Shaking and extremely cold after chemo

Posted by minimia @minimia, Jun 10, 2020

Any insights on what causes shaking and being extremely cold during/after chemotherapy treatment?

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Profile picture for oakwood @oakwood

My husband has stage 4 esophageal cancer and has started 3000 mg Capecitabine each day of radiation. Coming home, he got the shakes so bad, he pulled over to let me drive. I plan on mentioning it tomorrow to the radiologist but I am now concerned about him driving alone. I have heard of people driving themselves to radiation and chemo infusions. So should I be concerned?

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@oakwood Hi and welcome to Mayo Connect. When does he take the capecitabine? Does he take it at home?

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Profile picture for oakwood @oakwood

My husband has stage 4 esophageal cancer and has started 3000 mg Capecitabine each day of radiation. Coming home, he got the shakes so bad, he pulled over to let me drive. I plan on mentioning it tomorrow to the radiologist but I am now concerned about him driving alone. I have heard of people driving themselves to radiation and chemo infusions. So should I be concerned?

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@oakwood, the American Cancer Society has a program of volunteers across the nation offering free rides to cancer-related medical appointments. See more info here:
- American Cancer Society Road To Recovery® program https://www.cancer.org/support-programs-and-services/road-to-recovery.html

My dad was both a volunteer driver and then a cancer patient who used the service. His driver was also a cancer survivor and a welcome companion on the drive.

How is your husband doing? How are YOU doing?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@oakwood, the American Cancer Society has a program of volunteers across the nation offering free rides to cancer-related medical appointments. See more info here:
- American Cancer Society Road To Recovery® program https://www.cancer.org/support-programs-and-services/road-to-recovery.html

My dad was both a volunteer driver and then a cancer patient who used the service. His driver was also a cancer survivor and a welcome companion on the drive.

How is your husband doing? How are YOU doing?

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@colleenyoung Thank you for your reply, but I don't think we need drivers. Maybe when he gets sicker. Do you have anyone for Newark, MO?

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@oakwood Hi and welcome to Mayo Connect. When does he take the capecitabine? Does he take it at home?

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@tomrennie
We finally got on the same time each day for radiation so that helps if figuring out Capecitabine, thyroid med and eating. He takes it in the car, on the way home after eating and again at night after supper.

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Profile picture for oakwood @oakwood

@tomrennie
We finally got on the same time each day for radiation so that helps if figuring out Capecitabine, thyroid med and eating. He takes it in the car, on the way home after eating and again at night after supper.

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@oakwood Timing all of meds can be a challenge. I wasn't good at it. So, once we figured out what worked best for my body, my wife put the meds and the times to take them on a spreadsheet. Over 3.5 years later, it still hangs on the refrigerator. I can't miss it there.

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I have multiple myeloma and neuropathy. I am having chemotherapy shots every month now and having serious issues with my legs and trouble walking.The dr just tells me it part of the treatment but it’s getting worse. I also have severe shaking. Does anyone have any suggestions on how to deal with this?

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Profile picture for karril3994 @karril3994

I have multiple myeloma and neuropathy. I am having chemotherapy shots every month now and having serious issues with my legs and trouble walking.The dr just tells me it part of the treatment but it’s getting worse. I also have severe shaking. Does anyone have any suggestions on how to deal with this?

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@karril3994 Welcome to Mayo Clinic Connect! So sorry to hear these side effects. What medication are you taking, please? Does the shaking and trouble walking get better after the shot, perhaps two weeks after, or is it constant?
Ginger

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Profile picture for Ginger, Volunteer Mentor @gingerw

@karril3994 Welcome to Mayo Clinic Connect! So sorry to hear these side effects. What medication are you taking, please? Does the shaking and trouble walking get better after the shot, perhaps two weeks after, or is it constant?
Ginger

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@gingerw I am taking Lenalidomide generic for Revlimid three weeks on one week off for the past year and a half. The pain and shaking is constant . I have blood work done before getting my chemotherapy shot sometime my white count is to low and I am given a blood shot to bring it up .

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Profile picture for karril3994 @karril3994

@gingerw I am taking Lenalidomide generic for Revlimid three weeks on one week off for the past year and a half. The pain and shaking is constant . I have blood work done before getting my chemotherapy shot sometime my white count is to low and I am given a blood shot to bring it up .

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@karril3994 I was on that too, from Aug 2021 to Mar 2025. Yes, also had to have the blood shot from time to time. What has your doctor told you about what to do? Personally, hearing him say, "it's part of the treatment" is not a good answer. Are you eating well, and getting enough protein into your system? Hydrating okay?

For me, getting enough good rest was critical. That meant there were often days I just cuddled on the couch with a cat, under a blanket, if that is what my body told me to do. I kept a watch on my blood counts, making sure I was eating healthy. The diarrhea and fatigue were overwhelming, and finally we decided those side effects were just not right for me. We moved to Ninlaro only in March 2025 [I started that Nov 2024].

When is your next appointment, and can you talk to your doctor to see about modifying your treatment protocol?
Ginger

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Thank you for your support. It’s just good to see someone else is having the same experience. I felt it was just me. They have lowered the dosage but I still have the same symptoms. It is making it harder to keep up a good attitude. I will just keep pushing forward.

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