can be completely different for each patient.
Heather's scans in April (4 weeks after finishing Ipi) showed her to be mostly stable…roughly 10% growth or shrinkage in most spots, with one new larger mass that they are unsure whether it is actually melanoma or an ovarian cyst. She has a 2jd round of scans scheduled for tomorrow, so we'll see how things look. She had SRS to the meninges spots and 2 rounds of Carbo Taxol in the meantime to keep things stable/shrinking, so we're hoping the MRI is clear so we can enroll in an anti PD-1 trial later this month.
Please let me know if I can answer any other questions. Not a doctor or expert by any means, but we have gone through the same treatment sequence to some extent.
Best wishes,
Steve
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- June 10, 2013 at 8:12 pm
Hi Eva,
I was sorry to read your other post about the new brain mets, I know first-hand with my wife's experience (2 tiny mets on meninges after 4 rounds of Ipi) how it can delay access to clinical trials. I'm glad to know you can go ahead and start with Ipi while the brain is treated with radiation.
It is hard to predict what kind of side effects you will experience with Ipi. I'm sure they have covered what side effects or possible. I think for most people, Ipi is more easily tolerated than IL-2, but I have seen people on this board who have said otherwise. Depends on whether colitis or anything serious like that shows up, I guess.
Like you, Heather started Ipi right after (5 weeks) IL-2. She had very few, if any, side effects from Ipi. This was a very welcome change after the harshness of IL-2. She only had some tiredness after infusion days and a slight rash (more like skin-colored goosebumps in certain areas). No pain or anything like that. She was able to hit the treadmill 5 days a week, run errands, live life as she normally does, etc. However, we know another patient at Emory who had IL-2 and then Ipi at the exact same time as her, and his side effects included a pretty severe rash and lots of joint pain. I think it's one of those treatments where they really can't predict side effects and can be completely different for each patient.
Heather's scans in April (4 weeks after finishing Ipi) showed her to be mostly stable…roughly 10% growth or shrinkage in most spots, with one new larger mass that they are unsure whether it is actually melanoma or an ovarian cyst. She has a 2jd round of scans scheduled for tomorrow, so we'll see how things look. She had SRS to the meninges spots and 2 rounds of Carbo Taxol in the meantime to keep things stable/shrinking, so we're hoping the MRI is clear so we can enroll in an anti PD-1 trial later this month.
Please let me know if I can answer any other questions. Not a doctor or expert by any means, but we have gone through the same treatment sequence to some extent.
Best wishes,
Steve
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- June 10, 2013 at 10:28 pm
Howard Kaufman from Rush published data on this very topic at the ASCO meeting last weekend. The conclusion is that prior IL2 had no impact on the side effects of ipi. You can find the study here:
http://meetinglibrary.asco.org/content/111125-132
Hope the ipi helps.
Tim–MRF
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- June 10, 2013 at 10:28 pm
Howard Kaufman from Rush published data on this very topic at the ASCO meeting last weekend. The conclusion is that prior IL2 had no impact on the side effects of ipi. You can find the study here:
http://meetinglibrary.asco.org/content/111125-132
Hope the ipi helps.
Tim–MRF
-
- June 10, 2013 at 10:28 pm
Howard Kaufman from Rush published data on this very topic at the ASCO meeting last weekend. The conclusion is that prior IL2 had no impact on the side effects of ipi. You can find the study here:
http://meetinglibrary.asco.org/content/111125-132
Hope the ipi helps.
Tim–MRF
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- June 10, 2013 at 9:43 pm
Thank you for your post. I too was sorry to read (on the MRI report) about the brain mets, and even sorrier that there were too many for SRS/gamma knife which has a much better success rate compared to whole brain radiation (which is a palliative shot in the dark at best).
