Body wide pain from 5FU

Posted by lilliejane2 @lilliejane2, Dec 19, 2023

Hello everyone.
Has anyone experienced awful pain from infusions of 5FU?
My joints, ribs, back and muscles are really painful after 6 infusions.
Any advice?

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I was told I might have bone pain after chemo. They told me to take Claritin. I never had any pain like that. Of course check with your doctor.

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The bone pain idea is a good one to explore. It was explained to me this way: Chemo depletes your blood. In response, I was given a dose of Udenyca (another version is Neulasta), which activates the bone marrow to work and replenish the blood. The injection was delivered at least 24 hours after the 5FU pump went off. The bone marrow activation can be very painful, I was told, especially in long bones. I was told to take an antihistamine, such as Claritin or Zyrtec, a few hours before the Udenyca was delivered and continue it for a couple of days. Are you receiving Udenyca or Neulasta or another similar drug? If so, this might be what you're experiencing.

Another idea: Sitting around during chemo and the days afterward, as we recover, is hard work. It makes me feel very stiff and sluggish and sometimes makes me feel physically tense, like I'm on guard as the treatment progresses. Could your discomfort be related to this? If so, you might benefit from some medication (ex. Tylenol) or gentle massage or an easy walk.

Please don't take any of this as valid; I'm not a medical professional, so these are just ideas based on my experience. Please tell your MD what you're experiencing so he/she can help you. I hope you feel better soon!

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I’m a 58 yr old diagnosed with PC in Feb 2023. I was blessed (if one could call it blessed) to be stage 1b. I had 6 rounds of 5FU before my June 2023 Whipple and had 6 rounds of 5FU post surgery. I didn’t experience much negative side effects throughout the entire 12 rounds. I guess that was a blessing.

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Hi. Please do ask your team about this *immediately*.

I was told to take Claritin on days 1 thru 5 (weirdly, it prevents or reduces bone pain). I was also given a shot of something similar to Neulasta (as ncteacher described above) every time I had the pump de-accessed after its 46 hours attached to me.

I believe that these meds prevented bone pain for me. (Also, I took one dose of a steroid, dexamethasone, on days 1 thru 3; not sure whether that also prevented one pain.) Are any of these part of your care?

Good to see you on the board BUT not under these circs -- so sorry that you're in pain. Wishing you well.

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