› Forums › General Melanoma Community › It seems many Stage IV patients here are just on clinical trials????
- This topic has 24 replies, 5 voices, and was last updated 13 years, 5 months ago by
susanr.
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- June 6, 2012 at 3:03 am
Hello everyone. I am reading many posts on this forum and wondering if any Stage IV patients/friends are on chemo or are you all just on clinical trials for your treatment.my brother is stage IV. Thank god his brain and liver are clear but lung and G.I tract are involved. He is finishing temodor and Abraxane. Had yervoy 12-2011. I don't see many of you on chemo in genral…except IL. I don't see many on his chemo..temodor, abraxane
Hello everyone. I am reading many posts on this forum and wondering if any Stage IV patients/friends are on chemo or are you all just on clinical trials for your treatment.my brother is stage IV. Thank god his brain and liver are clear but lung and G.I tract are involved. He is finishing temodor and Abraxane. Had yervoy 12-2011. I don't see many of you on chemo in genral…except IL. I don't see many on his chemo..temodor, abraxane
Many of you are on trials. i would like him to consider Anti-PD1 but "time is of the Essence " as they say with melanoma. time is not what you have when you are stage IV. One day you have no mets to the brain and then the next few weeks…there it is. How do you risk participating in a trial when you may have a placebo and not the real deal..and then it is too late…I think that I am missing info or mis-informed. Appreciate any your advice.
Susan NY
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- June 6, 2012 at 3:25 am
Susan,
When you are stage IV and participate in a trial there is no placebo unless you are NED. I was in a stage like that in 06 when there were 4 arms. GMCSF + vacine, GMCSF + placebo, placebo + placebo, placebo + vacine. I was only eligible for 2 of the arms since I didn't have hla positive. I don't think there has been another stage IV since then with a placebo. I took the chance because otherwise was just watch and wait.
When Ippi was in a trial phase 3 it was against decar…… (can't think of name right now but it is fda approved for stage IV) There was also a trial of Ippi with 2 different pharm companies making the drug.
Trials often gives stage IV patients when we don't have any other choice.
I hope your brother is doing well with the temador and abraxane. Often patients only know about trials that their Dr is offering.
Linda
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- June 6, 2012 at 3:25 am
Susan,
When you are stage IV and participate in a trial there is no placebo unless you are NED. I was in a stage like that in 06 when there were 4 arms. GMCSF + vacine, GMCSF + placebo, placebo + placebo, placebo + vacine. I was only eligible for 2 of the arms since I didn't have hla positive. I don't think there has been another stage IV since then with a placebo. I took the chance because otherwise was just watch and wait.
When Ippi was in a trial phase 3 it was against decar…… (can't think of name right now but it is fda approved for stage IV) There was also a trial of Ippi with 2 different pharm companies making the drug.
Trials often gives stage IV patients when we don't have any other choice.
I hope your brother is doing well with the temador and abraxane. Often patients only know about trials that their Dr is offering.
Linda
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- June 6, 2012 at 3:25 am
Susan,
When you are stage IV and participate in a trial there is no placebo unless you are NED. I was in a stage like that in 06 when there were 4 arms. GMCSF + vacine, GMCSF + placebo, placebo + placebo, placebo + vacine. I was only eligible for 2 of the arms since I didn't have hla positive. I don't think there has been another stage IV since then with a placebo. I took the chance because otherwise was just watch and wait.
When Ippi was in a trial phase 3 it was against decar…… (can't think of name right now but it is fda approved for stage IV) There was also a trial of Ippi with 2 different pharm companies making the drug.
Trials often gives stage IV patients when we don't have any other choice.
I hope your brother is doing well with the temador and abraxane. Often patients only know about trials that their Dr is offering.
Linda
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- June 6, 2012 at 4:51 pm
I’ve been stage 4 for almost a year now, brain and spine mets. All i have been on is temodar and ive had radiation on the spine and gamma knife for my brain. I havent heard and mention of trials and my dr doesnt feel the need for ipi right now.-
- June 8, 2012 at 2:06 pm
teri…my docs in North Dakota and the Mayo Clinic gave me 6-9 months back in 2009…they also didn't offer clinical trials because it seems they don't have much hope for melanoma…I did it myself and you must be proactive…unless you are a complete responder to IL-2 or Ipi ( Yervoy) there isn't much outside of a clinical trial. Could you go to a comprehensive melanoma center for a second opinion??
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- June 8, 2012 at 2:06 pm
teri…my docs in North Dakota and the Mayo Clinic gave me 6-9 months back in 2009…they also didn't offer clinical trials because it seems they don't have much hope for melanoma…I did it myself and you must be proactive…unless you are a complete responder to IL-2 or Ipi ( Yervoy) there isn't much outside of a clinical trial. Could you go to a comprehensive melanoma center for a second opinion??
