Kengeo3

I agree with what everyone has said. Positive Attitude is really important, so try to encourage your dad as much as possible,   For stage 4, Opdivo or Keytruda are about 4 times as effective as Yervoy, in terms of the percentage of patients responding to treatment.   The combination of Opdivo with Yervoy is about 5 to 6 times as effective.   Any of these medicines, including Yervoy, can result in a long term survival, in many cases meaning that the person lives long enough that they won't die of melanoma.  The side effects can be difficult, but are almost always treatable.  He should definitely go to a specialist, preferably at a cancer center with a melanoma specialist.

I agree with what everyone has said. Positive Attitude is really important, so try to encourage your dad as much as possible,   For stage 4, Opdivo or Keytruda are about 4 times as effective as Yervoy, in terms of the percentage of patients responding to treatment.   The combination of Opdivo with Yervoy is about 5 to 6 times as effective.   Any of these medicines, including Yervoy, can result in a long term survival, in many cases meaning that the person lives long enough that they won't die of melanoma.  The side effects can be difficult, but are almost always treatable.  He should definitely go to a specialist, preferably at a cancer center with a melanoma specialist.

I agree with what everyone has said. Positive Attitude is really important, so try to encourage your dad as much as possible,   For stage 4, Opdivo or Keytruda are about 4 times as effective as Yervoy, in terms of the percentage of patients responding to treatment.   The combination of Opdivo with Yervoy is about 5 to 6 times as effective.   Any of these medicines, including Yervoy, can result in a long term survival, in many cases meaning that the person lives long enough that they won't die of melanoma.  The side effects can be difficult, but are almost always treatable.  He should definitely go to a specialist, preferably at a cancer center with a melanoma specialist.

Hi–I don't know where you are located or who you are seeing, but from my experience with stage 4, I would try to go to a major (university) cancer center.  The docs at the major centers are usually much more creative and aggressive than ones at your local cancer center.   I don't know exactly what is currently approved for stage III,  but if you can get it, either of the PD-1 drugs, Opdivo (Nivolumab) or Keytruda (Pembrolizumab), is much more effective than Yervoy (Ipilimumab), and the combo  is the most effective, albeit with the most side effects.   There are always exceptions, but generally speaking, the PD-1 drugs have far fewer side effects than Yervoy and have a much greater response rate.  I am surprised that your doc is talking about a 2 year program for Yervoy–usually people don't tolerate more than 4 doses, and I didn't think anyone could get 10 mg of Yervoy anymore–I know that was done in phase one trials, but the accepted dose is 3 mg.     What I am hearing you say just doesn't sound right for 2016.  The more I read your letter, the more it sounds to me like your doc must be talking about Opdivo or Keytruda.  I would double check on this, and if not, I would get a second opinion.   Good luck.  Ken

Hi–I don't know where you are located or who you are seeing, but from my experience with stage 4, I would try to go to a major (university) cancer center.  The docs at the major centers are usually much more creative and aggressive than ones at your local cancer center.   I don't know exactly what is currently approved for stage III,  but if you can get it, either of the PD-1 drugs, Opdivo (Nivolumab) or Keytruda (Pembrolizumab), is much more effective than Yervoy (Ipilimumab), and the combo  is the most effective, albeit with the most side effects.   There are always exceptions, but generally speaking, the PD-1 drugs have far fewer side effects than Yervoy and have a much greater response rate.  I am surprised that your doc is talking about a 2 year program for Yervoy–usually people don't tolerate more than 4 doses, and I didn't think anyone could get 10 mg of Yervoy anymore–I know that was done in phase one trials, but the accepted dose is 3 mg.     What I am hearing you say just doesn't sound right for 2016.  The more I read your letter, the more it sounds to me like your doc must be talking about Opdivo or Keytruda.  I would double check on this, and if not, I would get a second opinion.   Good luck.  Ken

Hi–I don't know where you are located or who you are seeing, but from my experience with stage 4, I would try to go to a major (university) cancer center.  The docs at the major centers are usually much more creative and aggressive than ones at your local cancer center.   I don't know exactly what is currently approved for stage III,  but if you can get it, either of the PD-1 drugs, Opdivo (Nivolumab) or Keytruda (Pembrolizumab), is much more effective than Yervoy (Ipilimumab), and the combo  is the most effective, albeit with the most side effects.   There are always exceptions, but generally speaking, the PD-1 drugs have far fewer side effects than Yervoy and have a much greater response rate.  I am surprised that your doc is talking about a 2 year program for Yervoy–usually people don't tolerate more than 4 doses, and I didn't think anyone could get 10 mg of Yervoy anymore–I know that was done in phase one trials, but the accepted dose is 3 mg.     What I am hearing you say just doesn't sound right for 2016.  The more I read your letter, the more it sounds to me like your doc must be talking about Opdivo or Keytruda.  I would double check on this, and if not, I would get a second opinion.   Good luck.  Ken

Hi Maria–I had four infusions of nivo+ipi in early 2014 on a clinical trial and had severe side effects which were treated with large and ongoing doses of prednisone.  With me, the prednisone resulted in muscle loss, and a certain amount of bone loss (osteopenia).    Some people gain a lot of weight on them, but I didn't.   It's important to excercise as much as you can, especially weight bearing exercises, and make sure you are getting plenty of calcium, magnesium, vit D etc. for your bones.  At some point in the future you may want to have a bone density scan (no radiation) done.

