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I have CLL. Has anyone else experienced this issue before.

February 27
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Answer Summary

Members responded with empathy and shared experiences around unexplained weight loss as a symptom of CLL, with several describing dramatic... Read more

Members responded with empathy and shared experiences around unexplained weight loss as a symptom of CLL, with several describing dramatic drops to as low as 92 to 97 pounds before receiving treatment or adjusting their diet. A recurring theme was that weight loss can signal disease progression, and many found that starting treatment, eating balanced meals, and staying active helped them slowly regain weight and feel better. Members also offered emotional encouragement, with one long-term CLL member reassuring others that living well with CLL for 20 or more years is possible and that staying positive makes a real difference.

A MyLeukemiaTeam Member

John806 I had the same thing happen, I started losing weight without dieting. At first I was thrilled as I love to eat! But when I got down to 92 pounds I wasn't thrilled. Trust me a 92 pound 78 year old women is not a pretty sight!. The reason for the weight loss was that my spleen was quite enlarged and was pressing on the my stomach. Well with treatment it shrank, my appetite slowly returned as so did my weight. lol

February 27
A MyLeukemiaTeam Member

Yes John weight loss is a part of leukemia unfortunately I was down to 97 pounds last year.very sick also I am doing much better now eating 2 meals a day really is helping me..I got weighed in at the Doctor yesterday and I am happy to say I weighed in at 114 ..so I am feeling much better and climbing back up ...115 is my goal weight I feel Healthy now...

February 27
A MyLeukemiaTeam Member

I am both CLL and Type 2 Diabetic (T2D.) Eating a balanced diet is very important. I was worried about losing weight but I have managed to keep my weight and my blood sugar is 100% normal because of my diet. I think focusing on what we require for better health is very important. Today I was so busy visiting the gym and shopping that I had not eaten for 19 hours.

February 27
A MyLeukemiaTeam Member

JeanPayne- I am sorry that you have experienced weight loss. I, on the other hand, seem unable to lose any weight. And, I am totally onboard with having difficulty hearing about many whose Leukemia- CLL and other, is so negatively impacting their quality of life. I am deeply grateful. I encourage sharing of experiences here, and am in no way asking not to hear of the struggles, I just have a hard time when I sense in many cases that there are no really good answers of solutions...

February 27
A MyLeukemiaTeam Member

Yes, unexplained weight loss is a sign that the CLL is "presenting". I lost 10 pounds (not a big deal). When I started on Brukinsa later that year, I gained it back. That's OK. I prefer to deal with CLL than some of the other worse leukemia cancers that require chemotherapy. My heart hurts for those who have to endure that feeling of nausea and vomiting.

February 27

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