Hi,I’m currently on lenelomide maintenance after a Stem cell transplant in August 22. I’ve been struggling with fatigue for the last 6 weeks after doing anything physical.My consultant says I’m doing too much but 2 hours trimming a hedge and pruning and then I’m totally done in and sometimes the next day too. My bloods are ok so is this how it is going forward? Looks like I’m having to stop working too. Any advise would be greatly appreciated.
Thanks John
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Unfortunately the nature of our cancer and a side effect to maintenance treatment is fatigue
I’m on dara maintenance and on my fatigue days I just rest they are my rest days
I’m 2 years post second transplant and fatigue has always been in my myeloma life
Re work is there somewhere in the company that would be easier for you and on lower hours
Have you asked for any reasonable adjustments?
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Hi,I work in the building trade for a small company. I was in managerial role but because of the time off and stress of the job which is a full on and doesn’t work well with time off as things change daily my roles changed to a physical one . With the way my fatigue is I can’t see me getting back to work. I’m 61 soon and on lenelomide maintenance which is doing the job well but side effects are worse.
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Have you applied for PIP
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I’m in the process of that thanks .
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Hi @JE1963 sorry to hear about your fatigue.
I find that my fatigue can be triggered by what personally stresses me emotionally, psychologically practically physically or medically and it can come on immediately or up to 48 hrs later.
I have come to know myself and how I tick better over the last 20 yrs and I have learnt to manage my fatigue and life is good,
Perhaps think before handing in your notice and see if there might be a package to be negotiated and @2DB has given you useful links.
Look after yourself and please do keep posting how you are.
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Hi Erica,I’m pretty certain it’s a physical thing. For example a couple of hours trimming and pruning in the garden and then it’s like a cloud engulfing me and I’m totally shattered. What I’m struggling to understand is 2 months ago I’d been ok for a year and now I’ve gone back to Stem cell transplant days. I’ve had a couple of infections and low neutrophils which I’m having to inject once a week with fagastrim ( not sure if correct spelling) but my consultant says it’s not connected. So I have to presume it’s a part of the illness and side effect of lenelomide. Thanks john
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Hi @JE1963 I will copy the details on Lenalidomide from the Macmillan Cancer Support.
Lenalidomide (Revlimid®) | Macmillan Cancer Support.
I haven’t got a garden now but I always found it hard work.
What a brilliant way of describing it ‘it’s like a cloud engulfing me’ yep, that’s my fatigue too.
Look after yourself and please do keep posting
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