› Forums › General Melanoma Community › Nivolumab in combination with ipilimumab side effects
- This topic has 51 replies, 9 voices, and was last updated 8 years, 9 months ago by
MaureenB.
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- February 27, 2016 at 2:01 am
My husband has stage IV melanoma. Petscan showed mets in his liver, lower back, and shoulder. He had 4 combo infusion of nivolumab/ipimumab. His most current petscan showed NED. He now has to go every 2 weeks for infusion of nivolumab only. I'm writing about the side effects he has been experiencing. After the first infusion he had no side effects, after the second infusion he rashes, and after the third infusion he had rashes, severe headaches, lost of appetite, and severe fatigue. He was prescribed oral steriods which has helped with these symptoms. But recently he has noticed blood is his urine and will be seeing a urologist. We've read that long term use of oral steriods is not good for you so he has been trying to get off them. It has been almost 2 weeks since he stop taking the oral steriods. He feels constantly fatigue and does not seem to have an appetite today. Has anyone experience symptoms similiar to my husband?
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- February 27, 2016 at 3:08 pm
Sorry you and your husband are having to deal with this Emi. Here is a post from a discussion by two experts on side effects (they adress both targeted and immunotherapy) and how to deal with them: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
As you can see, your husbnd's docs have done the right thing by treating him with prednisone (which does create its own set of side effects…sadly!). Rashes and fatigue are very common….as are endocrine problems, colitis and pneumonitis. You can use the blog's search bubble to find much more info if you like. Hang in there and continue to let your husband's docs know how he is doing so they can stay on top of things and help diminish his problems to the greatest extent ossible.
Wishing you both my best, celeste
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- February 27, 2016 at 3:08 pm
Sorry you and your husband are having to deal with this Emi. Here is a post from a discussion by two experts on side effects (they adress both targeted and immunotherapy) and how to deal with them: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
As you can see, your husbnd's docs have done the right thing by treating him with prednisone (which does create its own set of side effects…sadly!). Rashes and fatigue are very common….as are endocrine problems, colitis and pneumonitis. You can use the blog's search bubble to find much more info if you like. Hang in there and continue to let your husband's docs know how he is doing so they can stay on top of things and help diminish his problems to the greatest extent ossible.
Wishing you both my best, celeste
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- February 27, 2016 at 5:44 pm
My physciian told me to taper the steroids very slowly and perhaps this is the issue here. Appetite and strength will rise with steroids. So you might want to check about how to taper the dose carefully. Also, colitis and pneumonitus are the extreme side effects I was told might happen not common though.
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- February 27, 2016 at 5:44 pm
My physciian told me to taper the steroids very slowly and perhaps this is the issue here. Appetite and strength will rise with steroids. So you might want to check about how to taper the dose carefully. Also, colitis and pneumonitus are the extreme side effects I was told might happen not common though.
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- February 27, 2016 at 5:44 pm
My physciian told me to taper the steroids very slowly and perhaps this is the issue here. Appetite and strength will rise with steroids. So you might want to check about how to taper the dose carefully. Also, colitis and pneumonitus are the extreme side effects I was told might happen not common though.
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- February 27, 2016 at 3:08 pm
Sorry you and your husband are having to deal with this Emi. Here is a post from a discussion by two experts on side effects (they adress both targeted and immunotherapy) and how to deal with them: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
As you can see, your husbnd's docs have done the right thing by treating him with prednisone (which does create its own set of side effects…sadly!). Rashes and fatigue are very common….as are endocrine problems, colitis and pneumonitis. You can use the blog's search bubble to find much more info if you like. Hang in there and continue to let your husband's docs know how he is doing so they can stay on top of things and help diminish his problems to the greatest extent ossible.
Wishing you both my best, celeste
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- February 27, 2016 at 5:45 pm
Yes I had "rashes, serve headaches, lost of appetite and severe fatigue" after my fourth treatment with ipi (Yervoy). It turned out that everything but the rash was because my anterior piyiuitary had been damaged.
I am mentioning it because taking oral steroids would compensate for the lack of pituitary or adrenal function. Once the 'artifical' steroid was gone from your husband's system, all the symptoms of pitiutary or adrenal dysfuction would come back. Two of the symptoms are extreme fatigue and no appetite.
I assume lowering the oral steroids dose had been done under medical supervision and he has had regular blood tests checking his cortisol levels?
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- February 27, 2016 at 5:45 pm
Yes I had "rashes, serve headaches, lost of appetite and severe fatigue" after my fourth treatment with ipi (Yervoy). It turned out that everything but the rash was because my anterior piyiuitary had been damaged.
