› Forums › General Melanoma Community › Can Opdivo cause Congestive Heart Failure?
- This topic has 39 replies, 4 voices, and was last updated 8 years, 11 months ago by
keepthefaith11.
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- December 23, 2016 at 2:15 pm
My dad is in the hospital not doing well. The scan shows that the brain tumours are shrinking but he’s having a lot of other complications. He has been really weak and heart has been acting up. Right now he is having a lot of congestion and cough. It seems that they think he has gotten congestive heart failure. But they also think this might be general infection. They are treating both.Does anybody know if a Opdivo can cause congestive heart failure?
I am a complete mess and just praying that he will pull through this. Especially since the actual cancer seems to be getting better. I am here in America and he is in Europe. I have a flight planned to go over there on the 27th. I just spoke with a doctor over the phone and they seem to be doing the right thing.
Any insights appreciated.
Annie
- Replies
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- December 23, 2016 at 2:17 pm
Forgot to mention he also has a fever. So my thought is that it is either a general infection, or it is a fever from the BRAF/MEK drug and the cough and swelling of legs from the congestive heart failure. -
- December 23, 2016 at 2:17 pm
Forgot to mention he also has a fever. So my thought is that it is either a general infection, or it is a fever from the BRAF/MEK drug and the cough and swelling of legs from the congestive heart failure. -
- December 23, 2016 at 2:17 pm
Forgot to mention he also has a fever. So my thought is that it is either a general infection, or it is a fever from the BRAF/MEK drug and the cough and swelling of legs from the congestive heart failure. -
- December 23, 2016 at 3:08 pm
Hey Annie,
Sorry sweetie. Sounds like his docs are managing things pretty well and it is often hard to get to what is actually causing a patient's problems when there are so many variables. However, you should know that, yes…immunotherapy can cause problems with the heart…sometimes masked as congestive heart failure…..in the form of myocarditis and other cardiotoxicities. Like most immune related side effects the treatment is steriods.
Here's a link to a post discussing many side effects (you'll have to look through for the heart related ones) with other posts linked as well: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/side-effects-to-immunotherapypart-6.html
Perhaps some of these articles will allow you to have a better discussion with the docs about the possibility of immune related side effects.
Hang in there. Wishing my best for you and your dad. celeste
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- December 23, 2016 at 3:08 pm
Hey Annie,
Sorry sweetie. Sounds like his docs are managing things pretty well and it is often hard to get to what is actually causing a patient's problems when there are so many variables. However, you should know that, yes…immunotherapy can cause problems with the heart…sometimes masked as congestive heart failure…..in the form of myocarditis and other cardiotoxicities. Like most immune related side effects the treatment is steriods.
Here's a link to a post discussing many side effects (you'll have to look through for the heart related ones) with other posts linked as well: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/side-effects-to-immunotherapypart-6.html
Perhaps some of these articles will allow you to have a better discussion with the docs about the possibility of immune related side effects.
Hang in there. Wishing my best for you and your dad. celeste
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- December 23, 2016 at 5:45 pm
Thank you so much Celeste, as always.I just spoke to the cardiologist and she said that the EKGs and all the other tests they have done show no damage to the heart walls or anything else. I asked about in the possible immune reaction and she said that they have kept it in the back of their minds but they still think this is related to a mild pneumonia. She said he has heart fibrillations but that’s all they can find. He has perked up throughout the day which is also a good sign.
Hopefully he will recover from this so we can get back on the BRAF/MEK. They temporarily stopped it due to the fever not knowing if that was what caused the sudden fever.
This sure is horrifying and scary. But I really feel he is in good hands and love the fact that the doctors will call me from my dad’s room to tell me what’s going on. My poor mom is there alone and is focused on being there for him.
Annie
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- December 23, 2016 at 5:45 pm
Thank you so much Celeste, as always.I just spoke to the cardiologist and she said that the EKGs and all the other tests they have done show no damage to the heart walls or anything else. I asked about in the possible immune reaction and she said that they have kept it in the back of their minds but they still think this is related to a mild pneumonia. She said he has heart fibrillations but that’s all they can find. He has perked up throughout the day which is also a good sign.
Hopefully he will recover from this so we can get back on the BRAF/MEK. They temporarily stopped it due to the fever not knowing if that was what caused the sudden fever.
This sure is horrifying and scary. But I really feel he is in good hands and love the fact that the doctors will call me from my dad’s room to tell me what’s going on. My poor mom is there alone and is focused on being there for him.
