Yervoy (Ipi) for Late Stage III

Hi Matt-my husband just started this trial in Boston
He got the Ipi 10mg arm. Had his first treatment 2 days ago and no side effects as of yet. They say after the second dose it’s more likely to start. We researched quite a bit and it seemed to us Ipi was the most effective in fighting this disease-so we are cautiously optimistic! It seems like there are no certainties with Melanoma, so do your research and make a decision you are comfortable with. It’s very scary -all the unknowns-but, we feel better trying to fight this thing! Will keep you posted on his progress. Good luck!

I'm in that trial, and got randomized into the arm with low dose ipi. In October I'll have my 7th of 8 doses. I have had zero side effects.

I know I'm very fortunate but my lifestyle hasn't been affected at all, except for spending a little bit of time at Mayo Clinic every 3 weeks at first, then every 12. I continue to work full time, and work a 2nd job at the gym, work out/run, go out with friends, etc. I highly doubt I would have been able to do all of this on interferon.

My theory on going for the trial was, I was willing to try interferon if I were randomized into that arm, but why not try to get a new medicine that could and probably will work better, and have less side effects? Not that there aren't side effects with ipi, but they seem to be less than interferon, and I've learned over the last year or so that very few people make it through the entire year of interferon.

The problem with being where you are is, you're so overwhelmed with all this new information, I was there just a little over a year ago, hadn't found this site yet, and didn't know what to do. I didn't want to be a guinea pig for a new medicine, didn't want to be sick for a year on interferon, but didn't want to do nothing either!

Best of luck to you with your decisions, and with the trial if you choose to enter it!

Melissa

I'm in that trial, and got randomized into the arm with low dose ipi. In October I'll have my 7th of 8 doses. I have had zero side effects.

I know I'm very fortunate but my lifestyle hasn't been affected at all, except for spending a little bit of time at Mayo Clinic every 3 weeks at first, then every 12. I continue to work full time, and work a 2nd job at the gym, work out/run, go out with friends, etc. I highly doubt I would have been able to do all of this on interferon.

My theory on going for the trial was, I was willing to try interferon if I were randomized into that arm, but why not try to get a new medicine that could and probably will work better, and have less side effects? Not that there aren't side effects with ipi, but they seem to be less than interferon, and I've learned over the last year or so that very few people make it through the entire year of interferon.

The problem with being where you are is, you're so overwhelmed with all this new information, I was there just a little over a year ago, hadn't found this site yet, and didn't know what to do. I didn't want to be a guinea pig for a new medicine, didn't want to be sick for a year on interferon, but didn't want to do nothing either!

Best of luck to you with your decisions, and with the trial if you choose to enter it!

Melissa

I'm in that trial, and got randomized into the arm with low dose ipi. In October I'll have my 7th of 8 doses. I have had zero side effects.

I know I'm very fortunate but my lifestyle hasn't been affected at all, except for spending a little bit of time at Mayo Clinic every 3 weeks at first, then every 12. I continue to work full time, and work a 2nd job at the gym, work out/run, go out with friends, etc. I highly doubt I would have been able to do all of this on interferon.

My theory on going for the trial was, I was willing to try interferon if I were randomized into that arm, but why not try to get a new medicine that could and probably will work better, and have less side effects? Not that there aren't side effects with ipi, but they seem to be less than interferon, and I've learned over the last year or so that very few people make it through the entire year of interferon.

The problem with being where you are is, you're so overwhelmed with all this new information, I was there just a little over a year ago, hadn't found this site yet, and didn't know what to do. I didn't want to be a guinea pig for a new medicine, didn't want to be sick for a year on interferon, but didn't want to do nothing either!

Best of luck to you with your decisions, and with the trial if you choose to enter it!

Melissa

Hi Matt-my husband just started this trial in Boston
He got the Ipi 10mg arm. Had his first treatment 2 days ago and no side effects as of yet. They say after the second dose it’s more likely to start. We researched quite a bit and it seemed to us Ipi was the most effective in fighting this disease-so we are cautiously optimistic! It seems like there are no certainties with Melanoma, so do your research and make a decision you are comfortable with. It’s very scary -all the unknowns-but, we feel better trying to fight this thing! Will keep you posted on his progress. Good luck!

Hi Matt-my husband just started this trial in Boston
He got the Ipi 10mg arm. Had his first treatment 2 days ago and no side effects as of yet. They say after the second dose it’s more likely to start. We researched quite a bit and it seemed to us Ipi was the most effective in fighting this disease-so we are cautiously optimistic! It seems like there are no certainties with Melanoma, so do your research and make a decision you are comfortable with. It’s very scary -all the unknowns-but, we feel better trying to fight this thing! Will keep you posted on his progress. Good luck!

