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A MyLymphomaTeam Member asked a question 💭
Hull, UK

My husband has stage 4 MCL, was diagnosed in September 2025. He’s had 6 rounds of chemotherapy the last being on 2 February ‘26. He’s supposed to be having maintenance every 2 mths ongoing although still awaiting appt for that. He’s had a PET scan with results end of next week but he’s in a lots of pain in his legs, back and he says his arms feel ‘heavy’ and sometimes, stomach. Is this normal? Is it due to chemo? Or are they more symptoms and he’s (we) worrying unnecessarily? We won’t be… read more

April 1
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MyLymphomaTeam

Is pain in the legs, back, arms, and stomach normal after chemotherapy for stage 4 MCL?

The symptoms your husband is experiencing—pain in his legs, back, heavy arms, and stomach discomfort—could be related to chemotherapy side effects, but they shouldn't be dismissed without medical evaluation. Chemotherapy can cause Show Full Answer

Is pain in the legs, back, arms, and stomach normal after chemotherapy for stage 4 MCL?

The symptoms your husband is experiencing—pain in his legs, back, heavy arms, and stomach discomfort—could be related to chemotherapy side effects, but they shouldn't be dismissed without medical evaluation. Chemotherapy can cause various side effects including muscle pain, fatigue, and nerve-related issues.

However, since he has stage 4 MCL, these symptoms could also indicate disease progression or other complications that need attention. It's important not to wait until the scheduled appointment if symptoms are severe or worsening.

Here's what you can do before seeing the haematologist:

- Contact the oncology team or nurse line immediately if pain worsens or new symptoms develop
- Keep a detailed log of symptoms: when they occur, severity (1-10 scale), and what makes them better or worse
- Note any other changes like fever, increased fatigue, or difficulty with daily activities
- Don't hesitate to request an earlier appointment if symptoms are significantly affecting quality of life

Your concerns are valid, and staying in close communication with healthcare providers about new symptoms is crucial for managing MCL effectively.

April 1
A MyLymphomaTeam Member

Sorry to hear that. The newer medicines like the different BTKi pills are pretty good. Hope you enjoy your break, years ago while we lived in the UK we took the Eurostar to Paris for a bank holiday getaway and had a great time.
Hoping for your husband to have a good response to the next treatment

May 16
A MyLymphomaTeam Member

Crossing fingers didn’t work I’m afraid. It’s back with a vengeance! On to steroids for a week then a daily chemo tablet which the haematologist wanted to hold off on for a year. The maintenance treatment didn’t work. He’s really down right now but we’ve a short break in 10 days so something to look forward to. We’re not flying anywhere in case we need to get back to the UK quickly so using the train/Eurostar. Then on to October when our youngest daughter has recently planned her wedding. I think we need to have something to aim for from week/month to month.

May 15
A MyLymphomaTeam Member

First of all, thanks Roger3 for replying. Actually, we spent 2 days at the hospital last week because of badly swollen neck glands. He had a ct scan and results this week on Friday with his haematologist. Sounds ominous but hey, all ok. Down side, since then he has a huge lump appeared in the groin area which could or could not be the MCL making an appearance. The dr reiterated last week that MCL can be a bit unpredictable so we’re just living from day to day/week to week. Pain in the legs is due to the chemo. Since the 1st maintenance treatment, he’s got it he’s up the arms! If it’s not one thing it’s something else. Fingers crossed! X

May 12
A MyLymphomaTeam Member

First off I am not a Dr I have been fighting MCL for 3 years the symptoms could be from several things so important to discuss with Dr. in terms of the PET scan get the Dr to tell you the Deauville score https://en.wikipedia.org/wiki/Deauville_Criteria

Deauville Criteria - Wikipedia
Deauville Criteria - Wikipedia
April 27

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