Annie
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- December 23, 2016 at 9:26 pm
Hi Annie,
Immunotherapy can cause pneumonitis- which is treated with steroids like most other side effects as Celeste says. The drugs can also cause fevers .
Have a look at this management guide – page 6-7 referes to pneumonitis
http://www.opdivohcp.bmscustomerconnect.com/servlet/servlet.FileDownload?file=00Pi000000Hj19REAR
Is your Dad being managed by a team experienced in these drugs and side effects ? Can't see the cardiologist having much relevant experience going by my experience of the knowledge base of consultants outside of the immunotherapy field in the uk- they write letters saying I am on immunosuppression – before steroids whuich is the exact opposite of what is going on… so I would keep asking your questions.
Hope all settles soon
Deb
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- December 23, 2016 at 9:26 pm
Hi Annie,
Immunotherapy can cause pneumonitis- which is treated with steroids like most other side effects as Celeste says. The drugs can also cause fevers .
Have a look at this management guide – page 6-7 referes to pneumonitis
http://www.opdivohcp.bmscustomerconnect.com/servlet/servlet.FileDownload?file=00Pi000000Hj19REAR
Is your Dad being managed by a team experienced in these drugs and side effects ? Can't see the cardiologist having much relevant experience going by my experience of the knowledge base of consultants outside of the immunotherapy field in the uk- they write letters saying I am on immunosuppression – before steroids whuich is the exact opposite of what is going on… so I would keep asking your questions.
Hope all settles soon
Deb
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- December 23, 2016 at 9:26 pm
Hi Annie,
Immunotherapy can cause pneumonitis- which is treated with steroids like most other side effects as Celeste says. The drugs can also cause fevers .
Have a look at this management guide – page 6-7 referes to pneumonitis
http://www.opdivohcp.bmscustomerconnect.com/servlet/servlet.FileDownload?file=00Pi000000Hj19REAR
Is your Dad being managed by a team experienced in these drugs and side effects ? Can't see the cardiologist having much relevant experience going by my experience of the knowledge base of consultants outside of the immunotherapy field in the uk- they write letters saying I am on immunosuppression – before steroids whuich is the exact opposite of what is going on… so I would keep asking your questions.
Hope all settles soon
Deb
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- December 24, 2016 at 4:41 pm
Deb, your post prompted me to read up about differences between pneumonia and pneumonitis. Seems a lot of the symptoms are the same. I have not spoken to the doctor today but they did do a chest x-ray last night which to them showed pneumonia. Not sure if pneumonitis is on their radar although he is at a highly reputable Research Hospital. One of the two in the country that specializes in melanoma. He has been on steroids since the bout with diarrhea after the last nivo infusion. I have to double-check today and see what those that he is on. It has been a couple of weeks since steroid treatment was initiated. I see that treatment for pneumonitis is steroids, whereas treatment for pneumonia is obviously antibiotics, which he is on. He was better this morning and able to eat breakfast but then slept for 4 hours. Guess this is normal. Anybody would be tired if you have pneumonia right?It seems they would be able to tell if it is pneumonitis on a x-ray. Is this right?
Annie
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- December 24, 2016 at 4:44 pm
Wanted to say that he is on the floor of the oncology department. They don’t feel there is a need to take him to the ICU. The head oncologist is the one I spoke with yesterday and then later the cardiologists. They said they are in close contact looking over my dad. The cardiologists got involved because of the suspected heart issues. But the oncologist is still the person in charge. -
- December 24, 2016 at 4:44 pm
Wanted to say that he is on the floor of the oncology department. They don’t feel there is a need to take him to the ICU. The head oncologist is the one I spoke with yesterday and then later the cardiologists. They said they are in close contact looking over my dad. The cardiologists got involved because of the suspected heart issues. But the oncologist is still the person in charge. -
- December 24, 2016 at 4:44 pm
Wanted to say that he is on the floor of the oncology department. They don’t feel there is a need to take him to the ICU. The head oncologist is the one I spoke with yesterday and then later the cardiologists. They said they are in close contact looking over my dad. The cardiologists got involved because of the suspected heart issues. But the oncologist is still the person in charge. -
- December 24, 2016 at 7:49 pm
Hi Annie,
Not a medic.. but have suffered from infection being treated as immunotherapy side effect ( carried a knee infection undiagnosed for 5 months in spite of two hospital emergency admissions, sky high CRP, three weekly doc consults with infusions on keytruda v placebo trial , visits to GP, pain relief being increased to morphine etc etc finally sorted by orthopeadic hospital but needed 3 week plus stay-more surgery and three months high dose antibiotics- replacement knee joint usage / function now compromised-)
Pneumonia is a form of pneumonitis caused by infection- so radiology would be similar .. thought this was helpful ?
