› Forums › General Melanoma Community › Keytruda Fatigue
- This topic has 42 replies, 6 voices, and was last updated 8 years, 9 months ago by
Bubbles.
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- July 10, 2015 at 11:25 pm
Hi there and happy Friday!
My fiance, Dave, was recently diagnosed with stage IV melanoma. Unfortunately, this is not my first rodeo with this disease, as my stepfather was diagnosed in 2012 with metastatic melanoma as well (he's doing great! Treated with high dose IL-2 and has been NED for a full year now. Yay!). Anyways, I am on here almost daily reading posts and sharing your stories with Dave. He is encouraged by the success stories and finds comfort that he isn't the only one fighting this awful disease (melanoma [and cancer, in general I think!] can make you feel so isolated and alone!). Thank you all for that – it is so helpful.
Dave wanted me to reach out to see what other people have experienced on Keytruda/Pembro or Opdivo. He received his first dose of Keytruda on July 1 and has been absolutely exhausted since the infusion. Prior to his diagnosis, Dave was an extremely active guy – he played baseball, softball, golfed, and went to the gym regularly (he is only 35!). He of course doesn't have nearly the energy he had before, but he wanted to know if anyone else's oncologists recommended exercising as much as possible while going through treatment or to let his body rest. I would think that exercise and movement would be helpful for added healing, but wanted to hear what others had to say. 🙂
Regarding his other side effects, he's had some migraines (he has multiple small brain lesions and had a craniotomy on June 9) which we have been told are normal and to be expected by his neurologist and oncologists.
Thanks again to all of you wonderful people for your stories and support! You make recently diagnosed individuals not feel so lost and alone, and, most importantly, give us hope.
Best wishes,
Katie
- Replies
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- July 11, 2015 at 12:31 am
On keytruda the first 10 days were a little rough. Fatigue, fevers groggy. Then that was pretty much it except the occasional fever up to 101.
On opdivo I've only had 5 doses and after the 2nd dose I've felt crummy. Stomach queezy and threw up once. Fevers up to 102.2. Just not feeling very good.
But everyone is different. I would think the more active he can be the better but get a good nights sleep too. But that's just my opinion.
Artie
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- July 11, 2015 at 12:31 am
On keytruda the first 10 days were a little rough. Fatigue, fevers groggy. Then that was pretty much it except the occasional fever up to 101.
On opdivo I've only had 5 doses and after the 2nd dose I've felt crummy. Stomach queezy and threw up once. Fevers up to 102.2. Just not feeling very good.
But everyone is different. I would think the more active he can be the better but get a good nights sleep too. But that's just my opinion.
Artie
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- July 11, 2015 at 1:37 am
I was on Keytruda for a year and have only recently stopped the infusions because I'm now NED. (Stopped in June. I had melanoma all over the place too!!! Including my brain.) At first I felt a lot of fatigue, had some fevers, and a very itchy rash. My skin lost a lot of pigment…freckles faded and I'm as white as snow! I also had red itchy spots that would come and go. However, as time went by the side effects either dimineshed or I got used to them. I walked on my treadmill daily and have increased my time and pace. I think exercise is good but of course you need to listen to your body and speak frankly with your oncologist. I agree with Artie that a good night's sleep is sooooo important. (He and I have both had melanoma attack our spine and we know that it can cause sleepless nights, anxiety, pain, and we intend to come out on the winning side.) Since I've been on immunotherapy I require more sleep and am not the early bird I used to be. That too is improving. Keytruda has been a wonderful drug for me!!!!! Good luck to him!!!!!! Keep the faith!
Best wishes!
Terrie
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- July 11, 2015 at 2:14 am
One more thing I'd like to add…it has only been a little over a month since his craniotomy so that will add to his fatigue. I had a craniotomy and while it wasn't as bad as my spinal surgery, it took a lot out of me and I had to ease back into activities. It's a lot to go through plus his body is fighting. I reread your post and realized that I should have mentioned the craniotomy in my first post. Recovery from major surgery is not easy and it requires rest, a good diet, and taking time to recover.
All in good time!
