Atypical cll

[Cunard]

After 4 months of test I have been diagnosed with Atypical cll and would just like to know the difference between Atypical cll and cll my cns said it is a rarer form is the treatment different

[Hidden]

i have b-pll which is defined as over 55 percent prolymphocytes. i looked up atypical cll and it is defined as 15-55 percent prolymphocytes.

they are both susbsets of cll. both are very rare

[Cunard in reply to Hidden]

Thank you for your reply see the consultant on Tuesday for my treatment plan

[lankisterguy Volunteer]

Some of the research links below point to a much broader and blurrier definition of atypical CLL.

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I would postulate that there are not clear lines to diagnose CLL, but a series of tests and symptoms, and when some of the results are borderline, the doctors call it atypical.

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onlinelibrary.wiley.com/doi...

pathologyoutlines.com/topic...

ashpublications.org/blood/a...

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SNIP (from the 2nd link above): Terminology

Atypical CLL:

Refers to subtype of CLL with B cells having nuclei with deep clefts or folds and less condensed chromatin, high WBC, increased CD23 expression (compared to typical CLL) and more aggressive clinical course

Associated with trisomy 12

Not part of current WHO classification scheme

CLL / PLL:

Mixed type CLL with increased number of prolymphocytes (10 - 55%) (Am J Clin Pathol 2001;116:655)

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Len

[Ginajetta]

I was diagnosed with Atypical CLL in 2007, CD38, trisomy 12+, unmutated IGVH. I was on watch and wait over 11 years and started imbruvica September 2018. I had office visit with Dr Rai in October and reiterated I have atypical CLL and just to stay on my imbruvica 280 mg.

[mkawass in reply to Ginajetta]

Hi Ginajetta

If you dont mind me asking, how is your experience with Ibrutinib so far?

[Ginajetta in reply to mkawass]

I was nervous starting. I started imbruvica September 2018. My WBC was around 300,000 and went up to 697,000 rbc 6.5, platelets 66. Spleen and lymph nodes were very large. No blood transfusions. I did have two iron infusions soon after starting. Within a short time rbc went up and platelets rose and wbc slowly coming down. Within a couple weeks after starting lymph nodes shrunk, i did get and still do get some petecheas which is common and i get roving joint pain. I did get two bruises one in each leg when i first started. LWithin about two months I had more energy than I had in years. I did get a bad headache for about two days after starting. I am so thankful for this drug and hope it continues to work. My WBC this month is down to 139,000 hemoglobin 13.8, platelets fluctuate between 147 and 175. Dr not concerned wbc slow going down. My immunoglobulins have been very low all along but so far neutrophils ok. But always have anxiety when time for blood work. I did have to stop imbruvica in September 2019 for two weeks to have my gallbladder removed. I hope it continues to work and hope we all can continue to get as drug comes from China. Hope this helps. Wish you the best. I was diagnosed at 60 now i am 73.

[mkawass in reply to Ginajetta]

That is great news to hear! I really hope my father doesnt have to get on imbruvica and his remission lasts. But, hearing good things about it makes one more confortable. All the best! He will visit the USA next month with me and we may ask for a second opinion regarding if he should use it now or hold on to it. We are going to give it sometime for sure, let the Hypogammaglobulinemia resolve before anything and hopefully his platlets ,now at 97 000, go up more.

[Cunard]

Thank you for your reply see what treatment they advise tomorrow

[Cunard]

Went to consultant yesterday TP53 mutation I didn’t quite understand this only FCR wasn’t an option which they had said I would be having as doesn’t respond well now starting on imbruvica next week just hope my energy levels come up also have very dry mouth and no taste with out treatment just hope it doesn’t get worse do I stay on this drug for life seeing consultant again next Tuesday to sign consent form and chance to ask any questions

[mkawass]

Best of luck Cunnard. Things will be ok

[Cunard]

Thank you