› Forums › General Melanoma Community › Clinical trial vs IL2
- This topic has 45 replies, 6 voices, and was last updated 11 years, 2 months ago by
Hstevens0072.
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- February 10, 2013 at 4:29 pm
My most recent PET showed multiple bilateral lung nodules. I’ve had the biopsy and we are waiting for the results – I’m hoping it was dust bunnies on the scanner. Dr Ibrahim is having it tested for BRAF gene. If it is positive she is suggesting I participate in a Single Arm Open-label Phase II study of Vemurafenib followed by Ipilimumab. My question is this, should I try the IL-2 before attempting the study? After reading multiple reports it sounds like if you do Ipilimumab you can’t then do INterluken but the reverse is not true. Any advice would be most welcome.My most recent PET showed multiple bilateral lung nodules. I’ve had the biopsy and we are waiting for the results – I’m hoping it was dust bunnies on the scanner. Dr Ibrahim is having it tested for BRAF gene. If it is positive she is suggesting I participate in a Single Arm Open-label Phase II study of Vemurafenib followed by Ipilimumab. My question is this, should I try the IL-2 before attempting the study? After reading multiple reports it sounds like if you do Ipilimumab you can’t then do INterluken but the reverse is not true. Any advice would be most welcome.
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- February 10, 2013 at 9:29 pm
I wish I had sonething to share with you. I noticed you mention Dr. Ibrahim, who is treating my husband, Don, at DFCI. I'm assuming it's the same melanoma oncologist. I will be looking forward to seeing helpful posts from others on this site, as there is so much to learn! Best of luck to you.
Janet
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- February 10, 2013 at 9:29 pm
I wish I had sonething to share with you. I noticed you mention Dr. Ibrahim, who is treating my husband, Don, at DFCI. I'm assuming it's the same melanoma oncologist. I will be looking forward to seeing helpful posts from others on this site, as there is so much to learn! Best of luck to you.
Janet
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- February 10, 2013 at 9:29 pm
I wish I had sonething to share with you. I noticed you mention Dr. Ibrahim, who is treating my husband, Don, at DFCI. I'm assuming it's the same melanoma oncologist. I will be looking forward to seeing helpful posts from others on this site, as there is so much to learn! Best of luck to you.
Janet
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- February 10, 2013 at 10:33 pm
These are all FDA approved drugs so the decision is yours. I haven’t heard anything about not being able to do Ipi then Il 2, just maybe not in a trial, they have lots of rules.I did Zel 5 mos, stopped it, -> Ipi -> SRS -> Zel-> finished Ipi on time and still on Zel. Here is what I learned.
Zel -> Ipi too quickly can often cause grade 3,& 4 rash adverse events. Somehow I avoided it. Ask their time frames for switching.
Ipi & Zel together or Zel following Ipi quickly can lead to significant liver toxicity issues. I was also hospitalized for muscle pain so bad I could barely breathe. I believe they stopped the Zel + Ipi combo trials
I was only on the 3 mg/kg dose of Ipi, but this appears to be 10 mg/kg. I’d ask if the side effects are worth it for the higher dose.
Good luck!
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- February 10, 2013 at 11:01 pm
I was diagnosed in Dec 2010 and started off with Dr Christopher Seidler at Harrington Hospital. He is affiliated with Umass in Worcester. I was, and still am, happy with his care but friends and family encouraged me to get a second opinion so I also have Dr Ibrahim. I like both of them very much – they are very much in sync about my course of treatment. I prefer to go to Dana Farber because the results are available so much faster and because the equipment at DF seems more state of the art. I have to admit the first time I had a PET at Harrington and it was in a huge tractor trailer that bounces all over MA and CT, well, it made me nervous. Are you happy with Dr Ibrahim? -
- February 10, 2013 at 11:01 pm
I was diagnosed in Dec 2010 and started off with Dr Christopher Seidler at Harrington Hospital. He is affiliated with Umass in Worcester. I was, and still am, happy with his care but friends and family encouraged me to get a second opinion so I also have Dr Ibrahim. I like both of them very much – they are very much in sync about my course of treatment. I prefer to go to Dana Farber because the results are available so much faster and because the equipment at DF seems more state of the art. I have to admit the first time I had a PET at Harrington and it was in a huge tractor trailer that bounces all over MA and CT, well, it made me nervous. Are you happy with Dr Ibrahim? -
- February 10, 2013 at 11:08 pm
So far, we plan to stick with Dr. Ibrahim. We've only met her once, other appointment was covered by everyone but her. Getting the best and right treatment is what counts, and quickly! DFCI fits the bill. We had radiation and cyberknife in Worcester at St Vincent hospital, both supported by the team at Dana Farber.