Terrie
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- July 11, 2015 at 2:14 am
One more thing I'd like to add…it has only been a little over a month since his craniotomy so that will add to his fatigue. I had a craniotomy and while it wasn't as bad as my spinal surgery, it took a lot out of me and I had to ease back into activities. It's a lot to go through plus his body is fighting. I reread your post and realized that I should have mentioned the craniotomy in my first post. Recovery from major surgery is not easy and it requires rest, a good diet, and taking time to recover.
All in good time!
Terrie
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- July 11, 2015 at 2:14 am
One more thing I'd like to add…it has only been a little over a month since his craniotomy so that will add to his fatigue. I had a craniotomy and while it wasn't as bad as my spinal surgery, it took a lot out of me and I had to ease back into activities. It's a lot to go through plus his body is fighting. I reread your post and realized that I should have mentioned the craniotomy in my first post. Recovery from major surgery is not easy and it requires rest, a good diet, and taking time to recover.
All in good time!
Terrie
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- July 11, 2015 at 1:37 am
I was on Keytruda for a year and have only recently stopped the infusions because I'm now NED. (Stopped in June. I had melanoma all over the place too!!! Including my brain.) At first I felt a lot of fatigue, had some fevers, and a very itchy rash. My skin lost a lot of pigment…freckles faded and I'm as white as snow! I also had red itchy spots that would come and go. However, as time went by the side effects either dimineshed or I got used to them. I walked on my treadmill daily and have increased my time and pace. I think exercise is good but of course you need to listen to your body and speak frankly with your oncologist. I agree with Artie that a good night's sleep is sooooo important. (He and I have both had melanoma attack our spine and we know that it can cause sleepless nights, anxiety, pain, and we intend to come out on the winning side.) Since I've been on immunotherapy I require more sleep and am not the early bird I used to be. That too is improving. Keytruda has been a wonderful drug for me!!!!! Good luck to him!!!!!! Keep the faith!
Best wishes!
Terrie
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- July 11, 2015 at 1:37 am
I was on Keytruda for a year and have only recently stopped the infusions because I'm now NED. (Stopped in June. I had melanoma all over the place too!!! Including my brain.) At first I felt a lot of fatigue, had some fevers, and a very itchy rash. My skin lost a lot of pigment…freckles faded and I'm as white as snow! I also had red itchy spots that would come and go. However, as time went by the side effects either dimineshed or I got used to them. I walked on my treadmill daily and have increased my time and pace. I think exercise is good but of course you need to listen to your body and speak frankly with your oncologist. I agree with Artie that a good night's sleep is sooooo important. (He and I have both had melanoma attack our spine and we know that it can cause sleepless nights, anxiety, pain, and we intend to come out on the winning side.) Since I've been on immunotherapy I require more sleep and am not the early bird I used to be. That too is improving. Keytruda has been a wonderful drug for me!!!!! Good luck to him!!!!!! Keep the faith!
Best wishes!
Terrie
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- July 11, 2015 at 12:31 am
On keytruda the first 10 days were a little rough. Fatigue, fevers groggy. Then that was pretty much it except the occasional fever up to 101.
On opdivo I've only had 5 doses and after the 2nd dose I've felt crummy. Stomach queezy and threw up once. Fevers up to 102.2. Just not feeling very good.
But everyone is different. I would think the more active he can be the better but get a good nights sleep too. But that's just my opinion.
Artie
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- July 11, 2015 at 3:19 am
I am on the ipi/nivo combo trial, but only had one infusion of the two because of fevers and vomiting and thyroid issues. Since then, I have only had the nivo. Yesterday was my 7th infusion overall, and my side effects have been minor. GI issues are my biggest concern. I've also had hair thinning, peeling hands and feet, and joint aches and swelling. I'm still working 40 hour weeks, most of which is on my feet. Some days are absolutely exhausting. I used to work out nearly every day (lost over 40 lbs last year!) and am trying now to drum up the energy to do so again. I do walk on the treadmill every few days, and am trying to build up my workouts from there. My oncologist encourages me to workout, and also to get adequate rest. However, I've never had any brain mets, so I cannot comment on those types of side effects. My best wishes to you and your family!
