Yervoy Side Affects

I wish the best for your recovery to "normal" life Cindy! Sorry, I don't have answers, but appreciate you sharing as I start Yervoy tomorrow! I look forward to reading others replies to your post!

Keep up the fight, and Never Give Up!

Aloha!

I wish the best for your recovery to "normal" life Cindy! Sorry, I don't have answers, but appreciate you sharing as I start Yervoy tomorrow! I look forward to reading others replies to your post!

Keep up the fight, and Never Give Up!

Aloha!

I wish the best for your recovery to "normal" life Cindy! Sorry, I don't have answers, but appreciate you sharing as I start Yervoy tomorrow! I look forward to reading others replies to your post!

Keep up the fight, and Never Give Up!

Aloha!

Hey Cindy,

Congrats on your wonderful results.  I didn't experience the extreme fatigue you described but I have heard others say they experienced something like that.  What seems a little unusual to me in your case is the fact you are experiencing the fatigue a month after stopping the treatment.  It's possible in could be a endocrine side effect.  Ipi can cause some wacky things with the endocrine system.  Have you had any blood work to check things like your thyroid and hormone levels?  Hope it's only a temporary thing and those great scan reports keep coming back.

Brian

Hey Cindy,

Congrats on your wonderful results.  I didn't experience the extreme fatigue you described but I have heard others say they experienced something like that.  What seems a little unusual to me in your case is the fact you are experiencing the fatigue a month after stopping the treatment.  It's possible in could be a endocrine side effect.  Ipi can cause some wacky things with the endocrine system.  Have you had any blood work to check things like your thyroid and hormone levels?  Hope it's only a temporary thing and those great scan reports keep coming back.

Brian

Hey Cindy,

Congrats on your wonderful results.  I didn't experience the extreme fatigue you described but I have heard others say they experienced something like that.  What seems a little unusual to me in your case is the fact you are experiencing the fatigue a month after stopping the treatment.  It's possible in could be a endocrine side effect.  Ipi can cause some wacky things with the endocrine system.  Have you had any blood work to check things like your thyroid and hormone levels?  Hope it's only a temporary thing and those great scan reports keep coming back.

Brian

Hi Cindy, 

Congratulations on a very strong response!!!

When I got IPI in 2011 I didn't hit any strong side effects, either at the time or later. I did already have a non-Yervoy-related (neurological) kind of ongoing fatigue, but from earlier causes.

Whenever I run into any significant changes with this disease, I contact my oncologist. 

The Yervoy safety info says that in general "side effects are most likely to begin during treatment; however, side effects can show up months after your last infusion." I guess whether "simple" fatigue (although that sounds pretty strong), or like Brian brings up, a possible symptom of one of the various "-itis" IPI side effects (since this is so close to your treatment), or any non-IPI-related cause.

In this situation I would contact my onc for sure — if you haven't already.

– Kyle

Hi Cindy, 

Congratulations on a very strong response!!!

When I got IPI in 2011 I didn't hit any strong side effects, either at the time or later. I did already have a non-Yervoy-related (neurological) kind of ongoing fatigue, but from earlier causes.

Whenever I run into any significant changes with this disease, I contact my oncologist. 

The Yervoy safety info says that in general "side effects are most likely to begin during treatment; however, side effects can show up months after your last infusion." I guess whether "simple" fatigue (although that sounds pretty strong), or like Brian brings up, a possible symptom of one of the various "-itis" IPI side effects (since this is so close to your treatment), or any non-IPI-related cause.

In this situation I would contact my onc for sure — if you haven't already.

– Kyle

Hi Cindy, 

Congratulations on a very strong response!!!

When I got IPI in 2011 I didn't hit any strong side effects, either at the time or later. I did already have a non-Yervoy-related (neurological) kind of ongoing fatigue, but from earlier causes.

Whenever I run into any significant changes with this disease, I contact my oncologist. 

The Yervoy safety info says that in general "side effects are most likely to begin during treatment; however, side effects can show up months after your last infusion." I guess whether "simple" fatigue (although that sounds pretty strong), or like Brian brings up, a possible symptom of one of the various "-itis" IPI side effects (since this is so close to your treatment), or any non-IPI-related cause.

In this situation I would contact my onc for sure — if you haven't already.

– Kyle

Fatigue is such a tricky beast.  With ipi, I also experienced fatigue as probably the most significant side effect.  It wasn't completely debilitating to the point where I felt like I couldn't get out of bed, but I felt pretty wiped some days.  It was at it's worst the day of and the day or two after each infusion and I also noticed that it was cumulative, so after the second dose was worse than after the first, after the third worse than the second, etc.  And there was lingering fatigue for a good month or so after the last dose.  Again, not complete exhaustion, but I needed to get a nap or two every day.

