› Forums › General Melanoma Community › Keytruda and low blood pressure/severe shortness of breath
- This topic has 19 replies, 4 voices, and was last updated 7 years, 7 months ago by
GonzoOne.
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- May 26, 2016 at 3:12 am
My husband is Stage IV (lung/liver mets) and after 13 cycles of Keytruda has developed a severe shortness of breath and blood pressure that has dropped dramatically. In reading Keytruda's patient information, side effects, etc. I am not finding anywhere that it states this could be a result of taking the Keytruda. His oncologist states that these symptoms are not related to the Keytruda. I tend to disagree with that statement at this time. His oncologist did schedule him for an echocardigram and a stress test. I also see on the FDA website where an individual can report side effects they are having while on meds…which I am going to do. Is there anyone else experiencing these side effects while on Keytruda?
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- May 26, 2016 at 6:19 pm
Sorry to hear this. I suffered from a bout of shortness of breath while on immunotherapy. It was really scary as I had never had anything like this before. But I also had had radiation treatment to tumors in my torso and it was finally determined to be radiation fibrosis of lungs, and not pnemonitis which would have taken me off the immunotherapy. On your profile I saw some radiation in your husbands past, and just wanted to mention it as a possibility. Also, as many of us are in the 50+ age group, you always must consider that not everything is a drug side-effect.
Gary
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- May 26, 2016 at 6:19 pm
Sorry to hear this. I suffered from a bout of shortness of breath while on immunotherapy. It was really scary as I had never had anything like this before. But I also had had radiation treatment to tumors in my torso and it was finally determined to be radiation fibrosis of lungs, and not pnemonitis which would have taken me off the immunotherapy. On your profile I saw some radiation in your husbands past, and just wanted to mention it as a possibility. Also, as many of us are in the 50+ age group, you always must consider that not everything is a drug side-effect.
Gary
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- May 26, 2016 at 6:19 pm
Sorry to hear this. I suffered from a bout of shortness of breath while on immunotherapy. It was really scary as I had never had anything like this before. But I also had had radiation treatment to tumors in my torso and it was finally determined to be radiation fibrosis of lungs, and not pnemonitis which would have taken me off the immunotherapy. On your profile I saw some radiation in your husbands past, and just wanted to mention it as a possibility. Also, as many of us are in the 50+ age group, you always must consider that not everything is a drug side-effect.
Gary
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- May 26, 2016 at 6:24 pm
Sorry, I should have added that autoimmune disease could be a culprit. When the drugs over-amp our immune systems, my doc said just about anything is possible and having the body systems turn against themselves, and over-reacting is not uncommon.
Gary
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- May 26, 2016 at 6:24 pm
Sorry, I should have added that autoimmune disease could be a culprit. When the drugs over-amp our immune systems, my doc said just about anything is possible and having the body systems turn against themselves, and over-reacting is not uncommon.
Gary
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- May 26, 2016 at 6:24 pm
Sorry, I should have added that autoimmune disease could be a culprit. When the drugs over-amp our immune systems, my doc said just about anything is possible and having the body systems turn against themselves, and over-reacting is not uncommon.
Gary
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- May 28, 2016 at 9:30 pm
Just an update…anemia may be the culprit as his level has dropped to 8.4. Plan is to draw labs again Tuesday and blood transfusion as needed. He did go ahead and get his Keytruda treatment on Friday. Also with the dropped blood pressure, I'm talking 96/63 at the lowest, my husband made the choice to stop his blood pressure meds which were given to keep the B/P at or below 140/90. His blood pressure readings had been well over that previously. But with a pressure of 96/63 why would you continue to take a med that was intended to hold the B/P down?
Regardless I'm open for any comments, suggestions, etc. and will post updates as we move on. Thanks to all and keep up the fight!!
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- May 28, 2016 at 9:30 pm
Just an update…anemia may be the culprit as his level has dropped to 8.4. Plan is to draw labs again Tuesday and blood transfusion as needed. He did go ahead and get his Keytruda treatment on Friday. Also with the dropped blood pressure, I'm talking 96/63 at the lowest, my husband made the choice to stop his blood pressure meds which were given to keep the B/P at or below 140/90. His blood pressure readings had been well over that previously. But with a pressure of 96/63 why would you continue to take a med that was intended to hold the B/P down?
Regardless I'm open for any comments, suggestions, etc. and will post updates as we move on. Thanks to all and keep up the fight!!
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- May 28, 2016 at 9:30 pm
Just an update…anemia may be the culprit as his level has dropped to 8.4. Plan is to draw labs again Tuesday and blood transfusion as needed. He did go ahead and get his Keytruda treatment on Friday. Also with the dropped blood pressure, I'm talking 96/63 at the lowest, my husband made the choice to stop his blood pressure meds which were given to keep the B/P at or below 140/90. His blood pressure readings had been well over that previously. But with a pressure of 96/63 why would you continue to take a med that was intended to hold the B/P down?
Regardless I'm open for any comments, suggestions, etc. and will post updates as we move on. Thanks to all and keep up the fight!!
