› Forums › General Melanoma Community › prednisone after 3rd ipi infusion
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Bleeds.
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- August 13, 2014 at 10:13 pm
Next week I was to have a 4th infusion of Yervoy. Diarrhea has become progressively worse, so I have been taken off Yervoy and put on prednisone. Just wondering what side effects of prednisone any of you have experienced. Also, what happens if this doesn' t stop the diarrhea? Then I wonder if there is a possibility that I could still have the last infusion at some point? I know only a small percentage of us will be Ipi responders, but is it still possible now that I will miss the last dose? Disappointed….:(…..also nervous because I know this colitis can get serious….Thank you for the help…..I wish blessings on all of you.
- Replies
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- August 14, 2014 at 1:18 am
Nell,
I don't think it's uncommon at all for infusions to be delayed so I think there is still a good chance you can get your fourth infusion. I think some of it will be determined as to how you respond to the prednisone. I also was put on prednisone after my third infusion but mine was due to hyperphysitis. I was on 60mg a day for a couple weeks. I really didn't have too many side effects other than difficulty sleeping. I think that is a pretty common side effect. I think some experience water retension but I'm not sure at what dosage level that kicks in at. Have you seen any of the post on here about what to eat to help the diarrhea? I know there's been a couple post on that. Maybe someone can chime in with some advice.
Brian
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- August 14, 2014 at 1:18 am
Nell,
I don't think it's uncommon at all for infusions to be delayed so I think there is still a good chance you can get your fourth infusion. I think some of it will be determined as to how you respond to the prednisone. I also was put on prednisone after my third infusion but mine was due to hyperphysitis. I was on 60mg a day for a couple weeks. I really didn't have too many side effects other than difficulty sleeping. I think that is a pretty common side effect. I think some experience water retension but I'm not sure at what dosage level that kicks in at. Have you seen any of the post on here about what to eat to help the diarrhea? I know there's been a couple post on that. Maybe someone can chime in with some advice.
Brian
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- August 14, 2014 at 3:08 am
Neil
My yervoy 3 mg/K was stopped after the second infusion because of diarrhea that did not respond to the prednisone regimen (120 mg/day reduced 20 mg every other day) that was initiated after a colonoscopy confirmed ipi induced colitis. Remember this: MY RESPONSE WAS EXTREME. I am still in the clinical trial [E1609] even though I had only 2 infusions of yervoy. I have been NED since [June 6, 2013] the removal of the metastatic melanoma in my left parotid gland. I was hospitalized October 2013 so I could receive large doses of prednisone intravenously and 2 infusions of infleximab. I did have some trouble sleeping with the large doses of prednisone in the beginning but fatigue won out. I gradually reduced my prednisone over the next three months. As of February I have been on 5 mg prednisone and 0.1 mg fludrocorticone acetate daily. A more detailed description of my hospital stay, now affectionately referred to as Oktoberfest, is in previous postings. I followed the colitis diet, no dairy, caffeine, carbonated beverages, alcohol, beans, nuts, nor raw vegetables on my discharge from the hospital in November 2013. I resumed my usual diet this July. I was probably over cautious but that's okay. Check Google for colitis diets. The main thing to remember is do not hesitate to contact your oncologist ASAP if/when the diarrhea gets worse or doesn't subside. Good luck!!
p.s. Thank you BrianP for all the information, encouragement, and support you give us!