Hi Matt! Sorry to hear about ur diagnosis. It stinks having this disease. I have been on this study and almost completed with the treatment phase. My treatment regiment was for 10mg of ippi which is something I would rather have personally. Interferon did not cut it with me especially the stats. During the induction phase where I received a injection every 3 weeks, I did get really sick by the 3rd treatment. I lost 30 lbs because I could not eat. I was put on steroids which helped greatly. For the maintainence phase, I have received 2 of 3 treatments. I had to skip one because of enlarged thyroid which again was treated with steroids. My last treatment is the 26 of this month. All this time, I have had clear scans and no reoccurence other than atypical mole. The doc at the cleveland clinic told me because of my symptoms he believes this treatment regiment will not cause any more reoccurence other than the skin level. I have been cancer free since April of 2012. If you also want some more info on my reactions with the study you could see my blog at themelanomadiaries.blogspot.com. Pray for the best for you.

Hi Matt! Sorry to hear about ur diagnosis. It stinks having this disease. I have been on this study and almost completed with the treatment phase. My treatment regiment was for 10mg of ippi which is something I would rather have personally. Interferon did not cut it with me especially the stats. During the induction phase where I received a injection every 3 weeks, I did get really sick by the 3rd treatment. I lost 30 lbs because I could not eat. I was put on steroids which helped greatly. For the maintainence phase, I have received 2 of 3 treatments. I had to skip one because of enlarged thyroid which again was treated with steroids. My last treatment is the 26 of this month. All this time, I have had clear scans and no reoccurence other than atypical mole. The doc at the cleveland clinic told me because of my symptoms he believes this treatment regiment will not cause any more reoccurence other than the skin level. I have been cancer free since April of 2012. If you also want some more info on my reactions with the study you could see my blog at themelanomadiaries.blogspot.com. Pray for the best for you.

Hi Matt! Sorry to hear about ur diagnosis. It stinks having this disease. I have been on this study and almost completed with the treatment phase. My treatment regiment was for 10mg of ippi which is something I would rather have personally. Interferon did not cut it with me especially the stats. During the induction phase where I received a injection every 3 weeks, I did get really sick by the 3rd treatment. I lost 30 lbs because I could not eat. I was put on steroids which helped greatly. For the maintainence phase, I have received 2 of 3 treatments. I had to skip one because of enlarged thyroid which again was treated with steroids. My last treatment is the 26 of this month. All this time, I have had clear scans and no reoccurence other than atypical mole. The doc at the cleveland clinic told me because of my symptoms he believes this treatment regiment will not cause any more reoccurence other than the skin level. I have been cancer free since April of 2012. If you also want some more info on my reactions with the study you could see my blog at themelanomadiaries.blogspot.com. Pray for the best for you.

Matt, I have taken both interferon and will get my 4th dose of 3mg/kg Ipi on Monday.  Ipi has been MUCH easier to deal with.  The fatigue from interferon was awful.  I get slight fatigue from Ipi but I am still able to work full time and have not run into any other side effects besides occasional loose stools which always go away with imodium.

 

I would also not worry too much about the severe side effects with ipi, as the doctors are much more aware of what they are and what to watch for.  They should be watching you like a hawk and will have corrective actions ready for you if you should start to see something that might become dangerous.

 

Looking back, I wish I had done the ipi/interferon trial when I was stage iiic, but I decided to go for interferon as I was afraid of the scary ipi side-effects.

 

For reference, I'm a 29 YO male.

Matt, I have taken both interferon and will get my 4th dose of 3mg/kg Ipi on Monday.  Ipi has been MUCH easier to deal with.  The fatigue from interferon was awful.  I get slight fatigue from Ipi but I am still able to work full time and have not run into any other side effects besides occasional loose stools which always go away with imodium.

 

I would also not worry too much about the severe side effects with ipi, as the doctors are much more aware of what they are and what to watch for.  They should be watching you like a hawk and will have corrective actions ready for you if you should start to see something that might become dangerous.

 

Looking back, I wish I had done the ipi/interferon trial when I was stage iiic, but I decided to go for interferon as I was afraid of the scary ipi side-effects.

 

For reference, I'm a 29 YO male.

Matt, I have taken both interferon and will get my 4th dose of 3mg/kg Ipi on Monday.  Ipi has been MUCH easier to deal with.  The fatigue from interferon was awful.  I get slight fatigue from Ipi but I am still able to work full time and have not run into any other side effects besides occasional loose stools which always go away with imodium.

 

I would also not worry too much about the severe side effects with ipi, as the doctors are much more aware of what they are and what to watch for.  They should be watching you like a hawk and will have corrective actions ready for you if you should start to see something that might become dangerous.

 

Looking back, I wish I had done the ipi/interferon trial when I was stage iiic, but I decided to go for interferon as I was afraid of the scary ipi side-effects.

 

For reference, I'm a 29 YO male.