I am mentioning it because taking oral steroids would compensate for the lack of pituitary or adrenal function. Once the 'artifical' steroid was gone from your husband's system, all the symptoms of pitiutary or adrenal dysfuction would come back. Two of the symptoms are extreme fatigue and no appetite.
I assume lowering the oral steroids dose had been done under medical supervision and he has had regular blood tests checking his cortisol levels?
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- February 29, 2016 at 4:41 pm
Thank you for sharing your experience. My husband has regular blood test before each infusion and the only thing of concern that was mentioned last time was his thyroid. We were told that his loss of appetite was probably due to hyperthyroid. The onc prescribed 5MG of prednisone daily to help with his loss of appetite and fatigue. My husband is worried that the the sterioids might comprise his immunotherapy treatment, even though we were told otherwise by his Onc. He stoped taking the steriods for a couple of weeks, and he was doing okay for a few days but started feeling more fatigue as each day went by. He started taking the steriods again this weekend because he didn't want to feel fatigue and sick all the time. For the most part the steriods keep him feeling 'normal'.
My husband will be going to the hosipital this week for another infusion and we will discuss his blood test results more closely. How did you know that your anterior piyiuitary had been damaged? And is it temporary?
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- February 29, 2016 at 4:41 pm
Thank you for sharing your experience. My husband has regular blood test before each infusion and the only thing of concern that was mentioned last time was his thyroid. We were told that his loss of appetite was probably due to hyperthyroid. The onc prescribed 5MG of prednisone daily to help with his loss of appetite and fatigue. My husband is worried that the the sterioids might comprise his immunotherapy treatment, even though we were told otherwise by his Onc. He stoped taking the steriods for a couple of weeks, and he was doing okay for a few days but started feeling more fatigue as each day went by. He started taking the steriods again this weekend because he didn't want to feel fatigue and sick all the time. For the most part the steriods keep him feeling 'normal'.
My husband will be going to the hosipital this week for another infusion and we will discuss his blood test results more closely. How did you know that your anterior piyiuitary had been damaged? And is it temporary?
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- February 29, 2016 at 4:41 pm
Thank you for sharing your experience. My husband has regular blood test before each infusion and the only thing of concern that was mentioned last time was his thyroid. We were told that his loss of appetite was probably due to hyperthyroid. The onc prescribed 5MG of prednisone daily to help with his loss of appetite and fatigue. My husband is worried that the the sterioids might comprise his immunotherapy treatment, even though we were told otherwise by his Onc. He stoped taking the steriods for a couple of weeks, and he was doing okay for a few days but started feeling more fatigue as each day went by. He started taking the steriods again this weekend because he didn't want to feel fatigue and sick all the time. For the most part the steriods keep him feeling 'normal'.
My husband will be going to the hosipital this week for another infusion and we will discuss his blood test results more closely. How did you know that your anterior piyiuitary had been damaged? And is it temporary?
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- March 1, 2016 at 8:16 am
It is when you say that the 5mg of predniiolone madke him feel 'normal' that I wonder.
Inflamation of the anterior pituitary gland is a known (if rare) side effect of ipi. I think they did not pick it up very quickly with me because I had had so few other side effects.
I had received my last Ipi treatment, so there wasn't a blood test as the check before the next treatment. Instead I got more and more exhausted until I was convinced there was something wrong and we arranged with the melanoma team for me to have an extra blood test.
Also it was really weird that the diarrrhoea had become constipation!
I was not on prednilsone at that time so the blood tests they ordered showed (a) incredibly low corisol levels and (b) very low thyroxine levels.
However if I had been on prednisolone they would have only seen the thyroxine deficiit.
Within 15 minutes of taking 10 mg of prednisolone and I felt fine. I started 75mcg levothyroxine later the same week.
By the way, I am also short on a number of other hormones that the anterior pitiuitary gland stimulates other glands to make, Most of these are reproductive and I am female and 56, so there is no point replacing those but if I were male it would include testosterone, which would need replacing.
Once I was stabilised I went to the hormone clininc. I did not take my prednisolone that day. They took blood before and after challenging my system with ACTH (adrenocorticotropic hormone), which is a hormone the pituitary produces that affects the adremal glands and makes them produce cortisol.
What was established was that the cortisol deficiency was (a) still there and (b) not due to my adrenal glands, which were fine.
I also had an MRI scan of my head but that was just to eliminate the possibility of a tumour. (No tumour in my head, which was good.)
There is no sign of recovery of function 6 months later and researching the literature (done my my endocrine specialist) has established that people with complete loss of anterior pituitary function, like me, may recover the 'stimulating the reproductive system' hormones and sometimes the 'stimulating the thyroid' hormones but recovering the 'stimulating the adrenal glands' hormone (that ACTH) has never been reported.
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- March 1, 2016 at 8:16 am
It is when you say that the 5mg of predniiolone madke him feel 'normal' that I wonder.