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- August 14, 2014 at 3:08 am
Neil
My yervoy 3 mg/K was stopped after the second infusion because of diarrhea that did not respond to the prednisone regimen (120 mg/day reduced 20 mg every other day) that was initiated after a colonoscopy confirmed ipi induced colitis. Remember this: MY RESPONSE WAS EXTREME. I am still in the clinical trial [E1609] even though I had only 2 infusions of yervoy. I have been NED since [June 6, 2013] the removal of the metastatic melanoma in my left parotid gland. I was hospitalized October 2013 so I could receive large doses of prednisone intravenously and 2 infusions of infleximab. I did have some trouble sleeping with the large doses of prednisone in the beginning but fatigue won out. I gradually reduced my prednisone over the next three months. As of February I have been on 5 mg prednisone and 0.1 mg fludrocorticone acetate daily. A more detailed description of my hospital stay, now affectionately referred to as Oktoberfest, is in previous postings. I followed the colitis diet, no dairy, caffeine, carbonated beverages, alcohol, beans, nuts, nor raw vegetables on my discharge from the hospital in November 2013. I resumed my usual diet this July. I was probably over cautious but that's okay. Check Google for colitis diets. The main thing to remember is do not hesitate to contact your oncologist ASAP if/when the diarrhea gets worse or doesn't subside. Good luck!!
p.s. Thank you BrianP for all the information, encouragement, and support you give us!
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- August 14, 2014 at 3:08 am
Neil
My yervoy 3 mg/K was stopped after the second infusion because of diarrhea that did not respond to the prednisone regimen (120 mg/day reduced 20 mg every other day) that was initiated after a colonoscopy confirmed ipi induced colitis. Remember this: MY RESPONSE WAS EXTREME. I am still in the clinical trial [E1609] even though I had only 2 infusions of yervoy. I have been NED since [June 6, 2013] the removal of the metastatic melanoma in my left parotid gland. I was hospitalized October 2013 so I could receive large doses of prednisone intravenously and 2 infusions of infleximab. I did have some trouble sleeping with the large doses of prednisone in the beginning but fatigue won out. I gradually reduced my prednisone over the next three months. As of February I have been on 5 mg prednisone and 0.1 mg fludrocorticone acetate daily. A more detailed description of my hospital stay, now affectionately referred to as Oktoberfest, is in previous postings. I followed the colitis diet, no dairy, caffeine, carbonated beverages, alcohol, beans, nuts, nor raw vegetables on my discharge from the hospital in November 2013. I resumed my usual diet this July. I was probably over cautious but that's okay. Check Google for colitis diets. The main thing to remember is do not hesitate to contact your oncologist ASAP if/when the diarrhea gets worse or doesn't subside. Good luck!!
p.s. Thank you BrianP for all the information, encouragement, and support you give us!
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- August 14, 2014 at 1:18 am
Nell,
I don't think it's uncommon at all for infusions to be delayed so I think there is still a good chance you can get your fourth infusion. I think some of it will be determined as to how you respond to the prednisone. I also was put on prednisone after my third infusion but mine was due to hyperphysitis. I was on 60mg a day for a couple weeks. I really didn't have too many side effects other than difficulty sleeping. I think that is a pretty common side effect. I think some experience water retension but I'm not sure at what dosage level that kicks in at. Have you seen any of the post on here about what to eat to help the diarrhea? I know there's been a couple post on that. Maybe someone can chime in with some advice.
Brian
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- August 14, 2014 at 3:28 am
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- August 14, 2014 at 3:28 am
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- August 14, 2014 at 3:28 am
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- August 14, 2014 at 3:51 am
My husband is 5 months past his last ipi infusion of 10 mg.. While being treated, he had issues with milk, spicey foods, popcorn, and whole wheat breads. He can tolerate everything now but whole wheat bread and still uses soy milk. He never needed steroids but he took immodium after 3 stools. He ate a lot of white rice and chicken as well as applesauce and bananas during treatment. He was able to eat salad. White rice really helped on those bad days
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- August 14, 2014 at 3:51 am
My husband is 5 months past his last ipi infusion of 10 mg.. While being treated, he had issues with milk, spicey foods, popcorn, and whole wheat breads. He can tolerate everything now but whole wheat bread and still uses soy milk. He never needed steroids but he took immodium after 3 stools. He ate a lot of white rice and chicken as well as applesauce and bananas during treatment. He was able to eat salad. White rice really helped on those bad days
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- August 14, 2014 at 3:51 am
My husband is 5 months past his last ipi infusion of 10 mg.. While being treated, he had issues with milk, spicey foods, popcorn, and whole wheat breads. He can tolerate everything now but whole wheat bread and still uses soy milk. He never needed steroids but he took immodium after 3 stools. He ate a lot of white rice and chicken as well as applesauce and bananas during treatment. He was able to eat salad. White rice really helped on those bad days
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- August 14, 2014 at 1:48 pm
Hi Nell,
I had two treatments of Yervoy which had to be stopped due to bad Dia. I was put on 60mg of Pred which did nothing for two weeks. I then was put on 120mg for three days and then started tapering. Still nothing. I then had an infusion of Infliximab (Remicade) which is usually used for Crohn's disease but basically the same symptoms of what I was going through. Started feeling better the second day and by the fourth had control of the bowels.
