› Forums › General Melanoma Community › Switching to IPPI from Zel
- This topic has 27 replies, 5 voices, and was last updated 11 years, 4 months ago by
Josh.
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- December 13, 2012 at 4:28 pm
I was diagnosed in July, 2012 with Stage 4 melanoma in my stomach that metasticized to my liver. In Aug. 2012 i found i was BRAF pos i started Zel and have had great success with it. Tumors have shrunk, no new "hot spots", and feeling good. This past week after my PET scan showed great results my doctor wanted to plant the IPPI seed that i might have to make that switch sometime in the near future unless the Zel does continue to work for longer than the average. The side effects of IPPI scare me. Anyone have the this same scenario?
I was diagnosed in July, 2012 with Stage 4 melanoma in my stomach that metasticized to my liver. In Aug. 2012 i found i was BRAF pos i started Zel and have had great success with it. Tumors have shrunk, no new "hot spots", and feeling good. This past week after my PET scan showed great results my doctor wanted to plant the IPPI seed that i might have to make that switch sometime in the near future unless the Zel does continue to work for longer than the average. The side effects of IPPI scare me. Anyone have the this same scenario?
Big B
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- December 13, 2012 at 5:42 pm
Big B –
Sorry to 'meet' you here. I started Z end of May of this year. Had tumor in small intestine. Scans in July showed reduction but scans in Sept showed growth. Our plan the whole time had been to shrink with Z and switch to Ipi which can take some time to start working…
Ended up having my first Ipi end of Sept and surgery Oct 4th to remove a section of my small intestine. Finished dose #4 Nov 27th. No major side effects during. Did get hit pretty bad last week with 'stomach' issues and fatigue. Was put on a mild steriod and things cleared up. I have my scans on the 21st to see what's going on now. Hoping all clear after surgery – but think there was still a lymph node or 2 left behind that couldn't be removed surgerically.
Hang in there!
Erin
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- December 13, 2012 at 5:42 pm
Big B –
Sorry to 'meet' you here. I started Z end of May of this year. Had tumor in small intestine. Scans in July showed reduction but scans in Sept showed growth. Our plan the whole time had been to shrink with Z and switch to Ipi which can take some time to start working…
Ended up having my first Ipi end of Sept and surgery Oct 4th to remove a section of my small intestine. Finished dose #4 Nov 27th. No major side effects during. Did get hit pretty bad last week with 'stomach' issues and fatigue. Was put on a mild steriod and things cleared up. I have my scans on the 21st to see what's going on now. Hoping all clear after surgery – but think there was still a lymph node or 2 left behind that couldn't be removed surgerically.
Hang in there!
Erin
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- December 13, 2012 at 5:42 pm
Big B –
Sorry to 'meet' you here. I started Z end of May of this year. Had tumor in small intestine. Scans in July showed reduction but scans in Sept showed growth. Our plan the whole time had been to shrink with Z and switch to Ipi which can take some time to start working…
Ended up having my first Ipi end of Sept and surgery Oct 4th to remove a section of my small intestine. Finished dose #4 Nov 27th. No major side effects during. Did get hit pretty bad last week with 'stomach' issues and fatigue. Was put on a mild steriod and things cleared up. I have my scans on the 21st to see what's going on now. Hoping all clear after surgery – but think there was still a lymph node or 2 left behind that couldn't be removed surgerically.
Hang in there!
Erin
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- December 13, 2012 at 10:02 pm
Hey Big B,
I did the opposite treatment route (started with ippi and eventually moved onto BRAF). My experience with ippi (now yervoy) was a ton of itching, especially on my legs. Just sort of insane and bloody itching. But other than that, nothing. Seriously, the drug was a piece of cake. No fatigue, no nausea, nothing except itchy legs and a few gray hairs. Also, at the time I started it, I was really sick and cancer was popping up everywhere. Within a week of starting ippi, half my symptoms disappeared. I wound up getting 16 infusions of ippi over about a year and a half, and the drug worked extremely well the entire time.
Best of luck!
Josh
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- December 13, 2012 at 10:42 pm
Josh – I see you started the anti-pd1 trial now? I'm a patient at Sloan also. Did Braf, just finished ipi. Scans coming up next week… Of course very nervous about them! Depending on how things goes I'll either look at going back on Z or trying the anti-pd1 trial…
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- December 19, 2012 at 12:51 am
Josh – sorry to hear it's not working… just had scans today at Sloan. Hopefully get results tomorrow! My doctor did say that no matter what the results are he wants to start looking at getting me in the pd1 trial… we'll see how that goes! best of luck to you!
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- December 19, 2012 at 12:51 am
Josh – sorry to hear it's not working… just had scans today at Sloan. Hopefully get results tomorrow! My doctor did say that no matter what the results are he wants to start looking at getting me in the pd1 trial… we'll see how that goes! best of luck to you!
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- December 19, 2012 at 12:51 am
Josh – sorry to hear it's not working… just had scans today at Sloan. Hopefully get results tomorrow! My doctor did say that no matter what the results are he wants to start looking at getting me in the pd1 trial… we'll see how that goes! best of luck to you!