Inflamation of the anterior pituitary gland is a known (if rare) side effect of ipi. I think they did not pick it up very quickly with me because I had had so few other side effects.
I had received my last Ipi treatment, so there wasn't a blood test as the check before the next treatment. Instead I got more and more exhausted until I was convinced there was something wrong and we arranged with the melanoma team for me to have an extra blood test.
Also it was really weird that the diarrrhoea had become constipation!
I was not on prednilsone at that time so the blood tests they ordered showed (a) incredibly low corisol levels and (b) very low thyroxine levels.
However if I had been on prednisolone they would have only seen the thyroxine deficiit.
Within 15 minutes of taking 10 mg of prednisolone and I felt fine. I started 75mcg levothyroxine later the same week.
By the way, I am also short on a number of other hormones that the anterior pitiuitary gland stimulates other glands to make, Most of these are reproductive and I am female and 56, so there is no point replacing those but if I were male it would include testosterone, which would need replacing.
Once I was stabilised I went to the hormone clininc. I did not take my prednisolone that day. They took blood before and after challenging my system with ACTH (adrenocorticotropic hormone), which is a hormone the pituitary produces that affects the adremal glands and makes them produce cortisol.
What was established was that the cortisol deficiency was (a) still there and (b) not due to my adrenal glands, which were fine.
I also had an MRI scan of my head but that was just to eliminate the possibility of a tumour. (No tumour in my head, which was good.)
There is no sign of recovery of function 6 months later and researching the literature (done my my endocrine specialist) has established that people with complete loss of anterior pituitary function, like me, may recover the 'stimulating the reproductive system' hormones and sometimes the 'stimulating the thyroid' hormones but recovering the 'stimulating the adrenal glands' hormone (that ACTH) has never been reported.
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- March 1, 2016 at 3:49 pm
Thanks for sharing again. What I mean by normal is he is able to go about his day without the fatigue. Without the steriods he is tired and gets occasional chills, and needs to lay down or sit down most of the time.
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- March 1, 2016 at 3:49 pm
Thanks for sharing again. What I mean by normal is he is able to go about his day without the fatigue. Without the steriods he is tired and gets occasional chills, and needs to lay down or sit down most of the time.
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- March 1, 2016 at 3:49 pm
Thanks for sharing again. What I mean by normal is he is able to go about his day without the fatigue. Without the steriods he is tired and gets occasional chills, and needs to lay down or sit down most of the time.
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- March 1, 2016 at 8:16 am
It is when you say that the 5mg of predniiolone madke him feel 'normal' that I wonder.
Inflamation of the anterior pituitary gland is a known (if rare) side effect of ipi. I think they did not pick it up very quickly with me because I had had so few other side effects.
I had received my last Ipi treatment, so there wasn't a blood test as the check before the next treatment. Instead I got more and more exhausted until I was convinced there was something wrong and we arranged with the melanoma team for me to have an extra blood test.
Also it was really weird that the diarrrhoea had become constipation!
I was not on prednilsone at that time so the blood tests they ordered showed (a) incredibly low corisol levels and (b) very low thyroxine levels.
However if I had been on prednisolone they would have only seen the thyroxine deficiit.
Within 15 minutes of taking 10 mg of prednisolone and I felt fine. I started 75mcg levothyroxine later the same week.
By the way, I am also short on a number of other hormones that the anterior pitiuitary gland stimulates other glands to make, Most of these are reproductive and I am female and 56, so there is no point replacing those but if I were male it would include testosterone, which would need replacing.
Once I was stabilised I went to the hormone clininc. I did not take my prednisolone that day. They took blood before and after challenging my system with ACTH (adrenocorticotropic hormone), which is a hormone the pituitary produces that affects the adremal glands and makes them produce cortisol.
What was established was that the cortisol deficiency was (a) still there and (b) not due to my adrenal glands, which were fine.
I also had an MRI scan of my head but that was just to eliminate the possibility of a tumour. (No tumour in my head, which was good.)
There is no sign of recovery of function 6 months later and researching the literature (done my my endocrine specialist) has established that people with complete loss of anterior pituitary function, like me, may recover the 'stimulating the reproductive system' hormones and sometimes the 'stimulating the thyroid' hormones but recovering the 'stimulating the adrenal glands' hormone (that ACTH) has never been reported.
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- August 28, 2016 at 8:19 am
Wondering if anyone is particpating in CheckMate 401? My husband has stage 4 mucosal melanoma with large mass in his abdomen and several in liver. He is experiencing 'pseudoprogression' maybe or maybe it's just not working although it seemed to at first with the disappearance of a smaller tumour on his back?? Main side effect is extreme fatigue and weakness which is getting worse. He is 73 years old and had mucosal melanoma in is right maxillary sinus 7 years ago which hwas removed and he hasn't has a recurrnce since until this was discovered in late May this year. We don't know how long it had been there of course. Any similar experiences? he's so exhautsed he needs to sit or lie down much of the time.
