CLL Support Association
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Weight monitoring?

I was wondering if other people routinely have their weight checked as part of the CLL monitoring process?

I'm aware from CLL literature that weight loss and poor appetite can be indicative of 'B' symptoms progressing more rapidly but it occurs to me that I've never been weighed or indeed been asked about my weight since diagnosis.

I'm not actually losing weight (even though I could do with it) but am aware that I don't gain it as easily as I once would.

Have others experienced significant weight loss or poor appetite with CLL?


12 Replies

Hi Newdawn

Being weighed is part of the monitoring process when I visit my consultant, It breaks up the wait and shows me I'm moving in the cycle. this is the system at my hospital clinic.

when I report to the clinic reception I receive a blood request slip which I take to phlebotomy they then draw blood. I return back to the waiting room. while my blood sample is turned around (takes about an hour). Shortly after returning I am called up to the weigh in room and processed by the nursing team and then moved to a second waiting area outside the consulting rooms once my bloods come back from phlebotomy.. (I then know the wait will not be much longer)


Hi Newdawn,

As with Nick, checking my weight is always part of the routine when I go to Barts for a checkup, but never when I go to my local hospital. The only time I've lost weight (I remember once going into town and having to physically hold up my trousers) or suffered loss of appetite was whilst I was receiving treatment. I still gain weight far too easily, and could do with losing a few pounds now. Must try harder...


I get on the scales at each consultation. You may want to talk to the oncology dietitian, most hospitals have a few on staff...

Certainly when you start chemo, they come out of the woodwork and drive you crazy...

I'm a huge advocate of daily walking...bought me 3 years of W&W...



In the 2 years before my CLL dx I lost over 2 stones of weight. I put it down to a poor appetite, during a period of enormous stresses in my life at the time but so many people commented to me and worried that I was seriously ill. I told them I was fine and then I got my dx and they must have thought they knew all along that they had been right. However, the weight went back on and I am still at Stage A, pre treatment, at two and a half years post dx. I am not overweight but I have to watch what I eat!

I am weighed routinely each time I go to my CLL consults too and the nurse actually said (not referring to me) that it does no harm and could actually help at an early stage to have a little bit of extra weight (not too much) - maybe thinking ahead to treatment and possible side effects of loss of appetite then.

Take care and move away from that cake!

sparkler x

1 like

I'm always weighed during the consultation. Nodes, spleen, liver and lungs are always checked and my blood pressure is nearly always checked.

I lost weight without trying in my first year of diagnosis, but that was a bad year infection wise and I've since regained that weight as I've learned how to reduce my infection risk.

I've also heard that carrying some extra weight can help you through the chemo treatment, when appetite loss is common. Then again, going into chemo with good fitness also helps and there are well known risks of carrying extra weight. One advantage of regular blood tests for me was detecting a steady upward trend in my blood glucose levels (my doctor said it would only be a matter of time until I was diabetic). I've brought that under control by changing my diet and increasing my exercise levels.



I'm weighed each time i visit hospital.

I also do the following myself each day, weight, blood pressure, heart rate and temperature. This also gives me BMI which allows me to modify my diet a little if need be.

Just like facts and figures and over time this allows me to keep an eye on myself without any sudden big panics, or is it, as my kids say 'i'm a geek'.

During my RFC treatments i lost just over 7kg, Some of that has gone back on now. However, i was feeling a bit overweight before and i definitely feel better for losing the weight in general.



From a medical perspective, following weight changes is such an easy thing to do, that weighing AND recording the weight in the notes and any correspondence should be routine.

In our clinics, all patients are weighed while they are waiting, but sometimes the weight is not actually recorded in the patient's notes!

The interpretation of weight loss can be complicated - CLL-related, active dieting, normal variation (eg summer vs winter) etc

However, significant weight loss (clothes have become loose) without dieting is usually accompanied by other features - sweats, changes in the blood count or lymph nodes - so it is clear we need to be thinking about further investigations and treatment.


I have actually put on weight and although my appetite is not quite as strong as it used to be I am 68 years old and less active than I used to be.


Hi Newdawn, I am also weighed before each consultation. My sister bought me scales when I moved here, so I keep an eye on my weight but it hasn't changed since I was diagnosed and my appetite remains good.



Thanks for your useful feed back folks. I had suspected it might be a usual monitoring procedure for obvious reasons.

All this talk of weight has galvanised me into action as I initially lost about 9/10 lbs prior to diagnosis (which was unheard of for me) and I'm now going to make a real effort to continue with that to increase my overall fitness for the future rigours.

Best wishes to all,

Newdawn x


I am only relitively newly diagnosed (no treatment needed yet), but do occasionally weigh myself - it is not part of my medical check-up routine. I get bloods taken at GPs a few days before hospital appointment, so the appointment is just the consultation re blood results, which works well for me (v efficient and off work for a minimum). I would bring weightloss up at these meetings when/if it happens

I am a pretty normal weight, perhaps 8lbs above where I should be - nothing dramatic. What I have noticed is, whilst my appetite is not effected (I still eat well), I don't put on weight anymore whatever I eat. So weight is pretty stable - my tastebuds appreciate this at moment!

I am quite fit for my age (53) and my consultant encourages me to keep swimming/gym/cycling going. I do notice I can't go as fast as I used to and puff more easily - indeed this varies up and down over months (I put it down to variations in less red blood cells/lower haemoglobin). However I intent to keep as active as I can and even if it has no physical benefits (which I think it has), the physological uplift is enough.



I get weighed at the clinic (Haematology) about once a year and they used to mutter darkly about weight loss and the prospect of treatment, etc.

So now I weigh myself every week and if there is a significant drop I eat more.



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