› Forums › General Melanoma Community › Yervoy journey
- This topic has 24 replies, 7 voices, and was last updated 13 years, 4 months ago by
Roxy1453.
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- January 20, 2012 at 12:44 am
I am getting ready to start my first treatment with ipi. I have a lot of fears and questions, but my primary questions have to do with concurrent use of alternative immune stimulating therapies. Does anyone have experience with Naltroxone, intraveneous vitamin C, oleander extract aka Anvirzel? I am also curious about side effects of ipi, but most seem to say it is easy compared to past therapies?I am getting ready to start my first treatment with ipi. I have a lot of fears and questions, but my primary questions have to do with concurrent use of alternative immune stimulating therapies. Does anyone have experience with Naltroxone, intraveneous vitamin C, oleander extract aka Anvirzel? I am also curious about side effects of ipi, but most seem to say it is easy compared to past therapies?
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- January 20, 2012 at 1:03 am
Hi, Mike. I just got back from my 2nd yervoy treatment. So far, no side effects of any consequence at all. In fact, I jogged 5 miles yesterday. Docs keep close tabs on me including lots of blood work. I also had Interferon almost 2 years ago and that was, at least so far, a lot tougher. I don't have any experience with other therapies but wanted to give you some support and wish you well.
Frank d Brooklyn
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- January 20, 2012 at 1:03 am
Hi, Mike. I just got back from my 2nd yervoy treatment. So far, no side effects of any consequence at all. In fact, I jogged 5 miles yesterday. Docs keep close tabs on me including lots of blood work. I also had Interferon almost 2 years ago and that was, at least so far, a lot tougher. I don't have any experience with other therapies but wanted to give you some support and wish you well.
Frank d Brooklyn
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- January 20, 2012 at 11:06 am
Dear Mike,
I did Yervoy a year ago (3 mg/kg) and have been NED ever since. Please refer to my profile for more details. I had several side effects but they were minor (nausea and fatigue, etc). I could have stayed working but I didnt know how I would react so I had resigned my job. I am back to work and feeling great! Best of luck to you. I do not know about those other therapies you mentioned BUT do want to caution you that its best to consult with your melanoma oncologist before you take anything, even over the counter meds or vitamins, and that if you do anything else alongside the Yervoy you wont really be able to know what drug is doing what. Do you know what I mean? Side effects could occur but would you know from what?? Be careful. There are alot of things people grab onto and feel they have to try that will not make cancer disappear.
Contact me if you want to ask me any questions,
Vermont_Donna, stage 3a, NED
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- January 20, 2012 at 11:06 am
Dear Mike,
I did Yervoy a year ago (3 mg/kg) and have been NED ever since. Please refer to my profile for more details. I had several side effects but they were minor (nausea and fatigue, etc). I could have stayed working but I didnt know how I would react so I had resigned my job. I am back to work and feeling great! Best of luck to you. I do not know about those other therapies you mentioned BUT do want to caution you that its best to consult with your melanoma oncologist before you take anything, even over the counter meds or vitamins, and that if you do anything else alongside the Yervoy you wont really be able to know what drug is doing what. Do you know what I mean? Side effects could occur but would you know from what?? Be careful. There are alot of things people grab onto and feel they have to try that will not make cancer disappear.
Contact me if you want to ask me any questions,
Vermont_Donna, stage 3a, NED
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- January 20, 2012 at 11:06 am
Dear Mike,
I did Yervoy a year ago (3 mg/kg) and have been NED ever since. Please refer to my profile for more details. I had several side effects but they were minor (nausea and fatigue, etc). I could have stayed working but I didnt know how I would react so I had resigned my job. I am back to work and feeling great! Best of luck to you. I do not know about those other therapies you mentioned BUT do want to caution you that its best to consult with your melanoma oncologist before you take anything, even over the counter meds or vitamins, and that if you do anything else alongside the Yervoy you wont really be able to know what drug is doing what. Do you know what I mean? Side effects could occur but would you know from what?? Be careful. There are alot of things people grab onto and feel they have to try that will not make cancer disappear.
Contact me if you want to ask me any questions,
Vermont_Donna, stage 3a, NED
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- January 21, 2012 at 3:05 am
I have had side effects with IPI. They started a couple of days before my second infusion. I had diarrhea that ended up causing colitis. So instead of having my third infusion I am on steroids to stop the colitis. I also have itching and rash.I only bring this up so you know that not everyone gets by with no side effects. They have been able to manage my side effects and I’m doing good right now. I will have a PET scan Jan.31 and if all is well, I will my third infusion.
