› Forums › General Melanoma Community › ‘Resected stage IV’
- This topic has 6 replies, 2 voices, and was last updated 11 years, 11 months ago by
frankMill.
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- October 2, 2013 at 1:32 pm
sorry I don't have porfile yet…9/2011…stage 2a scalp..WLE. negative SNB…neg scane…2/2012 local recurrence, WLE, again, neg. SNB (drained to other side)…6 weeks radiation…scans neg until 8/2013…one 2.2 cm spot lithgts up upper right lung…nothing else, no nodes…(in the scheme of things, I know I was//am fortunate)…had successful VATS…brain MRI was neg at the time.; LDH slightly elevated. Very reputable mel specialist essentially said there isn't any sanctioned (i.e. insurance won't cover adjuvant therapy with say, ipi)…therapy…he also told me (which I already knew!) there was 80 – 90% chance it'll show up again…he also said I was in a small minority with this scenario…even tho I've read of many who have one met show up…resected…NED until the next time! so, in this situation, one has to wait for it to show up again before treatment offered? he is going to be heading up two ipi-pd-1 trials soon…so that's there, and perhaps if/when it shows up (surely those cells are searching for a comfy place to raise a family…) the pd-1 drugs will be approved…but geez…meanwhile, scans every 2 months…however, I thought I'd read where there were trials with ipi for stage IV NED…but, if so, and I got into one, then I wouldn't qualifyy for ipi-pd–1 trail without a long wash-out period…just wanted to know if I've got my facts right…if indeed I have to watch and wait…in light of all the warriors whose descriptions I read (2-3 times per day on this site) I don't for a second discount the relative 'best' of the worst places I could be at this point…you all are beyond inspirational and helpful…thanks for any feedback…
SBeattie
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- October 2, 2013 at 3:30 pm
SBeattie,
I was right where you are a few months ago. Stage IV NED looking for some kind of Adjuvant treatment. Where are you located? I found a couple trials that I was willing to try but unfortunately I had a recurrence before I started a trial so I never got enrolled. One of the trials was a MAGE trial at moffitt and and the University of Virginia had a couple vaccine trials that I was interested in. If you have any questions on these trials you can message me if you like.
Brian
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- October 2, 2013 at 3:30 pm
SBeattie,
I was right where you are a few months ago. Stage IV NED looking for some kind of Adjuvant treatment. Where are you located? I found a couple trials that I was willing to try but unfortunately I had a recurrence before I started a trial so I never got enrolled. One of the trials was a MAGE trial at moffitt and and the University of Virginia had a couple vaccine trials that I was interested in. If you have any questions on these trials you can message me if you like.
Brian
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- October 12, 2013 at 8:43 pm
I was Stage IV NED last fall in the same situation. I didn't want to do a double blind placebo study. Made the trip to Moffitt and met with Dr. Weber. In all of their trials, every patient gets the good stuff!
I was not elibible for PD-1, but I was eligible for the Mage. Dr. Weber thinks that the early results for Mage look very promising. I have another quarterly round of tests next week (I really dread those things).
Yes, I did have the option of not doing a trial and waiting for another met to appear, but I'd rather be proactive or throw up some potential road blocks. From everything I've learned about melanoma, you can't just hope that it's gone. Most likely, it's still in our bodies trying to cluster new tumors.
I wish you all the best!
Frank
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- October 12, 2013 at 8:43 pm
I was Stage IV NED last fall in the same situation. I didn't want to do a double blind placebo study. Made the trip to Moffitt and met with Dr. Weber. In all of their trials, every patient gets the good stuff!
I was not elibible for PD-1, but I was eligible for the Mage. Dr. Weber thinks that the early results for Mage look very promising. I have another quarterly round of tests next week (I really dread those things).
Yes, I did have the option of not doing a trial and waiting for another met to appear, but I'd rather be proactive or throw up some potential road blocks. From everything I've learned about melanoma, you can't just hope that it's gone. Most likely, it's still in our bodies trying to cluster new tumors.
I wish you all the best!
Frank
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- October 12, 2013 at 8:43 pm
I was Stage IV NED last fall in the same situation. I didn't want to do a double blind placebo study. Made the trip to Moffitt and met with Dr. Weber. In all of their trials, every patient gets the good stuff!
I was not elibible for PD-1, but I was eligible for the Mage. Dr. Weber thinks that the early results for Mage look very promising. I have another quarterly round of tests next week (I really dread those things).
Yes, I did have the option of not doing a trial and waiting for another met to appear, but I'd rather be proactive or throw up some potential road blocks. From everything I've learned about melanoma, you can't just hope that it's gone. Most likely, it's still in our bodies trying to cluster new tumors.
I wish you all the best!
Frank
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- October 2, 2013 at 3:30 pm
SBeattie,
I was right where you are a few months ago. Stage IV NED looking for some kind of Adjuvant treatment. Where are you located? I found a couple trials that I was willing to try but unfortunately I had a recurrence before I started a trial so I never got enrolled. One of the trials was a MAGE trial at moffitt and and the University of Virginia had a couple vaccine trials that I was interested in. If you have any questions on these trials you can message me if you like.
Brian
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