› Forums › General Melanoma Community › What are the real side effects from Opdivo? Patient to Patient
- This topic has 27 replies, 6 voices, and was last updated 8 years ago by
jennunicorn.
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- April 8, 2016 at 8:27 pm
So the T-Vec injections I have been getting don't seem to be working on their own and my oncologist has decided to start me on Opdivo. I have read all of the side effects from their website, but I would really like to know what other patients have encountered being on this drug.
Got PET scan results back and a spot was found on my left breast that now I am having to get biopsied to see if it's breast cancer or my melanoma spreading, so I'm not sure if the above treatments will continue, but I already have one scheduled for the 26th, so any help wouldl be greatly appreciated. Thanks in advance.
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- April 9, 2016 at 12:44 am
I'm so sorry you're going through this. It's good to be prepared for side effects. After my stage IV diagnosis I went on traditional chemo. Then I was on the combo trial (Yervoy + Opdivo) and had awful side effects. But once the ipi wore off, my only side effect is hypothyroidism. I have a 3-year-old and a 1-year-old and am able to keep up with them.
Best of luck,
Ashley
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- April 9, 2016 at 12:44 am
I'm so sorry you're going through this. It's good to be prepared for side effects. After my stage IV diagnosis I went on traditional chemo. Then I was on the combo trial (Yervoy + Opdivo) and had awful side effects. But once the ipi wore off, my only side effect is hypothyroidism. I have a 3-year-old and a 1-year-old and am able to keep up with them.
Best of luck,
Ashley
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- April 9, 2016 at 12:44 am
I'm so sorry you're going through this. It's good to be prepared for side effects. After my stage IV diagnosis I went on traditional chemo. Then I was on the combo trial (Yervoy + Opdivo) and had awful side effects. But once the ipi wore off, my only side effect is hypothyroidism. I have a 3-year-old and a 1-year-old and am able to keep up with them.
Best of luck,
Ashley
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- April 9, 2016 at 1:56 am
I took nivo/Opdivo for 2 1/2 years after having lung and brain mets starting in 2010. Here is my synopsis of side effects that are routinely expected:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
That same month I posted a looooong (and boring) account of my side effects over that peiord that I put together by reviewing my blog. I worked three 12 hour shifts while on therapy missing only three days of work. I also had to travel for my treatments. Overall, despite intermittent rashes, vitiligo, wheezing, fatigue, arthralgias, and mouth ulcers, I was very lucky in that my side effects were no worse and that I remain NED.
It is hard to predict how an individual will respond. As more and more patients have taken anti-PD1 (both Opdivo and Keytruda) we have learned much more about how difficult immune related side effects can be for some….but we have also learned better how to manage them. There is a great deal more info related to treatments and their side effects on my blog if you are interested. I wish you well. Celeste
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- April 9, 2016 at 1:56 am
I took nivo/Opdivo for 2 1/2 years after having lung and brain mets starting in 2010. Here is my synopsis of side effects that are routinely expected:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
That same month I posted a looooong (and boring) account of my side effects over that peiord that I put together by reviewing my blog. I worked three 12 hour shifts while on therapy missing only three days of work. I also had to travel for my treatments. Overall, despite intermittent rashes, vitiligo, wheezing, fatigue, arthralgias, and mouth ulcers, I was very lucky in that my side effects were no worse and that I remain NED.
It is hard to predict how an individual will respond. As more and more patients have taken anti-PD1 (both Opdivo and Keytruda) we have learned much more about how difficult immune related side effects can be for some….but we have also learned better how to manage them. There is a great deal more info related to treatments and their side effects on my blog if you are interested. I wish you well. Celeste
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- April 9, 2016 at 1:56 am
I took nivo/Opdivo for 2 1/2 years after having lung and brain mets starting in 2010. Here is my synopsis of side effects that are routinely expected:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
That same month I posted a looooong (and boring) account of my side effects over that peiord that I put together by reviewing my blog. I worked three 12 hour shifts while on therapy missing only three days of work. I also had to travel for my treatments. Overall, despite intermittent rashes, vitiligo, wheezing, fatigue, arthralgias, and mouth ulcers, I was very lucky in that my side effects were no worse and that I remain NED.