I started a fast taper of the Pred to get off of it as fast as I could (make sure you confirm with your doc on this) so I could get on the expanded trial of Merck’s new anti PD1 drug. I have had three treatments of it and feel fine. Fatigue!!!! Having scans in 4 weeks so we shall see. But that’s it. I would ask your Oncologist about the new Merck drug. Are you BRAF positive? I was told from my Onc. that once you start Pred then you’re pretty much finished with Yervoy. Ask your doc!
As far as side effects of the Pred, I just had trouble sleeping as it pumps you up. It was kind of nice during the day to have the extra energy but at night I was buzzing a little here and there. Ended up getting up and stretching and semi yoga for an hour each night and then got another 4 hours of sleep in. Once I dropped down to 40mg, it was better.
Good luck and hopefully you can jump on the anti PD1 med… Gary
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- August 15, 2014 at 9:52 pm
Thank you Gary for your response. I will be watching to hear of your scan results. I hope for victory! I get the impression from my doctor's office that I am done with yervoy. I hope to get off steroids soon because my doctor wants to put me on PD-1….. I am BRAF – …..Blessings to you! Nell
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- August 15, 2014 at 9:52 pm
Thank you Gary for your response. I will be watching to hear of your scan results. I hope for victory! I get the impression from my doctor's office that I am done with yervoy. I hope to get off steroids soon because my doctor wants to put me on PD-1….. I am BRAF – …..Blessings to you! Nell
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- August 15, 2014 at 9:52 pm
Thank you Gary for your response. I will be watching to hear of your scan results. I hope for victory! I get the impression from my doctor's office that I am done with yervoy. I hope to get off steroids soon because my doctor wants to put me on PD-1….. I am BRAF – …..Blessings to you! Nell
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- August 20, 2014 at 11:08 pm
Hi Nell,
I am sorry to hear your off IPI and won't be able to have fourth injection. It is always good to complete the treatment and give it a chance. But then again, only if you can complete the treatments. I've been on 5 different treatment plans and failed them all. I also have CLL and went through chemo last November. Luckily, hehe, I did as that's when they found the Mel! Actually, something worked as my blood counts are great.
Have you had scans yet? You will have a new set of scans before Merck drug as a baseline and then you can see if IPI was working. There are some stats out there on some response of the IPI and better results with Merck. Below is a link to Dr. Ribas with a lot of great articles and videos on the subject. Most of it was way over my head!
http://www.cancer.ucla.edu/index.aspx?page=645&recordid=214
Hope you are winding down on Pred and gearing up for a better treatment plan with the Merck.
Good luck with all,
Gary
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- August 21, 2014 at 3:58 am
Thank you! I will check out the Ribas link. Found out yesterday that I am BRAF + after all…..The first test results 2 years ago said negative… apparently, the mutation I have is a rare one. Will be tapering off prednisone…then scans….then decisions. Dont know if pd-1 will be the choice for me because of this new result….I am grateful that there are meds we can try….best of luck with your scans.
