› Forums › General Melanoma Community › Ippi #2 major Diarrhea problems
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yoopergirl.
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- March 15, 2012 at 9:48 pm
4 days before I was due to start Ippi infusion # 2.. I started to get some nasty diarrhea (well I finally learned to spell the word..LOL) I prayed that I could drive to OSU and get through the treatment without having a problem and I did. The next day,last Friday.. I had the start of really big time watery blow outs and was started on 20 mg of Prednisone..the diarrhea has not really abated very much.. it seems to come in waves.I take the Pred at 10am and for the most part I am usually pretty good most of the day and then start again at night.
4 days before I was due to start Ippi infusion # 2.. I started to get some nasty diarrhea (well I finally learned to spell the word..LOL) I prayed that I could drive to OSU and get through the treatment without having a problem and I did. The next day,last Friday.. I had the start of really big time watery blow outs and was started on 20 mg of Prednisone..the diarrhea has not really abated very much.. it seems to come in waves.I take the Pred at 10am and for the most part I am usually pretty good most of the day and then start again at night. Yesterday Dr Kendra had me come down to OSU to check me out. I ran the recommendation to use Endocort (thank you NY Karen) by Dr Wolchok at Sloan Kettering past her. I always hesitate to mention what another doctor suggests..and I know that you have to be very diplomatic.. but I did it and she was most receptive. Dr Kendra said that she was in regular communication with Dr Wolchok and was not familiar with using the Endocort for the Ippi induced Diarrhea and would call him and get back to me..mission accomplished! Meanwhile she had me add another 10 mg of the Pred to take at 10PM . She is taking this very seriously. I hate being on the Pred as I am Diabetic and It messes up my blood sugars and I have to really ride herd very carefully on them.I just want to get off the Pred as soon as possible so I can go on to Ippy #3 in2 weeks..also I haven't been able to leave the house for 10 days.. I need to be near a toilet..I also need to sleep through the night..sigh
Joan
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- March 15, 2012 at 10:04 pm
I too am on the prednisone, higher dosage to start off with now am tapering off, so I am not going to have my 4th infusion if the scans don't show it helped and ofcourse the uveitis will put a stop to that, The prednisone did stop the diarrhea but brought on the constipation so now am trying to care for that.
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- March 15, 2012 at 10:04 pm
I too am on the prednisone, higher dosage to start off with now am tapering off, so I am not going to have my 4th infusion if the scans don't show it helped and ofcourse the uveitis will put a stop to that, The prednisone did stop the diarrhea but brought on the constipation so now am trying to care for that.
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- March 15, 2012 at 10:04 pm
I too am on the prednisone, higher dosage to start off with now am tapering off, so I am not going to have my 4th infusion if the scans don't show it helped and ofcourse the uveitis will put a stop to that, The prednisone did stop the diarrhea but brought on the constipation so now am trying to care for that.
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- March 15, 2012 at 10:10 pm
Hi Joan,
Sorry to read that your having problems with the diarrhea. My Mom has run into a problem with the diarrhea after her 2nd infusion of reinduction. She never had this problem on her orignial cycle of Yervoy. She is currently in the hospital as of yesterday and confirmed today with colitis. She is getting IV steriods and hopeful onto oral and then off of them very soon. Please just be very carful that you don't become dehydrated from all of the diarrhea. I totally understand how you feel about being on the Prednisone my Mom's blood sugar levels went crazy, but unfortunaly that's a side effect of the drug. From what I gathered from Dr. Wolchock is that the endocort needs to be used before you become depended on the Prednisone. I'm trying to find out if you can continue on Yervoy while on steriods does it affect the outcome. If I get an answer I'll post it unless maybe you know the answer. I hope your feeling better soon and off of the Prednisone very soon.
Wendy
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- March 15, 2012 at 10:51 pm
I also developed colitis after my second treatment for Ipi. I have been on steroids since Jan 2. I have 2 pills left (Fri and Sun.). My doctor would not let me continue until i was off the steroids. I will have a PET scan Tues. if all is good I will have my next treatment. He wants me off the steroids for 48 hours before treatment.Good luck! I hope all goes well for you!
Nancy
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- March 15, 2012 at 10:51 pm
I also developed colitis after my second treatment for Ipi. I have been on steroids since Jan 2. I have 2 pills left (Fri and Sun.). My doctor would not let me continue until i was off the steroids. I will have a PET scan Tues. if all is good I will have my next treatment. He wants me off the steroids for 48 hours before treatment.Good luck! I hope all goes well for you!
Nancy
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- March 15, 2012 at 10:51 pm
I also developed colitis after my second treatment for Ipi. I have been on steroids since Jan 2. I have 2 pills left (Fri and Sun.). My doctor would not let me continue until i was off the steroids. I will have a PET scan Tues. if all is good I will have my next treatment. He wants me off the steroids for 48 hours before treatment.Good luck! I hope all goes well for you!
