› Forums › General Melanoma Community › Please help – IL2 after Ipi?
- This topic has 22 replies, 6 voices, and was last updated 13 years ago by
debbieVA.
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- September 15, 2011 at 12:30 pm
I am scheduled to begin IL2 Monday morn. I was on the ipi/placibo trial study for 14 months with minimal side effects if any, as Stage 3b. I had no tumors till now. Presently I have 2, one in lung, one on chest wall. I was unblinded today and yes, I was getting the ipi. I guess you would say, "I am not a responder." So now we try IL2. My doc says that the side effects will be more intense coming from the ipi, possible bowl perferation. I will have a colonoscopy tomorrow to check for weaknesses or inflamation
I am scheduled to begin IL2 Monday morn. I was on the ipi/placibo trial study for 14 months with minimal side effects if any, as Stage 3b. I had no tumors till now. Presently I have 2, one in lung, one on chest wall. I was unblinded today and yes, I was getting the ipi. I guess you would say, "I am not a responder." So now we try IL2. My doc says that the side effects will be more intense coming from the ipi, possible bowl perferation. I will have a colonoscopy tomorrow to check for weaknesses or inflamation in bowel from ipi and treat colon with steroids for two weeks before IL2 if necessary. Doc has been attempting to talk to mel oncologists around country with patients on IL2 from ipi. I was hoping to hear from someone on the board sooner. I am having second thoughts about doing IL2.
Have any of you experienced IL2 after ipi?
How were the side effects for you? perhaps more intense?
Were you a responder to IL2? (Doc said it was more my "chemestry" that prevented me from responding rather than a "shelf life" of ipi over 14 months)
does anyone know if you don't respond to ipi you are as likely to not respond to IL2?
Has anyone experienced a bowl perferation and what is the long term repercussion?
I am very thankful for this board and all of you…a safe place to go during this time when I lay awake at night thinking of questions I forgot to ask doc.
Gracie, stage 4
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- September 15, 2011 at 2:17 pm
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- September 15, 2011 at 2:17 pm
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- September 15, 2011 at 2:17 pm
Gracie, I have just read your profile and see that you have recently reached stage 4.
I can't give you any specific suggestions regarding IL-2, so I hope that others can answer your questions.
I feel that surgery (if possible) is usually the best initial option. Although this approach can be controversial, it does reduce the tumour load and may result in a better prognosis. You may also like to consider these options: GM-CSF (Leukine), BRAF inhibitors and TIL treatment (includes IL-2).
Hope this helps.
Frank from Australia
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- September 15, 2011 at 2:17 pm
Gracie, I have just read your profile and see that you have recently reached stage 4.
I can't give you any specific suggestions regarding IL-2, so I hope that others can answer your questions.
I feel that surgery (if possible) is usually the best initial option. Although this approach can be controversial, it does reduce the tumour load and may result in a better prognosis. You may also like to consider these options: GM-CSF (Leukine), BRAF inhibitors and TIL treatment (includes IL-2).
Hope this helps.
Frank from Australia
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- September 15, 2011 at 3:07 pm
Gracie:
I have done some digging around and have a bit more information.
Your oncologist can contact the BMS medical information staff and ask about any information regarding IL-2 after "ipi". This is a group only for doctors, and they are allowed to give more information in that setting. The number is (877) 417-1523 or they can send an inquiry to http://www.medinfo.com.
I have heard offline from some docs that a few people have had that procedure done, with varying success. This is not data, just stories.
I also know that data was presented a year ago about the benefit of re-inducing ipi when progression occurs after an initial response. The paper was presented at ASCO June 2010 by Dr. Steve Hodi.
Hope this helps.
Tim–MRF
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- September 15, 2011 at 3:07 pm
Gracie:
I have done some digging around and have a bit more information.
Your oncologist can contact the BMS medical information staff and ask about any information regarding IL-2 after "ipi". This is a group only for doctors, and they are allowed to give more information in that setting. The number is (877) 417-1523 or they can send an inquiry to http://www.medinfo.com.
I have heard offline from some docs that a few people have had that procedure done, with varying success. This is not data, just stories.
I also know that data was presented a year ago about the benefit of re-inducing ipi when progression occurs after an initial response. The paper was presented at ASCO June 2010 by Dr. Steve Hodi.
Hope this helps.