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- August 21, 2014 at 3:58 am
Thank you! I will check out the Ribas link. Found out yesterday that I am BRAF + after all…..The first test results 2 years ago said negative… apparently, the mutation I have is a rare one. Will be tapering off prednisone…then scans….then decisions. Dont know if pd-1 will be the choice for me because of this new result….I am grateful that there are meds we can try….best of luck with your scans.
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- August 21, 2014 at 3:58 am
Thank you! I will check out the Ribas link. Found out yesterday that I am BRAF + after all…..The first test results 2 years ago said negative… apparently, the mutation I have is a rare one. Will be tapering off prednisone…then scans….then decisions. Dont know if pd-1 will be the choice for me because of this new result….I am grateful that there are meds we can try….best of luck with your scans.
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- August 20, 2014 at 11:08 pm
Hi Nell,
I am sorry to hear your off IPI and won't be able to have fourth injection. It is always good to complete the treatment and give it a chance. But then again, only if you can complete the treatments. I've been on 5 different treatment plans and failed them all. I also have CLL and went through chemo last November. Luckily, hehe, I did as that's when they found the Mel! Actually, something worked as my blood counts are great.
Have you had scans yet? You will have a new set of scans before Merck drug as a baseline and then you can see if IPI was working. There are some stats out there on some response of the IPI and better results with Merck. Below is a link to Dr. Ribas with a lot of great articles and videos on the subject. Most of it was way over my head!
http://www.cancer.ucla.edu/index.aspx?page=645&recordid=214
Hope you are winding down on Pred and gearing up for a better treatment plan with the Merck.
Good luck with all,
Gary
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- August 20, 2014 at 11:08 pm
Hi Nell,
I am sorry to hear your off IPI and won't be able to have fourth injection. It is always good to complete the treatment and give it a chance. But then again, only if you can complete the treatments. I've been on 5 different treatment plans and failed them all. I also have CLL and went through chemo last November. Luckily, hehe, I did as that's when they found the Mel! Actually, something worked as my blood counts are great.
Have you had scans yet? You will have a new set of scans before Merck drug as a baseline and then you can see if IPI was working. There are some stats out there on some response of the IPI and better results with Merck. Below is a link to Dr. Ribas with a lot of great articles and videos on the subject. Most of it was way over my head!
http://www.cancer.ucla.edu/index.aspx?page=645&recordid=214
Hope you are winding down on Pred and gearing up for a better treatment plan with the Merck.
Good luck with all,
Gary
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- August 14, 2014 at 1:48 pm
Hi Nell,
I had two treatments of Yervoy which had to be stopped due to bad Dia. I was put on 60mg of Pred which did nothing for two weeks. I then was put on 120mg for three days and then started tapering. Still nothing. I then had an infusion of Infliximab (Remicade) which is usually used for Crohn's disease but basically the same symptoms of what I was going through. Started feeling better the second day and by the fourth had control of the bowels.
I started a fast taper of the Pred to get off of it as fast as I could (make sure you confirm with your doc on this) so I could get on the expanded trial of Merck’s new anti PD1 drug. I have had three treatments of it and feel fine. Fatigue!!!! Having scans in 4 weeks so we shall see. But that’s it. I would ask your Oncologist about the new Merck drug. Are you BRAF positive? I was told from my Onc. that once you start Pred then you’re pretty much finished with Yervoy. Ask your doc!
As far as side effects of the Pred, I just had trouble sleeping as it pumps you up. It was kind of nice during the day to have the extra energy but at night I was buzzing a little here and there. Ended up getting up and stretching and semi yoga for an hour each night and then got another 4 hours of sleep in. Once I dropped down to 40mg, it was better.
Good luck and hopefully you can jump on the anti PD1 med… Gary
-
- August 14, 2014 at 1:48 pm
Hi Nell,
I had two treatments of Yervoy which had to be stopped due to bad Dia. I was put on 60mg of Pred which did nothing for two weeks. I then was put on 120mg for three days and then started tapering. Still nothing. I then had an infusion of Infliximab (Remicade) which is usually used for Crohn's disease but basically the same symptoms of what I was going through. Started feeling better the second day and by the fourth had control of the bowels.