Hopefully, you will get off of the prednisone soon.   My last bout of T cell rampage was about 3 months after my last infusion.    Large doses of prednison also suppresses the immune system, which seems ironic, since you want your immune system killing the cancer, but from what I understand, the docs don't believe that it affects the efficacy of the treatment.  In my case, my T cells infiltrated lots of different places, and neither my thyroid nor my adrenal glands work anymore, so I am on replacement synthroid and hydrocortisone, and I'm doing pretty well.  

Good luck,  Ken

Hi Maria–I had four infusions of nivo+ipi in early 2014 on a clinical trial and had severe side effects which were treated with large and ongoing doses of prednisone.  With me, the prednisone resulted in muscle loss, and a certain amount of bone loss (osteopenia).    Some people gain a lot of weight on them, but I didn't.   It's important to excercise as much as you can, especially weight bearing exercises, and make sure you are getting plenty of calcium, magnesium, vit D etc. for your bones.  At some point in the future you may want to have a bone density scan (no radiation) done.

Hopefully, you will get off of the prednisone soon.   My last bout of T cell rampage was about 3 months after my last infusion.    Large doses of prednison also suppresses the immune system, which seems ironic, since you want your immune system killing the cancer, but from what I understand, the docs don't believe that it affects the efficacy of the treatment.  In my case, my T cells infiltrated lots of different places, and neither my thyroid nor my adrenal glands work anymore, so I am on replacement synthroid and hydrocortisone, and I'm doing pretty well.  

Good luck,  Ken

Hi Maria–I had four infusions of nivo+ipi in early 2014 on a clinical trial and had severe side effects which were treated with large and ongoing doses of prednisone.  With me, the prednisone resulted in muscle loss, and a certain amount of bone loss (osteopenia).    Some people gain a lot of weight on them, but I didn't.   It's important to excercise as much as you can, especially weight bearing exercises, and make sure you are getting plenty of calcium, magnesium, vit D etc. for your bones.  At some point in the future you may want to have a bone density scan (no radiation) done.

Hopefully, you will get off of the prednisone soon.   My last bout of T cell rampage was about 3 months after my last infusion.    Large doses of prednison also suppresses the immune system, which seems ironic, since you want your immune system killing the cancer, but from what I understand, the docs don't believe that it affects the efficacy of the treatment.  In my case, my T cells infiltrated lots of different places, and neither my thyroid nor my adrenal glands work anymore, so I am on replacement synthroid and hydrocortisone, and I'm doing pretty well.  

Good luck,  Ken

Wow, I didn't realize that they are using 10 mg ipi for stage 3.  Seems odd to me, since up until the PD-1 drugs were approved, 3 mg was used for stage 4.  Having been through stage 4, and having had the combo of ipi and nivo in a clinical trial, and talking with a lot of docs about both medications, I am very biased towards the PD-1 drugs.

 I'm sorry for any misinformation I may have given.  

Anyway, try not to be too scared.  I always looked forward to the infusions, and actually really liked when the medicine was going in, knowing that there was a very good likelihood they would be enabling my immune system to kill the cancer.   But make sure to report any of the listed side effects to your doc right away, because they can be dangerous if not treated promptly.   Sometimes ipi (yervoy) has been stopped after one or two infusions because of the side effects, and just the one or two treatments have been very effective.

The combo of ipi/nivo worked so well in stage 4 trials, both phase 2 and 3 trials, that it is now approved for stage 4.  Best of luck, Ken

Wow, I didn't realize that they are using 10 mg ipi for stage 3.  Seems odd to me, since up until the PD-1 drugs were approved, 3 mg was used for stage 4.  Having been through stage 4, and having had the combo of ipi and nivo in a clinical trial, and talking with a lot of docs about both medications, I am very biased towards the PD-1 drugs.

 I'm sorry for any misinformation I may have given.  

Anyway, try not to be too scared.  I always looked forward to the infusions, and actually really liked when the medicine was going in, knowing that there was a very good likelihood they would be enabling my immune system to kill the cancer.   But make sure to report any of the listed side effects to your doc right away, because they can be dangerous if not treated promptly.   Sometimes ipi (yervoy) has been stopped after one or two infusions because of the side effects, and just the one or two treatments have been very effective.

The combo of ipi/nivo worked so well in stage 4 trials, both phase 2 and 3 trials, that it is now approved for stage 4.  Best of luck, Ken

Wow, I didn't realize that they are using 10 mg ipi for stage 3.  Seems odd to me, since up until the PD-1 drugs were approved, 3 mg was used for stage 4.  Having been through stage 4, and having had the combo of ipi and nivo in a clinical trial, and talking with a lot of docs about both medications, I am very biased towards the PD-1 drugs.

 I'm sorry for any misinformation I may have given.  

Anyway, try not to be too scared.  I always looked forward to the infusions, and actually really liked when the medicine was going in, knowing that there was a very good likelihood they would be enabling my immune system to kill the cancer.   But make sure to report any of the listed side effects to your doc right away, because they can be dangerous if not treated promptly.   Sometimes ipi (yervoy) has been stopped after one or two infusions because of the side effects, and just the one or two treatments have been very effective.

The combo of ipi/nivo worked so well in stage 4 trials, both phase 2 and 3 trials, that it is now approved for stage 4.  Best of luck, Ken