› Forums › General Melanoma Community › trial choice
- This topic has 18 replies, 5 voices, and was last updated 9 years, 10 months ago by
Ginger8888.
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- July 15, 2015 at 9:57 pm
After looking for a trial for 3c resected for a month and a half I have some decisions to make. Last week I was contacted by moffitts trial nurse and was told that the last patient to be taken on their stage 3c/4-ipi/nivo ned trial failed screening…and I’m sorry for that person if your out there. They told me if I wanted the last slot and if I meet screening requirements I could get in. I’m actually writing this sitting on the plane to Florida from WI.Last Tuesday I had a meeting with DR Jason Luke at u of Chicago about the checkmate 238 trial. Dr Luke made some valid points and made me realize he was the first “melanoma specialist” I have talked to after seeing 3 other doctor’s. His opinion was the moffitt trial would be to toxic and there is no evidence that the combo would work in a 3c situation. There is evidence of ipi working alone in another trial that has shown a 25% increase in preventing relapse. Although the data only goes out to 2.74 years. There is info on nivo in small patient numbers that shows benefit. He thinks the less cancer the drugs have to go after the more toxic the drugs may be…but no one is sure of this.
My goal is to talk to moffitt which will be DR Abdul because DR Weber is gone 2 weeks and I couldn’t talk to him until beginning of August… Figure out what I think is best. The trial at moffitt definitely would be tough as it is 2.5 years of flying to Florida every two weeks and the only way I could financially do it would be to go alone. I have no clue if this is possible. I would be getting treatment then have to drive myself back to airport and fly home. If the side effects are bad not sure this is going to happen. I would have to work as much as possible to afford this trial. The 238 trial is a good trial but I think moffitt may have better odds of working. The Chicago trial is one year of 2 weeks on 1 week off. I know of course nothing could work also. I am looking for anybody that has taken the combo in adjuvant setting that can give any advice. I have had 8 nodes involved already that were local and have up to 90% chance of relapse. The 238 trial is either ipi at 10mg/kg or nivo at 3mg/kg. The moffitt trial would be the combo for 4 doses every three weeks at 3mg nivo/1mg ipi then just nivo for 2 years every 2 weeks and not sure on that dosing. Anyone’s thoughts and opinions are welcome. Thanks!
Jamie
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- July 16, 2015 at 12:02 am
Congadulations on getting in to the trial. If you followed what the experts who spoke at ASCO 2015 said about the combination of ipi and nivolumab, then you should feel confident that this is a sound decision. As far as what to expect in the way of side effects due to the drugs, I haven't heard anyone say that the smaller the tumor burden the less well tolerated Immunotherapy will be. The Dr. at Moffit are world leaders in the field of Immunotherapy and will be able to handle any complications that come up. If I would have had the option, when I had low tumor burden at stage 3 to get access to Ipi and nivolumab vs Interferon which was my only option back in 2012, I would have jumped at the chance to get the combination. I think the Melanoma community will see in the not to distant future combination Immunotherapy offered to high risk stage 3 patients. I think that once the various trials of Interferon vs Ipi and Interferon vs Pd-1 drugs have had time to collect data, we will see big changes for stage 3 patients. Wishing you the best with the treatments!!!! Ed
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- July 16, 2015 at 1:31 am
Ed
Thanks for the comments. I have not been accepted to either trial yet. I hope things don’t progress by the time I make it to screening. I’m really nervous that I can make it alone driving to and from moffitt and flying home after the treatments. I guess step 1 is just getting into the trial. -
- July 16, 2015 at 1:42 am
I know that I have been really lucky in regards to side effects, fatigue mainly. I have been able to drive myself to all my treatments for the last 18mths. When I was on Interferon back in 2012 by day two of treatments I was a total mess and had to depend on my wife to get me to and from the hospital. I hope you get in to the trial at Moffit . Ed
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- July 16, 2015 at 1:42 am
I know that I have been really lucky in regards to side effects, fatigue mainly. I have been able to drive myself to all my treatments for the last 18mths. When I was on Interferon back in 2012 by day two of treatments I was a total mess and had to depend on my wife to get me to and from the hospital. I hope you get in to the trial at Moffit . Ed
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- July 16, 2015 at 1:42 am
I know that I have been really lucky in regards to side effects, fatigue mainly. I have been able to drive myself to all my treatments for the last 18mths. When I was on Interferon back in 2012 by day two of treatments I was a total mess and had to depend on my wife to get me to and from the hospital. I hope you get in to the trial at Moffit . Ed
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- July 16, 2015 at 1:31 am
Ed
Thanks for the comments. I have not been accepted to either trial yet. I hope things don’t progress by the time I make it to screening. I’m really nervous that I can make it alone driving to and from moffitt and flying home after the treatments. I guess step 1 is just getting into the trial. -
- July 16, 2015 at 1:31 am
Ed
Thanks for the comments. I have not been accepted to either trial yet. I hope things don’t progress by the time I make it to screening. I’m really nervous that I can make it alone driving to and from moffitt and flying home after the treatments. I guess step 1 is just getting into the trial.