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- August 28, 2016 at 8:19 am
Wondering if anyone is particpating in CheckMate 401? My husband has stage 4 mucosal melanoma with large mass in his abdomen and several in liver. He is experiencing 'pseudoprogression' maybe or maybe it's just not working although it seemed to at first with the disappearance of a smaller tumour on his back?? Main side effect is extreme fatigue and weakness which is getting worse. He is 73 years old and had mucosal melanoma in is right maxillary sinus 7 years ago which hwas removed and he hasn't has a recurrnce since until this was discovered in late May this year. We don't know how long it had been there of course. Any similar experiences? he's so exhautsed he needs to sit or lie down much of the time.
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- August 28, 2016 at 8:19 am
Wondering if anyone is particpating in CheckMate 401? My husband has stage 4 mucosal melanoma with large mass in his abdomen and several in liver. He is experiencing 'pseudoprogression' maybe or maybe it's just not working although it seemed to at first with the disappearance of a smaller tumour on his back?? Main side effect is extreme fatigue and weakness which is getting worse. He is 73 years old and had mucosal melanoma in is right maxillary sinus 7 years ago which hwas removed and he hasn't has a recurrnce since until this was discovered in late May this year. We don't know how long it had been there of course. Any similar experiences? he's so exhautsed he needs to sit or lie down much of the time.
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- February 27, 2016 at 5:45 pm
Yes I had "rashes, serve headaches, lost of appetite and severe fatigue" after my fourth treatment with ipi (Yervoy). It turned out that everything but the rash was because my anterior piyiuitary had been damaged.
I am mentioning it because taking oral steroids would compensate for the lack of pituitary or adrenal function. Once the 'artifical' steroid was gone from your husband's system, all the symptoms of pitiutary or adrenal dysfuction would come back. Two of the symptoms are extreme fatigue and no appetite.
I assume lowering the oral steroids dose had been done under medical supervision and he has had regular blood tests checking his cortisol levels?
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- February 27, 2016 at 6:08 pm
Hi Emi,
Sorry you and your husband are dealing with this dreadful beast. As for asking about similar experiences, I can say that one of the best lessons learned from this forum is that almost everyone experiences different reactions to treatments. I am in the exact same place treatment wise as your husband. Be grateful he has responded and is NED at this time. Not all of us even respond, side-effects or not. I share the fatigue and loss of appetite the most and perhaps dry skin which leads to mild itch. I have never read any reports about the blood in urine though, and my guess is its unrelated to this treatment. A buddy of mine who is also diabetic gets this fairly often and its just small crystals formed in the kidneys being passed that damage the urethra on the way out. It clears itself up in a matter of days. Hopefully his situation is nothing more than that but its good seeing a specialist to make sure. As for steroids, I hope he tapered off the prednisone slowly as recommended or that could trigger other side-effects.
Gary
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- February 27, 2016 at 6:08 pm
Hi Emi,
Sorry you and your husband are dealing with this dreadful beast. As for asking about similar experiences, I can say that one of the best lessons learned from this forum is that almost everyone experiences different reactions to treatments. I am in the exact same place treatment wise as your husband. Be grateful he has responded and is NED at this time. Not all of us even respond, side-effects or not. I share the fatigue and loss of appetite the most and perhaps dry skin which leads to mild itch. I have never read any reports about the blood in urine though, and my guess is its unrelated to this treatment. A buddy of mine who is also diabetic gets this fairly often and its just small crystals formed in the kidneys being passed that damage the urethra on the way out. It clears itself up in a matter of days. Hopefully his situation is nothing more than that but its good seeing a specialist to make sure. As for steroids, I hope he tapered off the prednisone slowly as recommended or that could trigger other side-effects.
Gary
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- September 18, 2016 at 3:39 am
Hi,
My husband is on the ipi/nivo trial with very advanced mucosal melanoma – very large mass in his abdomen and some in his liver. He has had the final dual drug and is more exhausted than ever. he's 73 and is barely able to get around and is lying or sitting down most of the time and feeling very miserable. He's having stonach issues too which are temporariy relived by Gaviscon. No vomiitng or diarrhoea. Any similar experiences on these drugs or is it the disease – treatemt team say both.
