weight loss

[Kuucat2021]

I am in watch & wait and three years post diagnosis. I feel good and have always exercised daily sometimes strenuously and my earring habits remain the same-healthy and hearty. I have been dropping weight slowly but steadily about 10-12 pounds over the tree years. No swollen nodes or spleen. Have others experienced this?

[neurodervish]

Gradually "dropping weight slowly but steadily about 10-12 pounds over the tree years" sounds very normal, especially given the fact that you exercise every day and eat a healthy diet. If you don't have a swollen spleen or other CLL symptoms, I'd say "if it ain't broke, don't fix it." 😀

[Kuucat2021 in reply to neurodervish]

Thanks for the reassurance!

[JigFettler Volunteer]

Sounds like a normal response to sustained physical activity.

In the absence of any other issues, as neurodervish suggested probably all good.

However, I am curious to know why you posted this, what is your concern?

It could be helpful to LOCK your post to attract more responses.

healthunlocked.com/cllsuppo...

Jig

[Kuucat2021 in reply to JigFettler]

Thanks- I just think I am a bit paranoid about having a leukemia type illness. I exercise more now than what I did prior to retirement, but it still feels off. Thanks for your suggestion of locking my post

[JigFettler Volunteer in reply to Kuucat2021]

Exercise is good. Keep intensity sensible.

After I had FCR my fitness improved, even during chemotherapy. Both strength and cardiovascular.

Suggests WandW could impair fitness, not surprisingly.

I am convinced myself it's good to move, and move against some resistance. That for me is cycling. 😁

Jig

[LeoPa]

Your problem would seem like a solution to many 😁. Unless you are already underweight you should be good.

[carnvellan]

I experienced similar weight loss prior to treatment too. It might be worth checking whether you are eating enough to keep up with your more strenuous exercise. Part of my problem was using up a lot of calories in exercise and not replacing them in my diet. I have had to increase calorie intake and my weight is now stable. This may be the case with you. As I am a participant in the CLL Exercise and Nutrition study at Surrey University, I have had this measured and adjusted. Here's the link to the study: cllsupport.org.uk/conferenc...

[BaseballGardener]

This is to be expected. CLL is a cancer, and cancer will generally cause weight loss. I witnessed weight loss with my mom who was on W&W for 3 years and eventually started taking acalabrutinib. My mom 's weight loss eventually stopped, perhaps because she responded well to the drug, or perhaps her body was adjusting to her new health conditions. Eventually, you may leave W&W, so it is important to continue to monitor the hematology reports for trending. I would suggest you discuss the loss of weight with your oncologist, or whoever is managing your condition. I would think that if your weight and BMI are still within normal ranges, then you are in a good place.

[Justasheet1]

Kuu,

When you see your oncologist or hematologist for your next appointment, let them know. Unexplained weight loss needs to be mentioned.

During watch and wait I saw the doctor for regular blood draws with vitals every six months. Has the doctor mentioned anything to you during this two year period?

Jeff

[Kuucat2021 in reply to Justasheet1]

No my CLL doc when I last saw her did not seem concerned although I mentioned it. Last saw her three months ago. However I am still losing pound by pound I may call her nurse practitioner to bring it up again

[sidesy]

Personally I've lost what was a constant big eating and weight training diet to where some days I almost forget to eat. Fasting is never a bad thing now and I've lost 13 kgs in about a year but most of this is muscle from not training 4 days a week ...I'd say youre probably thinking more about diet....reducing refined sugar ...perhaps not snacking as much so your weight loss is bound to occur (for the vast majority of people).

It's good to ask though 💪🏻💪🏻👍🏻....one less thing to think about ....I wish you well...

I still track my calories though via my fitness pal app.....very handy 👌

[Lenny123]

Two cents is to get and follow BCA( body composition analysis. This allows you to see what is beineg lost. Remember muscle is heavier than fat.

Relevant especially because you work out.

BCA probably best done with DEXA scan. Can sort out muscle from bone, from fat.

[thompsonellen2]

The docs are only concerned about rapid weight loss. For example, I lost 8 lbs in a week and that was part of a larger problem. My guess is if you logged your calories and activity, you are running a mild deficit. Personally, I gained weight on CLL and during COVID but am back to my high school weight through diet and exercise.

[Alex830]

My big weight loss was in the three months before I started treatment. I lost about 37 pounds.

[BeckyLUSA]

Are you trying to lose weight? Are you exercising and eating the way you eat to lose weight or to be healthy? When I was first diagnosed I was about 30 lbs overweight. I have fought my weight and a mild eating disorder most of my life. My oncologist told me not to try and lose the weight, that it would come off by itself. He was right. I was on W&W for 18 months and by the time I started treatment had lost 20 lbs. Lost another 10 during the first 6 months of treatment. You note you are exercising, sometimes strenuously…are you exercising too strenuously? Not saying to stop what you are doing, just make sure you are doing it for the right reasons. We can diet and exercise for the wrong reasons. If it continues though, I am sure the consultant will take notice at some point.

[Kuucat2021 in reply to BeckyLUSA]

I was not overweight when diagnosed and am really not doing much different in terms of diet and exercise than when first diagnosed-maybe a bit more exercise than before. I see my specialist again in three months and will speak with her about it the. Exercise really helps my stress level so gotta keep doing it! Thanks for your response

[BeckyLUSA in reply to Kuucat2021]

Understand completely! Good luck!