It is hard to predict how an individual will respond. As more and more patients have taken anti-PD1 (both Opdivo and Keytruda) we have learned much more about how difficult immune related side effects can be for some….but we have also learned better how to manage them. There is a great deal more info related to treatments and their side effects on my blog if you are interested. I wish you well. Celeste
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- April 9, 2016 at 5:57 pm
I started immunotherapy in Feb. 2015 on the ipi/nivo trial. I tolerated one dose of the combo, and continued on just nivo until Feb 2016, when I was diagnosed with diabetes. It is believed I'm actually type 2 though, although more antibody tests have been ordered as my blood sugar is still not under control. Ive been on insulin shots trying to find the right dose. Although there is a chance my unhealthy habits might have caused diabetes in me in the long run, my oncologist and endocrinologist feel the nivo launched me right into it. I had a very acute onset… Was fine on one Sunday, and the next morning I could hardly keep myself together! Until we can get my blood sugar down on a regular basis, I'm not getting anymore nivo treatments.
The other side effects I had were diarrhea, itchy hands and feet (skin peeled a couple times… It was like getting a fresh mani/pedi when it was done peeling!), hypothyroidism, hair thinned (but grew back, with a little white patch of vitiligo), fatigue (still worked 40 hour work weeks though), and allergic reactions to things I never had any allergies to before immunotherapy. I don't have the diarrhea or itchy hands anymore, they only lasted a few months.
I am sorry you are going through this, and I wish the very best for you!
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- April 9, 2016 at 5:57 pm
I started immunotherapy in Feb. 2015 on the ipi/nivo trial. I tolerated one dose of the combo, and continued on just nivo until Feb 2016, when I was diagnosed with diabetes. It is believed I'm actually type 2 though, although more antibody tests have been ordered as my blood sugar is still not under control. Ive been on insulin shots trying to find the right dose. Although there is a chance my unhealthy habits might have caused diabetes in me in the long run, my oncologist and endocrinologist feel the nivo launched me right into it. I had a very acute onset… Was fine on one Sunday, and the next morning I could hardly keep myself together! Until we can get my blood sugar down on a regular basis, I'm not getting anymore nivo treatments.
The other side effects I had were diarrhea, itchy hands and feet (skin peeled a couple times… It was like getting a fresh mani/pedi when it was done peeling!), hypothyroidism, hair thinned (but grew back, with a little white patch of vitiligo), fatigue (still worked 40 hour work weeks though), and allergic reactions to things I never had any allergies to before immunotherapy. I don't have the diarrhea or itchy hands anymore, they only lasted a few months.
I am sorry you are going through this, and I wish the very best for you!
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- April 9, 2016 at 5:57 pm
I started immunotherapy in Feb. 2015 on the ipi/nivo trial. I tolerated one dose of the combo, and continued on just nivo until Feb 2016, when I was diagnosed with diabetes. It is believed I'm actually type 2 though, although more antibody tests have been ordered as my blood sugar is still not under control. Ive been on insulin shots trying to find the right dose. Although there is a chance my unhealthy habits might have caused diabetes in me in the long run, my oncologist and endocrinologist feel the nivo launched me right into it. I had a very acute onset… Was fine on one Sunday, and the next morning I could hardly keep myself together! Until we can get my blood sugar down on a regular basis, I'm not getting anymore nivo treatments.
The other side effects I had were diarrhea, itchy hands and feet (skin peeled a couple times… It was like getting a fresh mani/pedi when it was done peeling!), hypothyroidism, hair thinned (but grew back, with a little white patch of vitiligo), fatigue (still worked 40 hour work weeks though), and allergic reactions to things I never had any allergies to before immunotherapy. I don't have the diarrhea or itchy hands anymore, they only lasted a few months.
I am sorry you are going through this, and I wish the very best for you!
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- April 11, 2016 at 8:35 pm
Thanks for all of the replies. This is a big decison for me because I had choosen before not to do anything and just wait after my original surgery and now I have what looks like a horror film going on, on my leg since I have amelanortic melanoma. I literally look like I have cherrys growing on my leg. Its really gross and I hate looking at it.
