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Keytruda nerve/ muscle spasms
During my 4th Keytruda infusion I had what I call nerve jerks, a zing would travel down my leg to my foot and cause it to jerk up off the chair, this lasted for the whole 1/2 hour infusion period. Some nights they are so bad they keep me awake.
During my 5th Keytruda infusion the muscle/nerve jerks were delayed until the Carboplatin infusion and did not last as long, about ten minutes.
When I walk my knee will give out at times so I am careful how I step. My Doctor thought I might be low on magnesium but the labs show I am at the top end of the normal scale. He did not seem concerned about this side effect.
Anyone else experienced this side effect? Hoping it is not the start of some autoimmune issue.
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That is awful that those side effects bother you so badly! I'm so sorry that is happening to you. My husband had lung cancer. He had 4 infusions of Keytruda and got Pancreatitis from it. Pancreatitis is a known side effect of Keytruda. He almost died from the Pancreatitis. Luckily, our primary care doctor got him to a specialist that was able to cure my husband of the Pancreatitis. My husband refused anymore of the Keytruda treatments. The cancer doctor was not happy with his decision. Keytruda infusions at that time, a few years ago cost $25,000 per infusion. However, it was my husband's body and money. He lived for 14 years with cancer after that. He died one year ago.
You might want to look up the side effects of Keytruda so you know what to expect with your future infusions. The Mayo Clinic is the best place for that kind of research.
I hope things get better for you! Prayer helps a lot. Just ask God for his guidance and you will receive it. I'll say a prayer for you also.
PML
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2 ReactionsPML,
Thank you for your kind words, and I am sorry for your loss.
I am thinking of not continuing on with the Keytruda treatment as I do not have any of the molecular markers which it is known to work on and the side effects appear to be under reported. The oncologist wants to do 14 more Keytruda infusions. My gut instinct says no, my head says it might work.
The Doctor told me there is not anything else available to treat my stage 4 endometrial serous cancer beyond the Carboplatin, Taxol, and Keytruda infusion series which I just finished.
I have read that one of the side effects can be MS. When my leg suddenly collapses while walking I wonder if my nerve jerks are the beginning of damage that could lead to MS? Hopefully not but who knows. Keytruda permanently damages DNA, so side effects can pop up years later.
Did your husband do anything special to survive 14 years with lung cancer?
Thank you so much for your prayers, it means a lot to me. I am trying to live in the present and enjoy the blessings of the day, today you are one of them!
beebe
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1 ReactionThank you for the kind words! I'm glad I could help a little!
I didn't know that MS was a side effect of Keytruda. That is very scary! I read all the side effects of Keytruda when my husband first reacted to it. Possibly they didn't know about MS being a side effect then. It was back a few years. After his terrible reaction to Keytruda and also Chemotherapy didn't go well for him either, he quit all medications. He ate good quality red meat; steaks, roasts and hamburgers often. He also ate fish a lot from Iceland. Iceland is one of the few places that still has clean waters so their fish is very good. My husband was very active until the last year of his life. He did carpentry work, yard work etc. Plus we prayed everyday and I'm sure that helped a lot.
It's good you are living in the present. That's so important to do. We really don't know what tomorrow will bring. So we need to enjoy what we have today. I try and do that also. It's much harder since my husband died but I'm getting better at it. I wish you the best in whatever decision you decide to make about your treatment.
I'll say a prayer for you.
PML