› Forums › General Melanoma Community › Stage IV adjuvant treatments
- This topic has 18 replies, 4 voices, and was last updated 12 years, 11 months ago by
BrianP.
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- May 4, 2013 at 10:30 am
I'm traveling to Duke on Monday for surgery on Tuesday to remove a "melanoma like" growth in my small intestines (see "Blood in Stool" thread for details on my exciting rollercoaster ride the last few weeks). I say "melanoma like" because the gastroenterologist only looked at the sight through a balloon endoscopy procedure. He chose not to biopsy it because he did not want to mess with the site because it had clearly been bleeding and whether the biopsy came back as melanoma or not he felt it needed to be removed. Good news is I&
I'm traveling to Duke on Monday for surgery on Tuesday to remove a "melanoma like" growth in my small intestines (see "Blood in Stool" thread for details on my exciting rollercoaster ride the last few weeks). I say "melanoma like" because the gastroenterologist only looked at the sight through a balloon endoscopy procedure. He chose not to biopsy it because he did not want to mess with the site because it had clearly been bleeding and whether the biopsy came back as melanoma or not he felt it needed to be removed. Good news is I've had petscans, CT scans, and multiple colonoscopies and endoscopies and it looks like this is the only spot. Hopefully my surgery will confirm this and I'll be back to NED. 17 months ago when I was orginally classified as stage IIIB NED there weren't too many treatment options (observe, interferon, or IPI vs interferon trial). I'm just now starting my research to formulate my plan of attack following the surgery. Does anyone know of any trials for stage IV NED?
Thanks,
Brian
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- May 4, 2013 at 1:34 pm
It's been several years, but I was in a vaccine trial at the University of Virginia that enrolled stage IV NED patients. Post trial I had a recurrence in the small intestine (which may have been there but escaped CT scans) but have othewise been NED for three years.
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- May 4, 2013 at 1:34 pm
It's been several years, but I was in a vaccine trial at the University of Virginia that enrolled stage IV NED patients. Post trial I had a recurrence in the small intestine (which may have been there but escaped CT scans) but have othewise been NED for three years.
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- May 4, 2013 at 1:34 pm
It's been several years, but I was in a vaccine trial at the University of Virginia that enrolled stage IV NED patients. Post trial I had a recurrence in the small intestine (which may have been there but escaped CT scans) but have othewise been NED for three years.
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- May 4, 2013 at 3:35 pm
Brian,
You could try the trial finder service linked to from this site. I thought it was very good, they found some trials that I never found on my own. MRF does this through an arrangement with a company called EmergingMed. They can look at criteria as fine-grained as what you're describing — NED and stage.
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- May 4, 2013 at 3:35 pm
Brian,
You could try the trial finder service linked to from this site. I thought it was very good, they found some trials that I never found on my own. MRF does this through an arrangement with a company called EmergingMed. They can look at criteria as fine-grained as what you're describing — NED and stage.
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- May 4, 2013 at 3:51 pm
Kylez advice is very good. I am currently in an NED arm of a trial with the BMS anti-PD1 and peptide vaccines at Moffitt in Tampa. I am sure that my particular arm is no longer recruiting. However, the trial has been amended many times to now allow for patients s/p ipi, less vaccines, no vaccines, etc. I don’t for sure if there is currently an NED arm available, but it is definitely worth checking with them to find out. Additionally, they are doing trials with the Merck anti-PD1 product, so you could ask about openings with it as well. In the word of mouth category, the last time I was at Moffitt, I was told that the outcomes in my cohort have been so much better than expected, the researcher was in current talks with BMS to start a bonafide adjunctive trial. So…perhaps, something will come of that soon. A cursory look at available trials shows a variety of vaccine trials (dendritic, MAGE-A3) as well as many with ipi vs older drugs, and at least one with MEK. Just go to Clinicaltrials.gov and put in melanoma, Stage IV, resected. And finally, ipi is on the market and could be prescribed by a willing oncologist. However, as it was approved for patients with active disease an insurance company may not cover it as an adjunct. Best of luck. Hang in there. Celeste -
- May 4, 2013 at 3:51 pm
Kylez advice is very good. I am currently in an NED arm of a trial with the BMS anti-PD1 and peptide vaccines at Moffitt in Tampa. I am sure that my particular arm is no longer recruiting. However, the trial has been amended many times to now allow for patients s/p ipi, less vaccines, no vaccines, etc. I don’t for sure if there is currently an NED arm available, but it is definitely worth checking with them to find out. Additionally, they are doing trials with the Merck anti-PD1 product, so you could ask about openings with it as well. In the word of mouth category, the last time I was at Moffitt, I was told that the outcomes in my cohort have been so much better than expected, the researcher was in current talks with BMS to start a bonafide adjunctive trial. So…perhaps, something will come of that soon. A cursory look at available trials shows a variety of vaccine trials (dendritic, MAGE-A3) as well as many with ipi vs older drugs, and at least one with MEK. Just go to Clinicaltrials.gov and put in melanoma, Stage IV, resected. And finally, ipi is on the market and could be prescribed by a willing oncologist. However, as it was approved for patients with active disease an insurance company may not cover it as an adjunct. Best of luck. Hang in there. Celeste -
- May 4, 2013 at 3:51 pm
Kylez advice is very good. I am currently in an NED arm of a trial with the BMS anti-PD1 and peptide vaccines at Moffitt in Tampa. I am sure that my particular arm is no longer recruiting. However, the trial has been amended many times to now allow for patients s/p ipi, less vaccines, no vaccines, etc. I don’t for sure if there is currently an NED arm available, but it is definitely worth checking with them to find out. Additionally, they are doing trials with the Merck anti-PD1 product, so you could ask about openings with it as well. In the word of mouth category, the last time I was at Moffitt, I was told that the outcomes in my cohort have been so much better than expected, the researcher was in current talks with BMS to start a bonafide adjunctive trial. So…perhaps, something will come of that soon. A cursory look at available trials shows a variety of vaccine trials (dendritic, MAGE-A3) as well as many with ipi vs older drugs, and at least one with MEK. Just go to Clinicaltrials.gov and put in melanoma, Stage IV, resected. And finally, ipi is on the market and could be prescribed by a willing oncologist. However, as it was approved for patients with active disease an insurance company may not cover it as an adjunct. Best of luck. Hang in there. Celeste
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- May 4, 2013 at 3:35 pm
Brian,
You could try the trial finder service linked to from this site. I thought it was very good, they found some trials that I never found on my own. MRF does this through an arrangement with a company called EmergingMed. They can look at criteria as fine-grained as what you're describing — NED and stage.
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