› Forums › General Melanoma Community › Treatment and NCI, has anyone gone thru this?
- This topic has 30 replies, 7 voices, and was last updated 12 years, 8 months ago by
wgalinat.
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- August 25, 2011 at 3:25 pm
Hi,
I am stage 4 and was told to go to the NCI for thier treatment with Steven Rosenberg. Has anyone been thru this? What was it like and did you have sucess?
Thanks!
Kris
Hi,
I am stage 4 and was told to go to the NCI for thier treatment with Steven Rosenberg. Has anyone been thru this? What was it like and did you have sucess?
Thanks!
Kris
- Replies
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- August 26, 2011 at 12:13 am
Their are different treatments at NCI so you will have to be more specific. Right now Val is there and participating in the TIL trial.
Linda
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- August 26, 2011 at 1:00 am
Hi Linda,
Yes this is the treatment I was speaking of. How is Val doing? What part of the treatment is she in right now? Trying to find out what I can expect.
Thanks!
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- August 26, 2011 at 1:15 am
Thanks Linda. I hope she is doing well also. I will be going on tuesday for my consult so I am praying that they will accept me. I've done the IL- and its not fun. But its all certainly worth it if it works. Is Val stage 4?
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- August 26, 2011 at 1:15 am
Thanks Linda. I hope she is doing well also. I will be going on tuesday for my consult so I am praying that they will accept me. I've done the IL- and its not fun. But its all certainly worth it if it works. Is Val stage 4?
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- August 26, 2011 at 1:00 am
Hi Linda,
Yes this is the treatment I was speaking of. How is Val doing? What part of the treatment is she in right now? Trying to find out what I can expect.
Thanks!
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- August 26, 2011 at 1:12 am
The more important question in my mind, is how many people who post here are actually long term survivors of treatments of any NIH study. Rosenberg seems to be stuck in a certain mindset and fails to believe that his treatments may not actually work, over the years, I haven't seen that many patients go there and have a long term survival from the genetically re-engineered immune system(If that is the treatment you are wondering about).
If there are survivors of this therapy, please post.
If it were me, I would research the therapy they were proposing, ask them what the survival rates were over a 5 year period, and then ask them if their were any patients that went through the same therapy that would be willing to talk to you.
My treatments ranking order (from highest to lowest)
1. Surgical removal if at all possible.
2. Adjuntive self made vaccine.(Oncovex)
3. Systemic therapies in order of effectiveness
a. Ipilimumab*+
b. Interleukin 2*
c. Dicarbazine/Temodar*
d. Biochemotherapy
e. BRAF drugs+
f. miscellaneous chemotherapies
* have been shown to have long term remission-Ipilimumab
+ have been shown to cross blood/brain barrier.
Be careful just going by "what people said" without looking at the hard facts and finding cases of actual people who have survived
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- August 26, 2011 at 1:12 am
The more important question in my mind, is how many people who post here are actually long term survivors of treatments of any NIH study. Rosenberg seems to be stuck in a certain mindset and fails to believe that his treatments may not actually work, over the years, I haven't seen that many patients go there and have a long term survival from the genetically re-engineered immune system(If that is the treatment you are wondering about).
If there are survivors of this therapy, please post.
If it were me, I would research the therapy they were proposing, ask them what the survival rates were over a 5 year period, and then ask them if their were any patients that went through the same therapy that would be willing to talk to you.
My treatments ranking order (from highest to lowest)
1. Surgical removal if at all possible.
2. Adjuntive self made vaccine.(Oncovex)
3. Systemic therapies in order of effectiveness
a. Ipilimumab*+
b. Interleukin 2*
c. Dicarbazine/Temodar*
d. Biochemotherapy
e. BRAF drugs+
f. miscellaneous chemotherapies
* have been shown to have long term remission-Ipilimumab
+ have been shown to cross blood/brain barrier.
Be careful just going by "what people said" without looking at the hard facts and finding cases of actual people who have survived
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- August 26, 2011 at 1:23 am
Thanks, I was hoping to hear from some survivors.
I have tied the following –
Surgery, not an otpion now
BRAF- 3 months, didn't work
Oncovex, did work on the one spot but has now spread
IL-2 – didn't work
Radiation
I am holding out on Ipi as it is only 10% sucessful and is now available to all and the doc said to go find other trials first as if i take the ipi it will iliminate me from other trials.
My second oncologist told me to get my but to the NCI and dont pass go.
I will ask more questions when i am there on tuesday.