After all of the treatments I've had, fatigue is still such a hard thing to pinpoint.  It's definitely a side effect of so many things, whether immunotherapies, chemotherapies, radiation, or surgery.  And there's also a mental/emotional component to it, and the physical manifestation can be a dog-chasing-its-tail:  the less exercise, the less energy, which leads to even lesser exercise, etc.  Pile on the paradox of sleeplessness, being exhausted but unable to sleep at night because of racing thoughts, and it's a real mess!  All told, it's probably fair to say that each person is different, and by no means diminishing the fact that ipi can cause fatigue (it did for me), but there are many factors that contribute to fatigue.

But to partially respond to your specific question, I had Yervoy-related fatigue that seemed to escalate after each of the four doses in the treatment cycle and then take progressively longer to improve.  Following my last dose, it was I'd say 4-6 weeks before I felt like my fatigue levels were back to "normal" (not to say my fatigue was gone, only that it was more in line with the fatigue of living with Stage IV melanoma day-in and day-out).

Fatigue is such a tricky beast.  With ipi, I also experienced fatigue as probably the most significant side effect.  It wasn't completely debilitating to the point where I felt like I couldn't get out of bed, but I felt pretty wiped some days.  It was at it's worst the day of and the day or two after each infusion and I also noticed that it was cumulative, so after the second dose was worse than after the first, after the third worse than the second, etc.  And there was lingering fatigue for a good month or so after the last dose.  Again, not complete exhaustion, but I needed to get a nap or two every day.

After all of the treatments I've had, fatigue is still such a hard thing to pinpoint.  It's definitely a side effect of so many things, whether immunotherapies, chemotherapies, radiation, or surgery.  And there's also a mental/emotional component to it, and the physical manifestation can be a dog-chasing-its-tail:  the less exercise, the less energy, which leads to even lesser exercise, etc.  Pile on the paradox of sleeplessness, being exhausted but unable to sleep at night because of racing thoughts, and it's a real mess!  All told, it's probably fair to say that each person is different, and by no means diminishing the fact that ipi can cause fatigue (it did for me), but there are many factors that contribute to fatigue.

But to partially respond to your specific question, I had Yervoy-related fatigue that seemed to escalate after each of the four doses in the treatment cycle and then take progressively longer to improve.  Following my last dose, it was I'd say 4-6 weeks before I felt like my fatigue levels were back to "normal" (not to say my fatigue was gone, only that it was more in line with the fatigue of living with Stage IV melanoma day-in and day-out).

Fatigue is such a tricky beast.  With ipi, I also experienced fatigue as probably the most significant side effect.  It wasn't completely debilitating to the point where I felt like I couldn't get out of bed, but I felt pretty wiped some days.  It was at it's worst the day of and the day or two after each infusion and I also noticed that it was cumulative, so after the second dose was worse than after the first, after the third worse than the second, etc.  And there was lingering fatigue for a good month or so after the last dose.  Again, not complete exhaustion, but I needed to get a nap or two every day.

After all of the treatments I've had, fatigue is still such a hard thing to pinpoint.  It's definitely a side effect of so many things, whether immunotherapies, chemotherapies, radiation, or surgery.  And there's also a mental/emotional component to it, and the physical manifestation can be a dog-chasing-its-tail:  the less exercise, the less energy, which leads to even lesser exercise, etc.  Pile on the paradox of sleeplessness, being exhausted but unable to sleep at night because of racing thoughts, and it's a real mess!  All told, it's probably fair to say that each person is different, and by no means diminishing the fact that ipi can cause fatigue (it did for me), but there are many factors that contribute to fatigue.

But to partially respond to your specific question, I had Yervoy-related fatigue that seemed to escalate after each of the four doses in the treatment cycle and then take progressively longer to improve.  Following my last dose, it was I'd say 4-6 weeks before I felt like my fatigue levels were back to "normal" (not to say my fatigue was gone, only that it was more in line with the fatigue of living with Stage IV melanoma day-in and day-out).

Cindy, I experienced the fatigue you are talking about.

My best advice to you would contact your Dr as soon as possible. My fatigue was caused by Adrenal Insufficency. After collasping in the Dr's office and spending the night in the hospital I was tested and prescribed Hydrocortisone. The fatigue let up along with the headaches I had.

3 months later I'm still on the hydrocortisone.

I would definetely take this serious and not take any chances

Rod

Cindy, I experienced the fatigue you are talking about.

My best advice to you would contact your Dr as soon as possible. My fatigue was caused by Adrenal Insufficency. After collasping in the Dr's office and spending the night in the hospital I was tested and prescribed Hydrocortisone. The fatigue let up along with the headaches I had.

