› Forums › General Melanoma Community › Yervoy and reoccurance
- This topic has 15 replies, 4 voices, and was last updated 10 years, 6 months ago by
Julie in SoCal.
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- November 7, 2014 at 5:02 pm
Hey everyone,
Long time since I have been on here. As a update I finished my last Yervoy treatment on July 11th. I just had my first 3 month CT scan and the orginal tumor is no longer there and there are no signs of it spreading to other parts of my body. YAY!
My question is for those of you that have had Yervoy treatment and it has failed. Did it fail imediatly as in the tumors never shrunk or did it work initially then tumors came back further down the road? I am obviouly glad that the scans are clear but still not completly relaxed becuase I don't know how yervoy work long term.
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- November 7, 2014 at 8:47 pm
Hi MixtaJones,
I'm in a similar position. I watched my tumors melt away (YEAAAA!!!) and one year out, all my scans has come back clear. Yervoy seems to have done the trick. Alas, I was a bit hessitant to just belive that I was completely clear of the beast.
So shen I asked my Rock Star Dr about recurrance, he told me that if you have a full response, that is all tumors disappear, and no new ones appear, and don't have a recurrance within the first 2 years, you're golden! He says he's never seen anyone recur after 2 years. This sounds great!
I still have 1 year to go before I'll reach that magical 2 year mark, but hey someone has to make it. Might as well be me.
Trust this will be you, too!
Julie
Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI
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- November 7, 2014 at 8:47 pm
Hi MixtaJones,
I'm in a similar position. I watched my tumors melt away (YEAAAA!!!) and one year out, all my scans has come back clear. Yervoy seems to have done the trick. Alas, I was a bit hessitant to just belive that I was completely clear of the beast.
So shen I asked my Rock Star Dr about recurrance, he told me that if you have a full response, that is all tumors disappear, and no new ones appear, and don't have a recurrance within the first 2 years, you're golden! He says he's never seen anyone recur after 2 years. This sounds great!
I still have 1 year to go before I'll reach that magical 2 year mark, but hey someone has to make it. Might as well be me.
Trust this will be you, too!
Julie
Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI
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- November 8, 2014 at 2:15 am
Holy crap! Congrats!
IPI didn't seem to work for me the first time around, but we're giving it another go. Though I'm in a trial for adjuvant treatment (post op), so I'm worried it's not working simply because there's not enough mel in me to trigger an immune response :/
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- November 8, 2014 at 2:15 am
Holy crap! Congrats!
IPI didn't seem to work for me the first time around, but we're giving it another go. Though I'm in a trial for adjuvant treatment (post op), so I'm worried it's not working simply because there's not enough mel in me to trigger an immune response :/
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- November 8, 2014 at 2:15 am
Holy crap! Congrats!
IPI didn't seem to work for me the first time around, but we're giving it another go. Though I'm in a trial for adjuvant treatment (post op), so I'm worried it's not working simply because there's not enough mel in me to trigger an immune response :/
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- November 10, 2014 at 7:59 pm
Hi O_O,
Thanks for celebrating with me. I can't tell you wether or not you're responding, but I can say I had very little Mel, that is my tumors were very small. They were intransits and so small they didn't show up on a PET scan.
Praying that Ipi will kick in and kick some Mel for you!
Julie
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- November 10, 2014 at 7:59 pm
Hi O_O,
Thanks for celebrating with me. I can't tell you wether or not you're responding, but I can say I had very little Mel, that is my tumors were very small. They were intransits and so small they didn't show up on a PET scan.
Praying that Ipi will kick in and kick some Mel for you!
Julie
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- November 10, 2014 at 7:59 pm
Hi O_O,
Thanks for celebrating with me. I can't tell you wether or not you're responding, but I can say I had very little Mel, that is my tumors were very small. They were intransits and so small they didn't show up on a PET scan.
Praying that Ipi will kick in and kick some Mel for you!
Julie
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- November 7, 2014 at 8:47 pm
Hi MixtaJones,
I'm in a similar position. I watched my tumors melt away (YEAAAA!!!) and one year out, all my scans has come back clear. Yervoy seems to have done the trick. Alas, I was a bit hessitant to just belive that I was completely clear of the beast.