Praying all goes well for you!
Nancy
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- January 21, 2012 at 3:05 am
I have had side effects with IPI. They started a couple of days before my second infusion. I had diarrhea that ended up causing colitis. So instead of having my third infusion I am on steroids to stop the colitis. I also have itching and rash.I only bring this up so you know that not everyone gets by with no side effects. They have been able to manage my side effects and I’m doing good right now. I will have a PET scan Jan.31 and if all is well, I will my third infusion.
Praying all goes well for you!
Nancy
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- January 21, 2012 at 3:05 am
I have had side effects with IPI. They started a couple of days before my second infusion. I had diarrhea that ended up causing colitis. So instead of having my third infusion I am on steroids to stop the colitis. I also have itching and rash.I only bring this up so you know that not everyone gets by with no side effects. They have been able to manage my side effects and I’m doing good right now. I will have a PET scan Jan.31 and if all is well, I will my third infusion.
Praying all goes well for you!
Nancy
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- January 20, 2012 at 1:03 am
Hi, Mike. I just got back from my 2nd yervoy treatment. So far, no side effects of any consequence at all. In fact, I jogged 5 miles yesterday. Docs keep close tabs on me including lots of blood work. I also had Interferon almost 2 years ago and that was, at least so far, a lot tougher. I don't have any experience with other therapies but wanted to give you some support and wish you well.
Frank d Brooklyn
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- January 20, 2012 at 1:26 pm
Mike,
My husband is on ipi in a clincial trial. He is unable to take any supplements while on ipi. They aren't sure of interactions between ipi and supplements.
He has had 3 of his ipi infusions and is set for number 4 in February. To date, he has experienced no side effects. I have avoided posting because I am afraid of jinxing things!
I hope that you have great results with ipi.
barb
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- January 20, 2012 at 1:26 pm
Mike,
My husband is on ipi in a clincial trial. He is unable to take any supplements while on ipi. They aren't sure of interactions between ipi and supplements.
He has had 3 of his ipi infusions and is set for number 4 in February. To date, he has experienced no side effects. I have avoided posting because I am afraid of jinxing things!
I hope that you have great results with ipi.
barb
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- January 20, 2012 at 1:26 pm
Mike,
My husband is on ipi in a clincial trial. He is unable to take any supplements while on ipi. They aren't sure of interactions between ipi and supplements.
He has had 3 of his ipi infusions and is set for number 4 in February. To date, he has experienced no side effects. I have avoided posting because I am afraid of jinxing things!
I hope that you have great results with ipi.
barb
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- January 20, 2012 at 4:59 pm
Hi,
I had my 4th dose of ipi last week as part of a clinical trial I am on. So far I have had no side effects except for some minor itching. I've continued to work and play soccer twice a week. In fact I often joke with my onc that they placed me in the placebo arm of the trial (which there isn't one). All the while knowing that side effects can happen at any time, so far I've been very lucky – now just waiting to see if I respond…. As far as supplements go – I would echo what others have mentioned. While taking a relatively new treatment (ipi), that has a rather large potential side effect profile, I would avoid other treatments. Especially, if your body has not had any experience with these other treatments in the abscence of ipi. Good luck and may we all experience shrinkage!
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- January 20, 2012 at 4:59 pm
Hi,
I had my 4th dose of ipi last week as part of a clinical trial I am on. So far I have had no side effects except for some minor itching. I've continued to work and play soccer twice a week. In fact I often joke with my onc that they placed me in the placebo arm of the trial (which there isn't one). All the while knowing that side effects can happen at any time, so far I've been very lucky – now just waiting to see if I respond…. As far as supplements go – I would echo what others have mentioned. While taking a relatively new treatment (ipi), that has a rather large potential side effect profile, I would avoid other treatments. Especially, if your body has not had any experience with these other treatments in the abscence of ipi. Good luck and may we all experience shrinkage!
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- January 20, 2012 at 4:59 pm
Hi,
I had my 4th dose of ipi last week as part of a clinical trial I am on. So far I have had no side effects except for some minor itching. I've continued to work and play soccer twice a week. In fact I often joke with my onc that they placed me in the placebo arm of the trial (which there isn't one). All the while knowing that side effects can happen at any time, so far I've been very lucky – now just waiting to see if I respond…. As far as supplements go – I would echo what others have mentioned. While taking a relatively new treatment (ipi), that has a rather large potential side effect profile, I would avoid other treatments. Especially, if your body has not had any experience with these other treatments in the abscence of ipi. Good luck and may we all experience shrinkage!
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