Thanks,
Maureen
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- September 18, 2016 at 3:39 am
Hi,
My husband is on the ipi/nivo trial with very advanced mucosal melanoma – very large mass in his abdomen and some in his liver. He has had the final dual drug and is more exhausted than ever. he's 73 and is barely able to get around and is lying or sitting down most of the time and feeling very miserable. He's having stonach issues too which are temporariy relived by Gaviscon. No vomiitng or diarrhoea. Any similar experiences on these drugs or is it the disease – treatemt team say both.
Thanks,
Maureen
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- September 18, 2016 at 3:39 am
Hi,
My husband is on the ipi/nivo trial with very advanced mucosal melanoma – very large mass in his abdomen and some in his liver. He has had the final dual drug and is more exhausted than ever. he's 73 and is barely able to get around and is lying or sitting down most of the time and feeling very miserable. He's having stonach issues too which are temporariy relived by Gaviscon. No vomiitng or diarrhoea. Any similar experiences on these drugs or is it the disease – treatemt team say both.
Thanks,
Maureen
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- February 27, 2016 at 6:08 pm
Hi Emi,
Sorry you and your husband are dealing with this dreadful beast. As for asking about similar experiences, I can say that one of the best lessons learned from this forum is that almost everyone experiences different reactions to treatments. I am in the exact same place treatment wise as your husband. Be grateful he has responded and is NED at this time. Not all of us even respond, side-effects or not. I share the fatigue and loss of appetite the most and perhaps dry skin which leads to mild itch. I have never read any reports about the blood in urine though, and my guess is its unrelated to this treatment. A buddy of mine who is also diabetic gets this fairly often and its just small crystals formed in the kidneys being passed that damage the urethra on the way out. It clears itself up in a matter of days. Hopefully his situation is nothing more than that but its good seeing a specialist to make sure. As for steroids, I hope he tapered off the prednisone slowly as recommended or that could trigger other side-effects.
Gary
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- February 28, 2016 at 3:11 pm
Hi Emi, hope it all works in the end.
I am on Ippi/Nivo now. I have had 3 infusions so far with not to bad of side effects other than colitis that has ramped up a lot since the 3rd infusion. I am now on 80 mg prednisone daily for that but have had some of the worst diahrea, nausia and vomiting to date. I don't know if it is the pred or the treatment at this point. If he can not control the colitis he may postpone my 4th infusion and I do not want that. The 4 combo infusions are followed by Nivo alone as in your case.
Best of luck to you and yours,
Open for anyone else with similur side effects cause and effect.
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- February 28, 2016 at 3:11 pm
Hi Emi, hope it all works in the end.
I am on Ippi/Nivo now. I have had 3 infusions so far with not to bad of side effects other than colitis that has ramped up a lot since the 3rd infusion. I am now on 80 mg prednisone daily for that but have had some of the worst diahrea, nausia and vomiting to date. I don't know if it is the pred or the treatment at this point. If he can not control the colitis he may postpone my 4th infusion and I do not want that. The 4 combo infusions are followed by Nivo alone as in your case.
Best of luck to you and yours,
Open for anyone else with similur side effects cause and effect.
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- February 28, 2016 at 11:03 pm
Scott, see Celeste's recent blog post (on her personal blog)–close to 70% of patients with grade 3-4 adverse reactions (like colitis) see a benefit from ipi/nivo. That said, your onc will likely hold the 4th infusion of ipi. You'll likely continue on nivo once the colitis is resolved and you're able to taper off of the prednisone. I had ipi-induced colitis after my 3rd ipi infusion in 2014. Not fun, but it does eventually resolve. Stay on top of it and let your onc know if the prednisone (at the current dose) isn't doing the trick. (I think I was up to 160 mg at one point–and I also needed prednisone by IV in the beginning.) There is research to the effect that prednisone does not inhibit the response to immunotherapy.
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- February 28, 2016 at 11:03 pm
Scott, see Celeste's recent blog post (on her personal blog)–close to 70% of patients with grade 3-4 adverse reactions (like colitis) see a benefit from ipi/nivo. That said, your onc will likely hold the 4th infusion of ipi. You'll likely continue on nivo once the colitis is resolved and you're able to taper off of the prednisone. I had ipi-induced colitis after my 3rd ipi infusion in 2014. Not fun, but it does eventually resolve. Stay on top of it and let your onc know if the prednisone (at the current dose) isn't doing the trick. (I think I was up to 160 mg at one point–and I also needed prednisone by IV in the beginning.) There is research to the effect that prednisone does not inhibit the response to immunotherapy.
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- March 6, 2016 at 12:22 am
Thanks for the info.
The 80 mg prednisone does not seem to be helping much. Once or twice a week the colitis gets me bad. You may be right regarding the Yervoy at the 4th infusion. I hope not but how much can you lay into your system? It would be great if they could counterbalance with something thought. IV's of Dexamethasone and and anti nausea daily!!!! Anything! Well see. Thanks for your input and all others on board.