So shen I asked my Rock Star Dr about recurrance, he told me that if you have a full response, that is all tumors disappear, and no new ones appear, and don't have a recurrance within the first 2 years, you're golden! He says he's never seen anyone recur after 2 years. This sounds great!
I still have 1 year to go before I'll reach that magical 2 year mark, but hey someone has to make it. Might as well be me.
Trust this will be you, too!
Julie
Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI
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- November 7, 2014 at 8:52 pm
Congratulations. That sounds awesome.
For me they did a 2 week scan right after the 4th dose. They said they didn't put much weight on the scan because it is very soon and so forth. But once they saw the results they said ipi had failed. Everything was growing especially the one in my left shoulder had grown a whole lot. Plus new stuff. Granted I did zelboraf before that which also failed with everything having some growth and new stuff which I've read after braf fails there is rapid growth so maybe that is what I experienced. I dunno. But yeah yervoy failed right away with nothing shrinking and new stuff showing up. At the time I thought he was wrong but looking back I have to agree with him.
Otherwise though from what I've read people who respond to yervoy typically have long term durability. So I would say congratulations you are in that group. I also remember reading there is a 4 month maintenance cycle where you get a dose every 4 months. But my doc said he never did that because the insurance usually doesn't pay for it.
Artie
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- November 7, 2014 at 8:52 pm
Congratulations. That sounds awesome.
For me they did a 2 week scan right after the 4th dose. They said they didn't put much weight on the scan because it is very soon and so forth. But once they saw the results they said ipi had failed. Everything was growing especially the one in my left shoulder had grown a whole lot. Plus new stuff. Granted I did zelboraf before that which also failed with everything having some growth and new stuff which I've read after braf fails there is rapid growth so maybe that is what I experienced. I dunno. But yeah yervoy failed right away with nothing shrinking and new stuff showing up. At the time I thought he was wrong but looking back I have to agree with him.
Otherwise though from what I've read people who respond to yervoy typically have long term durability. So I would say congratulations you are in that group. I also remember reading there is a 4 month maintenance cycle where you get a dose every 4 months. But my doc said he never did that because the insurance usually doesn't pay for it.
Artie
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- November 7, 2014 at 9:12 pm
My husband was in the ipi vs interferon trial. He had 10 mg. ipi. At 14 weeks. He had a small mets in the liver. We were devastated. He was removed from the trial and didn't receive any maintenance doses. He had microwave ablation in May and is still NED. The mets in the liver slightly shrunk between diagnosis in March and surgery in May. We think the yervoy worked.?congrats on your scan!
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- November 7, 2014 at 9:12 pm
My husband was in the ipi vs interferon trial. He had 10 mg. ipi. At 14 weeks. He had a small mets in the liver. We were devastated. He was removed from the trial and didn't receive any maintenance doses. He had microwave ablation in May and is still NED. The mets in the liver slightly shrunk between diagnosis in March and surgery in May. We think the yervoy worked.?congrats on your scan!
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- November 7, 2014 at 9:12 pm
My husband was in the ipi vs interferon trial. He had 10 mg. ipi. At 14 weeks. He had a small mets in the liver. We were devastated. He was removed from the trial and didn't receive any maintenance doses. He had microwave ablation in May and is still NED. The mets in the liver slightly shrunk between diagnosis in March and surgery in May. We think the yervoy worked.?congrats on your scan!
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- November 7, 2014 at 8:52 pm
Congratulations. That sounds awesome.
For me they did a 2 week scan right after the 4th dose. They said they didn't put much weight on the scan because it is very soon and so forth. But once they saw the results they said ipi had failed. Everything was growing especially the one in my left shoulder had grown a whole lot. Plus new stuff. Granted I did zelboraf before that which also failed with everything having some growth and new stuff which I've read after braf fails there is rapid growth so maybe that is what I experienced. I dunno. But yeah yervoy failed right away with nothing shrinking and new stuff showing up. At the time I thought he was wrong but looking back I have to agree with him.
Otherwise though from what I've read people who respond to yervoy typically have long term durability. So I would say congratulations you are in that group. I also remember reading there is a 4 month maintenance cycle where you get a dose every 4 months. But my doc said he never did that because the insurance usually doesn't pay for it.
Artie
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