› Forums › General Melanoma Community › Still so sick calling doctor today
- This topic has 33 replies, 7 voices, and was last updated 13 years, 11 months ago by
gabsound.
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- February 22, 2012 at 1:20 pm
I had my 3rd infusion of ipi on Monday, my labs were all good so they proceed with the treatment even though I had the chills and achy feeling, the nurse gave me tylenol and that seemed to help. Yesterday was a bad day along with the chills I developed diarrhea and still have it today so now is the time to call the doctor, I know he said to take immodeum and I do have it on hand but still want to talk to the doctor about checking for colitis, is there a blood test or cat scan, what do they do?
I had my 3rd infusion of ipi on Monday, my labs were all good so they proceed with the treatment even though I had the chills and achy feeling, the nurse gave me tylenol and that seemed to help. Yesterday was a bad day along with the chills I developed diarrhea and still have it today so now is the time to call the doctor, I know he said to take immodeum and I do have it on hand but still want to talk to the doctor about checking for colitis, is there a blood test or cat scan, what do they do? I am so glad that I happened across this site it has brought so much information for me since my doctor is not familiar with Yervoy. Will let you know what he says to do, can't call for another hour since Wisconsin is an hour behind us. yoopergirl
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- February 22, 2012 at 1:46 pm
hi,
I am just starting into the ippi world too. I am sorry dont have answer but I do know you should get a hold of your doctor asap to get on the diarrhea. Your doctor is not familar with ippi, that makes it tough. I know others on this site post information about what their doctors, who are completely familar with ippi suggest for diarrhea,. I hope you can take their info to your doctor to help you, I know they warn to get on a steroid for it before it gets too bad . I am sorry I am not more helpful.
let us know how you make out, I am sorry this has hit you hard.
laurie from maine
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- February 22, 2012 at 1:46 pm
hi,
I am just starting into the ippi world too. I am sorry dont have answer but I do know you should get a hold of your doctor asap to get on the diarrhea. Your doctor is not familar with ippi, that makes it tough. I know others on this site post information about what their doctors, who are completely familar with ippi suggest for diarrhea,. I hope you can take their info to your doctor to help you, I know they warn to get on a steroid for it before it gets too bad . I am sorry I am not more helpful.
let us know how you make out, I am sorry this has hit you hard.
laurie from maine
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- February 22, 2012 at 1:46 pm
hi,
I am just starting into the ippi world too. I am sorry dont have answer but I do know you should get a hold of your doctor asap to get on the diarrhea. Your doctor is not familar with ippi, that makes it tough. I know others on this site post information about what their doctors, who are completely familar with ippi suggest for diarrhea,. I hope you can take their info to your doctor to help you, I know they warn to get on a steroid for it before it gets too bad . I am sorry I am not more helpful.
let us know how you make out, I am sorry this has hit you hard.
laurie from maine
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- February 22, 2012 at 2:30 pm
Good morning. Please check my last postings to you. You need to be on Endocort EC NOT immodium. And the chills are a side effect. It’s all in your last thread–must be on page 2 here. If your doc is not knowledgeable about ipi, he needs to call someone who is. Trust me, this isn’t something I just thought up on my own, but comes from dr Jed Wolchok. He’s at Sloan & would probably take your docs call. Also google yervoy and the company, BMS, lists phone numbers for docs and patients to call. I’d get them for you but I’m on the train to work on my iPhone. Please let us know what’s happening. Ipi is a very strong drug and u deserve expert advice.
Be well, karen -
- February 22, 2012 at 2:30 pm
Good morning. Please check my last postings to you. You need to be on Endocort EC NOT immodium. And the chills are a side effect. It’s all in your last thread–must be on page 2 here. If your doc is not knowledgeable about ipi, he needs to call someone who is. Trust me, this isn’t something I just thought up on my own, but comes from dr Jed Wolchok. He’s at Sloan & would probably take your docs call. Also google yervoy and the company, BMS, lists phone numbers for docs and patients to call. I’d get them for you but I’m on the train to work on my iPhone. Please let us know what’s happening. Ipi is a very strong drug and u deserve expert advice.
Be well, karen-
- February 22, 2012 at 2:35 pm
The doctor is calling me back, the nurse told me to take immodium, she did say I might have to go on a steroid. I will give this info to my doctor. Thanks Karen
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- February 22, 2012 at 2:35 pm
The doctor is calling me back, the nurse told me to take immodium, she did say I might have to go on a steroid. I will give this info to my doctor. Thanks Karen
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- February 22, 2012 at 4:20 pm
I don't know if they'd give a steroid for the chills, and if they do, of course you'd have to take it, but if they want to give you a steroid for the diarrhea, insist on trying the Endocort first. (and a bland diet.) the reason for this is that if you're on a systemic steroid, it has to be below a certain dose before you can have your next infusion. Endocort just works in the gut, so you can still have your next infusion. Budesonide is the generic name, each capsule is 3 mg., standard dosage is 3, 3 mg. capsules w/food once daily.