Scott.
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- March 6, 2016 at 12:22 am
Thanks for the info.
The 80 mg prednisone does not seem to be helping much. Once or twice a week the colitis gets me bad. You may be right regarding the Yervoy at the 4th infusion. I hope not but how much can you lay into your system? It would be great if they could counterbalance with something thought. IV's of Dexamethasone and and anti nausea daily!!!! Anything! Well see. Thanks for your input and all others on board.
Scott.
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- March 6, 2016 at 12:22 am
Thanks for the info.
The 80 mg prednisone does not seem to be helping much. Once or twice a week the colitis gets me bad. You may be right regarding the Yervoy at the 4th infusion. I hope not but how much can you lay into your system? It would be great if they could counterbalance with something thought. IV's of Dexamethasone and and anti nausea daily!!!! Anything! Well see. Thanks for your input and all others on board.
Scott.
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- February 28, 2016 at 11:03 pm
Scott, see Celeste's recent blog post (on her personal blog)–close to 70% of patients with grade 3-4 adverse reactions (like colitis) see a benefit from ipi/nivo. That said, your onc will likely hold the 4th infusion of ipi. You'll likely continue on nivo once the colitis is resolved and you're able to taper off of the prednisone. I had ipi-induced colitis after my 3rd ipi infusion in 2014. Not fun, but it does eventually resolve. Stay on top of it and let your onc know if the prednisone (at the current dose) isn't doing the trick. (I think I was up to 160 mg at one point–and I also needed prednisone by IV in the beginning.) There is research to the effect that prednisone does not inhibit the response to immunotherapy.
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- February 29, 2016 at 5:07 pm
Thank you for sharing Scott. I hope it all works in the end too. From the responses I've gotten it does appear that side effects do vary for each person. After the 3rd ipi/nivo combo infusion the side effects hit hard. My husband had severe headaches, severe fatigue, and mild diahrea and nausia. I say had because the prednisone has helped with these side effects. He is currently on 5MG a day, and will be talking to his Onc about tapering down soon. My husband wants to stop taking the oral steriods because he doesn't want it to interefere with his treatment; but for now he needs them to deal with the side effects just to be able to get through the day.
He will have another infusion of Nivo this Wed and we will look more closely at his blood results. I got a post that my husband's loss of appetite and fatigue may be caused by damage to his anterior pitiutary gland, which we will ask the nurse about. Unfortunately we don't get to see the Onc at each infustion.
Hope for the best to you!
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- February 29, 2016 at 5:07 pm
Thank you for sharing Scott. I hope it all works in the end too. From the responses I've gotten it does appear that side effects do vary for each person. After the 3rd ipi/nivo combo infusion the side effects hit hard. My husband had severe headaches, severe fatigue, and mild diahrea and nausia. I say had because the prednisone has helped with these side effects. He is currently on 5MG a day, and will be talking to his Onc about tapering down soon. My husband wants to stop taking the oral steriods because he doesn't want it to interefere with his treatment; but for now he needs them to deal with the side effects just to be able to get through the day.
He will have another infusion of Nivo this Wed and we will look more closely at his blood results. I got a post that my husband's loss of appetite and fatigue may be caused by damage to his anterior pitiutary gland, which we will ask the nurse about. Unfortunately we don't get to see the Onc at each infustion.
Hope for the best to you!
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- February 29, 2016 at 5:07 pm
Thank you for sharing Scott. I hope it all works in the end too. From the responses I've gotten it does appear that side effects do vary for each person. After the 3rd ipi/nivo combo infusion the side effects hit hard. My husband had severe headaches, severe fatigue, and mild diahrea and nausia. I say had because the prednisone has helped with these side effects. He is currently on 5MG a day, and will be talking to his Onc about tapering down soon. My husband wants to stop taking the oral steriods because he doesn't want it to interefere with his treatment; but for now he needs them to deal with the side effects just to be able to get through the day.
He will have another infusion of Nivo this Wed and we will look more closely at his blood results. I got a post that my husband's loss of appetite and fatigue may be caused by damage to his anterior pitiutary gland, which we will ask the nurse about. Unfortunately we don't get to see the Onc at each infustion.
Hope for the best to you!
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- February 28, 2016 at 3:11 pm
Hi Emi, hope it all works in the end.
I am on Ippi/Nivo now. I have had 3 infusions so far with not to bad of side effects other than colitis that has ramped up a lot since the 3rd infusion. I am now on 80 mg prednisone daily for that but have had some of the worst diahrea, nausia and vomiting to date. I don't know if it is the pred or the treatment at this point. If he can not control the colitis he may postpone my 4th infusion and I do not want that. The 4 combo infusions are followed by Nivo alone as in your case.
