› Forums › General Melanoma Community › Severe side effects with Keytruda
- This topic has 21 replies, 4 voices, and was last updated 8 years, 8 months ago by
keepthefaith11.
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- December 10, 2016 at 10:49 am
My mom has been hospitalized for 4 days with severe side effects from only her 2nd Keytruda treatment. So bad that she cannot walk, her eye lids will not stay open and she has even had a heart attack and has a hard time breathing. She is at a local hospital so neither of her oncologist are here. She has an appointment with her radiologist at Moffitt but as it looks right now she will not be able to make it. They started her on a steroid yesterday and right now we are being told there is nothing else that can be done. Is this so? Has anyone heard of such a severe reaction? She has stage IV Melanoma. Looking forward to some feedback.
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- December 10, 2016 at 11:24 am
Sorry to hear. I would try to get the onc at Moffitt to speak directly with the managing physician at the local hospital. Steroids seem like a good starting point (to a layperson like me) but the fact that it took 4 days to get to there s concerning.
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- December 10, 2016 at 11:24 am
Sorry to hear. I would try to get the onc at Moffitt to speak directly with the managing physician at the local hospital. Steroids seem like a good starting point (to a layperson like me) but the fact that it took 4 days to get to there s concerning.
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- December 10, 2016 at 11:24 am
Sorry to hear. I would try to get the onc at Moffitt to speak directly with the managing physician at the local hospital. Steroids seem like a good starting point (to a layperson like me) but the fact that it took 4 days to get to there s concerning.
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- December 10, 2016 at 2:04 pm
So sorry that things have taken this turn. Yes, immunotherapy can cause signigificant side effects for some. Steroids are the treatment. There are many posts about side effects and treatment on my blog. It is important to make sure that other issues are not the cause of her symptoms….tumor progression, as well as other disease processes….rather than making the assumption that keytruda side effects are the problem. I'm not saying that is the case, just that one has to be careful and look at the entire picture…though your docs may well be doing that. I would also ask that the local docs call the specialists at Moffitt and get their recomendations. Probably not much help as all these things may have already been done. Hang in there. Wishing your mom well. Celeste
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- December 10, 2016 at 2:04 pm
So sorry that things have taken this turn. Yes, immunotherapy can cause signigificant side effects for some. Steroids are the treatment. There are many posts about side effects and treatment on my blog. It is important to make sure that other issues are not the cause of her symptoms….tumor progression, as well as other disease processes….rather than making the assumption that keytruda side effects are the problem. I'm not saying that is the case, just that one has to be careful and look at the entire picture…though your docs may well be doing that. I would also ask that the local docs call the specialists at Moffitt and get their recomendations. Probably not much help as all these things may have already been done. Hang in there. Wishing your mom well. Celeste
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- December 10, 2016 at 2:04 pm
So sorry that things have taken this turn. Yes, immunotherapy can cause signigificant side effects for some. Steroids are the treatment. There are many posts about side effects and treatment on my blog. It is important to make sure that other issues are not the cause of her symptoms….tumor progression, as well as other disease processes….rather than making the assumption that keytruda side effects are the problem. I'm not saying that is the case, just that one has to be careful and look at the entire picture…though your docs may well be doing that. I would also ask that the local docs call the specialists at Moffitt and get their recomendations. Probably not much help as all these things may have already been done. Hang in there. Wishing your mom well. Celeste
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- December 10, 2016 at 7:36 pm
My dad had his 5th infusion last week and ended up in the hospital with diarrhea. Since being there he has had similar issues. Hard time walking, hard time keeping his eyes open periodically, heart fibrallations and low blood pressure. They are not sure what is causing it but it could be the Opdivo. They have doe another MRI and PET scan to rule out disease progression. Seems there were some increasimg pressure on the brain from a couple of the mets enlarging a bit. Like Celeste said, make sure they are checking other reasons for her decline, although ot could very well be the Keytruda.Is she BRAF positive? My dad’s oncologists have made the decision to switch him to the BRAF/MEK inhibitors to try to improve his condition quicker. Also they do not feel giving him another infusion of Opdivo is a wise thing to do right now.
Thinking of you and your mom.
Annie
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- December 10, 2016 at 7:42 pm
Very similar symptoms for your dad. She is not BRAF positive. They have done an MRI of her brain and the tumor she had there 6 weeks ago and was radioated seems just a wee bit smaller, but still there. This is so hard to believe because this is happening so quickly. My mom was still teaching her line dancing classes up until 'this 2nd treatment. Seems like one thing leads to another.
I wish your dad a quick turn around and hope he's back to feeling more like himself soon.
Take care!
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- December 10, 2016 at 10:00 pm
Did they mention anything about swelling? That could also cause issues. It sounds like it’s probably the Keytruda though. Steriods will help calmthe immunerespons. Do you know what dosage she is on?This is a scary place to be with our parents. To see them deteriorating this way it’s very painful. But we have to keep positive and since she was teaching line dancing right before this it is probably immune reaction. As the immune system calms down she should stabilize. My dad has had 3 seizures and have been left completely unable to walk or talk after each one. After the first one I thought we had lost him. But he bounced back and came back to pretty much completely normal. So even when things seem really bad it doesn’t mean it will stay this way.