Have they collected sputum samples or is his cough dry and unproductive ? Might get false negatives for infection if he is already on antibiotics ?
Both conditions would be tiring . Are they tapering yopur Dads steroids for the gastro problems yet ? And is he getting worse as they do this ? His oxygen sats will simply show possible breathing problems not the cause .
From what you say the docs should be working hand in hand but my experience hasled me to trying to understand as much as possible as there can be problems that are costly for the patient . I really can't say how easy it would be to distinguish the two diagnoses but believe that until one or the other is proved to be the case both need to be considered. Firmly sitting on the fence I'm afraid.
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- December 26, 2016 at 1:11 pm
Deb, I totally agree. Have not been able to speak to a doctor over Christmas. From what my mom said, who is sick now as well, lovely, the tests have come back as the flu. Not sure what testing would have done to figure that out but that was the report. His fever is now gone. But they are having some problems with his blood pressure going pretty low. So he has been getting a lot of IV fluids which has made him swell up like a balloon. They are giving him diuretics now. so overall he seems to be getting better, able to eat a couple of meals yesterday. I will be there in two days and we’ll definitely interrogate the doctors about all this. I am not sure the dosage of steroids he is on. Have not been able to get an answer on that. I assume they have tapered it some. He started out at 60 milligrams.This whole cancer Journey has certainly spiraled out of control. Not only are we dealing with the cancer, which now has been put on the back burner, bit also the effects from all the seizures which has left him not being himself mentally. I don’t know where we go from here, he was having a hard time walking before the flu hit. I don’t know if he can come back from all this physically or mentally. It is all very very depressing…
Annie
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- December 26, 2016 at 1:11 pm
Deb, I totally agree. Have not been able to speak to a doctor over Christmas. From what my mom said, who is sick now as well, lovely, the tests have come back as the flu. Not sure what testing would have done to figure that out but that was the report. His fever is now gone. But they are having some problems with his blood pressure going pretty low. So he has been getting a lot of IV fluids which has made him swell up like a balloon. They are giving him diuretics now. so overall he seems to be getting better, able to eat a couple of meals yesterday. I will be there in two days and we’ll definitely interrogate the doctors about all this. I am not sure the dosage of steroids he is on. Have not been able to get an answer on that. I assume they have tapered it some. He started out at 60 milligrams.This whole cancer Journey has certainly spiraled out of control. Not only are we dealing with the cancer, which now has been put on the back burner, bit also the effects from all the seizures which has left him not being himself mentally. I don’t know where we go from here, he was having a hard time walking before the flu hit. I don’t know if he can come back from all this physically or mentally. It is all very very depressing…
Annie
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- December 26, 2016 at 2:12 pm
Hi Annie,
Hold on tight. Things can be pretty grim at points on the way but the picture can change within a week. I'm currently on 50 mg prednisolone and have to go to clinic Wed for bloods and probable start of taper.
Great to hear fever gone and eating again. Cross my fingers all will start going in a better direction andthat you can give your Mum a lift too. This cancer impacts so many individuals as patients, family and friends.
Can be really hard to isolate causes…of symptoms…various.. Good luck andbest wishes
Deb
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- December 26, 2016 at 2:12 pm
Hi Annie,
Hold on tight. Things can be pretty grim at points on the way but the picture can change within a week. I'm currently on 50 mg prednisolone and have to go to clinic Wed for bloods and probable start of taper.
Great to hear fever gone and eating again. Cross my fingers all will start going in a better direction andthat you can give your Mum a lift too. This cancer impacts so many individuals as patients, family and friends.
Can be really hard to isolate causes…of symptoms…various.. Good luck andbest wishes
Deb
-
- December 27, 2016 at 1:23 pm
Thank you Deb. Your support means a lot. I am leaving today for Europe and am anxious to see what is going on. Hard to get the full picture over the phone. I have no idea what to expect…Scary.He sleeps pretty much constantly, which I guess is understandable. But the fever is gone and blood pressure stabilized. I take that as a good sign.
