Wondering about Melanoma and Keytruda side effects

Hi. So sorry you are going through this. It seems the effects from keytruda are really different for different ppl. After my first dose my doctors told me to go on a weeks holiday as they would expect the effects to build up over time and be stronger after three weeks. I had diarrhea the next day and was coughing up small blood from the tumour in my chest so my feeling is there was an immediate effect but it died down and I was fine for five months. After that I have had really bad inflammation in my muscles for the last 5 months and had to stop and go on steroids. They say that when you start on keytruda you have to imagine all those cancer cells and all the activated immune cells in a war with each other so it definitely could be that. also lung tumour are normally not painful till they hit the lung wall as we don't have nerves in our lungs. One of the common side effects can be colitis. Hopefully the keytruda will shrink your mums tumours at it did mine. It is a miracle drug so I really wish you well

anne-Louise 

Hi. So sorry you are going through this. It seems the effects from keytruda are really different for different ppl. After my first dose my doctors told me to go on a weeks holiday as they would expect the effects to build up over time and be stronger after three weeks. I had diarrhea the next day and was coughing up small blood from the tumour in my chest so my feeling is there was an immediate effect but it died down and I was fine for five months. After that I have had really bad inflammation in my muscles for the last 5 months and had to stop and go on steroids. They say that when you start on keytruda you have to imagine all those cancer cells and all the activated immune cells in a war with each other so it definitely could be that. also lung tumour are normally not painful till they hit the lung wall as we don't have nerves in our lungs. One of the common side effects can be colitis. Hopefully the keytruda will shrink your mums tumours at it did mine. It is a miracle drug so I really wish you well

anne-Louise 

Hi. So sorry you are going through this. It seems the effects from keytruda are really different for different ppl. After my first dose my doctors told me to go on a weeks holiday as they would expect the effects to build up over time and be stronger after three weeks. I had diarrhea the next day and was coughing up small blood from the tumour in my chest so my feeling is there was an immediate effect but it died down and I was fine for five months. After that I have had really bad inflammation in my muscles for the last 5 months and had to stop and go on steroids. They say that when you start on keytruda you have to imagine all those cancer cells and all the activated immune cells in a war with each other so it definitely could be that. also lung tumour are normally not painful till they hit the lung wall as we don't have nerves in our lungs. One of the common side effects can be colitis. Hopefully the keytruda will shrink your mums tumours at it did mine. It is a miracle drug so I really wish you well

anne-Louise 

Hi P Meyers,

The side effects for Keytruda/Pembro are much the same for Nivo/Opdivo.  Here is a post I made addressing the most common side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

It is well known that with immunotherapy (like ipi and anti-PD1) tumors can enlarge at first….before ultimately shrinking. I think it is possible that that has happened with your mom given her lung and liver tumors…with subsequent abd pain and increased oxygen requirements.

Additionally, Anne-Louise is right.  Significant side effects can be the development of pneumonitis (inflammation in the lung) and colitis (inflammation of the GI tract).  Diarrhea is often part of colitis…which you didn't mention.  But, if either of these are thought to be a part of the problem….prednisone and other meds to decrease the reaction are needed, helpful, and studies have shown that they do NOT diminish the positive effects of the immunotherapy.  Here is a post that addresses that research:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html

Bottom line, you and your mom's docs know far better than I about what is going on with her.  But, these are some points you might discuss with her docs.

I wish both my best.  Celeste

Hi P Meyers,

The side effects for Keytruda/Pembro are much the same for Nivo/Opdivo.  Here is a post I made addressing the most common side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

It is well known that with immunotherapy (like ipi and anti-PD1) tumors can enlarge at first….before ultimately shrinking. I think it is possible that that has happened with your mom given her lung and liver tumors…with subsequent abd pain and increased oxygen requirements.

Additionally, Anne-Louise is right.  Significant side effects can be the development of pneumonitis (inflammation in the lung) and colitis (inflammation of the GI tract).  Diarrhea is often part of colitis…which you didn't mention.  But, if either of these are thought to be a part of the problem….prednisone and other meds to decrease the reaction are needed, helpful, and studies have shown that they do NOT diminish the positive effects of the immunotherapy.  Here is a post that addresses that research:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html

Bottom line, you and your mom's docs know far better than I about what is going on with her.  But, these are some points you might discuss with her docs.

I wish both my best.  Celeste

Hi P Meyers,

The side effects for Keytruda/Pembro are much the same for Nivo/Opdivo.  Here is a post I made addressing the most common side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

It is well known that with immunotherapy (like ipi and anti-PD1) tumors can enlarge at first….before ultimately shrinking. I think it is possible that that has happened with your mom given her lung and liver tumors…with subsequent abd pain and increased oxygen requirements.

Additionally, Anne-Louise is right.  Significant side effects can be the development of pneumonitis (inflammation in the lung) and colitis (inflammation of the GI tract).  Diarrhea is often part of colitis…which you didn't mention.  But, if either of these are thought to be a part of the problem….prednisone and other meds to decrease the reaction are needed, helpful, and studies have shown that they do NOT diminish the positive effects of the immunotherapy.  Here is a post that addresses that research:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/immune-related-side-effects-from.html

Bottom line, you and your mom's docs know far better than I about what is going on with her.  But, these are some points you might discuss with her docs.

I wish both my best.  Celeste