Best of luck to you and yours,
Open for anyone else with similur side effects cause and effect.
-
- March 1, 2016 at 1:26 am
Hi there –
Like your husband, I am in Stage IV melanoma too and have recently finished 4 infusions of the ippy/nivo combo. My side effects were very different however, and apparently fall in the "rare" category. Within a week of the first dose, I had a full-body rash, a touch of colitis, and then uveitis (retina detachment of both eyes) and was sent to the hospital to take steroids by infusion. There was a big gap between first and second dose, as I had to go on and off the steroids gradually and then be stable a week off steroids. I had no real side effects after the second dose, inflammation of the liver after the third dose (short spurt of oral steroids treated that one), and now, after the fourth dose, I am over 5 weeks with pneuminitis. I took another short sport of oral steroids with the pneuminitis but now they are trying to keep me off them so I can start the nivo only maintenance regiment.
Fom what I understand, and as others have responded here, every person responds differently to any one of these doses….as the patient it's really hard to grasp and hold onto expectations because everything about this disease and its treatment is unpredictable.
My oncologist advises me to: 1) understand that anything can happen at any time, and 2) best thing I could do is "chill" …. I hear her, but can assure you that people like me who like to plan and schedule, and need closure, have a hard time digesting all this. I imagine it could be equally challenging for loved ones!
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- March 1, 2016 at 2:57 am
Thank you for sharing. It is hard to manage when you don't know what to expect from side effects. My husband went from a healthy guy who probably saw the doctor once a year to every other week, so it has been difficult for him, actually difficult for both of us. We are hoping his side effects will decrease now that he is on the nivo maintenance regiment. My husband said the nivo only regiment will continue indefinitely.
Good luck with your treatment.
-
- March 1, 2016 at 2:57 am
Thank you for sharing. It is hard to manage when you don't know what to expect from side effects. My husband went from a healthy guy who probably saw the doctor once a year to every other week, so it has been difficult for him, actually difficult for both of us. We are hoping his side effects will decrease now that he is on the nivo maintenance regiment. My husband said the nivo only regiment will continue indefinitely.
Good luck with your treatment.
-
- March 1, 2016 at 1:55 pm
I understand how your husband feels – I too was knock-on-wood-healthy until I got this whopper of a diagnosis. In fact, I had just sailed through my annual doctor appointments and thought I had another year of free sailing health-wise … now I'm at the local cancer center 1-2x/week.
I hope your husband's side effects wind down soon. If I get on the nivo-only maintenance routine, I was told it would be for up to one year since my first 2-combo infusion. But I'm still trying to figure out whether the maintenance is worth it, if the scans are clear? Why not wait until the disease progresses and then get back on the drug(s) then? It's over a month since the pneuminitus hit me and I'm pretty much homebound because the only time I can breath normal is when I'm at rest. My life is on hold until the drugs get out of my system, it seems…
-
- March 1, 2016 at 1:55 pm
I understand how your husband feels – I too was knock-on-wood-healthy until I got this whopper of a diagnosis. In fact, I had just sailed through my annual doctor appointments and thought I had another year of free sailing health-wise … now I'm at the local cancer center 1-2x/week.
I hope your husband's side effects wind down soon. If I get on the nivo-only maintenance routine, I was told it would be for up to one year since my first 2-combo infusion. But I'm still trying to figure out whether the maintenance is worth it, if the scans are clear? Why not wait until the disease progresses and then get back on the drug(s) then? It's over a month since the pneuminitus hit me and I'm pretty much homebound because the only time I can breath normal is when I'm at rest. My life is on hold until the drugs get out of my system, it seems…
-
- March 1, 2016 at 1:55 pm
I understand how your husband feels – I too was knock-on-wood-healthy until I got this whopper of a diagnosis. In fact, I had just sailed through my annual doctor appointments and thought I had another year of free sailing health-wise … now I'm at the local cancer center 1-2x/week.
I hope your husband's side effects wind down soon. If I get on the nivo-only maintenance routine, I was told it would be for up to one year since my first 2-combo infusion. But I'm still trying to figure out whether the maintenance is worth it, if the scans are clear? Why not wait until the disease progresses and then get back on the drug(s) then? It's over a month since the pneuminitus hit me and I'm pretty much homebound because the only time I can breath normal is when I'm at rest. My life is on hold until the drugs get out of my system, it seems…
-
- March 1, 2016 at 1:56 pm
I understand how your husband feels – I too was knock-on-wood-healthy until I got this whopper of a diagnosis. In fact, I had just sailed through my annual doctor appointments and thought I had another year of free sailing health-wise … now I'm at the local cancer center 1-2x/week.
