› Forums › General Melanoma Community › Itch and rash reaction with Ipi
- This topic has 18 replies, 4 voices, and was last updated 10 years, 9 months ago by
mark1101.
- Post
-
- August 19, 2013 at 10:58 pm
I am in the Ipi trial for Stage III. I completed my infusion treatments on May 14 and am starting maintenance treatments this coming Monday, August 26. I started experiencing a rash and itching a week after my second infusion. We managed it with Prednisone. Other than a few days prior to each infusion I have been taking Prednisone almost continuously since mid-April. As of today, the itch and rash have cleared up and I am off Prednisone. Wondering what I might expect after the maintenance treatment on Monday. I have two questions regarding all of th
I am in the Ipi trial for Stage III. I completed my infusion treatments on May 14 and am starting maintenance treatments this coming Monday, August 26. I started experiencing a rash and itching a week after my second infusion. We managed it with Prednisone. Other than a few days prior to each infusion I have been taking Prednisone almost continuously since mid-April. As of today, the itch and rash have cleared up and I am off Prednisone. Wondering what I might expect after the maintenance treatment on Monday. I have two questions regarding all of this:
1. Does the tendency to have the itching and rash reaction abate at all as treatment goes on…ie will I become less sensitive?
2. What long-term effects of Prednisone should I be aware of, and are there alternatives to Prednisone with less inherent toxicity?
My good news is that my last PET was on August 12 and I have been NED now since my last surgery at the end of January.
- Replies
-
-
- August 20, 2013 at 12:32 am
I can't answer your questions because I am in the downslide of my ipi. I itch constantly but I don't have a rash and I just finished my 3rd infusion. I was wondering though if ipi made you NED and how soon it started to work on your mets to make you NED.
Sorry I can't help you but maybe you could give me some hope. 🙂
All my best and congratulations on the NED status!!
Denise
-
- August 20, 2013 at 12:32 am
I can't answer your questions because I am in the downslide of my ipi. I itch constantly but I don't have a rash and I just finished my 3rd infusion. I was wondering though if ipi made you NED and how soon it started to work on your mets to make you NED.
Sorry I can't help you but maybe you could give me some hope. 🙂
All my best and congratulations on the NED status!!
Denise
-
- August 20, 2013 at 12:32 am
I can't answer your questions because I am in the downslide of my ipi. I itch constantly but I don't have a rash and I just finished my 3rd infusion. I was wondering though if ipi made you NED and how soon it started to work on your mets to make you NED.
Sorry I can't help you but maybe you could give me some hope. 🙂
All my best and congratulations on the NED status!!
Denise
-
- August 20, 2013 at 2:38 am
Hi,
I just received my final (4th) dose of Ipi on Friday, as treatment for stage IV, not as part of a trial. Is your trial dose the labled 3mg/kg dose or the higher 10 mg/kg dose they've been using in so many trials lately? The higher dose is associated with more/more severe side effects.
I don't have itching or rash as part of my list of side effects and I'm not on pred, but my understanding from talking with my doctors is that whatever side effects you get, tend to happen each time. My guess is that you'll have the itching with each dose you recieve. The good news is that with maintanance doses, they're at least less frequent so the side effects should only be for a short time.
As to your question about pred: the short answer is yes, there are long term effects that can happen- including liver damage and some others (your doctor can give you a full list). These long term side effects generally only happen when a person is on significant doses of pred for very long periods of time. I don't know what your dose is, but I suspect that it's as low as your doctor can make it to still have the necessary effect and I'm also guessing that you're only on it intermittantly between doses. Since your doses will be less frequent, your pred will be less frequent. Your doctor will still be monitoring you for any long term side effects though. To my knowledge there really isn't any alternative. There are other steroids that have the same action in the body as pred, but they are typically much more potent (and they have the same side effects) and more expensive, which is why pred is usually the first one doctors go for.
I'm glad to hear you're NED- sincerely hope you stay that way
-Eva
-
- August 20, 2013 at 2:38 am
Hi,
I just received my final (4th) dose of Ipi on Friday, as treatment for stage IV, not as part of a trial. Is your trial dose the labled 3mg/kg dose or the higher 10 mg/kg dose they've been using in so many trials lately? The higher dose is associated with more/more severe side effects.
I don't have itching or rash as part of my list of side effects and I'm not on pred, but my understanding from talking with my doctors is that whatever side effects you get, tend to happen each time. My guess is that you'll have the itching with each dose you recieve. The good news is that with maintanance doses, they're at least less frequent so the side effects should only be for a short time.
As to your question about pred: the short answer is yes, there are long term effects that can happen- including liver damage and some others (your doctor can give you a full list). These long term side effects generally only happen when a person is on significant doses of pred for very long periods of time. I don't know what your dose is, but I suspect that it's as low as your doctor can make it to still have the necessary effect and I'm also guessing that you're only on it intermittantly between doses. Since your doses will be less frequent, your pred will be less frequent. Your doctor will still be monitoring you for any long term side effects though. To my knowledge there really isn't any alternative. There are other steroids that have the same action in the body as pred, but they are typically much more potent (and they have the same side effects) and more expensive, which is why pred is usually the first one doctors go for.