3 months later I'm still on the hydrocortisone.

I would definetely take this serious and not take any chances

Rod

Cindy, I experienced the fatigue you are talking about.

My best advice to you would contact your Dr as soon as possible. My fatigue was caused by Adrenal Insufficency. After collasping in the Dr's office and spending the night in the hospital I was tested and prescribed Hydrocortisone. The fatigue let up along with the headaches I had.

3 months later I'm still on the hydrocortisone.

I would definetely take this serious and not take any chances

Rod

I experienced very mild fatigue after my first two infusions, more after the thid and fourth.  Though not as dramatic over the long haul, my situation made a napper out of me for the first time in my life and became a regular part of my life as the months after the treatment passed.  Even later, maybe even 9 months after the end of the Yervoy treatment I ended up with symptoms such as severe and almost constant shaking and exhaustion that were finally diagnosed as being caused by hyperthyroidism.  Though one could conceivably attribute the onset to other causes or wonder as the endocrinologist I have ended up working with to "get back to normal" instead of the Yervoy, my oncologist, who is very knowledeable of Yervoy conisders it to be a late reaction.  I also have hypphysitis, another autoimmune disorder, which he also believes could be a byproduct of Yervoy.  Good news is that my intense reactions to the drug probably have helped my non-recurrence of melanoma over the last 13 months.  Bad news is that these are serious side effects causing major physical changes.  I no longer have a thyroid gland.  Burned away by radioactive iodine.  I do not know the future of my pituitary gland.  I am now hypothyroid and will be so for life.  I will have to be very careful about taking any more immunological therapy.  I am on hydrocortisone.  May have to be on some type of cortisone-like drug for life if my pituitary does not ome back.  Worth it, I belive given the good results on the melanoma.  But much of this whole post is in the realm of speculation as far as causes is concerned.  New territory for the medicine men, for sure.

I experienced very mild fatigue after my first two infusions, more after the thid and fourth.  Though not as dramatic over the long haul, my situation made a napper out of me for the first time in my life and became a regular part of my life as the months after the treatment passed.  Even later, maybe even 9 months after the end of the Yervoy treatment I ended up with symptoms such as severe and almost constant shaking and exhaustion that were finally diagnosed as being caused by hyperthyroidism.  Though one could conceivably attribute the onset to other causes or wonder as the endocrinologist I have ended up working with to "get back to normal" instead of the Yervoy, my oncologist, who is very knowledeable of Yervoy conisders it to be a late reaction.  I also have hypphysitis, another autoimmune disorder, which he also believes could be a byproduct of Yervoy.  Good news is that my intense reactions to the drug probably have helped my non-recurrence of melanoma over the last 13 months.  Bad news is that these are serious side effects causing major physical changes.  I no longer have a thyroid gland.  Burned away by radioactive iodine.  I do not know the future of my pituitary gland.  I am now hypothyroid and will be so for life.  I will have to be very careful about taking any more immunological therapy.  I am on hydrocortisone.  May have to be on some type of cortisone-like drug for life if my pituitary does not ome back.  Worth it, I belive given the good results on the melanoma.  But much of this whole post is in the realm of speculation as far as causes is concerned.  New territory for the medicine men, for sure.

I experienced very mild fatigue after my first two infusions, more after the thid and fourth.  Though not as dramatic over the long haul, my situation made a napper out of me for the first time in my life and became a regular part of my life as the months after the treatment passed.  Even later, maybe even 9 months after the end of the Yervoy treatment I ended up with symptoms such as severe and almost constant shaking and exhaustion that were finally diagnosed as being caused by hyperthyroidism.  Though one could conceivably attribute the onset to other causes or wonder as the endocrinologist I have ended up working with to "get back to normal" instead of the Yervoy, my oncologist, who is very knowledeable of Yervoy conisders it to be a late reaction.  I also have hypphysitis, another autoimmune disorder, which he also believes could be a byproduct of Yervoy.  Good news is that my intense reactions to the drug probably have helped my non-recurrence of melanoma over the last 13 months.  Bad news is that these are serious side effects causing major physical changes.  I no longer have a thyroid gland.  Burned away by radioactive iodine.  I do not know the future of my pituitary gland.  I am now hypothyroid and will be so for life.  I will have to be very careful about taking any more immunological therapy.  I am on hydrocortisone.  May have to be on some type of cortisone-like drug for life if my pituitary does not ome back.  Worth it, I belive given the good results on the melanoma.  But much of this whole post is in the realm of speculation as far as causes is concerned.  New territory for the medicine men, for sure.