Nancy
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- March 16, 2012 at 12:59 pm
Hi Joan,
I’m so sorry you’re going through this and so glad that your doc is willing to look into Endocort.
I’ve learned that some docs do prescribe pred first, but for me the Endocort is the best of both worlds–it let me continue my infusions and take it for as long as I needed it.
Now that I started reinduction last Thursday, I carry a a supply with me, with the stipulation that I call dr. W if the dreaded diarrhea starts.
Please keep us posted–I really admire you, and you are in my thoughts.
Karen -
- March 16, 2012 at 12:59 pm
Hi Joan,
I’m so sorry you’re going through this and so glad that your doc is willing to look into Endocort.
I’ve learned that some docs do prescribe pred first, but for me the Endocort is the best of both worlds–it let me continue my infusions and take it for as long as I needed it.
Now that I started reinduction last Thursday, I carry a a supply with me, with the stipulation that I call dr. W if the dreaded diarrhea starts.
Please keep us posted–I really admire you, and you are in my thoughts.
Karen -
- March 16, 2012 at 4:57 pm
Karen..thanks so much for your reply. Did the endocort STOP your diarrhea totally or just slow things down?I am hoping that Dr Kendra wa able to contact Dr Wolchok to get the infomation about the endocort.If not.. I think that she is going to have to up my Prednisone dose. I take 20mg at 10 am and mostly do well until about 8pm..when I start making trips to the bathroom until 3 am. I take a 10 mg pred at 9pm as of Wednesday night..but it hasn't helped. I imagine they will want to up the Pred dose and I will never get weaned off of it by my next (#3) infusion Thursday Mar 29. I stay well hydrated and my electrolytes were perfect when they did blood work to check on Wednesday/ This diarrhea is all water and I think that I must pass about 1/2 gal with each movement..I can't replace all that much..plus I get no sleep.I am just exhusted. I also can't leave the house as I must be near the bathroom at all times..sigh I hope that your reinduction goes well and that you have no bad side effects this time..we New York gals are tough ..so hang in there
Joan
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- March 16, 2012 at 4:57 pm
Karen..thanks so much for your reply. Did the endocort STOP your diarrhea totally or just slow things down?I am hoping that Dr Kendra wa able to contact Dr Wolchok to get the infomation about the endocort.If not.. I think that she is going to have to up my Prednisone dose. I take 20mg at 10 am and mostly do well until about 8pm..when I start making trips to the bathroom until 3 am. I take a 10 mg pred at 9pm as of Wednesday night..but it hasn't helped. I imagine they will want to up the Pred dose and I will never get weaned off of it by my next (#3) infusion Thursday Mar 29. I stay well hydrated and my electrolytes were perfect when they did blood work to check on Wednesday/ This diarrhea is all water and I think that I must pass about 1/2 gal with each movement..I can't replace all that much..plus I get no sleep.I am just exhusted. I also can't leave the house as I must be near the bathroom at all times..sigh I hope that your reinduction goes well and that you have no bad side effects this time..we New York gals are tough ..so hang in there
Joan
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- March 16, 2012 at 9:13 pm
Karen.. I just got a call from Dr Kendras office.. it looks like its a no go for the endocort..damm! They are admitting me tonight to start IV steroids..OY! I am getting ready tO leave soon.. I will post when I can.. I guess this will be the end of the IPPI for me.
wish me luck
Joan
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- March 16, 2012 at 9:13 pm
Karen.. I just got a call from Dr Kendras office.. it looks like its a no go for the endocort..damm! They are admitting me tonight to start IV steroids..OY! I am getting ready tO leave soon.. I will post when I can.. I guess this will be the end of the IPPI for me.
wish me luck
Joan
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- March 16, 2012 at 10:00 pm
Joan, don't dispair, this is what's best for you right now. You do have 16 weeks from the start of Yervoy to finish it, if need be, so you never know.
Just concentrate on feeling better!
Looking forward to hearing good things. We NY'ers are tough!
hugs,
karen
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- March 16, 2012 at 10:00 pm
Joan, don't dispair, this is what's best for you right now. You do have 16 weeks from the start of Yervoy to finish it, if need be, so you never know.
Just concentrate on feeling better!
Looking forward to hearing good things. We NY'ers are tough!
hugs,
karen
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- March 16, 2012 at 10:00 pm
Joan, don't dispair, this is what's best for you right now. You do have 16 weeks from the start of Yervoy to finish it, if need be, so you never know.
Just concentrate on feeling better!
Looking forward to hearing good things. We NY'ers are tough!
hugs,
karen
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- March 16, 2012 at 10:01 pm
Joan, don't dispair, this is what's best for you right now. You do have 16 weeks from the start of Yervoy to finish it, if need be, so you never know.
Just concentrate on feeling better!