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- July 11, 2015 at 3:19 am
I am on the ipi/nivo combo trial, but only had one infusion of the two because of fevers and vomiting and thyroid issues. Since then, I have only had the nivo. Yesterday was my 7th infusion overall, and my side effects have been minor. GI issues are my biggest concern. I've also had hair thinning, peeling hands and feet, and joint aches and swelling. I'm still working 40 hour weeks, most of which is on my feet. Some days are absolutely exhausting. I used to work out nearly every day (lost over 40 lbs last year!) and am trying now to drum up the energy to do so again. I do walk on the treadmill every few days, and am trying to build up my workouts from there. My oncologist encourages me to workout, and also to get adequate rest. However, I've never had any brain mets, so I cannot comment on those types of side effects. My best wishes to you and your family!
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- July 11, 2015 at 3:19 am
I am on the ipi/nivo combo trial, but only had one infusion of the two because of fevers and vomiting and thyroid issues. Since then, I have only had the nivo. Yesterday was my 7th infusion overall, and my side effects have been minor. GI issues are my biggest concern. I've also had hair thinning, peeling hands and feet, and joint aches and swelling. I'm still working 40 hour weeks, most of which is on my feet. Some days are absolutely exhausting. I used to work out nearly every day (lost over 40 lbs last year!) and am trying now to drum up the energy to do so again. I do walk on the treadmill every few days, and am trying to build up my workouts from there. My oncologist encourages me to workout, and also to get adequate rest. However, I've never had any brain mets, so I cannot comment on those types of side effects. My best wishes to you and your family!
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- July 11, 2015 at 12:46 pm
Hi Katie (and Dave),
Goodness gracious, Katie! Supporter for two melanoma peeps is quite a load! I was first diagnosed with melanoma in 2003 (superficial but with a positive node), again in 2007 (superficial, negative nodes), then with lung and brain mets (surgically removed and zapped respectively) in 2010. Also started 2 1/2 years of a Nivo/Opdivo trial in 2010. I have been NED since 2010 with my last dose of nivo in June of 2013. Here is a post I made regarding anti-PD1 side effects generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
If you are in need of a sleeping tonic…then, this post is for you! Here I reviewed my blog and checked when my various signs and symptoms showed up. It was enlightening to see through that documentation when and how various side effects appeared (my memory had dimmed their magnitude and pushed back their timing…perhaps that is a good and consoling thing????!): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html
I took nivo every 2 weeks for 6 months, then every 3 months for 2 years. During that time I missed only 3 days of work, which was 3 twelve hour shifts per week as a pediatric nurse practitioner at a busy pediatric office. As I recall, all the absences were on a Monday…which makes sense as my infusions were always on a Friday. My doc never really advised me regarding exercise one way or another though he always asked about it in order to evaluate my level of fatigue…something known to be a problem with these meds. Many of my fellow ratties did not work at all while taking the drug, though some did. I have always been very active, a runner, etc. So…I pushed through during my trial. I don't know that that is the best choice for everyone. There were certainly times when exercise was NOT an option. I just couldn't do it! But, folks say I am VERY stubborn! Hmmm… Mostly, I just wasn't going to give melanoma (or the treatment for it) my life…if at all possible. I think Dave is dealing with much more than just anti-PD1 side effects since he is barely 1 month post craniotomy and surgery of any kind requires time to heal. So, while I did push myself, you have to be patient with yourself as well. For a lighter moment, to see the crazy "exercise" nuttiness you can still have in melanoma world…if you have silly, supportive peeps: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/the-melanoma-avengers.html
Hope that gave you a smile. Hang in there. You and Dave can do this!!! Wishing you my best, Celeste
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- July 11, 2015 at 12:46 pm
Hi Katie (and Dave),
Goodness gracious, Katie! Supporter for two melanoma peeps is quite a load! I was first diagnosed with melanoma in 2003 (superficial but with a positive node), again in 2007 (superficial, negative nodes), then with lung and brain mets (surgically removed and zapped respectively) in 2010. Also started 2 1/2 years of a Nivo/Opdivo trial in 2010. I have been NED since 2010 with my last dose of nivo in June of 2013. Here is a post I made regarding anti-PD1 side effects generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