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- May 30, 2016 at 10:52 pm
This is interesting for me as I have had severe side effects from keytruda that no one else has had. I have had extreme spondylitis/inflammation resulting in not being able to move without a lot of pain. I knew it was from the keytruda but they sent me to the rheumatologist who had me do thousands of tests to rule out anything else. In the end they found it was drug related but I suffered for a year. I am now on remicade which has really helped a lot. I think the immune system effects of keytruda are very important to report for others in the future, as these things could always be unrelated but I think we do have a gut feeling about it. I didn't go from a marathon running yoga person to a paraplegic in a few weeks because of an inherited arthritis. It's just common sense.
I had to do a lot of screening to get the remicade I am now also on ioniazid against TB which can be brought out by that drug
The remicade is given automatically to those patients who have life threatening inflammatory conditions like colitis. So I guess better safe than sorry and perhaps it was best for me to wait to get remicade. But I'm just telling the story so you can keep a watch out for inflammatory/immune system side effects and report them wherever they occur in the body.
Anne-Louise
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- June 4, 2016 at 2:41 pm
Thank you for the response and the information !! It has been hard to get the oncologist to listen to these effects without jumping to anything but the Keytruda and to listen to the idea that everyone does not fit into the one size fits all laboratory guidelines for normal levels. My husband did have one unit blood transfusion with a hemoglobin level 8.4 and had an ENORMOUS RESPONSE WITH IMPROVEMENT !! I remember when he told me something had changed in how he was feeling…he kept saying he could feel that something was wrong. In hindsight looking at his hemoglobin level graph, he actually pinpointed by how he felt when the level started its downward slide. Glad that you kept insisting for something better…keep up the fight !!
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- June 4, 2016 at 2:41 pm
Thank you for the response and the information !! It has been hard to get the oncologist to listen to these effects without jumping to anything but the Keytruda and to listen to the idea that everyone does not fit into the one size fits all laboratory guidelines for normal levels. My husband did have one unit blood transfusion with a hemoglobin level 8.4 and had an ENORMOUS RESPONSE WITH IMPROVEMENT !! I remember when he told me something had changed in how he was feeling…he kept saying he could feel that something was wrong. In hindsight looking at his hemoglobin level graph, he actually pinpointed by how he felt when the level started its downward slide. Glad that you kept insisting for something better…keep up the fight !!
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- June 4, 2016 at 2:41 pm
Thank you for the response and the information !! It has been hard to get the oncologist to listen to these effects without jumping to anything but the Keytruda and to listen to the idea that everyone does not fit into the one size fits all laboratory guidelines for normal levels. My husband did have one unit blood transfusion with a hemoglobin level 8.4 and had an ENORMOUS RESPONSE WITH IMPROVEMENT !! I remember when he told me something had changed in how he was feeling…he kept saying he could feel that something was wrong. In hindsight looking at his hemoglobin level graph, he actually pinpointed by how he felt when the level started its downward slide. Glad that you kept insisting for something better…keep up the fight !!
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- May 30, 2016 at 10:52 pm
This is interesting for me as I have had severe side effects from keytruda that no one else has had. I have had extreme spondylitis/inflammation resulting in not being able to move without a lot of pain. I knew it was from the keytruda but they sent me to the rheumatologist who had me do thousands of tests to rule out anything else. In the end they found it was drug related but I suffered for a year. I am now on remicade which has really helped a lot. I think the immune system effects of keytruda are very important to report for others in the future, as these things could always be unrelated but I think we do have a gut feeling about it. I didn't go from a marathon running yoga person to a paraplegic in a few weeks because of an inherited arthritis. It's just common sense.
I had to do a lot of screening to get the remicade I am now also on ioniazid against TB which can be brought out by that drug
The remicade is given automatically to those patients who have life threatening inflammatory conditions like colitis. So I guess better safe than sorry and perhaps it was best for me to wait to get remicade. But I'm just telling the story so you can keep a watch out for inflammatory/immune system side effects and report them wherever they occur in the body.
Anne-Louise
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- May 30, 2016 at 10:52 pm
This is interesting for me as I have had severe side effects from keytruda that no one else has had. I have had extreme spondylitis/inflammation resulting in not being able to move without a lot of pain. I knew it was from the keytruda but they sent me to the rheumatologist who had me do thousands of tests to rule out anything else. In the end they found it was drug related but I suffered for a year. I am now on remicade which has really helped a lot. I think the immune system effects of keytruda are very important to report for others in the future, as these things could always be unrelated but I think we do have a gut feeling about it. I didn't go from a marathon running yoga person to a paraplegic in a few weeks because of an inherited arthritis. It's just common sense.
I had to do a lot of screening to get the remicade I am now also on ioniazid against TB which can be brought out by that drug
The remicade is given automatically to those patients who have life threatening inflammatory conditions like colitis. So I guess better safe than sorry and perhaps it was best for me to wait to get remicade. But I'm just telling the story so you can keep a watch out for inflammatory/immune system side effects and report them wherever they occur in the body.
Anne-Louise
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- June 4, 2016 at 2:46 pm
Sorry…forgot to add. Off of the B/P meds his pressures have returned to a normal for over a week now. From a low of 96/63 to 120's/70's. We'll see if this maintains itself … still on Keytruda treatment.
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