I started a fast taper of the Pred to get off of it as fast as I could (make sure you confirm with your doc on this) so I could get on the expanded trial of Merck’s new anti PD1 drug. I have had three treatments of it and feel fine. Fatigue!!!! Having scans in 4 weeks so we shall see. But that’s it. I would ask your Oncologist about the new Merck drug. Are you BRAF positive? I was told from my Onc. that once you start Pred then you’re pretty much finished with Yervoy. Ask your doc!
As far as side effects of the Pred, I just had trouble sleeping as it pumps you up. It was kind of nice during the day to have the extra energy but at night I was buzzing a little here and there. Ended up getting up and stretching and semi yoga for an hour each night and then got another 4 hours of sleep in. Once I dropped down to 40mg, it was better.
Good luck and hopefully you can jump on the anti PD1 med… Gary
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- August 14, 2014 at 1:57 pm
Nell, a few notes:
1. I developed ipi-related colitis (moderate) after the 3rd infusion. I didn't receive the 4th infusion. Not a doctor, but I don't believe that colitis can be diagnosed without a colonoscopy. I've seen some folks here say that colitis can be diagnosed with a CT scan. That is probably true for severe, but not moderate, colitis. I had scans within days of my colonoscopy and there were no issues (from a CT scan standpoint) with my colon.
2. Moderate colitis can be managed with prednisone. Your max dosage depends on your weight. The IV version of prednisone (has another name) is very effective (I was able to receive this in my onc's office without hospitalization). In instances where colitis cannot be managed with prednisone, they move on to Remicade (a "bazooka" steroid). I resisted Remicade because folks aren't sure if it impacts the ipi response. I think folks are fairly comfortable that prednisone does not impact the ipi-response.
3. I remember reading at the time that patients who develop colitis have a slightly higher response rate to ipi (in a small study).
4. My primary side effects from prednisone were sleeplessness and sudden "gushing" nose bleeds (that would last for like 30 minutes at a time). If you Google prednisone side effects, they are all over the map. Like anything else, depends on the individual.
5. Challenging few weeks (ballpark 10 for me) managing through/tapering off prednisone, but manageable. E.g., I worked, etc.
6. While working/going out, I wore an adult diaper. Didn't ever need it, but I found it to have a psychological benefit. I also took Lomotil.
Good luck and I hope that you're an ipi-responder!
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- August 14, 2014 at 1:57 pm
Nell, a few notes:
1. I developed ipi-related colitis (moderate) after the 3rd infusion. I didn't receive the 4th infusion. Not a doctor, but I don't believe that colitis can be diagnosed without a colonoscopy. I've seen some folks here say that colitis can be diagnosed with a CT scan. That is probably true for severe, but not moderate, colitis. I had scans within days of my colonoscopy and there were no issues (from a CT scan standpoint) with my colon.
2. Moderate colitis can be managed with prednisone. Your max dosage depends on your weight. The IV version of prednisone (has another name) is very effective (I was able to receive this in my onc's office without hospitalization). In instances where colitis cannot be managed with prednisone, they move on to Remicade (a "bazooka" steroid). I resisted Remicade because folks aren't sure if it impacts the ipi response. I think folks are fairly comfortable that prednisone does not impact the ipi-response.
3. I remember reading at the time that patients who develop colitis have a slightly higher response rate to ipi (in a small study).
4. My primary side effects from prednisone were sleeplessness and sudden "gushing" nose bleeds (that would last for like 30 minutes at a time). If you Google prednisone side effects, they are all over the map. Like anything else, depends on the individual.
5. Challenging few weeks (ballpark 10 for me) managing through/tapering off prednisone, but manageable. E.g., I worked, etc.
6. While working/going out, I wore an adult diaper. Didn't ever need it, but I found it to have a psychological benefit. I also took Lomotil.
Good luck and I hope that you're an ipi-responder!