If you are in need of a sleeping tonic…then, this post is for you! Here I reviewed my blog and checked when my various signs and symptoms showed up. It was enlightening to see through that documentation when and how various side effects appeared (my memory had dimmed their magnitude and pushed back their timing…perhaps that is a good and consoling thing????!): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html
I took nivo every 2 weeks for 6 months, then every 3 months for 2 years. During that time I missed only 3 days of work, which was 3 twelve hour shifts per week as a pediatric nurse practitioner at a busy pediatric office. As I recall, all the absences were on a Monday…which makes sense as my infusions were always on a Friday. My doc never really advised me regarding exercise one way or another though he always asked about it in order to evaluate my level of fatigue…something known to be a problem with these meds. Many of my fellow ratties did not work at all while taking the drug, though some did. I have always been very active, a runner, etc. So…I pushed through during my trial. I don't know that that is the best choice for everyone. There were certainly times when exercise was NOT an option. I just couldn't do it! But, folks say I am VERY stubborn! Hmmm… Mostly, I just wasn't going to give melanoma (or the treatment for it) my life…if at all possible. I think Dave is dealing with much more than just anti-PD1 side effects since he is barely 1 month post craniotomy and surgery of any kind requires time to heal. So, while I did push myself, you have to be patient with yourself as well. For a lighter moment, to see the crazy "exercise" nuttiness you can still have in melanoma world…if you have silly, supportive peeps: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/the-melanoma-avengers.html
Hope that gave you a smile. Hang in there. You and Dave can do this!!! Wishing you my best, Celeste
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- July 11, 2015 at 11:19 pm
Mat, I bet it is! My eyebrows and eyelashes turned white. Without make-up I look pretty weird but who cares!!!!! My doctor said that they like to see vitiligo in immunotherapy patients. The changes in my skin were very subtle, but my doctor is very experienced and could tell areas that show vitiligo…under my eyes and near my brows. I'm so pale now I think I could glow in the dark!
Best Wishes!!!!!
Terrie
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- July 11, 2015 at 11:19 pm
Mat, I bet it is! My eyebrows and eyelashes turned white. Without make-up I look pretty weird but who cares!!!!! My doctor said that they like to see vitiligo in immunotherapy patients. The changes in my skin were very subtle, but my doctor is very experienced and could tell areas that show vitiligo…under my eyes and near my brows. I'm so pale now I think I could glow in the dark!
Best Wishes!!!!!
Terrie
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- July 11, 2015 at 11:19 pm
Mat, I bet it is! My eyebrows and eyelashes turned white. Without make-up I look pretty weird but who cares!!!!! My doctor said that they like to see vitiligo in immunotherapy patients. The changes in my skin were very subtle, but my doctor is very experienced and could tell areas that show vitiligo…under my eyes and near my brows. I'm so pale now I think I could glow in the dark!
Best Wishes!!!!!
Terrie
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- July 11, 2015 at 11:19 pm
Mat, I bet it is! My eyebrows and eyelashes turned white. Without make-up I look pretty weird but who cares!!!!! My doctor said that they like to see vitiligo in immunotherapy patients. The changes in my skin were very subtle, but my doctor is very experienced and could tell areas that show vitiligo…under my eyes and near my brows. I'm so pale now I think I could glow in the dark!
Best Wishes!!!!!
Terrie
-
- July 11, 2015 at 11:19 pm
Mat, I bet it is! My eyebrows and eyelashes turned white. Without make-up I look pretty weird but who cares!!!!! My doctor said that they like to see vitiligo in immunotherapy patients. The changes in my skin were very subtle, but my doctor is very experienced and could tell areas that show vitiligo…under my eyes and near my brows. I'm so pale now I think I could glow in the dark!
Best Wishes!!!!!
Terrie
-
- July 11, 2015 at 11:19 pm
Mat, I bet it is! My eyebrows and eyelashes turned white. Without make-up I look pretty weird but who cares!!!!! My doctor said that they like to see vitiligo in immunotherapy patients. The changes in my skin were very subtle, but my doctor is very experienced and could tell areas that show vitiligo…under my eyes and near my brows. I'm so pale now I think I could glow in the dark!