Tim–MRF
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- September 15, 2011 at 3:30 pm
Cytotoxic T lymphocyte-associated antigen 4 blockade with ipilimumab: Long-term follow-up of 179 patients with metastatic melanoma 2010 ASCO Annual Meeting
Abstract No:8544
Citation:
J Clin Oncol 28:15s, 2010 (suppl; abstr 8544)Author(s):
P. A. Prieto, J. C. Yang, R. M. Sherry, M. S. Hughes, U. S. Kammula, D. E. White, C. L. Levy, S. A. Rosenberg, G. Q. Phan; Surgery Branch, National Cancer Institute, National Institutes of Health, Bethesda, MD; National Cancer Institute, National Institutes of Health, Bethesda, MD; National Cancer Institute, Bethesda, MD; Surgery Branch, National Cancer Institute, Bethesda, MD
Abstract:
Background: We have previously shown objective clinical responses in patients with metastatic melanoma treated with CTLA-4 blockade using ipilimumab. We have treated 179 patients in 3 separate clinical trials and now have long-term follow-up to evaluate the durability and unique features of this immunotherapy. Methods: A total of 179 patients with metastatic melanoma were treated in 3 trials: In Protocol 1, 56 patients received ipilimumab with gp100 peptide vaccines. In Protocol 2, 36 patients received ipilimumab with high-dose interleukin-2 (IL-2). In Protocol 3, 87 patients received intra-patient dose escalation of ipilimumab and were randomized to receive gp100 peptides. We have updated and analyzed the follow-up and survival data for these trials. Results: With median follow-up for Protocol 1, 2, and 3 being 80, 71, and 60 months, median survival was 15, 16, and 13 months, respectively. Objective tumor regression was 12% for Protocol 1, 25% for Protocol 2, and 21% for Protocol 3. Patients in Protocol 2 had a 17% complete response rate (6 patients: 77+, 74+, 72+, 71+, 71+, and 69+ months), as compared to 7% in Protocol 1 (4 patients: 82+, 81+, 79+, and 66+ months) and 8% in Protocol 3 (5 patients: 64+, 63+, 62+, 60+, and 55+ months); all complete responses are ongoing. Many patients who eventually became complete responders had continual tumor shrinkage after stopping therapy. Conclusions: CTLA-4 blockade with ipilimumab can achieve durable objective tumor regression in patients with metastatic melanoma. The combination of ipilimumab and IL-2 appears to have an increased complete response rate, although this needs to be tested in a prospective randomized trial. This report represents the largest single-institution experience with the longest follow-up for this agent; our results support its role as a viable treatment option for patients with metastatic melanoma.
Best Regards,
Jimmy B
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- September 15, 2011 at 3:30 pm
Cytotoxic T lymphocyte-associated antigen 4 blockade with ipilimumab: Long-term follow-up of 179 patients with metastatic melanoma 2010 ASCO Annual Meeting
Abstract No:8544
Citation:
J Clin Oncol 28:15s, 2010 (suppl; abstr 8544)Author(s):
P. A. Prieto, J. C. Yang, R. M. Sherry, M. S. Hughes, U. S. Kammula, D. E. White, C. L. Levy, S. A. Rosenberg, G. Q. Phan; Surgery Branch, National Cancer Institute, National Institutes of Health, Bethesda, MD; National Cancer Institute, National Institutes of Health, Bethesda, MD; National Cancer Institute, Bethesda, MD; Surgery Branch, National Cancer Institute, Bethesda, MD
Abstract:
Background: We have previously shown objective clinical responses in patients with metastatic melanoma treated with CTLA-4 blockade using ipilimumab. We have treated 179 patients in 3 separate clinical trials and now have long-term follow-up to evaluate the durability and unique features of this immunotherapy. Methods: A total of 179 patients with metastatic melanoma were treated in 3 trials: In Protocol 1, 56 patients received ipilimumab with gp100 peptide vaccines. In Protocol 2, 36 patients received ipilimumab with high-dose interleukin-2 (IL-2). In Protocol 3, 87 patients received intra-patient dose escalation of ipilimumab and were randomized to receive gp100 peptides. We have updated and analyzed the follow-up and survival data for these trials. Results: With median follow-up for Protocol 1, 2, and 3 being 80, 71, and 60 months, median survival was 15, 16, and 13 months, respectively. Objective tumor regression was 12% for Protocol 1, 25% for Protocol 2, and 21% for Protocol 3. Patients in Protocol 2 had a 17% complete response rate (6 patients: 77+, 74+, 72+, 71+, 71+, and 69+ months), as compared to 7% in Protocol 1 (4 patients: 82+, 81+, 79+, and 66+ months) and 8% in Protocol 3 (5 patients: 64+, 63+, 62+, 60+, and 55+ months); all complete responses are ongoing. Many patients who eventually became complete responders had continual tumor shrinkage after stopping therapy. Conclusions: CTLA-4 blockade with ipilimumab can achieve durable objective tumor regression in patients with metastatic melanoma. The combination of ipilimumab and IL-2 appears to have an increased complete response rate, although this needs to be tested in a prospective randomized trial. This report represents the largest single-institution experience with the longest follow-up for this agent; our results support its role as a viable treatment option for patients with metastatic melanoma.