P.S. I think I've been in that same PET Trailer when it's parked in Worcester!
Best of luck.
Janet
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- February 10, 2013 at 11:08 pm
So far, we plan to stick with Dr. Ibrahim. We've only met her once, other appointment was covered by everyone but her. Getting the best and right treatment is what counts, and quickly! DFCI fits the bill. We had radiation and cyberknife in Worcester at St Vincent hospital, both supported by the team at Dana Farber.
P.S. I think I've been in that same PET Trailer when it's parked in Worcester!
Best of luck.
Janet
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- February 12, 2013 at 2:22 am
I was also on that trailer in Worcester for my PET scan lol … and i also have been seein Dr Ibrahim since August … Ippi was my first treatment ,didn’t seem to help much tumors have all grown and I have new ones besides one small tumor shrunk a little so i dont know what to think … now tomorrow I am going to DF to start the PD1 trial fingers are crossed 🙂 -
- February 12, 2013 at 3:13 am
I’m wishing you the best of luck! I go to DF on Wednesday for biopsy results and treatment planning I hope/think/guess. The PD1 trial sounds very promising 🙂 wasn’t that trailer the weirdest thing? It was my first PET so I had no idea what to expect… But it certainly wasn’t that! I keep waiting for it to drive away with me locked inside! -
- February 12, 2013 at 3:50 am
Thanks and yeah scans on a truck weird lol I’ve read pretty good things about the pd1 so I’m excited to start I was supposed to start last Friday but this nasty snow im not looking forward to the boring hour drive on rt 9 but im ready to go kick this beast melanomas butt lol I’m also wishing you luck for Wednesday hope the biopsy shows the results you are hoping for good luck ! -
- February 12, 2013 at 3:50 am
Thanks and yeah scans on a truck weird lol I’ve read pretty good things about the pd1 so I’m excited to start I was supposed to start last Friday but this nasty snow im not looking forward to the boring hour drive on rt 9 but im ready to go kick this beast melanomas butt lol I’m also wishing you luck for Wednesday hope the biopsy shows the results you are hoping for good luck ! -
- February 12, 2013 at 3:50 am
Thanks and yeah scans on a truck weird lol I’ve read pretty good things about the pd1 so I’m excited to start I was supposed to start last Friday but this nasty snow im not looking forward to the boring hour drive on rt 9 but im ready to go kick this beast melanomas butt lol I’m also wishing you luck for Wednesday hope the biopsy shows the results you are hoping for good luck ! -
- February 12, 2013 at 3:13 am
I’m wishing you the best of luck! I go to DF on Wednesday for biopsy results and treatment planning I hope/think/guess. The PD1 trial sounds very promising 🙂 wasn’t that trailer the weirdest thing? It was my first PET so I had no idea what to expect… But it certainly wasn’t that! I keep waiting for it to drive away with me locked inside! -
- February 12, 2013 at 3:13 am
I’m wishing you the best of luck! I go to DF on Wednesday for biopsy results and treatment planning I hope/think/guess. The PD1 trial sounds very promising 🙂 wasn’t that trailer the weirdest thing? It was my first PET so I had no idea what to expect… But it certainly wasn’t that! I keep waiting for it to drive away with me locked inside! -
- February 12, 2013 at 2:22 am
I was also on that trailer in Worcester for my PET scan lol … and i also have been seein Dr Ibrahim since August … Ippi was my first treatment ,didn’t seem to help much tumors have all grown and I have new ones besides one small tumor shrunk a little so i dont know what to think … now tomorrow I am going to DF to start the PD1 trial fingers are crossed 🙂 -
- February 12, 2013 at 2:22 am
I was also on that trailer in Worcester for my PET scan lol … and i also have been seein Dr Ibrahim since August … Ippi was my first treatment ,didn’t seem to help much tumors have all grown and I have new ones besides one small tumor shrunk a little so i dont know what to think … now tomorrow I am going to DF to start the PD1 trial fingers are crossed 🙂 -
- February 10, 2013 at 11:08 pm
So far, we plan to stick with Dr. Ibrahim. We've only met her once, other appointment was covered by everyone but her. Getting the best and right treatment is what counts, and quickly! DFCI fits the bill. We had radiation and cyberknife in Worcester at St Vincent hospital, both supported by the team at Dana Farber.