Hope this helps.
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- February 22, 2012 at 4:20 pm
I don't know if they'd give a steroid for the chills, and if they do, of course you'd have to take it, but if they want to give you a steroid for the diarrhea, insist on trying the Endocort first. (and a bland diet.) the reason for this is that if you're on a systemic steroid, it has to be below a certain dose before you can have your next infusion. Endocort just works in the gut, so you can still have your next infusion. Budesonide is the generic name, each capsule is 3 mg., standard dosage is 3, 3 mg. capsules w/food once daily.
Hope this helps.
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- February 22, 2012 at 4:45 pm
He still hasn't called me back yet, but I will insist on the endocort and I looked up your doctor online and got his telephone number so will let me doctor know this.
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- February 22, 2012 at 4:45 pm
He still hasn't called me back yet, but I will insist on the endocort and I looked up your doctor online and got his telephone number so will let me doctor know this.
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- February 22, 2012 at 4:45 pm
He still hasn't called me back yet, but I will insist on the endocort and I looked up your doctor online and got his telephone number so will let me doctor know this.
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- February 22, 2012 at 4:20 pm
I don't know if they'd give a steroid for the chills, and if they do, of course you'd have to take it, but if they want to give you a steroid for the diarrhea, insist on trying the Endocort first. (and a bland diet.) the reason for this is that if you're on a systemic steroid, it has to be below a certain dose before you can have your next infusion. Endocort just works in the gut, so you can still have your next infusion. Budesonide is the generic name, each capsule is 3 mg., standard dosage is 3, 3 mg. capsules w/food once daily.
Hope this helps.
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- February 22, 2012 at 2:35 pm
The doctor is calling me back, the nurse told me to take immodium, she did say I might have to go on a steroid. I will give this info to my doctor. Thanks Karen
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- February 22, 2012 at 2:30 pm
Good morning. Please check my last postings to you. You need to be on Endocort EC NOT immodium. And the chills are a side effect. It’s all in your last thread–must be on page 2 here. If your doc is not knowledgeable about ipi, he needs to call someone who is. Trust me, this isn’t something I just thought up on my own, but comes from dr Jed Wolchok. He’s at Sloan & would probably take your docs call. Also google yervoy and the company, BMS, lists phone numbers for docs and patients to call. I’d get them for you but I’m on the train to work on my iPhone. Please let us know what’s happening. Ipi is a very strong drug and u deserve expert advice.
Be well, karen -
- February 22, 2012 at 4:56 pm
My hubby just got home from a four day hospital admission for colitis induced by ipi. Imodium did not help at all. They did a flex scope and a colonoscopy for diagnosis. Don't mess around waiting as it will get worse before it gets better. You will dehydrate very quickly.
barb
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- February 22, 2012 at 4:56 pm
My hubby just got home from a four day hospital admission for colitis induced by ipi. Imodium did not help at all. They did a flex scope and a colonoscopy for diagnosis. Don't mess around waiting as it will get worse before it gets better. You will dehydrate very quickly.
barb
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- February 22, 2012 at 4:56 pm
My hubby just got home from a four day hospital admission for colitis induced by ipi. Imodium did not help at all. They did a flex scope and a colonoscopy for diagnosis. Don't mess around waiting as it will get worse before it gets better. You will dehydrate very quickly.
barb
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- February 22, 2012 at 6:37 pm
Hi – I only received one dose of ipi (3mg dose) and 1 week later was hospitalized for dehydration and then again 10 days later for ulcerated colitis. I would say it was an immediate reaction in that I felt awful right away and it gradully got worse and worse. You have to assume what you are experiencing is due to the ippi because it would be to dangerous not to. I was treated with infliximab and high doses of prednisone for approximately10-12 weeks afterward and it took a total of about 4-5 months for my colitis to subside and start functioning normally. The other side effects were loss of hair about 1/2 of total which was really stressful as I wasn't prepared for this and didn't know if it would stop and there wasn't anything they could do about that. The other side effect I had and don't know if it is a result of the ippi or coincidental was terrible joint pain like they describe for rheumatoid artharitis about 3 or 4 months later that I still struggle with. I understand only about 2% of the patients experience these symptoms and might be related to an all ready revved up immune system. There is a lot of family history for auto immune disorders in my family and though I don't have one, I do have tendencies toward them with some non-life threatening issues I might add also that because this is such a new drug, even some of the best Dr.'s aren't sure of all the medical responses to this drug as it effects so many differently. However a good Dr. will should take your situation very seriously and folllow up with with labs and other diagnostic tests for these severe symptoms. I hope this helps, good luck to you and keep us posted with your findings.