I'm glad to hear you're NED- sincerely hope you stay that way
-Eva
-
- August 20, 2013 at 2:38 am
Hi,
I just received my final (4th) dose of Ipi on Friday, as treatment for stage IV, not as part of a trial. Is your trial dose the labled 3mg/kg dose or the higher 10 mg/kg dose they've been using in so many trials lately? The higher dose is associated with more/more severe side effects.
I don't have itching or rash as part of my list of side effects and I'm not on pred, but my understanding from talking with my doctors is that whatever side effects you get, tend to happen each time. My guess is that you'll have the itching with each dose you recieve. The good news is that with maintanance doses, they're at least less frequent so the side effects should only be for a short time.
As to your question about pred: the short answer is yes, there are long term effects that can happen- including liver damage and some others (your doctor can give you a full list). These long term side effects generally only happen when a person is on significant doses of pred for very long periods of time. I don't know what your dose is, but I suspect that it's as low as your doctor can make it to still have the necessary effect and I'm also guessing that you're only on it intermittantly between doses. Since your doses will be less frequent, your pred will be less frequent. Your doctor will still be monitoring you for any long term side effects though. To my knowledge there really isn't any alternative. There are other steroids that have the same action in the body as pred, but they are typically much more potent (and they have the same side effects) and more expensive, which is why pred is usually the first one doctors go for.
I'm glad to hear you're NED- sincerely hope you stay that way
-Eva
-
- August 20, 2013 at 12:46 pm
Hi Mark,
My husband is also in an Ipi Clinical Trial and has been since March 2011. He is on the 10mg/kg and also does self injections of GM-CSF on 14 days and off for 7. He still has the itching but not as much rash and he has been on it for over 2 years with the first 12 weeks he got a dose every 3 and now he gets a maintenance dose every 12 weeks while still doing the GM-CSF for the 14/7 combo. He also takes a prednisone as his body quit manufacturing its own but he only takes 7.5 a day. He has been NED for about 10 months now as he was stage IV.
He also got the white eyebrows and beard and has some vitiligo on the face and neck area. His doctor was very happy as he said it was a sign it was working and it truly did. If you want to read more check out his profile.
We are also in Ohio not far from you and we go to University Hospital in Cleveland for his treatments. Good luck.
Judy (loving wife of Gene – Stage IV and now NED)
-
- August 20, 2013 at 12:46 pm
Hi Mark,
My husband is also in an Ipi Clinical Trial and has been since March 2011. He is on the 10mg/kg and also does self injections of GM-CSF on 14 days and off for 7. He still has the itching but not as much rash and he has been on it for over 2 years with the first 12 weeks he got a dose every 3 and now he gets a maintenance dose every 12 weeks while still doing the GM-CSF for the 14/7 combo. He also takes a prednisone as his body quit manufacturing its own but he only takes 7.5 a day. He has been NED for about 10 months now as he was stage IV.
He also got the white eyebrows and beard and has some vitiligo on the face and neck area. His doctor was very happy as he said it was a sign it was working and it truly did. If you want to read more check out his profile.
We are also in Ohio not far from you and we go to University Hospital in Cleveland for his treatments. Good luck.
Judy (loving wife of Gene – Stage IV and now NED)
-
- August 20, 2013 at 12:46 pm
Hi Mark,
My husband is also in an Ipi Clinical Trial and has been since March 2011. He is on the 10mg/kg and also does self injections of GM-CSF on 14 days and off for 7. He still has the itching but not as much rash and he has been on it for over 2 years with the first 12 weeks he got a dose every 3 and now he gets a maintenance dose every 12 weeks while still doing the GM-CSF for the 14/7 combo. He also takes a prednisone as his body quit manufacturing its own but he only takes 7.5 a day. He has been NED for about 10 months now as he was stage IV.
He also got the white eyebrows and beard and has some vitiligo on the face and neck area. His doctor was very happy as he said it was a sign it was working and it truly did. If you want to read more check out his profile.
We are also in Ohio not far from you and we go to University Hospital in Cleveland for his treatments. Good luck.
Judy (loving wife of Gene – Stage IV and now NED)
-
- August 21, 2013 at 2:06 pm
Judy, So glad to see the NED at the end of your post. Looks like it has been a tough battle for you two and you deserve a victory.
I am starting maintenance on August 26 and will continue to May 5 next year every 12 weeks is the current plan.
Hoping you continue to have success in treatment.
We go to Warren from time to time for our grand daughter's dance recitals so, yes we are pretty close together.
Mark
-
- August 21, 2013 at 1:46 pm
Denise, my calculation is that I have been NED since my lymphadenectomy. I know my left axillary nodes were involved going in, they were removed, the PET scan and MRI were clear after that and continue to be clear up to today. If I have any melanoma cells that passed those nodes before the surgery, the Ipi has either killed them or discouraged them from metastasizing. So did the Ipi help? That is the nature of melanoma I'm told.