Best Wishes!!!!!
Terrie
-
- July 11, 2015 at 11:19 pm
Mat, I bet it is! My eyebrows and eyelashes turned white. Without make-up I look pretty weird but who cares!!!!! My doctor said that they like to see vitiligo in immunotherapy patients. The changes in my skin were very subtle, but my doctor is very experienced and could tell areas that show vitiligo…under my eyes and near my brows. I'm so pale now I think I could glow in the dark!
Best Wishes!!!!!
Terrie
-
- July 11, 2015 at 11:19 pm
Mat, I bet it is! My eyebrows and eyelashes turned white. Without make-up I look pretty weird but who cares!!!!! My doctor said that they like to see vitiligo in immunotherapy patients. The changes in my skin were very subtle, but my doctor is very experienced and could tell areas that show vitiligo…under my eyes and near my brows. I'm so pale now I think I could glow in the dark!
Best Wishes!!!!!
Terrie
-
- July 11, 2015 at 11:19 pm
Mat, I bet it is! My eyebrows and eyelashes turned white. Without make-up I look pretty weird but who cares!!!!! My doctor said that they like to see vitiligo in immunotherapy patients. The changes in my skin were very subtle, but my doctor is very experienced and could tell areas that show vitiligo…under my eyes and near my brows. I'm so pale now I think I could glow in the dark!
Best Wishes!!!!!
Terrie
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- July 15, 2015 at 11:53 pm
Hi Celeste!
Thank you so much! I really appreciate your very thoughtful and detailed response. Dave is doing SO well after his surgery that he sometimes forgets that the surgery was a little over a month ago (or he'll forget he had surgery at all!)! I try to remind him that brain surgery is pretty major stuff and that it's okay for him to feel so tired. 🙂 As I'm sure you know, not feeling 100% like yourself can be a very frustrating experience.
As a side note, Dave had a PET scan on July 9 and the results are in….reduced metabolic activity in his brain, no new brain mets (or mets anywhere else!), no hypermetabolic activity in his adrenal met (and no growth), and only slight growth in his mediastinal mass. Although I know it is SUPER early and he's only had one dose, I'm pretty encouraged by this news! His adrenal mass was growing like wildfire, so it's great to hear that it hasn't grown recently!!
Again, thank you!! Your post put a big smile on his face – something I love to see. 🙂
Best,
Katie
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- July 15, 2015 at 11:53 pm
Hi Celeste!
Thank you so much! I really appreciate your very thoughtful and detailed response. Dave is doing SO well after his surgery that he sometimes forgets that the surgery was a little over a month ago (or he'll forget he had surgery at all!)! I try to remind him that brain surgery is pretty major stuff and that it's okay for him to feel so tired. 🙂 As I'm sure you know, not feeling 100% like yourself can be a very frustrating experience.
As a side note, Dave had a PET scan on July 9 and the results are in….reduced metabolic activity in his brain, no new brain mets (or mets anywhere else!), no hypermetabolic activity in his adrenal met (and no growth), and only slight growth in his mediastinal mass. Although I know it is SUPER early and he's only had one dose, I'm pretty encouraged by this news! His adrenal mass was growing like wildfire, so it's great to hear that it hasn't grown recently!!
Again, thank you!! Your post put a big smile on his face – something I love to see. 🙂
Best,
Katie
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- July 15, 2015 at 11:53 pm
Hi Celeste!
Thank you so much! I really appreciate your very thoughtful and detailed response. Dave is doing SO well after his surgery that he sometimes forgets that the surgery was a little over a month ago (or he'll forget he had surgery at all!)! I try to remind him that brain surgery is pretty major stuff and that it's okay for him to feel so tired. 🙂 As I'm sure you know, not feeling 100% like yourself can be a very frustrating experience.