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- August 26, 2011 at 3:23 am
Kris,
One of the hot trials right now is anti-PD1 (MDX-1106). It's similar to Ipilimumab in some ways (immune treatment, different target). IPI currently disqualifies you for all the MDX-1106 trials at least for the moment. Milder side effect profile than anti-PD1.
Here's a recent webinar on anti-PD1.
I'm on IPI right now. One of my friends is on one of the MDX-1106 trials.
– Kyle
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- August 26, 2011 at 4:52 am
Hi Kyle,
Thanks for the info, yes I am aware of the MDX-1106. The three places running the trials now have waiting lists. I have an appt at Sloan on 9-26. I hate that they out you out so far for appts.
Even if i go out there, there are not quarentees that I will get on the trial. This is actually and ipi/MDX combo trial.
How is the Ipi working for you? How long have you been on it? How are the side effects? Do you know if it is working? How is your friend doing on the MDX-1106?
Have you heard any stories of people doing the NCI trials with Rosenberg? Have you considered participating in this trial?
Not really sure what direction I should persue… really struggling to find the right answer.
Kris
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- August 26, 2011 at 4:52 am
Hi Kyle,
Thanks for the info, yes I am aware of the MDX-1106. The three places running the trials now have waiting lists. I have an appt at Sloan on 9-26. I hate that they out you out so far for appts.
Even if i go out there, there are not quarentees that I will get on the trial. This is actually and ipi/MDX combo trial.
How is the Ipi working for you? How long have you been on it? How are the side effects? Do you know if it is working? How is your friend doing on the MDX-1106?
Have you heard any stories of people doing the NCI trials with Rosenberg? Have you considered participating in this trial?
Not really sure what direction I should persue… really struggling to find the right answer.
Kris
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- August 26, 2011 at 3:23 am
Kris,
One of the hot trials right now is anti-PD1 (MDX-1106). It's similar to Ipilimumab in some ways (immune treatment, different target). IPI currently disqualifies you for all the MDX-1106 trials at least for the moment. Milder side effect profile than anti-PD1.
Here's a recent webinar on anti-PD1.
I'm on IPI right now. One of my friends is on one of the MDX-1106 trials.
– Kyle
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- August 26, 2011 at 1:23 am
Thanks, I was hoping to hear from some survivors.
I have tied the following –
Surgery, not an otpion now
BRAF- 3 months, didn't work
Oncovex, did work on the one spot but has now spread
IL-2 – didn't work
Radiation
I am holding out on Ipi as it is only 10% sucessful and is now available to all and the doc said to go find other trials first as if i take the ipi it will iliminate me from other trials.
My second oncologist told me to get my but to the NCI and dont pass go.
I will ask more questions when i am there on tuesday.
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- August 27, 2011 at 7:58 pm
excellent advice…just suberb…oncology is an ART and every researcher works with a different technique…
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- August 27, 2011 at 7:58 pm
excellent advice…just suberb…oncology is an ART and every researcher works with a different technique…
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- August 26, 2011 at 3:21 pm
Kris,
Sorry to hear the PD1 trials are waiting listed… I guess that confirms they're "hot". I'm glad for my friend that he got in, I hope you don't have to wait too long either.
TIL/ACT is still at the top of my wish-list for trial treatments (along with anti-PD1, some kind of combination MEK inhibitor trial, and maybe E7080), per talks with my oncologist. I just have difficulty qualifying for any of these trials right now. I'm interested in TIL/ACT at NCI, Moffitt or MDA, all of which do it, with MDA probably at the top of my list.
I don't know yet how the IPI's working for me. My first scan will be in a couple of weeks, after I get infusion #4 next week (so that would be one standard course of 4 infusions). As far as 'classic' IPI side effects, I've had next to nothing (endorcrine, liver, skin, GI, etc.) Otherwise, It's also hard to whether any other symptoms are coming from IPI or something else. But so far it's been very tolerable.
Bob Heffernan has gotten the TIL treatment with good results — if you can get to this link, try https://www.facebook.com/topic.php?uid=230996402523&topic=13872
– Kyle
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- August 27, 2011 at 8:01 pm
anti PD 1 trial at Moffitt wants it's recruits to have HLA allele A-2…this sucks as it is a very good study and i can't qualify (i am HLA A-1 and A-11)…just never can catch a break…sucks to be me
boots
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- August 27, 2011 at 8:01 pm
anti PD 1 trial at Moffitt wants it's recruits to have HLA allele A-2…this sucks as it is a very good study and i can't qualify (i am HLA A-1 and A-11)…just never can catch a break…sucks to be me
boots
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- August 26, 2011 at 3:21 pm
Kris,
Sorry to hear the PD1 trials are waiting listed… I guess that confirms they're "hot". I'm glad for my friend that he got in, I hope you don't have to wait too long either.
