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CLL Support Association
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5 Years After Diagnosis WBC Tripled in the Past Year

Five years of "Watch and Wait" is coming to an end as my WBC tripled over the past year and doubled in the last six months. Coupled with a high Zap 70, unmutated IGHV, Trisomy 12, and an enlarged spleen, treatment is imminent. With CIVD and Anemia kicking in, how do I choose the ideal treatment? I'm a 57 year old male.

2 Replies

Hi BKman,

I am also Trisomy 12, UnMutated, CD 38 pos but Zap 70 neg. today is my 70th birthday.

I have been treated 4 times since diagnosis in March 2008, so my 10th Cancerversary is coming in 3 months. I have had Ritxuan, Idelalisib, Ibrutinib and Venetoclax and am now in Complete Remission Minimal Residual Disease negative. Stopped treatment Sept 2017 and doing great.

To answer your question how do I choose the ideal treatment? The absolute best advice is to see a CLL expert specialist and get the most current suggestion from a doctor that was at the ASH meeting in Atlanta last weekend. Clinical trials at Mayo clinic have proven that having a CLL expert doctor will extend your life by several years. Picking the correct treatment is part of that survival success.

If you tell us where you live - we may be able to help you choose a doctor (but we should never advise you on which treatment to choose).

Here is a good list to start: cllsociety.org/toolbox/cll-...



Happy Birthday!! I like my doctor though I am scheduled to get a second opinion on treatment with one of the doctors on that list in early January. I guess I am on the right track. Thanks for your feedback.

Wow, treated 4 times?! In 10 years? or less? Looks like it's working well for you, that's great!!

Take care,


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