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- February 22, 2012 at 6:37 pm
Hi – I only received one dose of ipi (3mg dose) and 1 week later was hospitalized for dehydration and then again 10 days later for ulcerated colitis. I would say it was an immediate reaction in that I felt awful right away and it gradully got worse and worse. You have to assume what you are experiencing is due to the ippi because it would be to dangerous not to. I was treated with infliximab and high doses of prednisone for approximately10-12 weeks afterward and it took a total of about 4-5 months for my colitis to subside and start functioning normally. The other side effects were loss of hair about 1/2 of total which was really stressful as I wasn't prepared for this and didn't know if it would stop and there wasn't anything they could do about that. The other side effect I had and don't know if it is a result of the ippi or coincidental was terrible joint pain like they describe for rheumatoid artharitis about 3 or 4 months later that I still struggle with. I understand only about 2% of the patients experience these symptoms and might be related to an all ready revved up immune system. There is a lot of family history for auto immune disorders in my family and though I don't have one, I do have tendencies toward them with some non-life threatening issues I might add also that because this is such a new drug, even some of the best Dr.'s aren't sure of all the medical responses to this drug as it effects so many differently. However a good Dr. will should take your situation very seriously and folllow up with with labs and other diagnostic tests for these severe symptoms. I hope this helps, good luck to you and keep us posted with your findings.
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- February 23, 2012 at 1:06 am
Swanee,I too have had some joint pain issues. They started after my third ipi infusion. I intermittently get chills, usually at night especially if I’ve had a tiring day. My pain has mostly been in my left hip ( surgery and radiation on right leg). Also some back pain. I think the awkward position I was in for radiation thx may have started it off. I had about 2 weeks where I was just miserable. Ibuprofen, rest and ice usually fix my back pain. I was in tears waiting for strong pain pills to kick in. I was also so stiff and was moving like a really old person. Its quite a bit better ( I did go to my chiropractor) but still have just aching in both hips when I sleep at night. Of course my first thought is metastatic spread to a bone! I had 4th Yervoy treatment 5 days ago so will get scans in the next few weeks.
I hope your arthritis symptoms improve, cause this is no fun at all!
Julie in Las Vegas
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- February 23, 2012 at 1:06 am
Swanee,I too have had some joint pain issues. They started after my third ipi infusion. I intermittently get chills, usually at night especially if I’ve had a tiring day. My pain has mostly been in my left hip ( surgery and radiation on right leg). Also some back pain. I think the awkward position I was in for radiation thx may have started it off. I had about 2 weeks where I was just miserable. Ibuprofen, rest and ice usually fix my back pain. I was in tears waiting for strong pain pills to kick in. I was also so stiff and was moving like a really old person. Its quite a bit better ( I did go to my chiropractor) but still have just aching in both hips when I sleep at night. Of course my first thought is metastatic spread to a bone! I had 4th Yervoy treatment 5 days ago so will get scans in the next few weeks.
I hope your arthritis symptoms improve, cause this is no fun at all!
Julie in Las Vegas
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- February 23, 2012 at 1:06 am
Swanee,I too have had some joint pain issues. They started after my third ipi infusion. I intermittently get chills, usually at night especially if I’ve had a tiring day. My pain has mostly been in my left hip ( surgery and radiation on right leg). Also some back pain. I think the awkward position I was in for radiation thx may have started it off. I had about 2 weeks where I was just miserable. Ibuprofen, rest and ice usually fix my back pain. I was in tears waiting for strong pain pills to kick in. I was also so stiff and was moving like a really old person. Its quite a bit better ( I did go to my chiropractor) but still have just aching in both hips when I sleep at night. Of course my first thought is metastatic spread to a bone! I had 4th Yervoy treatment 5 days ago so will get scans in the next few weeks.
I hope your arthritis symptoms improve, cause this is no fun at all!
