Weight Loss

[CouldBworse]

Hello CLL Family, Hope all is going well withveach and everyone ! I was diagnosed with CLL May 2018. I am still on "wait & watch", having no treatments. At the time I was diagnosed in May, I weighed about 185lbs. I currently weigh 173lbs. Is that considered a lot of weight loss within 2 years ? I don't always eat 3 meals a day, and I usually gorge myself at night. My last WBC was at 35, on a range of normal between 4-10. Can you share your experiences. I pray everyone continues to do well.

[AussieNeil Partner Administrator]

The trigger for considering treatment is 10% or more unintentional weight loss. So unexpectedly dropping below 166 pounds would be of concern. Also, track your absolute lymphocyte count, not your WBC, remembering falling platelet haemoglobin and platelet counts are the issue, not WBC or lymphocyte counts. It's the lymphocyte doubling time (under 6 months), that indicates treatment may be needed, but the lymphocyte count should first be over 30. Yours is probably around 30.

Neil

[cajunjeff]

Have you changed your eating habits since diagnosis? Generally speaking, losing more than 5% of your body weight over a six month time frame without trying, would be considered an unintended weight loss that should be reported to your doctor.

You have lost about 6 or 7 % of your body weight over two years, so I would say, and this is not a medical opinion for sure, that would be considered an unusual amount of weight to lose without having made any diet or lifestyle changes.

I have lost 13 pounds in the last six months, but that for me has been by the hardest, significantly cutting back on carbs and calories.

Your modest weight loss over two years does not terribly seem alarming to me, but worth reporting to your doctor if it was unintentional.

Just based on my own personal experience, it would take a lot of effort for me to lose 12 pounds.

[CouldBworse in reply to cajunjeff]

Thanks Cajun, I have cut back on sugars, priamarily soda, and also, don't always eat 3 meals a day, being on the run. My appetite is good, my spleen is not beyond size margins, and my Dr doesn't feel that it is anything to be alarms over, however, this is the lightest I have been in years. Thanks for the feed back and support. Hope you are doing well ! Regards.

[cajunjeff in reply to CouldBworse]

Good deal. If your weight drops due to a diet change like yours did, I don’t consider that to be an unintended weight loss.

[Smakwater]

CouldBworse,

Weight loss and CLL prior to treatment is usually influenced by the spleen size increase when it becomes infiltrated with CLL. One of the influences of an enlarged spleen is that it can cause the stomach to feel full. The result is that one would then eat less thus losing weight.

If you are gorging at night with an enlarged spleen, you would most likely be uncomfortable. In addition, oncologists usually feel the area of the spleen on CLL patients as a standard measure of progression and they would alert you to the fact that it is enlarged. At each visit prior to seeing the oncologist, they should be taking your weight and recording it.

There are however, other influences with CLL that can influence weight loss when CLL cells infiltrate other biological players, e.g, thyroid glands, pituitary glands, pineal gland, kidneys etc.. All of our biological players signal each other for the normal metabolizing, allocation, and removal of nutrients. CLL can manifest itself most anywhere, as it originates in the bone marrow and circulates throughout the body.

Identifying the source can be complicated, yet, this is usually observed first by movements in acceptable ranges on basic blood labs "CBC". Depending on what range moves on the CBC, specific identifying tests would then be ordered to confirm the source of change. Having received a CLL diagnosis, your oncologist has established a base line to measure the progression of the disease of which weight loss is one measure. They then test on a schedule to establish a trend while continuing to monitor physical presentations such as the spleen and lymph nodes.

My amateur conclusion - 10 lbs weight loss over two years with no significant change on CBC labs or spleen size increase.

Review any changes to diet or physical behavior and body function. Then set up a visit with a general practitioner to evaluate your overall fitness, also requesting a thyroid panel. Discuss the outcome and your concern with the oncologist at the next visit. Ask them what their protocol for progression is and how does the weight loss fit in.

JM

[CouldBworse in reply to Smakwater]

Thanks Smak "JM" ! Truly appreciate the indepth reply. I have cut back on sugars, priamarily soda, and also, don't always eat 3 meals a day, being on the run. My appetite is good, my spleen is not beyond size margins, and my Dr doesn't feel that it is anything to be alarms over, however, this is the lightest I have been in years. Good suggestions regarding checking my thyroid, and other CBC levels. I will follow-up with my Oncologist in September, or perhaps earlier if I think it is needed. Thanks for the feed back and support. Hope you are doing well ! Regards.

[Smakwater in reply to CouldBworse]

It may be that cutting back on the sugar is paying off. I hope that the weight loss is just a measure that you are benefitting in some way.

I am well, or rather, I look good if you don't look.👀

[jijic]

I'd say no. I lost about 30 pounds the year before I was diagnosed, but I'd also changed my diet and upped my exercise (just a bit). My doctor said that leukemia weight loss is usually related to night sweats, so it really hinges on whether you're experiencing those or not.

[Big_knicker_blues]

I found that I very gradually lost weight on W&W (not as fast as you but I hadn’t cut my sugar intake). After FCR treatment I could no longer get away with eating whatever I liked & stacked it back on!