Appetite, weight, energy....

[battanim]

So, I am 13q deletion, mutated, watch and wait for about 7 years. Latest white count 53.6 and it is going up quite slowly. I've been told sudden inexplicable weight loss is a symptom to watch for. I don't feel like I'm there but I do feel like I need to eat way beyond my appetite or I start to loose weight. I'm a life-long cyclist and have always been tuned in to needing to fuel up on long rides. Now, I feel like as soon as I start a ride (or even a hike) I am almost immediately feeling a deficit...hungry all of a sudden and feeling like I must consume calories or I loose all energy.

My doctor is focussed on the fact that I'm not loosing weight "suddenly and inexplicably" so thinks this is just another thing to be watching and waiting on. I have no other physical symptoms - nodes are not swollen, spleen is fine, no night-sweats.

Any advice? Should I be concerned?

[seelel]

What you have described doesn't sound CLL related to me. It's possibly metabolic or an ageing related change. I don't know what to suggest.

[GMa27]

See a gastroenterologist & have them check you for gastroparesis. I was 13q mutated for 10 years when I had odd hunger & need to eat a lot to feel full. I gained weight which is different than you. Finally after 5 months of never feeling full I had what I thought was a stomach bug. After a few tests they did the gastric elimination test & discovered I had gastroparesis. 2 years later I needed chemo & my W&W was over. Nodes did get bigger, became anemic & wbc was 225k. The chemo put me in remission & then 5 months after remission, the gastroparesis disappeared. It was caused by nodes near my vegus nerve. Your symptoms can be from a digestive issue & not CLL. Always good to get checked.

[kaymack]

How are your Haemaglobin and Platelet counts? If they're still good, I wouldn't worry about your CLL.

[Baz209]

One of the many symptoms of CLL is weight loss, and I myself got so worried about it I put on weight. It took a bit of time and effort to actually loss all the weight I gained. To that end, if your doctor has said your fine, then eat what you need to.

[Gampo]

Hi, as a keen runner I experienced a period when I felt physically fine but when running 10K never knew if I’d have enough energy to get me to the end, so I learnt to carry gels to avoid getting so light headed I’d have to stop and rest. At the time my CLL was steadily progressing but there was little outer evidence except feeling the cold more than before. This started a two years before I got to the point of needing treatment. I don’t think you need to worry, especially if your blood counts are fairly stable. Good luck.

[LeoPa]

Are you underweight? Those long rides. Do they fall into the carb-fueled or fat-fueled range, intensity wise? How is your B12 level?health.com/vitamin-b12-defi....

[Snakejaw]

you sound like you’re doing pretty well to me, cycling is a great lifestyle choice. I lost about ten pounds over a year and a half, it was kind of subtle, but I’m a generally skinny/gangly person, so it showed. Since going on treatment I’ve gained it all back and am actually watching my weight a bit.

[jiffer]

From another lifelong cyclist. I've experienced that need to fuel up during rides. Prior to my venetoclax treatment, I planned my mountain bike rides to end on flat trails or planned my road rides to end with a tail wind to be able to get through them in case I hit a wall. I have not experienced any weight loss issues. One thing for sure, don't ever stop riding that bike. The psychological and health benefits are immeasurable.

[CycleWonder]

I think since this is a concern for you and it’s a change, you should start with your CLL specialist and if it’s not of interest to them, then see your regular doctor. Something is going on, whether it’s metabolic or heart related or CLL related. Often a patient will know something is wrong before a doctor does.

I have been complaining of chest pain for years. After an endoscopy, the reason for my pain was revealed to be a hiatal hernia with a sac filled with bile, likely linked to my gall bladder removal and swollen glands prior to treatment.

Other doctors are often reluctant to tread on what they feel is another specialist’s territory but there are times we need help that requires the input of more than one specialist.