Are you there with your mom yet? I know you were coming down to Florida for her appointment with Moffitt. I am also in Florida but my father is in Europe.
Annie
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- December 11, 2016 at 10:10 am
Yes the swelling could be from the Keytruda or from her new heart issue. A fib, but now with this new heart issue they cannot even give her anything to help with that, like blood thinners because of the brain tumor.
Yes I flew down to Florida immediately after I sensed how weak she was and told her to get to the ER, asap. So glad I did as she needed someone to advocate for her. I am guessing they will discharge her from the hospital tomorrow but, and that's such a big but I don't know how this is all going to go.Because she became this bad so fast, not being able to walk on her own and knowing now that all this stems from the Keytruda I highly doubt she can go on with more treatments. My dad is almost 87 who cannot be considered a care giver so I don't know where this is going to go.
the follow up schedule for Tuesday at Moffitt will have to be cancelled as she would not be able to travel with her condition.. what to do,,??? Where to go? I feel so lost not knowing. So helpless..
any suggestions?
The communication between this local hospital and Moffitt cannot even take place which is another frustrating issue. We are told that once she is discharged she can request all her scans, images or whatever and get them to Moffitt. But I know we won't be going so getting them this info asap doesn't seem to be a priority to them. Moffitt Center is a 2 hour ride, one way and scans and whatnot can be mailed,, but what happens in the meantime.
Sorry I realize I am venting here so I will stop. Scared and concerned that's all.
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- December 12, 2016 at 8:58 pm
They probably will want to hold off on any more treatments. At least for now. The steroids should help calm down the immune response she is experiencing. Did you say she actually had a heart attack? Once the heart gets involved any further treatment with Keytuda is probably too risky. Hopefully she will get stronger and improved in the upcoming days. Enough so she can take a trip to Moffitt and get their expertise advice.My dad was feeling stronger today. It has now been 10 days since he was admitted to the hospital. It takes time to recover I guess. He is about to start some physical therapy to get strength back. He has been pretty much bedridden for 10 days now.
This came on really quickly for him to. Although he has been pretty out of it because of the high dose of anti-seizure medication he is on.
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- December 12, 2016 at 8:58 pm
They probably will want to hold off on any more treatments. At least for now. The steroids should help calm down the immune response she is experiencing. Did you say she actually had a heart attack? Once the heart gets involved any further treatment with Keytuda is probably too risky. Hopefully she will get stronger and improved in the upcoming days. Enough so she can take a trip to Moffitt and get their expertise advice.My dad was feeling stronger today. It has now been 10 days since he was admitted to the hospital. It takes time to recover I guess. He is about to start some physical therapy to get strength back. He has been pretty much bedridden for 10 days now.
This came on really quickly for him to. Although he has been pretty out of it because of the high dose of anti-seizure medication he is on.
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- December 12, 2016 at 8:58 pm
They probably will want to hold off on any more treatments. At least for now. The steroids should help calm down the immune response she is experiencing. Did you say she actually had a heart attack? Once the heart gets involved any further treatment with Keytuda is probably too risky. Hopefully she will get stronger and improved in the upcoming days. Enough so she can take a trip to Moffitt and get their expertise advice.My dad was feeling stronger today. It has now been 10 days since he was admitted to the hospital. It takes time to recover I guess. He is about to start some physical therapy to get strength back. He has been pretty much bedridden for 10 days now.
This came on really quickly for him to. Although he has been pretty out of it because of the high dose of anti-seizure medication he is on.
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- December 11, 2016 at 10:10 am
Yes the swelling could be from the Keytruda or from her new heart issue. A fib, but now with this new heart issue they cannot even give her anything to help with that, like blood thinners because of the brain tumor.
Yes I flew down to Florida immediately after I sensed how weak she was and told her to get to the ER, asap. So glad I did as she needed someone to advocate for her. I am guessing they will discharge her from the hospital tomorrow but, and that's such a big but I don't know how this is all going to go.Because she became this bad so fast, not being able to walk on her own and knowing now that all this stems from the Keytruda I highly doubt she can go on with more treatments. My dad is almost 87 who cannot be considered a care giver so I don't know where this is going to go.
the follow up schedule for Tuesday at Moffitt will have to be cancelled as she would not be able to travel with her condition.. what to do,,??? Where to go? I feel so lost not knowing. So helpless..
any suggestions?
The communication between this local hospital and Moffitt cannot even take place which is another frustrating issue. We are told that once she is discharged she can request all her scans, images or whatever and get them to Moffitt. But I know we won't be going so getting them this info asap doesn't seem to be a priority to them. Moffitt Center is a 2 hour ride, one way and scans and whatnot can be mailed,, but what happens in the meantime.
Sorry I realize I am venting here so I will stop. Scared and concerned that's all.
-
- December 11, 2016 at 10:10 am
Yes the swelling could be from the Keytruda or from her new heart issue. A fib, but now with this new heart issue they cannot even give her anything to help with that, like blood thinners because of the brain tumor.