So if your treatment protocol is the same as mine, you are 3/4's through your infusion phase which is a good thing. How have you been tolerating the Ipi? You would have a followup PET scan coming up in a few weeks to check progress with the Ipi. I have talked to a number of people who have reported a bit of a delayed reaction to Ipi. It took them several weeks before a reduction in tumor size was noted, but it did occur eventually. So be patient. That's the hardest thing with this disease…lots of waiting. I will keep you in my prayers.
Mark
-
- August 21, 2013 at 1:46 pm
Denise, my calculation is that I have been NED since my lymphadenectomy. I know my left axillary nodes were involved going in, they were removed, the PET scan and MRI were clear after that and continue to be clear up to today. If I have any melanoma cells that passed those nodes before the surgery, the Ipi has either killed them or discouraged them from metastasizing. So did the Ipi help? That is the nature of melanoma I'm told.
So if your treatment protocol is the same as mine, you are 3/4's through your infusion phase which is a good thing. How have you been tolerating the Ipi? You would have a followup PET scan coming up in a few weeks to check progress with the Ipi. I have talked to a number of people who have reported a bit of a delayed reaction to Ipi. It took them several weeks before a reduction in tumor size was noted, but it did occur eventually. So be patient. That's the hardest thing with this disease…lots of waiting. I will keep you in my prayers.
Mark
-
- August 21, 2013 at 1:46 pm
Denise, my calculation is that I have been NED since my lymphadenectomy. I know my left axillary nodes were involved going in, they were removed, the PET scan and MRI were clear after that and continue to be clear up to today. If I have any melanoma cells that passed those nodes before the surgery, the Ipi has either killed them or discouraged them from metastasizing. So did the Ipi help? That is the nature of melanoma I'm told.
So if your treatment protocol is the same as mine, you are 3/4's through your infusion phase which is a good thing. How have you been tolerating the Ipi? You would have a followup PET scan coming up in a few weeks to check progress with the Ipi. I have talked to a number of people who have reported a bit of a delayed reaction to Ipi. It took them several weeks before a reduction in tumor size was noted, but it did occur eventually. So be patient. That's the hardest thing with this disease…lots of waiting. I will keep you in my prayers.
Mark
-
- August 21, 2013 at 1:53 pm
Hi, Eva. I was in the 3mg/kg arm of the trial and the side effects have been minimal.
Steroids are wonder drugs in some ways, but do carry a lot of potential problems. I haven't gone over 100mg daily and that only for a few days before tapering. It's been a roller coaster for me…get a treatment, start itching, take prednisone, taper off prednisone in time for next treatment, start all over again. I was hoping I build a tolerance to theis particular effect of Ipi over time, but if I only have to deal with it for through a few maintenance treatments, I can live with it.
I am hoping your treatment goes as well as mine has so far.
Mark
-
- August 21, 2013 at 1:53 pm
Hi, Eva. I was in the 3mg/kg arm of the trial and the side effects have been minimal.
Steroids are wonder drugs in some ways, but do carry a lot of potential problems. I haven't gone over 100mg daily and that only for a few days before tapering. It's been a roller coaster for me…get a treatment, start itching, take prednisone, taper off prednisone in time for next treatment, start all over again. I was hoping I build a tolerance to theis particular effect of Ipi over time, but if I only have to deal with it for through a few maintenance treatments, I can live with it.
I am hoping your treatment goes as well as mine has so far.
Mark
-
- August 21, 2013 at 1:53 pm
Hi, Eva. I was in the 3mg/kg arm of the trial and the side effects have been minimal.
Steroids are wonder drugs in some ways, but do carry a lot of potential problems. I haven't gone over 100mg daily and that only for a few days before tapering. It's been a roller coaster for me…get a treatment, start itching, take prednisone, taper off prednisone in time for next treatment, start all over again. I was hoping I build a tolerance to theis particular effect of Ipi over time, but if I only have to deal with it for through a few maintenance treatments, I can live with it.
I am hoping your treatment goes as well as mine has so far.
Mark
-
- August 21, 2013 at 2:06 pm
Judy, So glad to see the NED at the end of your post. Looks like it has been a tough battle for you two and you deserve a victory.
I am starting maintenance on August 26 and will continue to May 5 next year every 12 weeks is the current plan.
Hoping you continue to have success in treatment.
We go to Warren from time to time for our grand daughter's dance recitals so, yes we are pretty close together.
Mark
-
- August 21, 2013 at 2:06 pm
Judy, So glad to see the NED at the end of your post. Looks like it has been a tough battle for you two and you deserve a victory.
I am starting maintenance on August 26 and will continue to May 5 next year every 12 weeks is the current plan.
Hoping you continue to have success in treatment.
We go to Warren from time to time for our grand daughter's dance recitals so, yes we are pretty close together.
Mark
-
- You must be logged in to reply to this topic.