5 Years After Diagnosis WBC Tripled in the Past Year

[BKman]

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.

[lankisterguy Volunteer]

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-...

Len

[BKman in reply to lankisterguy]

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,

Bret