Yes I flew down to Florida immediately after I sensed how weak she was and told her to get to the ER, asap. So glad I did as she needed someone to advocate for her. I am guessing they will discharge her from the hospital tomorrow but, and that's such a big but I don't know how this is all going to go.Because she became this bad so fast, not being able to walk on her own and knowing now that all this stems from the Keytruda I highly doubt she can go on with more treatments. My dad is almost 87 who cannot be considered a care giver so I don't know where this is going to go.
the follow up schedule for Tuesday at Moffitt will have to be cancelled as she would not be able to travel with her condition.. what to do,,??? Where to go? I feel so lost not knowing. So helpless..
any suggestions?
The communication between this local hospital and Moffitt cannot even take place which is another frustrating issue. We are told that once she is discharged she can request all her scans, images or whatever and get them to Moffitt. But I know we won't be going so getting them this info asap doesn't seem to be a priority to them. Moffitt Center is a 2 hour ride, one way and scans and whatnot can be mailed,, but what happens in the meantime.
Sorry I realize I am venting here so I will stop. Scared and concerned that's all.
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- December 10, 2016 at 10:00 pm
Did they mention anything about swelling? That could also cause issues. It sounds like it’s probably the Keytruda though. Steriods will help calmthe immunerespons. Do you know what dosage she is on?This is a scary place to be with our parents. To see them deteriorating this way it’s very painful. But we have to keep positive and since she was teaching line dancing right before this it is probably immune reaction. As the immune system calms down she should stabilize. My dad has had 3 seizures and have been left completely unable to walk or talk after each one. After the first one I thought we had lost him. But he bounced back and came back to pretty much completely normal. So even when things seem really bad it doesn’t mean it will stay this way.
Are you there with your mom yet? I know you were coming down to Florida for her appointment with Moffitt. I am also in Florida but my father is in Europe.
Annie
-
- December 10, 2016 at 10:00 pm
Did they mention anything about swelling? That could also cause issues. It sounds like it’s probably the Keytruda though. Steriods will help calmthe immunerespons. Do you know what dosage she is on?This is a scary place to be with our parents. To see them deteriorating this way it’s very painful. But we have to keep positive and since she was teaching line dancing right before this it is probably immune reaction. As the immune system calms down she should stabilize. My dad has had 3 seizures and have been left completely unable to walk or talk after each one. After the first one I thought we had lost him. But he bounced back and came back to pretty much completely normal. So even when things seem really bad it doesn’t mean it will stay this way.
Are you there with your mom yet? I know you were coming down to Florida for her appointment with Moffitt. I am also in Florida but my father is in Europe.
Annie
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- December 10, 2016 at 7:42 pm
Very similar symptoms for your dad. She is not BRAF positive. They have done an MRI of her brain and the tumor she had there 6 weeks ago and was radioated seems just a wee bit smaller, but still there. This is so hard to believe because this is happening so quickly. My mom was still teaching her line dancing classes up until 'this 2nd treatment. Seems like one thing leads to another.
I wish your dad a quick turn around and hope he's back to feeling more like himself soon.
Take care!
-
- December 10, 2016 at 7:42 pm
Very similar symptoms for your dad. She is not BRAF positive. They have done an MRI of her brain and the tumor she had there 6 weeks ago and was radioated seems just a wee bit smaller, but still there. This is so hard to believe because this is happening so quickly. My mom was still teaching her line dancing classes up until 'this 2nd treatment. Seems like one thing leads to another.
I wish your dad a quick turn around and hope he's back to feeling more like himself soon.
Take care!
-
- December 10, 2016 at 7:36 pm
My dad had his 5th infusion last week and ended up in the hospital with diarrhea. Since being there he has had similar issues. Hard time walking, hard time keeping his eyes open periodically, heart fibrallations and low blood pressure. They are not sure what is causing it but it could be the Opdivo. They have doe another MRI and PET scan to rule out disease progression. Seems there were some increasimg pressure on the brain from a couple of the mets enlarging a bit. Like Celeste said, make sure they are checking other reasons for her decline, although ot could very well be the Keytruda.Is she BRAF positive? My dad’s oncologists have made the decision to switch him to the BRAF/MEK inhibitors to try to improve his condition quicker. Also they do not feel giving him another infusion of Opdivo is a wise thing to do right now.
Thinking of you and your mom.
Annie
-
- December 10, 2016 at 7:36 pm
My dad had his 5th infusion last week and ended up in the hospital with diarrhea. Since being there he has had similar issues. Hard time walking, hard time keeping his eyes open periodically, heart fibrallations and low blood pressure. They are not sure what is causing it but it could be the Opdivo. They have doe another MRI and PET scan to rule out disease progression. Seems there were some increasimg pressure on the brain from a couple of the mets enlarging a bit. Like Celeste said, make sure they are checking other reasons for her decline, although ot could very well be the Keytruda.Is she BRAF positive? My dad’s oncologists have made the decision to switch him to the BRAF/MEK inhibitors to try to improve his condition quicker. Also they do not feel giving him another infusion of Opdivo is a wise thing to do right now.
Thinking of you and your mom.
Annie
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