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- This topic has 28 replies, 8 voices, and was last updated 14 years, 2 months ago by
ValinMtl.
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- September 29, 2010 at 1:23 am
Does anybody know after going through the Ipi trial what treatments you are excluded from? Just wondering~~~
Linda/Kentucky
Does anybody know after going through the Ipi trial what treatments you are excluded from? Just wondering~~~
Linda/Kentucky
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- September 29, 2010 at 2:13 pm
It would depend on the trial you wanted to try next. Different trial designs have different exclusions. Some exclude certain prior treatments entirely and some require a "wash out" period based on how long the previous treatment can stay in your system.
Hope this helps!
Amy
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- September 29, 2010 at 2:13 pm
It would depend on the trial you wanted to try next. Different trial designs have different exclusions. Some exclude certain prior treatments entirely and some require a "wash out" period based on how long the previous treatment can stay in your system.
Hope this helps!
Amy
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- September 29, 2010 at 3:28 pm
Linda,
I am in a somewhat similar situation.
I was scheduled to start the BRAF treatment, but one of the requirements was failure of prior systemic treatment. Apparently my radiation did not qualify. I will meet with Mel Specialist tomorrow to discuss options, but she was thinking of putting me on a single Dacarbazine treatment, wait the 30 days and then start the BRAF treatment.
I went through all of the trials on Clinicaltrials.gov for my current specialist and the other specialists in the northern illinois area to see what exclusions they had with Dacarbazine. I found out that one of the trials that my Onc's office offers, ALT801, but that excludes any prior chemotherapy treatments, which Dacarbazine falls into. I will discuss my other options besides Dacarbazine to see if I should go for a short immuno therapy before starting Braf.
So the answer is, as I am quickly learning, be your own advocate and print out all of the Melanoma trials in your area from http://www.clinicaltrials.gov/ and look up the inclusions and exclusions yourself. Some Mel specialists will help you with this, some won't. i will find out tomorrow how helpful mine will be. Some of the trials I looked at exclude bone mets, which I have, others require no prior treatment, some limit the prior treatment to 2 or 3. So far, my plan of action is Plan A – Braf pills, Plan B – compassionate use Ipi, Plan C – TBD. I llisted 7 trials from my current specialist and 23 trials from other specialists in the area.
Good luck. It is an adventure.
Bill
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- September 29, 2010 at 3:28 pm
Linda,
I am in a somewhat similar situation.
I was scheduled to start the BRAF treatment, but one of the requirements was failure of prior systemic treatment. Apparently my radiation did not qualify. I will meet with Mel Specialist tomorrow to discuss options, but she was thinking of putting me on a single Dacarbazine treatment, wait the 30 days and then start the BRAF treatment.
I went through all of the trials on Clinicaltrials.gov for my current specialist and the other specialists in the northern illinois area to see what exclusions they had with Dacarbazine. I found out that one of the trials that my Onc's office offers, ALT801, but that excludes any prior chemotherapy treatments, which Dacarbazine falls into. I will discuss my other options besides Dacarbazine to see if I should go for a short immuno therapy before starting Braf.
So the answer is, as I am quickly learning, be your own advocate and print out all of the Melanoma trials in your area from http://www.clinicaltrials.gov/ and look up the inclusions and exclusions yourself. Some Mel specialists will help you with this, some won't. i will find out tomorrow how helpful mine will be. Some of the trials I looked at exclude bone mets, which I have, others require no prior treatment, some limit the prior treatment to 2 or 3. So far, my plan of action is Plan A – Braf pills, Plan B – compassionate use Ipi, Plan C – TBD. I llisted 7 trials from my current specialist and 23 trials from other specialists in the area.
Good luck. It is an adventure.