Looking forward to hearing good things. We NY'ers are tough!
hugs,
karen
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- March 16, 2012 at 10:01 pm
Joan, don't dispair, this is what's best for you right now. You do have 16 weeks from the start of Yervoy to finish it, if need be, so you never know.
Just concentrate on feeling better!
Looking forward to hearing good things. We NY'ers are tough!
hugs,
karen
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- March 16, 2012 at 10:01 pm
Joan, don't dispair, this is what's best for you right now. You do have 16 weeks from the start of Yervoy to finish it, if need be, so you never know.
Just concentrate on feeling better!
Looking forward to hearing good things. We NY'ers are tough!
hugs,
karen
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- March 17, 2012 at 9:37 am
Sorry to hear that Joan, but you need to get better first, you maybe able to continue like Karen said you have 16 weeks to complete the course, I will keep you in my prayers for a short hospital stay.
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- March 17, 2012 at 9:37 am
Sorry to hear that Joan, but you need to get better first, you maybe able to continue like Karen said you have 16 weeks to complete the course, I will keep you in my prayers for a short hospital stay.
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- March 17, 2012 at 9:37 am
Sorry to hear that Joan, but you need to get better first, you maybe able to continue like Karen said you have 16 weeks to complete the course, I will keep you in my prayers for a short hospital stay.
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- March 16, 2012 at 9:13 pm
Karen.. I just got a call from Dr Kendras office.. it looks like its a no go for the endocort..damm! They are admitting me tonight to start IV steroids..OY! I am getting ready tO leave soon.. I will post when I can.. I guess this will be the end of the IPPI for me.
wish me luck
Joan
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- March 16, 2012 at 4:57 pm
Karen..thanks so much for your reply. Did the endocort STOP your diarrhea totally or just slow things down?I am hoping that Dr Kendra wa able to contact Dr Wolchok to get the infomation about the endocort.If not.. I think that she is going to have to up my Prednisone dose. I take 20mg at 10 am and mostly do well until about 8pm..when I start making trips to the bathroom until 3 am. I take a 10 mg pred at 9pm as of Wednesday night..but it hasn't helped. I imagine they will want to up the Pred dose and I will never get weaned off of it by my next (#3) infusion Thursday Mar 29. I stay well hydrated and my electrolytes were perfect when they did blood work to check on Wednesday/ This diarrhea is all water and I think that I must pass about 1/2 gal with each movement..I can't replace all that much..plus I get no sleep.I am just exhusted. I also can't leave the house as I must be near the bathroom at all times..sigh I hope that your reinduction goes well and that you have no bad side effects this time..we New York gals are tough ..so hang in there
Joan
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- March 16, 2012 at 12:59 pm
Hi Joan,
I’m so sorry you’re going through this and so glad that your doc is willing to look into Endocort.
I’ve learned that some docs do prescribe pred first, but for me the Endocort is the best of both worlds–it let me continue my infusions and take it for as long as I needed it.
Now that I started reinduction last Thursday, I carry a a supply with me, with the stipulation that I call dr. W if the dreaded diarrhea starts.
Please keep us posted–I really admire you, and you are in my thoughts.
Karen
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- March 15, 2012 at 10:10 pm
Hi Joan,
Sorry to read that your having problems with the diarrhea. My Mom has run into a problem with the diarrhea after her 2nd infusion of reinduction. She never had this problem on her orignial cycle of Yervoy. She is currently in the hospital as of yesterday and confirmed today with colitis. She is getting IV steriods and hopeful onto oral and then off of them very soon. Please just be very carful that you don't become dehydrated from all of the diarrhea. I totally understand how you feel about being on the Prednisone my Mom's blood sugar levels went crazy, but unfortunaly that's a side effect of the drug. From what I gathered from Dr. Wolchock is that the endocort needs to be used before you become depended on the Prednisone. I'm trying to find out if you can continue on Yervoy while on steriods does it affect the outcome. If I get an answer I'll post it unless maybe you know the answer. I hope your feeling better soon and off of the Prednisone very soon.
Wendy
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- March 15, 2012 at 10:10 pm
Hi Joan,
Sorry to read that your having problems with the diarrhea. My Mom has run into a problem with the diarrhea after her 2nd infusion of reinduction. She never had this problem on her orignial cycle of Yervoy. She is currently in the hospital as of yesterday and confirmed today with colitis. She is getting IV steriods and hopeful onto oral and then off of them very soon. Please just be very carful that you don't become dehydrated from all of the diarrhea. I totally understand how you feel about being on the Prednisone my Mom's blood sugar levels went crazy, but unfortunaly that's a side effect of the drug. From what I gathered from Dr. Wolchock is that the endocort needs to be used before you become depended on the Prednisone. I'm trying to find out if you can continue on Yervoy while on steriods does it affect the outcome. If I get an answer I'll post it unless maybe you know the answer. I hope your feeling better soon and off of the Prednisone very soon.
Wendy
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