P.S. I think I've been in that same PET Trailer when it's parked in Worcester!
Best of luck.
Janet
-
- February 10, 2013 at 11:01 pm
I was diagnosed in Dec 2010 and started off with Dr Christopher Seidler at Harrington Hospital. He is affiliated with Umass in Worcester. I was, and still am, happy with his care but friends and family encouraged me to get a second opinion so I also have Dr Ibrahim. I like both of them very much – they are very much in sync about my course of treatment. I prefer to go to Dana Farber because the results are available so much faster and because the equipment at DF seems more state of the art. I have to admit the first time I had a PET at Harrington and it was in a huge tractor trailer that bounces all over MA and CT, well, it made me nervous. Are you happy with Dr Ibrahim? -
- February 10, 2013 at 10:53 pm
Thank you. I hadn’t considered asking about dosages but now I will. After reading the entire trial application I may be more frightened of the side effects than the cancer. -
- February 10, 2013 at 10:53 pm
Thank you. I hadn’t considered asking about dosages but now I will. After reading the entire trial application I may be more frightened of the side effects than the cancer. -
- February 10, 2013 at 10:53 pm
Thank you. I hadn’t considered asking about dosages but now I will. After reading the entire trial application I may be more frightened of the side effects than the cancer.
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- February 10, 2013 at 10:33 pm
These are all FDA approved drugs so the decision is yours. I haven’t heard anything about not being able to do Ipi then Il 2, just maybe not in a trial, they have lots of rules.I did Zel 5 mos, stopped it, -> Ipi -> SRS -> Zel-> finished Ipi on time and still on Zel. Here is what I learned.
Zel -> Ipi too quickly can often cause grade 3,& 4 rash adverse events. Somehow I avoided it. Ask their time frames for switching.
Ipi & Zel together or Zel following Ipi quickly can lead to significant liver toxicity issues. I was also hospitalized for muscle pain so bad I could barely breathe. I believe they stopped the Zel + Ipi combo trials
I was only on the 3 mg/kg dose of Ipi, but this appears to be 10 mg/kg. I’d ask if the side effects are worth it for the higher dose.
Good luck!
-
- February 10, 2013 at 10:33 pm
These are all FDA approved drugs so the decision is yours. I haven’t heard anything about not being able to do Ipi then Il 2, just maybe not in a trial, they have lots of rules.I did Zel 5 mos, stopped it, -> Ipi -> SRS -> Zel-> finished Ipi on time and still on Zel. Here is what I learned.
Zel -> Ipi too quickly can often cause grade 3,& 4 rash adverse events. Somehow I avoided it. Ask their time frames for switching.
Ipi & Zel together or Zel following Ipi quickly can lead to significant liver toxicity issues. I was also hospitalized for muscle pain so bad I could barely breathe. I believe they stopped the Zel + Ipi combo trials
I was only on the 3 mg/kg dose of Ipi, but this appears to be 10 mg/kg. I’d ask if the side effects are worth it for the higher dose.
Good luck!
-
- February 11, 2013 at 12:52 am
I also (possibly) have multiple bilateral lung nodules. I say possibly because they have been stable for a year and perhaps they are non viable. I did IL-2 because I was in good shape, the nodules were small and I felt that I had time if it failed to do other therapies.
IL-2 is difficult but doable.
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- February 11, 2013 at 2:26 pm
Thank you for the response. Did you do interferon prior to the IL-2? Just wondering how/if it compares. Did you work during the time you were treated with IL-2 – during the break between treatments? Stable for a year – that sounds great. I wish you continued success!
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- February 11, 2013 at 2:26 pm
Thank you for the response. Did you do interferon prior to the IL-2? Just wondering how/if it compares. Did you work during the time you were treated with IL-2 – during the break between treatments? Stable for a year – that sounds great. I wish you continued success!
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- February 11, 2013 at 2:26 pm
Thank you for the response. Did you do interferon prior to the IL-2? Just wondering how/if it compares. Did you work during the time you were treated with IL-2 – during the break between treatments? Stable for a year – that sounds great. I wish you continued success!
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- February 11, 2013 at 2:26 pm
Thank you for the response. Did you do interferon prior to the IL-2? Just wondering how/if it compares. Did you work during the time you were treated with IL-2 – during the break between treatments? Stable for a year – that sounds great. I wish you continued success!
-
- February 11, 2013 at 2:26 pm
Thank you for the response. Did you do interferon prior to the IL-2? Just wondering how/if it compares. Did you work during the time you were treated with IL-2 – during the break between treatments? Stable for a year – that sounds great. I wish you continued success!