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- July 16, 2015 at 12:02 am
Congadulations on getting in to the trial. If you followed what the experts who spoke at ASCO 2015 said about the combination of ipi and nivolumab, then you should feel confident that this is a sound decision. As far as what to expect in the way of side effects due to the drugs, I haven't heard anyone say that the smaller the tumor burden the less well tolerated Immunotherapy will be. The Dr. at Moffit are world leaders in the field of Immunotherapy and will be able to handle any complications that come up. If I would have had the option, when I had low tumor burden at stage 3 to get access to Ipi and nivolumab vs Interferon which was my only option back in 2012, I would have jumped at the chance to get the combination. I think the Melanoma community will see in the not to distant future combination Immunotherapy offered to high risk stage 3 patients. I think that once the various trials of Interferon vs Ipi and Interferon vs Pd-1 drugs have had time to collect data, we will see big changes for stage 3 patients. Wishing you the best with the treatments!!!! Ed
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- July 16, 2015 at 12:02 am
Congadulations on getting in to the trial. If you followed what the experts who spoke at ASCO 2015 said about the combination of ipi and nivolumab, then you should feel confident that this is a sound decision. As far as what to expect in the way of side effects due to the drugs, I haven't heard anyone say that the smaller the tumor burden the less well tolerated Immunotherapy will be. The Dr. at Moffit are world leaders in the field of Immunotherapy and will be able to handle any complications that come up. If I would have had the option, when I had low tumor burden at stage 3 to get access to Ipi and nivolumab vs Interferon which was my only option back in 2012, I would have jumped at the chance to get the combination. I think the Melanoma community will see in the not to distant future combination Immunotherapy offered to high risk stage 3 patients. I think that once the various trials of Interferon vs Ipi and Interferon vs Pd-1 drugs have had time to collect data, we will see big changes for stage 3 patients. Wishing you the best with the treatments!!!! Ed
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- July 16, 2015 at 2:51 am
I think if I were you I would try the one at moffit with the 3mg Nivo and 1mg ipi. A lot of the ipi Nivo combo trials have the ipi higher than Nivo, that one in theory should be less toxic and hopefully still have great results. Good luck for whichever course you take. Also there are lots of charities and help for cancer patients so when you get things started you can look into it. Not exactly sure of your needs. The American cancer society is a good place to start.
Artie
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- July 16, 2015 at 2:51 am
I think if I were you I would try the one at moffit with the 3mg Nivo and 1mg ipi. A lot of the ipi Nivo combo trials have the ipi higher than Nivo, that one in theory should be less toxic and hopefully still have great results. Good luck for whichever course you take. Also there are lots of charities and help for cancer patients so when you get things started you can look into it. Not exactly sure of your needs. The American cancer society is a good place to start.
Artie
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- July 16, 2015 at 2:51 am
I think if I were you I would try the one at moffit with the 3mg Nivo and 1mg ipi. A lot of the ipi Nivo combo trials have the ipi higher than Nivo, that one in theory should be less toxic and hopefully still have great results. Good luck for whichever course you take. Also there are lots of charities and help for cancer patients so when you get things started you can look into it. Not exactly sure of your needs. The American cancer society is a good place to start.
Artie
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- July 16, 2015 at 4:32 pm
Hi Jamie,
I never had to consider treatment options from the point of view of a stage 3 diagnosis/adjuvant treatment choice. My diagnosis skipped from stage 1 to 4. I don't know how much difference there is though, as I would probably be as concerned about local metastases as I am about distant ones.
I got on a PD1/anti-KIR5 trial last year because I was scared of brain met recurrences from 2011, or any new metastases really. I don't remember if the IPI/nivo combo was available with openings for me to consider last year in March. Due to the relatively high number of adverse events/AEs compared other treatments, I know I would have had some concern about AEs but maybe I would have plowed ahead and done it, if that was the first PD1 trial I could get into.
So far on the PD1/KIR5 combo, I haven't had problems with my pituitary gland, thyroid gland getting blown out, minor or serious colitis, etc. But with the goal being health, those are some health risks to consider as tradeoffs with the potential health benefits of treatment.