Annie
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- December 27, 2016 at 1:23 pm
Thank you Deb. Your support means a lot. I am leaving today for Europe and am anxious to see what is going on. Hard to get the full picture over the phone. I have no idea what to expect…Scary.He sleeps pretty much constantly, which I guess is understandable. But the fever is gone and blood pressure stabilized. I take that as a good sign.
Annie
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- December 27, 2016 at 1:23 pm
Thank you Deb. Your support means a lot. I am leaving today for Europe and am anxious to see what is going on. Hard to get the full picture over the phone. I have no idea what to expect…Scary.He sleeps pretty much constantly, which I guess is understandable. But the fever is gone and blood pressure stabilized. I take that as a good sign.
Annie
-
- December 26, 2016 at 2:12 pm
Hi Annie,
Hold on tight. Things can be pretty grim at points on the way but the picture can change within a week. I'm currently on 50 mg prednisolone and have to go to clinic Wed for bloods and probable start of taper.
Great to hear fever gone and eating again. Cross my fingers all will start going in a better direction andthat you can give your Mum a lift too. This cancer impacts so many individuals as patients, family and friends.
Can be really hard to isolate causes…of symptoms…various.. Good luck andbest wishes
Deb
-
- December 26, 2016 at 1:11 pm
Deb, I totally agree. Have not been able to speak to a doctor over Christmas. From what my mom said, who is sick now as well, lovely, the tests have come back as the flu. Not sure what testing would have done to figure that out but that was the report. His fever is now gone. But they are having some problems with his blood pressure going pretty low. So he has been getting a lot of IV fluids which has made him swell up like a balloon. They are giving him diuretics now. so overall he seems to be getting better, able to eat a couple of meals yesterday. I will be there in two days and we’ll definitely interrogate the doctors about all this. I am not sure the dosage of steroids he is on. Have not been able to get an answer on that. I assume they have tapered it some. He started out at 60 milligrams.This whole cancer Journey has certainly spiraled out of control. Not only are we dealing with the cancer, which now has been put on the back burner, bit also the effects from all the seizures which has left him not being himself mentally. I don’t know where we go from here, he was having a hard time walking before the flu hit. I don’t know if he can come back from all this physically or mentally. It is all very very depressing…
Annie
-
- December 24, 2016 at 7:49 pm
Hi Annie,
Not a medic.. but have suffered from infection being treated as immunotherapy side effect ( carried a knee infection undiagnosed for 5 months in spite of two hospital emergency admissions, sky high CRP, three weekly doc consults with infusions on keytruda v placebo trial , visits to GP, pain relief being increased to morphine etc etc finally sorted by orthopeadic hospital but needed 3 week plus stay-more surgery and three months high dose antibiotics- replacement knee joint usage / function now compromised-)
Pneumonia is a form of pneumonitis caused by infection- so radiology would be similar .. thought this was helpful ?
Have they collected sputum samples or is his cough dry and unproductive ? Might get false negatives for infection if he is already on antibiotics ?
Both conditions would be tiring . Are they tapering yopur Dads steroids for the gastro problems yet ? And is he getting worse as they do this ? His oxygen sats will simply show possible breathing problems not the cause .
From what you say the docs should be working hand in hand but my experience hasled me to trying to understand as much as possible as there can be problems that are costly for the patient . I really can't say how easy it would be to distinguish the two diagnoses but believe that until one or the other is proved to be the case both need to be considered. Firmly sitting on the fence I'm afraid.
-
- December 24, 2016 at 7:49 pm
Hi Annie,
Not a medic.. but have suffered from infection being treated as immunotherapy side effect ( carried a knee infection undiagnosed for 5 months in spite of two hospital emergency admissions, sky high CRP, three weekly doc consults with infusions on keytruda v placebo trial , visits to GP, pain relief being increased to morphine etc etc finally sorted by orthopeadic hospital but needed 3 week plus stay-more surgery and three months high dose antibiotics- replacement knee joint usage / function now compromised-)
Pneumonia is a form of pneumonitis caused by infection- so radiology would be similar .. thought this was helpful ?
Have they collected sputum samples or is his cough dry and unproductive ? Might get false negatives for infection if he is already on antibiotics ?
Both conditions would be tiring . Are they tapering yopur Dads steroids for the gastro problems yet ? And is he getting worse as they do this ? His oxygen sats will simply show possible breathing problems not the cause .
From what you say the docs should be working hand in hand but my experience hasled me to trying to understand as much as possible as there can be problems that are costly for the patient . I really can't say how easy it would be to distinguish the two diagnoses but believe that until one or the other is proved to be the case both need to be considered. Firmly sitting on the fence I'm afraid.