Julie in Las Vegas
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- February 22, 2012 at 6:37 pm
Hi – I only received one dose of ipi (3mg dose) and 1 week later was hospitalized for dehydration and then again 10 days later for ulcerated colitis. I would say it was an immediate reaction in that I felt awful right away and it gradully got worse and worse. You have to assume what you are experiencing is due to the ippi because it would be to dangerous not to. I was treated with infliximab and high doses of prednisone for approximately10-12 weeks afterward and it took a total of about 4-5 months for my colitis to subside and start functioning normally. The other side effects were loss of hair about 1/2 of total which was really stressful as I wasn't prepared for this and didn't know if it would stop and there wasn't anything they could do about that. The other side effect I had and don't know if it is a result of the ippi or coincidental was terrible joint pain like they describe for rheumatoid artharitis about 3 or 4 months later that I still struggle with. I understand only about 2% of the patients experience these symptoms and might be related to an all ready revved up immune system. There is a lot of family history for auto immune disorders in my family and though I don't have one, I do have tendencies toward them with some non-life threatening issues I might add also that because this is such a new drug, even some of the best Dr.'s aren't sure of all the medical responses to this drug as it effects so many differently. However a good Dr. will should take your situation very seriously and folllow up with with labs and other diagnostic tests for these severe symptoms. I hope this helps, good luck to you and keep us posted with your findings.
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- February 22, 2012 at 8:56 pm
Finally the doctor called back and he wants to see me tomorrow morning, hope I can make it that far, it is not like we are on a road that has all kinds of stops, we are in the country so better take a change of clothes with. He wants to exam me and Karen I am bringing along your doctors name and phone number to show him.
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- February 22, 2012 at 8:56 pm
Finally the doctor called back and he wants to see me tomorrow morning, hope I can make it that far, it is not like we are on a road that has all kinds of stops, we are in the country so better take a change of clothes with. He wants to exam me and Karen I am bringing along your doctors name and phone number to show him.
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- February 22, 2012 at 8:56 pm
Finally the doctor called back and he wants to see me tomorrow morning, hope I can make it that far, it is not like we are on a road that has all kinds of stops, we are in the country so better take a change of clothes with. He wants to exam me and Karen I am bringing along your doctors name and phone number to show him.
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- February 22, 2012 at 9:22 pm
I am so sorry that you still feel so sick.I do hope that your doctor consuts with another doctor when he sees you tomorrow.Since I am a newcomer to Melanoma and to Ippi..I know that the others on this board are much more experienced than I am on Ippi matters.When I decided to start Ippi Dr Kendra gave me a infomation binder put out by Bristol Meyers for patients and doctors..included are a wallet card to carry at all times with infomation to show to ER doctors as they may not know to much about Yervoy.I am sure that you can (or your doctor) by contacting Bristol Maeyers the number is..1-855-YERVOY1 and the binder is called Yervoy immune-mediated adverse reation management guide. It has every reaction and what to do if you get one and how the condition should be managed and includes a chart and the wallet card. Dr Kendra's staff was very adanent about calling at the first sign of diarrhea (more than 4 times a day or watery stools) and any fever. In fact I am supposed to check my Temp every day.I hope that you feel better soon .Good luck.
Joan
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- February 22, 2012 at 9:22 pm
I am so sorry that you still feel so sick.I do hope that your doctor consuts with another doctor when he sees you tomorrow.Since I am a newcomer to Melanoma and to Ippi..I know that the others on this board are much more experienced than I am on Ippi matters.When I decided to start Ippi Dr Kendra gave me a infomation binder put out by Bristol Meyers for patients and doctors..included are a wallet card to carry at all times with infomation to show to ER doctors as they may not know to much about Yervoy.I am sure that you can (or your doctor) by contacting Bristol Maeyers the number is..1-855-YERVOY1 and the binder is called Yervoy immune-mediated adverse reation management guide. It has every reaction and what to do if you get one and how the condition should be managed and includes a chart and the wallet card. Dr Kendra's staff was very adanent about calling at the first sign of diarrhea (more than 4 times a day or watery stools) and any fever. In fact I am supposed to check my Temp every day.I hope that you feel better soon .Good luck.
Joan
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- February 22, 2012 at 9:22 pm
I am so sorry that you still feel so sick.I do hope that your doctor consuts with another doctor when he sees you tomorrow.Since I am a newcomer to Melanoma and to Ippi..I know that the others on this board are much more experienced than I am on Ippi matters.When I decided to start Ippi Dr Kendra gave me a infomation binder put out by Bristol Meyers for patients and doctors..included are a wallet card to carry at all times with infomation to show to ER doctors as they may not know to much about Yervoy.I am sure that you can (or your doctor) by contacting Bristol Maeyers the number is..1-855-YERVOY1 and the binder is called Yervoy immune-mediated adverse reation management guide. It has every reaction and what to do if you get one and how the condition should be managed and includes a chart and the wallet card. Dr Kendra's staff was very adanent about calling at the first sign of diarrhea (more than 4 times a day or watery stools) and any fever. In fact I am supposed to check my Temp every day.I hope that you feel better soon .Good luck.
Joan
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