TIL/ACT is still at the top of my wish-list for trial treatments (along with anti-PD1, some kind of combination MEK inhibitor trial, and maybe E7080), per talks with my oncologist. I just have difficulty qualifying for any of these trials right now. I'm interested in TIL/ACT at NCI, Moffitt or MDA, all of which do it, with MDA probably at the top of my list.
I don't know yet how the IPI's working for me. My first scan will be in a couple of weeks, after I get infusion #4 next week (so that would be one standard course of 4 infusions). As far as 'classic' IPI side effects, I've had next to nothing (endorcrine, liver, skin, GI, etc.) Otherwise, It's also hard to whether any other symptoms are coming from IPI or something else. But so far it's been very tolerable.
Bob Heffernan has gotten the TIL treatment with good results — if you can get to this link, try https://www.facebook.com/topic.php?uid=230996402523&topic=13872
– Kyle
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- August 26, 2011 at 10:24 pm
I’m Warren Galinat. Many here have read my story of stage four and what and where you are about to get into. If you google my name you will see my short story called White Brows. It’s my journey with NIH and Dr Rosenberg. I have helped and referred many people since to the same clinical trial at NIH. I completed the trial, the same one that Val is currently in the middle of, way back in October of 2006… So close to five years out. Would that be of any comfort to you ? I sure hope so, and wish you lots of luck. Should you have any questions directly, you and anybody else who reads this, feel free to email me…[email protected]-
- August 27, 2011 at 12:11 am
Thank you for sharing your story, Warren. I think I read it a couple of months ago when I was first diagnosed Stage IV, but my brain was a little fuzzy, so I read it again! I too had a melanoma right in the middle of my back that was excised along with sentinal glands from both armpits. The "all clear" was declared at that time (2008). In 2010, I had a brain tumor removed that was not cancerous. My 1 year follow up scan changed my life. Apparently, in one year's time, rogue melanoma cells found my lungs and I have approximately 15 mets, and then traveled to my brain and created a nice sized melanoma tumor. The tumor was able to be removed, and I declined adjuvant whole brain radiation at the time. I did find out that I am BRAF + and that I will be able to start on Zelboraf in a couple of weeks. I feel really good right now and I am pretty strong since I just retired from the military in 2008. The thing that freaks me out is the randomness of who makes it and who doesn't make it. Even the doctors are baffled. I am sure God knows, so I realize that I just need to put one foot in front of the other and let it go! Since I am in the Northern California VA system, which includes awesome military surgeons and surgeons from UC Davis, as well, I really feel very comfortable and confident.
Again, thank you so much for sharing your inspirational story!
Cristy, Stage IV
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- August 27, 2011 at 12:11 am
Thank you for sharing your story, Warren. I think I read it a couple of months ago when I was first diagnosed Stage IV, but my brain was a little fuzzy, so I read it again! I too had a melanoma right in the middle of my back that was excised along with sentinal glands from both armpits. The "all clear" was declared at that time (2008). In 2010, I had a brain tumor removed that was not cancerous. My 1 year follow up scan changed my life. Apparently, in one year's time, rogue melanoma cells found my lungs and I have approximately 15 mets, and then traveled to my brain and created a nice sized melanoma tumor. The tumor was able to be removed, and I declined adjuvant whole brain radiation at the time. I did find out that I am BRAF + and that I will be able to start on Zelboraf in a couple of weeks. I feel really good right now and I am pretty strong since I just retired from the military in 2008. The thing that freaks me out is the randomness of who makes it and who doesn't make it. Even the doctors are baffled. I am sure God knows, so I realize that I just need to put one foot in front of the other and let it go! Since I am in the Northern California VA system, which includes awesome military surgeons and surgeons from UC Davis, as well, I really feel very comfortable and confident.
Again, thank you so much for sharing your inspirational story!
Cristy, Stage IV
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- August 26, 2011 at 10:24 pm
I’m Warren Galinat. Many here have read my story of stage four and what and where you are about to get into. If you google my name you will see my short story called White Brows. It’s my journey with NIH and Dr Rosenberg. I have helped and referred many people since to the same clinical trial at NIH. I completed the trial, the same one that Val is currently in the middle of, way back in October of 2006… So close to five years out. Would that be of any comfort to you ? I sure hope so, and wish you lots of luck. Should you have any questions directly, you and anybody else who reads this, feel free to email me…[email protected]
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