Best Regards,
Jimmy B
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- September 16, 2011 at 12:20 am
Thank you so much for your quick and qualified response. Am I to understand that having the ipi first then move to IL2 may possibly be a plus? It is facinating to me that some treatments work better for some than others and even a combination of therapies can be more effective than single therapies.
Now I totally understand why you make a decision and not look back. It could have the potential to drive you crazy with all the new breakthroughs… It is very exciting.
Again thank you so much for taking the time to send me research and encouragement.
Gracie
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- September 16, 2011 at 12:20 am
Thank you so much for your quick and qualified response. Am I to understand that having the ipi first then move to IL2 may possibly be a plus? It is facinating to me that some treatments work better for some than others and even a combination of therapies can be more effective than single therapies.
Now I totally understand why you make a decision and not look back. It could have the potential to drive you crazy with all the new breakthroughs… It is very exciting.
Again thank you so much for taking the time to send me research and encouragement.
Gracie
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- September 15, 2011 at 9:57 pm
Hi Gracie,
I was in a clinical trial for resected melanoma using ipi (stage IV at the time via one lung met) and got a total of 4 doses before I had a recurrence (lymph node). Following the recurrence, I was hoping, at the time (2008) to get into the anti-PD1 trial but it wasn't available to me then.
As a result, I elected to do a 6 month adjuvant treatment of pulsed IL-2. This is a lower dose than the standard treatment but since this was adjuvant (tumor had been resected), thought I would try it. I'm approaching my third year of being NED – having scans soon to confirm – so from that standpoint, it appears to have been helpful.
Unfortunately, I have fibromyalgia which was well managed before the IL-2 but the treatment seemed to really aggravate it and I'm still working to get it under control. I doubt that is something that you would have to worry about though.
You may find this article interesting – it was brought to my attention by my dermatologist and is written by a dermatologist who was diagnosed with melanoma and did Ipi first followed by IL-2. She appears to have done really well! Here is the link:
http://www.skincancer.org/surviving-advanced-melanoma.html
Wishing you the best of luck,
Mary
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- September 15, 2011 at 10:17 pm
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- September 15, 2011 at 10:17 pm
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- September 16, 2011 at 12:36 am
Mary, I would just like to chime in here and say that my family has a history of fibromyalgia. I have also experienced it, and have recently found that having good vitamin D levels is very important. From what I have read, many people are deficient in this vitamin. However, there is some controversy over what the optimum levels should be.
Best wishes
Frank from Australia
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- September 16, 2011 at 12:36 am
Mary, I would just like to chime in here and say that my family has a history of fibromyalgia. I have also experienced it, and have recently found that having good vitamin D levels is very important. From what I have read, many people are deficient in this vitamin. However, there is some controversy over what the optimum levels should be.
Best wishes
Frank from Australia
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- September 15, 2011 at 9:57 pm
Hi Gracie,
I was in a clinical trial for resected melanoma using ipi (stage IV at the time via one lung met) and got a total of 4 doses before I had a recurrence (lymph node). Following the recurrence, I was hoping, at the time (2008) to get into the anti-PD1 trial but it wasn't available to me then.
As a result, I elected to do a 6 month adjuvant treatment of pulsed IL-2. This is a lower dose than the standard treatment but since this was adjuvant (tumor had been resected), thought I would try it. I'm approaching my third year of being NED – having scans soon to confirm – so from that standpoint, it appears to have been helpful.
Unfortunately, I have fibromyalgia which was well managed before the IL-2 but the treatment seemed to really aggravate it and I'm still working to get it under control. I doubt that is something that you would have to worry about though.
You may find this article interesting – it was brought to my attention by my dermatologist and is written by a dermatologist who was diagnosed with melanoma and did Ipi first followed by IL-2. She appears to have done really well! Here is the link:
http://www.skincancer.org/surviving-advanced-melanoma.html
Wishing you the best of luck,
Mary
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- September 18, 2011 at 1:30 am
Hi Gracie…..
Sorry to hear ipi was not your answer. I recieved 57 High Dose IL-2 infusions from 2007-2008 over 11 months. I am blessed to tell you I am a Complete Responder. If I can be of any help to you, please feel free to contact me.
Wishing you the best!
Debbie Stage 4 (2006) NED (2008)
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- September 18, 2011 at 1:30 am
Hi Gracie…..
Sorry to hear ipi was not your answer. I recieved 57 High Dose IL-2 infusions from 2007-2008 over 11 months. I am blessed to tell you I am a Complete Responder. If I can be of any help to you, please feel free to contact me.
Wishing you the best!
Debbie Stage 4 (2006) NED (2008)
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