Bi clonal CLL: When diagnosed with CLL in May... - CLL Support

CLL Support

22,532 members38,709 posts

Bi clonal CLL

wcm242 profile image
7 Replies

When diagnosed with CLL in May 2018, the FISH test reported I have 2 different B cells that are multiplying, making my CLL bi clonal instead of mono clonal. I wish I could get feedback on others results of their bi clonal CLL. The test results said that my time to treatment may be shorter, but nothing else. Do any of you have info regarding bi clonal CLL? So far, my CLL is 13q deletion, mutated, and wbc count at 33k.

Thank you,

Michaelson

Written by
wcm242 profile image
wcm242
To view profiles and participate in discussions please or .
Read more about...
7 Replies
AussieNeil profile image
AussieNeilAdministrator

Given you were told you had two different clones, I would expect that you should have a report somewhere detailing how those clones differ. It's usual for sub-clones to develop in CLL over time and with treatment, but in that case the sub-clones clearly arise from one parent clone. If both your clones are 13q deleted and mutated IgHV, even if they differ enough from each other to have separately originated, I would think that you still have very desirable prognostics. I would suggest your prognosis really comes down to what other deletions are present in the different clones.

Neil

wcm242 profile image
wcm242 in reply to AussieNeil

Thanks for your reply. I am trying to learn all I can about this and appreciate you sharing your wisdom and knowledge on this site.

avzuclav profile image
avzuclav

Welcome to the bi-clonal club. There's not much info out there. This German report concludes a trend to shorter time to first treatment, same as what you were told.

onlinelibrary.wiley.com/doi...

In my case, the two clones were reported on the IgVH mutation testing, with one clone using VH3-21 and the other using VH3-7.

wcm242 profile image
wcm242 in reply to avzuclav

Thanks for sharing your experience with bi clonal CLL. How long ago were you diagnosed and have you had any treatments yet? As for myself, I have not, but have been feeling so exhausted everyday and feeling super swollen all over. I am going into my oncologist today for labs and see dr. in a few days. Looking forward to seeing what's up.

avzuclav profile image
avzuclav in reply to wcm242

Almost five years since diagnosis for me. No treatment yet but if trends continue, probably in 2020 or 2021 (anemia & thrombocytopenia).

I don't think bi-clonal merits any additional worries, nor would I expect any clinician to give it much thought. I'm sorry to hear about your fatigue and swelling. I hope you get some answers.

Keep in mind, per iwCLL 2018 guidelines, fatigue can be a trigger for treatment:

"Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities)."

wcm242 profile image
wcm242

Thanks. Wish you the best also.

Judyanne profile image
Judyanne

Hi,

I also have had 2 clones with different CD markers, both mutated and Trisonmy 12. Diagnosis changed to marginal zone from Sll but I had a long period of wait and watch from 2013 to 2018 and probably had lymphoma a few years before 2013. Doctors have never gotten excited about the two clones.

You may also like...

need your help to learn about Clonal Hematopoiesis.

she has suspecious, i have Clonal Hematopoiesis. due to low blood counts. She wants to continue...

cll and Fenbendazole

My friend has CLL and i have read so much on Fenbendazole joe Tippens protocole having used it on...

CLL FISH tests results

with Dr. Google etc. I just got my FLOW and FISH test results and it is very complicated. I am...

I Have Just Completed My 12 Month CLL Treatment Plan

Flow Cytometry test came back stating: \\"There is no evidence of abnormal clonal B-cells. No CD5...

Has anybody found that regular running helps with CLL?

stage with my CLL. When my CLL was first diagnosed in April 2019, the ABS Lymphocyte count in my...