As a side note, Dave had a PET scan on July 9 and the results are in….reduced metabolic activity in his brain, no new brain mets (or mets anywhere else!), no hypermetabolic activity in his adrenal met (and no growth), and only slight growth in his mediastinal mass. Although I know it is SUPER early and he's only had one dose, I'm pretty encouraged by this news! His adrenal mass was growing like wildfire, so it's great to hear that it hasn't grown recently!!
Again, thank you!! Your post put a big smile on his face – something I love to see. 🙂
Best,
Katie
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- July 11, 2015 at 12:46 pm
Hi Katie (and Dave),
Goodness gracious, Katie! Supporter for two melanoma peeps is quite a load! I was first diagnosed with melanoma in 2003 (superficial but with a positive node), again in 2007 (superficial, negative nodes), then with lung and brain mets (surgically removed and zapped respectively) in 2010. Also started 2 1/2 years of a Nivo/Opdivo trial in 2010. I have been NED since 2010 with my last dose of nivo in June of 2013. Here is a post I made regarding anti-PD1 side effects generally: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
If you are in need of a sleeping tonic…then, this post is for you! Here I reviewed my blog and checked when my various signs and symptoms showed up. It was enlightening to see through that documentation when and how various side effects appeared (my memory had dimmed their magnitude and pushed back their timing…perhaps that is a good and consoling thing????!): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html
I took nivo every 2 weeks for 6 months, then every 3 months for 2 years. During that time I missed only 3 days of work, which was 3 twelve hour shifts per week as a pediatric nurse practitioner at a busy pediatric office. As I recall, all the absences were on a Monday…which makes sense as my infusions were always on a Friday. My doc never really advised me regarding exercise one way or another though he always asked about it in order to evaluate my level of fatigue…something known to be a problem with these meds. Many of my fellow ratties did not work at all while taking the drug, though some did. I have always been very active, a runner, etc. So…I pushed through during my trial. I don't know that that is the best choice for everyone. There were certainly times when exercise was NOT an option. I just couldn't do it! But, folks say I am VERY stubborn! Hmmm… Mostly, I just wasn't going to give melanoma (or the treatment for it) my life…if at all possible. I think Dave is dealing with much more than just anti-PD1 side effects since he is barely 1 month post craniotomy and surgery of any kind requires time to heal. So, while I did push myself, you have to be patient with yourself as well. For a lighter moment, to see the crazy "exercise" nuttiness you can still have in melanoma world…if you have silly, supportive peeps: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/the-melanoma-avengers.html
Hope that gave you a smile. Hang in there. You and Dave can do this!!! Wishing you my best, Celeste
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- July 11, 2015 at 7:20 pm
I've had 8 infusions of Keytruda. Fatigue is my most prominent day to day side effect, though it is manageable, e.g., I work full time. I wish I had suggestions other than the obvious, eat properly and at good intervals, aim for 7-8 hours of sleep, etc. I'm still adapting, but what I've found is that, when I have a tough episode (feeling shaky, etc.), I don't necessarily need to crawl into bed–I just need to slow things down a bit and the episode will pass. As Celeste and Terrie mention, recovery from surgery is likely also an issue for your fiancé. Good luck.
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- July 11, 2015 at 7:20 pm
I've had 8 infusions of Keytruda. Fatigue is my most prominent day to day side effect, though it is manageable, e.g., I work full time. I wish I had suggestions other than the obvious, eat properly and at good intervals, aim for 7-8 hours of sleep, etc. I'm still adapting, but what I've found is that, when I have a tough episode (feeling shaky, etc.), I don't necessarily need to crawl into bed–I just need to slow things down a bit and the episode will pass. As Celeste and Terrie mention, recovery from surgery is likely also an issue for your fiancé. Good luck.
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- July 11, 2015 at 7:20 pm
I've had 8 infusions of Keytruda. Fatigue is my most prominent day to day side effect, though it is manageable, e.g., I work full time. I wish I had suggestions other than the obvious, eat properly and at good intervals, aim for 7-8 hours of sleep, etc. I'm still adapting, but what I've found is that, when I have a tough episode (feeling shaky, etc.), I don't necessarily need to crawl into bed–I just need to slow things down a bit and the episode will pass. As Celeste and Terrie mention, recovery from surgery is likely also an issue for your fiancé. Good luck.
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