-
- December 24, 2016 at 4:41 pm
Deb, your post prompted me to read up about differences between pneumonia and pneumonitis. Seems a lot of the symptoms are the same. I have not spoken to the doctor today but they did do a chest x-ray last night which to them showed pneumonia. Not sure if pneumonitis is on their radar although he is at a highly reputable Research Hospital. One of the two in the country that specializes in melanoma. He has been on steroids since the bout with diarrhea after the last nivo infusion. I have to double-check today and see what those that he is on. It has been a couple of weeks since steroid treatment was initiated. I see that treatment for pneumonitis is steroids, whereas treatment for pneumonia is obviously antibiotics, which he is on. He was better this morning and able to eat breakfast but then slept for 4 hours. Guess this is normal. Anybody would be tired if you have pneumonia right?It seems they would be able to tell if it is pneumonitis on a x-ray. Is this right?
Annie
-
- December 24, 2016 at 4:41 pm
Deb, your post prompted me to read up about differences between pneumonia and pneumonitis. Seems a lot of the symptoms are the same. I have not spoken to the doctor today but they did do a chest x-ray last night which to them showed pneumonia. Not sure if pneumonitis is on their radar although he is at a highly reputable Research Hospital. One of the two in the country that specializes in melanoma. He has been on steroids since the bout with diarrhea after the last nivo infusion. I have to double-check today and see what those that he is on. It has been a couple of weeks since steroid treatment was initiated. I see that treatment for pneumonitis is steroids, whereas treatment for pneumonia is obviously antibiotics, which he is on. He was better this morning and able to eat breakfast but then slept for 4 hours. Guess this is normal. Anybody would be tired if you have pneumonia right?It seems they would be able to tell if it is pneumonitis on a x-ray. Is this right?
Annie
-
- December 23, 2016 at 5:45 pm
Thank you so much Celeste, as always.I just spoke to the cardiologist and she said that the EKGs and all the other tests they have done show no damage to the heart walls or anything else. I asked about in the possible immune reaction and she said that they have kept it in the back of their minds but they still think this is related to a mild pneumonia. She said he has heart fibrillations but that’s all they can find. He has perked up throughout the day which is also a good sign.
Hopefully he will recover from this so we can get back on the BRAF/MEK. They temporarily stopped it due to the fever not knowing if that was what caused the sudden fever.
This sure is horrifying and scary. But I really feel he is in good hands and love the fact that the doctors will call me from my dad’s room to tell me what’s going on. My poor mom is there alone and is focused on being there for him.
Annie
-
- December 23, 2016 at 3:08 pm
Hey Annie,
Sorry sweetie. Sounds like his docs are managing things pretty well and it is often hard to get to what is actually causing a patient's problems when there are so many variables. However, you should know that, yes…immunotherapy can cause problems with the heart…sometimes masked as congestive heart failure…..in the form of myocarditis and other cardiotoxicities. Like most immune related side effects the treatment is steriods.
Here's a link to a post discussing many side effects (you'll have to look through for the heart related ones) with other posts linked as well: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/side-effects-to-immunotherapypart-6.html
Perhaps some of these articles will allow you to have a better discussion with the docs about the possibility of immune related side effects.
Hang in there. Wishing my best for you and your dad. celeste
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- December 23, 2016 at 9:29 pm
Hi Annie, just some stuff for you on Braf-Mek inhibitors. Best Wishes!!!Ed https://www.youtube.com/watch?v=P_WO3dvGmAs https://www.youtube.com/watch?v=0tL6uLzj6hc https://www.youtube.com/watch?v=K-Ivcf_YnNQ
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- December 23, 2016 at 9:29 pm
Hi Annie, just some stuff for you on Braf-Mek inhibitors. Best Wishes!!!Ed https://www.youtube.com/watch?v=P_WO3dvGmAs https://www.youtube.com/watch?v=0tL6uLzj6hc https://www.youtube.com/watch?v=K-Ivcf_YnNQ
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- December 23, 2016 at 9:29 pm
Hi Annie, just some stuff for you on Braf-Mek inhibitors. Best Wishes!!!Ed https://www.youtube.com/watch?v=P_WO3dvGmAs https://www.youtube.com/watch?v=0tL6uLzj6hc https://www.youtube.com/watch?v=K-Ivcf_YnNQ
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