Bill
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- September 29, 2010 at 4:44 pm
Hi Linda,
I am currently on 'compassionate ipi trial'. IL-2 had been discussed to be done prior to ipi but according to my oncologist my tumors although many were not large enough hence the ipi. I don't know about exclusions after use of ipi, I guess it would depend on the clinicial trial. But just to let you know that in the contract I signed for my trial there is mention as follows:
"if you receive Interleukin-2 (IL-2) a cytokine sometimes used for the treatment of advanced melanom, after receivinig ipilimumab, you may increase your chance of bowel perforation (tear) compared to having received IL-2 without prior treatment with ipilimumab"
…so keep this in mind. Val
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- September 29, 2010 at 4:44 pm
Hi Linda,
I am currently on 'compassionate ipi trial'. IL-2 had been discussed to be done prior to ipi but according to my oncologist my tumors although many were not large enough hence the ipi. I don't know about exclusions after use of ipi, I guess it would depend on the clinicial trial. But just to let you know that in the contract I signed for my trial there is mention as follows:
"if you receive Interleukin-2 (IL-2) a cytokine sometimes used for the treatment of advanced melanom, after receivinig ipilimumab, you may increase your chance of bowel perforation (tear) compared to having received IL-2 without prior treatment with ipilimumab"
…so keep this in mind. Val
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- September 29, 2010 at 5:07 pm
I finished up ipi and started BRAF about a month later. I did not respond to the ipi but am responding to the BRAF.
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- September 29, 2010 at 7:20 pm
Linda, Steve finished 4 cycles of Ipi and immediately started biochemo. After 1 round of biochemo, tumors are shrinking. He'll begin round 2 next week. It may be Ipi late response, biochemo, or both that are helping him. This may be an option for your husband. Good luck! -Diana
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- September 29, 2010 at 10:21 pm
Diana, although I have researched my brain dry I still become confused on some of these tx. What exactly is the biochemo? what side effects is he having? and how was his scans following Ipi at 12 weeks? Thanks for the info to everyone~~~
Linda/Kentucky
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- September 29, 2010 at 10:21 pm
Diana, although I have researched my brain dry I still become confused on some of these tx. What exactly is the biochemo? what side effects is he having? and how was his scans following Ipi at 12 weeks? Thanks for the info to everyone~~~
Linda/Kentucky
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- September 30, 2010 at 5:27 am
Hi LInda & Val,
Steve received his 4th infusion of Ipi on 8/27, 12 wk scans on 9/8, scan results on 9/10, & began biochemo on 9/11. So yes he started immediately following cycle 4 of Ipi, no 30 day wait period. His 12 wk scans showed mel worse everywhere. Maybe Ipi was working or maybe not… Biochemotherapy includes 5 drugs: 3 chemos (cisplatin, dacarbazine, vinblastine) & 2 immune boosting biologic agents (IL-2, interferon). The therapy is pretty intense & involves a hospital stay of 5 days while receiving the drugs through IV then 2 wks at home to recover. The nurses were great helping manage side effects both in the hospital & at home (nausea, diarrhea, fever, loss of appetite, fluid retention, fatigue, weakness, low potassium). Well these are the ones Steve had anyway… Each day at home gets a little better & this week most side effects are gone & he's feeling almost human again. It's a very toxic treatment but toxicity is sometimes what it takes. 2 weeks after starting biochemo, tumors are shrinking. Let me know if you have any other questions & I'll try to help. Good luck!
-Diana
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- September 30, 2010 at 5:45 pm
Hi Diana,
Did Steve receive these 5 drug treatments at any time prior to starting the ipi infusions? My reason for asking is that I just completed the 12 week ipi program and no noticible improvement in my tumors from ipi. However, last October I had these 5 drugs and did not see improvement either. So wondering if I should repeat these 5 drugs again (although like Steve the side effects were miserable but he is seeing positive progress, a good sign).
Thanks,
Bruce in NH
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- September 30, 2010 at 7:29 pm
Hi Bruce,
This is the first time Steve's received all 5 biochemo drugs. He did 1 year of interferon back in 2008 after the original stage 3a diagnosis. The only other treatment he's had prior to Ipi is YM155 + docetaxol last spring following progression to stage 4. There's some thought that Ipi "primes" tumors so biochemo can be more effective. I like to think this is true in Steve's case but just don't know for sure. It is a tough treatment as you know but maybe it's worth trying 1 round & see what happens? Good luck & keep us posted. If I can help with any other questions, just let me know.