Travel-wise I'm easily motivated to fly the short (550 miles each way) round trip that gets me to treatment every 2 weeks. I do the whole thing in one day now. I'm glad I don't have to fly further. I have enough motivation to do it without any second thoughts. I haven't had to think of whether I would have enough motivation to travel and risk AEs from the point of view of stage 3/adjuvant. But if travel had been a big stress on me, that stress might be another health concern. I didn't want to drop out of a trial because the travel burden was too onerous, and then maybe be excluded from any future PD1 trials because I had now had prior treatment with PD1.
I guess I'm saying there were some real concerns to balance with the treatment choice I eventually made last year, as well as when I did IPI in 2011. But obviously I went ahead with the treatments I chose.
Don't know if that helps any, just sharing my perspective from my own choices. I hope you have good health whichever treatment plan you go with!
– Kyle
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- July 16, 2015 at 4:32 pm
Hi Jamie,
I never had to consider treatment options from the point of view of a stage 3 diagnosis/adjuvant treatment choice. My diagnosis skipped from stage 1 to 4. I don't know how much difference there is though, as I would probably be as concerned about local metastases as I am about distant ones.
I got on a PD1/anti-KIR5 trial last year because I was scared of brain met recurrences from 2011, or any new metastases really. I don't remember if the IPI/nivo combo was available with openings for me to consider last year in March. Due to the relatively high number of adverse events/AEs compared other treatments, I know I would have had some concern about AEs but maybe I would have plowed ahead and done it, if that was the first PD1 trial I could get into.
So far on the PD1/KIR5 combo, I haven't had problems with my pituitary gland, thyroid gland getting blown out, minor or serious colitis, etc. But with the goal being health, those are some health risks to consider as tradeoffs with the potential health benefits of treatment.
Travel-wise I'm easily motivated to fly the short (550 miles each way) round trip that gets me to treatment every 2 weeks. I do the whole thing in one day now. I'm glad I don't have to fly further. I have enough motivation to do it without any second thoughts. I haven't had to think of whether I would have enough motivation to travel and risk AEs from the point of view of stage 3/adjuvant. But if travel had been a big stress on me, that stress might be another health concern. I didn't want to drop out of a trial because the travel burden was too onerous, and then maybe be excluded from any future PD1 trials because I had now had prior treatment with PD1.
I guess I'm saying there were some real concerns to balance with the treatment choice I eventually made last year, as well as when I did IPI in 2011. But obviously I went ahead with the treatments I chose.
Don't know if that helps any, just sharing my perspective from my own choices. I hope you have good health whichever treatment plan you go with!
– Kyle
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- July 16, 2015 at 4:32 pm
Hi Jamie,
I never had to consider treatment options from the point of view of a stage 3 diagnosis/adjuvant treatment choice. My diagnosis skipped from stage 1 to 4. I don't know how much difference there is though, as I would probably be as concerned about local metastases as I am about distant ones.
I got on a PD1/anti-KIR5 trial last year because I was scared of brain met recurrences from 2011, or any new metastases really. I don't remember if the IPI/nivo combo was available with openings for me to consider last year in March. Due to the relatively high number of adverse events/AEs compared other treatments, I know I would have had some concern about AEs but maybe I would have plowed ahead and done it, if that was the first PD1 trial I could get into.
So far on the PD1/KIR5 combo, I haven't had problems with my pituitary gland, thyroid gland getting blown out, minor or serious colitis, etc. But with the goal being health, those are some health risks to consider as tradeoffs with the potential health benefits of treatment.
Travel-wise I'm easily motivated to fly the short (550 miles each way) round trip that gets me to treatment every 2 weeks. I do the whole thing in one day now. I'm glad I don't have to fly further. I have enough motivation to do it without any second thoughts. I haven't had to think of whether I would have enough motivation to travel and risk AEs from the point of view of stage 3/adjuvant. But if travel had been a big stress on me, that stress might be another health concern. I didn't want to drop out of a trial because the travel burden was too onerous, and then maybe be excluded from any future PD1 trials because I had now had prior treatment with PD1.
I guess I'm saying there were some real concerns to balance with the treatment choice I eventually made last year, as well as when I did IPI in 2011. But obviously I went ahead with the treatments I chose.
Don't know if that helps any, just sharing my perspective from my own choices. I hope you have good health whichever treatment plan you go with!
– Kyle
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- July 18, 2015 at 4:03 am
I am stage 3 C and did just Yervoy, i did my last treatment Aug 13th 2014 all scans so far have been NED.. I just got a new scan result today and am still NED..Good luck!
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- July 18, 2015 at 4:03 am
I am stage 3 C and did just Yervoy, i did my last treatment Aug 13th 2014 all scans so far have been NED.. I just got a new scan result today and am still NED..Good luck!
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- July 18, 2015 at 4:03 am
I am stage 3 C and did just Yervoy, i did my last treatment Aug 13th 2014 all scans so far have been NED.. I just got a new scan result today and am still NED..Good luck!
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