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- June 8, 2012 at 10:26 pm
My dr is a melanoma specialist. I’ve been on temodar for about 9 months and it seems to be working very well. I dont have many side affects at all and my labs have been great other than my platelets were low once but they bounced right back up. I haven’t been sick other than the common cold that was pretty much exactly like it was before I started all this. I haven’t had any new mets and there has been a little shrinkage in the spine. My neurologist is thinking that the spots on my mris are scar tissue. Unfortunately I am not braf pos. I’ve never been given a time. They’re hopeful that the radiation killed it but I just have to see it it grows again I guess. This whole melanoma thing is so confusing to me. Im a stage 4 but i do everything just like i did before im working and taking are of my almost 2 year old. Honestly sometimes i forget about the melanoma. You never know whats right or wrong with this stupid cancer.
How did you go about finding a trial? -
- June 8, 2012 at 10:26 pm
My dr is a melanoma specialist. I’ve been on temodar for about 9 months and it seems to be working very well. I dont have many side affects at all and my labs have been great other than my platelets were low once but they bounced right back up. I haven’t been sick other than the common cold that was pretty much exactly like it was before I started all this. I haven’t had any new mets and there has been a little shrinkage in the spine. My neurologist is thinking that the spots on my mris are scar tissue. Unfortunately I am not braf pos. I’ve never been given a time. They’re hopeful that the radiation killed it but I just have to see it it grows again I guess. This whole melanoma thing is so confusing to me. Im a stage 4 but i do everything just like i did before im working and taking are of my almost 2 year old. Honestly sometimes i forget about the melanoma. You never know whats right or wrong with this stupid cancer.
How did you go about finding a trial? -
- June 8, 2012 at 10:26 pm
My dr is a melanoma specialist. I’ve been on temodar for about 9 months and it seems to be working very well. I dont have many side affects at all and my labs have been great other than my platelets were low once but they bounced right back up. I haven’t been sick other than the common cold that was pretty much exactly like it was before I started all this. I haven’t had any new mets and there has been a little shrinkage in the spine. My neurologist is thinking that the spots on my mris are scar tissue. Unfortunately I am not braf pos. I’ve never been given a time. They’re hopeful that the radiation killed it but I just have to see it it grows again I guess. This whole melanoma thing is so confusing to me. Im a stage 4 but i do everything just like i did before im working and taking are of my almost 2 year old. Honestly sometimes i forget about the melanoma. You never know whats right or wrong with this stupid cancer.
How did you go about finding a trial? -
- June 8, 2012 at 2:06 pm
teri…my docs in North Dakota and the Mayo Clinic gave me 6-9 months back in 2009…they also didn't offer clinical trials because it seems they don't have much hope for melanoma…I did it myself and you must be proactive…unless you are a complete responder to IL-2 or Ipi ( Yervoy) there isn't much outside of a clinical trial. Could you go to a comprehensive melanoma center for a second opinion??
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- June 8, 2012 at 1:56 pm
I am stage 4 and I am also NED now for over 2 years AND I am on the BMS anti PD 1….My melanoma was in my lymph nodes…I have heard some people have had 1/3 shrinkage in less than 2 months…I wouldn't put a lot of stock in Temodar…I was on it and it stops working in most cases in 5-7 months..it doesn't srhink it but holds it stable at best for a few months…
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- June 8, 2012 at 1:56 pm
I am stage 4 and I am also NED now for over 2 years AND I am on the BMS anti PD 1….My melanoma was in my lymph nodes…I have heard some people have had 1/3 shrinkage in less than 2 months…I wouldn't put a lot of stock in Temodar…I was on it and it stops working in most cases in 5-7 months..it doesn't srhink it but holds it stable at best for a few months…
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- June 8, 2012 at 1:56 pm
I am stage 4 and I am also NED now for over 2 years AND I am on the BMS anti PD 1….My melanoma was in my lymph nodes…I have heard some people have had 1/3 shrinkage in less than 2 months…I wouldn't put a lot of stock in Temodar…I was on it and it stops working in most cases in 5-7 months..it doesn't srhink it but holds it stable at best for a few months…
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- June 8, 2012 at 2:00 pm
PS go to http://www.cancer.gov…
At stage 4 you need the clinical trials because there is not a whole lot outside of clinicial trials except as you say IL-2, Yervoy and the B-raf…most people only do chemo to reduce the tumor burden. The thing with chemo is – it kills the immune system…the new treatments all boost it. It takes our immune sytem to beat the beast …
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- June 8, 2012 at 2:00 pm
PS go to http://www.cancer.gov…
At stage 4 you need the clinical trials because there is not a whole lot outside of clinicial trials except as you say IL-2, Yervoy and the B-raf…most people only do chemo to reduce the tumor burden. The thing with chemo is – it kills the immune system…the new treatments all boost it. It takes our immune sytem to beat the beast …
-
- June 8, 2012 at 2:00 pm
PS go to http://www.cancer.gov…
At stage 4 you need the clinical trials because there is not a whole lot outside of clinicial trials except as you say IL-2, Yervoy and the B-raf…most people only do chemo to reduce the tumor burden. The thing with chemo is – it kills the immune system…the new treatments all boost it. It takes our immune sytem to beat the beast …
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