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- December 13, 2012 at 10:42 pm
Josh – I see you started the anti-pd1 trial now? I'm a patient at Sloan also. Did Braf, just finished ipi. Scans coming up next week… Of course very nervous about them! Depending on how things goes I'll either look at going back on Z or trying the anti-pd1 trial…
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- December 13, 2012 at 10:42 pm
Josh – I see you started the anti-pd1 trial now? I'm a patient at Sloan also. Did Braf, just finished ipi. Scans coming up next week… Of course very nervous about them! Depending on how things goes I'll either look at going back on Z or trying the anti-pd1 trial…
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- December 13, 2012 at 10:02 pm
Hey Big B,
I did the opposite treatment route (started with ippi and eventually moved onto BRAF). My experience with ippi (now yervoy) was a ton of itching, especially on my legs. Just sort of insane and bloody itching. But other than that, nothing. Seriously, the drug was a piece of cake. No fatigue, no nausea, nothing except itchy legs and a few gray hairs. Also, at the time I started it, I was really sick and cancer was popping up everywhere. Within a week of starting ippi, half my symptoms disappeared. I wound up getting 16 infusions of ippi over about a year and a half, and the drug worked extremely well the entire time.
Best of luck!
Josh
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- December 13, 2012 at 10:02 pm
Hey Big B,
I did the opposite treatment route (started with ippi and eventually moved onto BRAF). My experience with ippi (now yervoy) was a ton of itching, especially on my legs. Just sort of insane and bloody itching. But other than that, nothing. Seriously, the drug was a piece of cake. No fatigue, no nausea, nothing except itchy legs and a few gray hairs. Also, at the time I started it, I was really sick and cancer was popping up everywhere. Within a week of starting ippi, half my symptoms disappeared. I wound up getting 16 infusions of ippi over about a year and a half, and the drug worked extremely well the entire time.
Best of luck!
Josh
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- December 14, 2012 at 4:43 pm
Hi, BigB I actually went the opposite way once I became stage 4….yervoy (ippi) then zelboraf, which I'm on now (approaching 5 months). Yervoy wasn't bad. Mostly fatigue, some itching. I'm a former marathon runner and was able to continue running on but at a reduced level. I was also a partial responder….tumors shrunk 60% or more but 2 new ones appeared. Zel seems to be taking care of those. I was also on Interferon several years ago. Of the 3 courses of treatment I find zel the easiest to take as far as side effects. Its also worked best except for brain brain mets. Prior ones are considered stable but 2 new ones have appeared which i Just had Gamma Knifed. Hope all goes well for you.
FrankD Brooklyn
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- December 14, 2012 at 4:43 pm
Hi, BigB I actually went the opposite way once I became stage 4….yervoy (ippi) then zelboraf, which I'm on now (approaching 5 months). Yervoy wasn't bad. Mostly fatigue, some itching. I'm a former marathon runner and was able to continue running on but at a reduced level. I was also a partial responder….tumors shrunk 60% or more but 2 new ones appeared. Zel seems to be taking care of those. I was also on Interferon several years ago. Of the 3 courses of treatment I find zel the easiest to take as far as side effects. Its also worked best except for brain brain mets. Prior ones are considered stable but 2 new ones have appeared which i Just had Gamma Knifed. Hope all goes well for you.
FrankD Brooklyn
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- December 14, 2012 at 4:43 pm
Hi, BigB I actually went the opposite way once I became stage 4….yervoy (ippi) then zelboraf, which I'm on now (approaching 5 months). Yervoy wasn't bad. Mostly fatigue, some itching. I'm a former marathon runner and was able to continue running on but at a reduced level. I was also a partial responder….tumors shrunk 60% or more but 2 new ones appeared. Zel seems to be taking care of those. I was also on Interferon several years ago. Of the 3 courses of treatment I find zel the easiest to take as far as side effects. Its also worked best except for brain brain mets. Prior ones are considered stable but 2 new ones have appeared which i Just had Gamma Knifed. Hope all goes well for you.
FrankD Brooklyn
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- December 15, 2012 at 3:22 pm
I just posted about doing Zel->Ipi -Zel or you can read my profile. Going back on Zel has been hard but I am responding again, very grateful!! -
- December 15, 2012 at 3:22 pm
I just posted about doing Zel->Ipi -Zel or you can read my profile. Going back on Zel has been hard but I am responding again, very grateful!! -
- December 15, 2012 at 3:22 pm
I just posted about doing Zel->Ipi -Zel or you can read my profile. Going back on Zel has been hard but I am responding again, very grateful!! -
- December 19, 2012 at 2:30 am
I started on Zel the end of August for brain mets and a few small lung mets. Brain mets were stable and lung mets were gone. 2 weeks ago was told I now have approx 20 tumor brains. Doing WBR and will be starting ipi Dec 31st. I had a difficult time on Zel's side effects and had to start over several times. I sure am hoping ipi is easier on me than Z.
Hope you are able to stay on Zel for a long time. My onc and I had the same discussion you just had. He was ready to change me over now anyway but sure didn't need the aggressiveness that took over.
Linda
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- December 19, 2012 at 2:30 am
I started on Zel the end of August for brain mets and a few small lung mets. Brain mets were stable and lung mets were gone. 2 weeks ago was told I now have approx 20 tumor brains. Doing WBR and will be starting ipi Dec 31st. I had a difficult time on Zel's side effects and had to start over several times. I sure am hoping ipi is easier on me than Z.
Hope you are able to stay on Zel for a long time. My onc and I had the same discussion you just had. He was ready to change me over now anyway but sure didn't need the aggressiveness that took over.
Linda
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- December 19, 2012 at 2:30 am
I started on Zel the end of August for brain mets and a few small lung mets. Brain mets were stable and lung mets were gone. 2 weeks ago was told I now have approx 20 tumor brains. Doing WBR and will be starting ipi Dec 31st. I had a difficult time on Zel's side effects and had to start over several times. I sure am hoping ipi is easier on me than Z.
Hope you are able to stay on Zel for a long time. My onc and I had the same discussion you just had. He was ready to change me over now anyway but sure didn't need the aggressiveness that took over.
Linda
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