when does someone with CLL need treatment? - CLL Support

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when does someone with CLL need treatment?

Soflajoe profile image

I've been on W&W for almost 3 years. Some discomfort in the abdominal area from time to time as a result of speen enlargement and other lymph gland swelling in the abdominal area ( also observed in CT scans), but I wouldn;t consider it to be a major problem in regard to being totally unbearable when I go through these periods. The most visable sign of noticable lymph gland swelling has always been on one side of my neck. That too, appears to go through cycles. Sometimes large-- sometimes smaller, but never goes away. Why would I want to start treatment of any kind, if I am feeling relatively well? I will be 73 in a few months.

7 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

If you are feeling well, that is probably a good indication you don't need treatment yet, but I hope you are being followed by a CLL doctor on a regular basis... to see what your blood counts are doing, with spleen involvement, platelets should be checked...

Nodes swell and subside, it is fairly common...

Here is an article by Dr. Jeff Sharman on when to treat CLL and the indicators that are considered...


Hi Soflajoe,

You look very well, as well! It's really nice to see someone's face after all these rather anonymising tags we have to use. Sounds like you don't need treatment, anyway. What has your consultant said?



Soflajoe profile image
Soflajoe in reply to zentangle

Thats the odd thing that makes me wonder. In February I was advised that I should begin treatment and then in March, I was advised that I didn't. I guess the true indicator is the way that I am feeling, which is good at this point. Who knows what tomorrow will bring, but I can't dwell on that. I do have blood drawn every 3 months.

If your scans don't indicate nodes which are interfering with major organs, and your labs are reasonable, then how you feel is a good way to judge whether you need treatment or not. Check Dr. Sharman's article. He is good at explaining things in easy to understand terms.

I can only share with you my experience. I am 55 and I was diagnosed in November of 2012 and started my treatment in April 2014 due to enlarged nodes in my neck area. Actually, my blood test results improved over the course of W&W. I was feeling great and I was very active. I had no symptoms (night sweats, ...). After three different opinions at three different institutions I decided to start my treatment (Imbruvica/ oral capsules). I wasn't able to turn my neck and I had a very hard time sleeping at night. Actually, by waiting longer, I wouldn't have benefit anything. I also had lymph nodes (the size of an orange) under my each arm which didn't bother me. My suggestion is to get different opinions at different reputable institutions before treatment. As long as it is not life threatening, I would wait. Best of luck to you and you look great from your picture.

PaulaS profile image

Nice photo. Looks very natural, as if you're sitting at your computer in the kitchen. Maybe some other folk will now follow your example and put pics of themselves with their posts :-)

Soflajoe profile image
Soflajoe in reply to PaulaS

Thank you..and yes, I was at my computer..in a room dedicated to keeping my head busy..and also for paying bills :))

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