I honestly thing that the T-VEC injections are making my melanoma grow faster and that scares me. I have to make a decison on whether or not to keep doing them and whether or not I want to do the Opdivo. I'm beginnig to think that maybe I should just do nothing and hope that I get to live a long enough life to finally meet my grand daughter and see my son graduate from high school.
You read all these blogs and articles about treatments and the side effects and you have to ask yourself, do I really want to put my body through all that and possibly die from the treatments and not the cancer? I'm really stuck in a place of do I do this or do I just say no and hope to live a happy life without any of the stuff that comes with treatments.
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- April 11, 2016 at 8:35 pm
Thanks for all of the replies. This is a big decison for me because I had choosen before not to do anything and just wait after my original surgery and now I have what looks like a horror film going on, on my leg since I have amelanortic melanoma. I literally look like I have cherrys growing on my leg. Its really gross and I hate looking at it.
I honestly thing that the T-VEC injections are making my melanoma grow faster and that scares me. I have to make a decison on whether or not to keep doing them and whether or not I want to do the Opdivo. I'm beginnig to think that maybe I should just do nothing and hope that I get to live a long enough life to finally meet my grand daughter and see my son graduate from high school.
You read all these blogs and articles about treatments and the side effects and you have to ask yourself, do I really want to put my body through all that and possibly die from the treatments and not the cancer? I'm really stuck in a place of do I do this or do I just say no and hope to live a happy life without any of the stuff that comes with treatments.
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- April 11, 2016 at 9:47 pm
Just wanted to chime in and say that everyone reacts to drugs differently. Just because the side effects are a possibility, it does not mean you will definitely experience them. For some, treatment is fairly easy and for others it is a little more difficult. Immunotherapy drugs are a lot easier to deal with overall than traditional chemo drugs. Your doctor would be working very closely with you if you chose to do the Opdivo route. If any side effect came up, you'd let your doctor know and they'd get it treated and taken care of asap. It sounds and seems a lot scarier than it is, I promise. These decisions aren't easy.
All the best,
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- April 18, 2016 at 7:27 pm
hi Jen. My sister is starting her combo in a few weeks and i just wanted to see if you could give me an idea as to how soon these side effects start after infusion? Immediately? We are scheduled to drive to ATlanta, have her do the treatment and then thinking we are going to either drive home or fly. Did you experience diarrhea and if so how soon after your first shot?
Any info would be incredibly helpful as this is her first time with opdivo and yervoy.
BTW she's stage 4 had surgery on liver/lungs and now her left lung has nodules so this is her next treatment. Her husband died 2 years ago of melanoma. She has 2 young children and is 47. Heartbreaking to say the least.
Hope you're doing well.
Kind Regards,
Jennifer (concerned sister)
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- April 18, 2016 at 8:34 pm
It can be very different for everyone. For myself, I have only done Yervoy, and after each infusion I was very fatigued but that's about it. I never had diarrhea or any of the major side effects. From what I have heard, a lot of people who did experience some diarrhea didn't get it until a few days or a week after the infusion. But, just know, there is not set time when a side effect will kick in, it really does vary from person to person.
Hopefully she tolerates the infusions well, wishing her all the best.
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- April 18, 2016 at 8:34 pm
It can be very different for everyone. For myself, I have only done Yervoy, and after each infusion I was very fatigued but that's about it. I never had diarrhea or any of the major side effects. From what I have heard, a lot of people who did experience some diarrhea didn't get it until a few days or a week after the infusion. But, just know, there is not set time when a side effect will kick in, it really does vary from person to person.
Hopefully she tolerates the infusions well, wishing her all the best.
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- April 18, 2016 at 8:34 pm
It can be very different for everyone. For myself, I have only done Yervoy, and after each infusion I was very fatigued but that's about it. I never had diarrhea or any of the major side effects. From what I have heard, a lot of people who did experience some diarrhea didn't get it until a few days or a week after the infusion. But, just know, there is not set time when a side effect will kick in, it really does vary from person to person.