Even though the sample size is small (2 people) it was really helpful to read that your wife and your acquaintance both had reasonable, tolerable (and in your wife's case minimal) side effects on the Ipi even being so close to IL2. My first cycle of IL2 was only 1 week because my side effects were so severe they cancelled the second week and were not going to allow me to continue. I argued my way back in and subsequent weeks (I had 5 weeks total) went better though I was VERY carefully monitored. The side effects actually seemed to lessen some each week I went back, but I and my doctors have still been worried about possibly being more at risk for the more severe Ipi side effects. It helps to know that it's not a given that side effects will be worsened because of the IL2
My local oncologist has officially deemed me the most complicated and confusing melanoma case he has ever seen or read about. My pre-IL2 tumors continue to (palpably) shrink, and even some of the tumors that began popping up after the IL2 seem to be shrinking some. If it weren't for the brain mets we'd probably hold off on starting Ipi for another week or 2 and re-scan to see what was going on. It also begs the questions- when did the brain mets show up (it's been 6 months since my last MRI)? Are they truly new and progessing or could they have been there during the IL2 and like some of the other tumors be stable or regressing? While no one is really happy about brain radiation we're going the better safe than sorry route to try an stop them if they are new/progressing.
I'm crossing my fingers for you and your wife that your MRI is good and you can join the trial. Good luck and all the best to you both!
-Eva
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- June 10, 2013 at 9:43 pm
Thank you for your post. I too was sorry to read (on the MRI report) about the brain mets, and even sorrier that there were too many for SRS/gamma knife which has a much better success rate compared to whole brain radiation (which is a palliative shot in the dark at best).
Even though the sample size is small (2 people) it was really helpful to read that your wife and your acquaintance both had reasonable, tolerable (and in your wife's case minimal) side effects on the Ipi even being so close to IL2. My first cycle of IL2 was only 1 week because my side effects were so severe they cancelled the second week and were not going to allow me to continue. I argued my way back in and subsequent weeks (I had 5 weeks total) went better though I was VERY carefully monitored. The side effects actually seemed to lessen some each week I went back, but I and my doctors have still been worried about possibly being more at risk for the more severe Ipi side effects. It helps to know that it's not a given that side effects will be worsened because of the IL2
My local oncologist has officially deemed me the most complicated and confusing melanoma case he has ever seen or read about. My pre-IL2 tumors continue to (palpably) shrink, and even some of the tumors that began popping up after the IL2 seem to be shrinking some. If it weren't for the brain mets we'd probably hold off on starting Ipi for another week or 2 and re-scan to see what was going on. It also begs the questions- when did the brain mets show up (it's been 6 months since my last MRI)? Are they truly new and progessing or could they have been there during the IL2 and like some of the other tumors be stable or regressing? While no one is really happy about brain radiation we're going the better safe than sorry route to try an stop them if they are new/progressing.
I'm crossing my fingers for you and your wife that your MRI is good and you can join the trial. Good luck and all the best to you both!
-Eva
-
- June 10, 2013 at 9:43 pm
Thank you for your post. I too was sorry to read (on the MRI report) about the brain mets, and even sorrier that there were too many for SRS/gamma knife which has a much better success rate compared to whole brain radiation (which is a palliative shot in the dark at best).
Even though the sample size is small (2 people) it was really helpful to read that your wife and your acquaintance both had reasonable, tolerable (and in your wife's case minimal) side effects on the Ipi even being so close to IL2. My first cycle of IL2 was only 1 week because my side effects were so severe they cancelled the second week and were not going to allow me to continue. I argued my way back in and subsequent weeks (I had 5 weeks total) went better though I was VERY carefully monitored. The side effects actually seemed to lessen some each week I went back, but I and my doctors have still been worried about possibly being more at risk for the more severe Ipi side effects. It helps to know that it's not a given that side effects will be worsened because of the IL2
My local oncologist has officially deemed me the most complicated and confusing melanoma case he has ever seen or read about. My pre-IL2 tumors continue to (palpably) shrink, and even some of the tumors that began popping up after the IL2 seem to be shrinking some. If it weren't for the brain mets we'd probably hold off on starting Ipi for another week or 2 and re-scan to see what was going on. It also begs the questions- when did the brain mets show up (it's been 6 months since my last MRI)? Are they truly new and progessing or could they have been there during the IL2 and like some of the other tumors be stable or regressing? While no one is really happy about brain radiation we're going the better safe than sorry route to try an stop them if they are new/progressing.
I'm crossing my fingers for you and your wife that your MRI is good and you can join the trial. Good luck and all the best to you both!
-Eva
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