I hope your husband's side effects wind down soon. If I get on the nivo-only maintenance routine, I was told it would be for up to one year since my first 2-combo infusion. But I'm still trying to figure out whether the maintenance is worth it, if the scans are clear? Why not wait until the disease progresses and then get back on the drug(s) then? It's over a month since the pneuminitus hit me and I'm pretty much homebound because the only time I can breath normal is when I'm at rest. My life is on hold until the drugs get out of my system, it seems…
-
- March 1, 2016 at 1:56 pm
I understand how your husband feels – I too was knock-on-wood-healthy until I got this whopper of a diagnosis. In fact, I had just sailed through my annual doctor appointments and thought I had another year of free sailing health-wise … now I'm at the local cancer center 1-2x/week.
I hope your husband's side effects wind down soon. If I get on the nivo-only maintenance routine, I was told it would be for up to one year since my first 2-combo infusion. But I'm still trying to figure out whether the maintenance is worth it, if the scans are clear? Why not wait until the disease progresses and then get back on the drug(s) then? It's over a month since the pneuminitus hit me and I'm pretty much homebound because the only time I can breath normal is when I'm at rest. My life is on hold until the drugs get out of my system, it seems…
-
- March 1, 2016 at 1:56 pm
I understand how your husband feels – I too was knock-on-wood-healthy until I got this whopper of a diagnosis. In fact, I had just sailed through my annual doctor appointments and thought I had another year of free sailing health-wise … now I'm at the local cancer center 1-2x/week.
I hope your husband's side effects wind down soon. If I get on the nivo-only maintenance routine, I was told it would be for up to one year since my first 2-combo infusion. But I'm still trying to figure out whether the maintenance is worth it, if the scans are clear? Why not wait until the disease progresses and then get back on the drug(s) then? It's over a month since the pneuminitus hit me and I'm pretty much homebound because the only time I can breath normal is when I'm at rest. My life is on hold until the drugs get out of my system, it seems…
-
- March 1, 2016 at 2:57 am
Thank you for sharing. It is hard to manage when you don't know what to expect from side effects. My husband went from a healthy guy who probably saw the doctor once a year to every other week, so it has been difficult for him, actually difficult for both of us. We are hoping his side effects will decrease now that he is on the nivo maintenance regiment. My husband said the nivo only regiment will continue indefinitely.
Good luck with your treatment.
-
- March 1, 2016 at 1:26 am
Hi there –
Like your husband, I am in Stage IV melanoma too and have recently finished 4 infusions of the ippy/nivo combo. My side effects were very different however, and apparently fall in the "rare" category. Within a week of the first dose, I had a full-body rash, a touch of colitis, and then uveitis (retina detachment of both eyes) and was sent to the hospital to take steroids by infusion. There was a big gap between first and second dose, as I had to go on and off the steroids gradually and then be stable a week off steroids. I had no real side effects after the second dose, inflammation of the liver after the third dose (short spurt of oral steroids treated that one), and now, after the fourth dose, I am over 5 weeks with pneuminitis. I took another short sport of oral steroids with the pneuminitis but now they are trying to keep me off them so I can start the nivo only maintenance regiment.
Fom what I understand, and as others have responded here, every person responds differently to any one of these doses….as the patient it's really hard to grasp and hold onto expectations because everything about this disease and its treatment is unpredictable.
My oncologist advises me to: 1) understand that anything can happen at any time, and 2) best thing I could do is "chill" …. I hear her, but can assure you that people like me who like to plan and schedule, and need closure, have a hard time digesting all this. I imagine it could be equally challenging for loved ones!
-
- March 1, 2016 at 1:26 am
Hi there –
Like your husband, I am in Stage IV melanoma too and have recently finished 4 infusions of the ippy/nivo combo. My side effects were very different however, and apparently fall in the "rare" category. Within a week of the first dose, I had a full-body rash, a touch of colitis, and then uveitis (retina detachment of both eyes) and was sent to the hospital to take steroids by infusion. There was a big gap between first and second dose, as I had to go on and off the steroids gradually and then be stable a week off steroids. I had no real side effects after the second dose, inflammation of the liver after the third dose (short spurt of oral steroids treated that one), and now, after the fourth dose, I am over 5 weeks with pneuminitis. I took another short sport of oral steroids with the pneuminitis but now they are trying to keep me off them so I can start the nivo only maintenance regiment.
Fom what I understand, and as others have responded here, every person responds differently to any one of these doses….as the patient it's really hard to grasp and hold onto expectations because everything about this disease and its treatment is unpredictable.
My oncologist advises me to: 1) understand that anything can happen at any time, and 2) best thing I could do is "chill" …. I hear her, but can assure you that people like me who like to plan and schedule, and need closure, have a hard time digesting all this. I imagine it could be equally challenging for loved ones!
-
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