Hopefully she tolerates the infusions well, wishing her all the best.
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- April 18, 2016 at 10:33 pm
Thank you. I know having as much info before starting treatment really helps, it helped me a lot and I am glad to share some knowledge of my experience now too.
Take care,
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- April 18, 2016 at 10:33 pm
Thank you. I know having as much info before starting treatment really helps, it helped me a lot and I am glad to share some knowledge of my experience now too.
Take care,
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- April 18, 2016 at 10:33 pm
Thank you. I know having as much info before starting treatment really helps, it helped me a lot and I am glad to share some knowledge of my experience now too.
Take care,
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- April 18, 2016 at 7:27 pm
hi Jen. My sister is starting her combo in a few weeks and i just wanted to see if you could give me an idea as to how soon these side effects start after infusion? Immediately? We are scheduled to drive to ATlanta, have her do the treatment and then thinking we are going to either drive home or fly. Did you experience diarrhea and if so how soon after your first shot?
Any info would be incredibly helpful as this is her first time with opdivo and yervoy.
BTW she's stage 4 had surgery on liver/lungs and now her left lung has nodules so this is her next treatment. Her husband died 2 years ago of melanoma. She has 2 young children and is 47. Heartbreaking to say the least.
Hope you're doing well.
Kind Regards,
Jennifer (concerned sister)
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- April 18, 2016 at 7:27 pm
hi Jen. My sister is starting her combo in a few weeks and i just wanted to see if you could give me an idea as to how soon these side effects start after infusion? Immediately? We are scheduled to drive to ATlanta, have her do the treatment and then thinking we are going to either drive home or fly. Did you experience diarrhea and if so how soon after your first shot?
Any info would be incredibly helpful as this is her first time with opdivo and yervoy.
BTW she's stage 4 had surgery on liver/lungs and now her left lung has nodules so this is her next treatment. Her husband died 2 years ago of melanoma. She has 2 young children and is 47. Heartbreaking to say the least.
Hope you're doing well.
Kind Regards,
Jennifer (concerned sister)
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- April 11, 2016 at 9:47 pm
Just wanted to chime in and say that everyone reacts to drugs differently. Just because the side effects are a possibility, it does not mean you will definitely experience them. For some, treatment is fairly easy and for others it is a little more difficult. Immunotherapy drugs are a lot easier to deal with overall than traditional chemo drugs. Your doctor would be working very closely with you if you chose to do the Opdivo route. If any side effect came up, you'd let your doctor know and they'd get it treated and taken care of asap. It sounds and seems a lot scarier than it is, I promise. These decisions aren't easy.
All the best,
-
- April 11, 2016 at 9:47 pm
Just wanted to chime in and say that everyone reacts to drugs differently. Just because the side effects are a possibility, it does not mean you will definitely experience them. For some, treatment is fairly easy and for others it is a little more difficult. Immunotherapy drugs are a lot easier to deal with overall than traditional chemo drugs. Your doctor would be working very closely with you if you chose to do the Opdivo route. If any side effect came up, you'd let your doctor know and they'd get it treated and taken care of asap. It sounds and seems a lot scarier than it is, I promise. These decisions aren't easy.
All the best,
-
- April 11, 2016 at 8:35 pm
Thanks for all of the replies. This is a big decison for me because I had choosen before not to do anything and just wait after my original surgery and now I have what looks like a horror film going on, on my leg since I have amelanortic melanoma. I literally look like I have cherrys growing on my leg. Its really gross and I hate looking at it.
I honestly thing that the T-VEC injections are making my melanoma grow faster and that scares me. I have to make a decison on whether or not to keep doing them and whether or not I want to do the Opdivo. I'm beginnig to think that maybe I should just do nothing and hope that I get to live a long enough life to finally meet my grand daughter and see my son graduate from high school.
You read all these blogs and articles about treatments and the side effects and you have to ask yourself, do I really want to put my body through all that and possibly die from the treatments and not the cancer? I'm really stuck in a place of do I do this or do I just say no and hope to live a happy life without any of the stuff that comes with treatments.
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