Mom diagnosed with CLL

[Almanac]

As per the flow cytometry report, it says atypical B- CLL with dim CD5 expression. WBC is at 16.5, hb had fell significantly, diagnosed as AIHA, hb seems to be back at 9.5 with blood transfusions and steroid management. Anyone else here had similar prognosis?

[81ue]

Welcome, and I'm sorry that your mother has CLL diagnosed. The CD5 alone on the tests would not be what the doctor would have used to land on that diagnosis. Your mother has a CLL that doesn't fit neatly into the diagnosis which can be another level of scary when dealing with this diagnosis (perhaps may even benefit from a second opinion). There are people in this forum that have various other blood markers that range from high risk to 'good' markers . The good news is that for all of us there are very powerful and effective drugs available now and in clinical trials for when treatment is needed and in general those on the medications are doing well as you will see from reading through this forum.

I found this article discussing the history and concept of atypical CLL diagnosis

onlinelibrary.wiley.com/doi...

[Almanac in reply to 81ue]

Thanks for the information. Yes, indeed, going through the posts in really helping me to navigate this difficult situation.

[Almanac]

Thanks scottxxoo! Initial Complete blood count report showed wbc at 22000, peripheral smear test was done, DAT was positive and full cytometry reported as atypical B-CLL.

Cytometry report shows bright CD45, express CD11c, CD19, CD20(heterogeneous-dim) CD22, CD23, CD200 as heterogeneous and Kappa light chain(partial-dim)

[Judyanne]

I had dim cd 5 and was diagnosed with Sll. However, biopsy later determined it was marginal zone.

[Almanac in reply to Judyanne]

That’s good to know it is in the marginal zone. Biopsy and other cytogenetic test results awaited in my mom’s case.

[MsLockYourPosts Passed Volunteer]

AIHA is not uncommon with CLL, but you will want a doctor who is very familiar with treating both if your mother’s current doctor isn’t. She needs someone who can best determine whether to treat the AIHA specifically, or begin treatment for CLL. 9.5 is significantly low for HGB. A second opinion would be a good idea. If seeing someone in person isn’t possible, your mother can sign up for the online consult program available through cllsociety.org

[Almanac in reply to MsLockYourPosts]

Thanks for the input, yes have been seeking a second opinion.

[MsLockYourPosts Passed Volunteer in reply to Almanac]

If you give your general location others here may know of a specialist near your mother. The group is very international.

[Almanac in reply to MsLockYourPosts]

I should have posted the location very early in the post, missed it. We stay in India.

[Almanac]

Got the reports for the bone marrow except for the mutations. Negative for CLL panel by FISH, cytogenetic says Normal karyotype, cytometry: Positive markers are CD19, CD20, CD23, CD200. Negative markers are CD10, Cd25, cd38, cd79b,cd103,fmc7, kappa, lambda. Bone marrow aspiration says 90% lymphocytosis.

Any insights on these results ?Meeting the doc tomorrow with these reports.

[gohmei]

My husband is waiting for his official bone marrow results. Preliminary result revealed CD5 negative disease, which confused the haematology team as he was previously CD5 positive.

Just curious, does ur mum experience joint pain/swelling resembling rheumatoid arthritis? My husband had this and doctor started him on anti-gout therapy colchicine & allopurinol.