-
- February 11, 2013 at 2:26 pm
Thank you for the response. Did you do interferon prior to the IL-2? Just wondering how/if it compares. Did you work during the time you were treated with IL-2 – during the break between treatments? Stable for a year – that sounds great. I wish you continued success!
-
- February 11, 2013 at 12:52 am
I also (possibly) have multiple bilateral lung nodules. I say possibly because they have been stable for a year and perhaps they are non viable. I did IL-2 because I was in good shape, the nodules were small and I felt that I had time if it failed to do other therapies.
IL-2 is difficult but doable.
-
- February 11, 2013 at 12:52 am
I also (possibly) have multiple bilateral lung nodules. I say possibly because they have been stable for a year and perhaps they are non viable. I did IL-2 because I was in good shape, the nodules were small and I felt that I had time if it failed to do other therapies.
IL-2 is difficult but doable.
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- February 13, 2013 at 11:46 pm
Personally, I would try IL-2 (like I did) before trying other treatments. Especially if you are physically able and your disease is not currently rapidly progressing, life threatening, or causing you tons of pain. If it works for you, you may have a long term durable response and not have to worry about medications and treatments in the future. If it doesn't, you have not closed any doors to other treatment options. It is difficult, very difficult, but most treatment centers who do HD IL-2 are very good at getting people through it.
For me, I am trying to avoid using the BRAF inhibitors for as long as possible – in any form. While we need people to enroll in trials combining medications and different regimens, I feel that if my disease is stable enough I would take every shot at long term, durable response and not taking pills everyday.
Also, why is she suggesting only this trial when the PD-1 trials seem to be progessing with such good results?
Good luck, these decisions are so hard.
Best, Troy
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- February 14, 2013 at 2:57 am
Hi Troy,Received test results today and I am negative for BRAF. Ipilimumab is scheduled to start March1 but in the meantime Dr I is trying to get me into a PD1trial.
We talked about INterluken but for now I think I’ll try something else.These decisions are indeed hard. Here’s hoping I’ve made the right one.
Holly
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- February 14, 2013 at 2:57 am
Hi Troy,Received test results today and I am negative for BRAF. Ipilimumab is scheduled to start March1 but in the meantime Dr I is trying to get me into a PD1trial.
We talked about INterluken but for now I think I’ll try something else.These decisions are indeed hard. Here’s hoping I’ve made the right one.
Holly
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- February 14, 2013 at 2:57 am
Hi Troy,Received test results today and I am negative for BRAF. Ipilimumab is scheduled to start March1 but in the meantime Dr I is trying to get me into a PD1trial.
We talked about INterluken but for now I think I’ll try something else.These decisions are indeed hard. Here’s hoping I’ve made the right one.
Holly
-
- February 13, 2013 at 11:46 pm
Personally, I would try IL-2 (like I did) before trying other treatments. Especially if you are physically able and your disease is not currently rapidly progressing, life threatening, or causing you tons of pain. If it works for you, you may have a long term durable response and not have to worry about medications and treatments in the future. If it doesn't, you have not closed any doors to other treatment options. It is difficult, very difficult, but most treatment centers who do HD IL-2 are very good at getting people through it.
For me, I am trying to avoid using the BRAF inhibitors for as long as possible – in any form. While we need people to enroll in trials combining medications and different regimens, I feel that if my disease is stable enough I would take every shot at long term, durable response and not taking pills everyday.
Also, why is she suggesting only this trial when the PD-1 trials seem to be progessing with such good results?
Good luck, these decisions are so hard.
Best, Troy
-
- February 13, 2013 at 11:46 pm
Personally, I would try IL-2 (like I did) before trying other treatments. Especially if you are physically able and your disease is not currently rapidly progressing, life threatening, or causing you tons of pain. If it works for you, you may have a long term durable response and not have to worry about medications and treatments in the future. If it doesn't, you have not closed any doors to other treatment options. It is difficult, very difficult, but most treatment centers who do HD IL-2 are very good at getting people through it.
For me, I am trying to avoid using the BRAF inhibitors for as long as possible – in any form. While we need people to enroll in trials combining medications and different regimens, I feel that if my disease is stable enough I would take every shot at long term, durable response and not taking pills everyday.
Also, why is she suggesting only this trial when the PD-1 trials seem to be progessing with such good results?
Good luck, these decisions are so hard.
Best, Troy
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