-Diana
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- September 30, 2010 at 7:29 pm
Hi Bruce,
This is the first time Steve's received all 5 biochemo drugs. He did 1 year of interferon back in 2008 after the original stage 3a diagnosis. The only other treatment he's had prior to Ipi is YM155 + docetaxol last spring following progression to stage 4. There's some thought that Ipi "primes" tumors so biochemo can be more effective. I like to think this is true in Steve's case but just don't know for sure. It is a tough treatment as you know but maybe it's worth trying 1 round & see what happens? Good luck & keep us posted. If I can help with any other questions, just let me know.
-Diana
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- September 30, 2010 at 5:45 pm
Hi Diana,
Did Steve receive these 5 drug treatments at any time prior to starting the ipi infusions? My reason for asking is that I just completed the 12 week ipi program and no noticible improvement in my tumors from ipi. However, last October I had these 5 drugs and did not see improvement either. So wondering if I should repeat these 5 drugs again (although like Steve the side effects were miserable but he is seeing positive progress, a good sign).
Thanks,
Bruce in NH
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- September 30, 2010 at 7:43 pm
THANK YOU Diana, the information you provided which is very informative and I have kept on my file. Which hospital did Steve have these treatments done? In the event, I can't have access where I live should I need to do this..I'm prayng that the ipi works but I am desperately searching for some type of back-up plan. Val
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- October 1, 2010 at 2:32 am
Val, You're very welcome! Steve's doing the biochemo with Dr. Gonzalez at the CU Melanoma Clinic (University of Colorado hospital) in Aurora (a suburb of Denver). A backup plan is always a good idea but I'm really hoping & praying you're a responder to Ipi & won't need it! Stay positive & keep us posted. -Diana
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- October 1, 2010 at 2:32 am
Val, You're very welcome! Steve's doing the biochemo with Dr. Gonzalez at the CU Melanoma Clinic (University of Colorado hospital) in Aurora (a suburb of Denver). A backup plan is always a good idea but I'm really hoping & praying you're a responder to Ipi & won't need it! Stay positive & keep us posted. -Diana
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- September 30, 2010 at 7:43 pm
THANK YOU Diana, the information you provided which is very informative and I have kept on my file. Which hospital did Steve have these treatments done? In the event, I can't have access where I live should I need to do this..I'm prayng that the ipi works but I am desperately searching for some type of back-up plan. Val
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- September 30, 2010 at 5:27 am
Hi LInda & Val,
Steve received his 4th infusion of Ipi on 8/27, 12 wk scans on 9/8, scan results on 9/10, & began biochemo on 9/11. So yes he started immediately following cycle 4 of Ipi, no 30 day wait period. His 12 wk scans showed mel worse everywhere. Maybe Ipi was working or maybe not… Biochemotherapy includes 5 drugs: 3 chemos (cisplatin, dacarbazine, vinblastine) & 2 immune boosting biologic agents (IL-2, interferon). The therapy is pretty intense & involves a hospital stay of 5 days while receiving the drugs through IV then 2 wks at home to recover. The nurses were great helping manage side effects both in the hospital & at home (nausea, diarrhea, fever, loss of appetite, fluid retention, fatigue, weakness, low potassium). Well these are the ones Steve had anyway… Each day at home gets a little better & this week most side effects are gone & he's feeling almost human again. It's a very toxic treatment but toxicity is sometimes what it takes. 2 weeks after starting biochemo, tumors are shrinking. Let me know if you have any other questions & I'll try to help. Good luck!
-Diana
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- September 29, 2010 at 7:20 pm
Linda, Steve finished 4 cycles of Ipi and immediately started biochemo. After 1 round of biochemo, tumors are shrinking. He'll begin round 2 next week. It may be Ipi late response, biochemo, or both that are helping him. This may be an option for your husband. Good luck! -Diana
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