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- August 14, 2014 at 1:57 pm
Nell, a few notes:
1. I developed ipi-related colitis (moderate) after the 3rd infusion. I didn't receive the 4th infusion. Not a doctor, but I don't believe that colitis can be diagnosed without a colonoscopy. I've seen some folks here say that colitis can be diagnosed with a CT scan. That is probably true for severe, but not moderate, colitis. I had scans within days of my colonoscopy and there were no issues (from a CT scan standpoint) with my colon.
2. Moderate colitis can be managed with prednisone. Your max dosage depends on your weight. The IV version of prednisone (has another name) is very effective (I was able to receive this in my onc's office without hospitalization). In instances where colitis cannot be managed with prednisone, they move on to Remicade (a "bazooka" steroid). I resisted Remicade because folks aren't sure if it impacts the ipi response. I think folks are fairly comfortable that prednisone does not impact the ipi-response.
3. I remember reading at the time that patients who develop colitis have a slightly higher response rate to ipi (in a small study).
4. My primary side effects from prednisone were sleeplessness and sudden "gushing" nose bleeds (that would last for like 30 minutes at a time). If you Google prednisone side effects, they are all over the map. Like anything else, depends on the individual.
5. Challenging few weeks (ballpark 10 for me) managing through/tapering off prednisone, but manageable. E.g., I worked, etc.
6. While working/going out, I wore an adult diaper. Didn't ever need it, but I found it to have a psychological benefit. I also took Lomotil.
Good luck and I hope that you're an ipi-responder!
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- August 15, 2014 at 10:13 pm
Thank you for the help. I am glad to hear that ipi response may not be affected by pred. I was really wondering about that. I did not have a colonoscopy so it may be that my colon is just very irritated…They took me off anyway..I am responding to the pred. already after 3 days…..of course not normal yet and still bloated and weak….but a definite improvement. Bleeding seems to have stopped for the most part. Could having to stop ipi mess up our response? I see you had 3 infusions too……Blessings!
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- August 15, 2014 at 10:13 pm
Thank you for the help. I am glad to hear that ipi response may not be affected by pred. I was really wondering about that. I did not have a colonoscopy so it may be that my colon is just very irritated…They took me off anyway..I am responding to the pred. already after 3 days…..of course not normal yet and still bloated and weak….but a definite improvement. Bleeding seems to have stopped for the most part. Could having to stop ipi mess up our response? I see you had 3 infusions too……Blessings!
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- August 15, 2014 at 10:13 pm
Thank you for the help. I am glad to hear that ipi response may not be affected by pred. I was really wondering about that. I did not have a colonoscopy so it may be that my colon is just very irritated…They took me off anyway..I am responding to the pred. already after 3 days…..of course not normal yet and still bloated and weak….but a definite improvement. Bleeding seems to have stopped for the most part. Could having to stop ipi mess up our response? I see you had 3 infusions too……Blessings!
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- August 16, 2014 at 3:38 am
I was told diarrhea is an indication that the ipilimumab has kicked in and that the immune system has been activated. Bleeding diarrhea is serious. It's important to pay attention to the bleeding. Personally, I would hesitate about resuming ipilimumab without a prior colonoscopy. Ipi-induced colitis is reversible. It take time and following a cautious diet. Good luck!
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- August 16, 2014 at 3:38 am
I was told diarrhea is an indication that the ipilimumab has kicked in and that the immune system has been activated. Bleeding diarrhea is serious. It's important to pay attention to the bleeding. Personally, I would hesitate about resuming ipilimumab without a prior colonoscopy. Ipi-induced colitis is reversible. It take time and following a cautious diet. Good luck!
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- August 16, 2014 at 3:38 am
I was told diarrhea is an indication that the ipilimumab has kicked in and that the immune system has been activated. Bleeding diarrhea is serious. It's important to pay attention to the bleeding. Personally, I would hesitate about resuming ipilimumab without a prior colonoscopy. Ipi-induced colitis is reversible. It take time and following a cautious diet. Good luck!
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