Variant CLL

[Jenny2020]

Would anyone know what a variant of CLL means

[cajunjeff]

Jenny, I am not a doctor. Variant to me is a non specific term that just means anything that is slightly different than the norm. Different people might use the word differently. Haematologist is just a variant spelling of hematologist. It just means slightly different.

Sll and Pll I think would be variants of Cll. There are a number of b cell disorders that share some similarity with Cll and there could be debate among doctors if they are a variant or their own thing. One might even say 13q cll and 17p cll are variants, depending on how one uses the word.

I know from your prior posts that you have been trying to get some definitive diagnosis from your doctor. If you could get a name of what your doctor says you have it would be helpful. Otherwise you are just going to get speculation that might not be useful to you.

[Jenny2020 in reply to cajunjeff]

Yes he again texted me and confirmed small B cell lymphoma a variant of CLL is what he said. Then that was it. He or his nurse won’t call back. I am scheduled 1-27 with a specialist in lymphoma and leukemia but was still trying to see if anyone knew what that could of meant just so I could maybe breath until I see him.

[cajunjeff in reply to Jenny2020]

Jenny, I think he is saying you have sll, a type (or variant) of cll that is treated just the same as cll.

Cll cells are cancer cells that multiply and spread through our blood and lymphatic system. The cells have to go somewhere. With sll they tend to accumulate more in the lymph nodes than the blood. Someone with sll might have a lower wbc count than someone with cll. With cll, the cll cells are circulating more in the blood which can cause a high white blood cell (wbc) count.

We have a number of members on here with sll. Hopefully your is the slow growing type. But even if not, you have many good treatment options if and when you ever need treatment. I am glad you have gotten some clarity with your diagnosis. You might want to ask your doctor on your next visit if it is "sll".

Here is a link that will give you some info on sll which I hope is helpful to you:

leukaemia.org.au/disease-in...

[Jenny2020 in reply to cajunjeff]

Do you know much about pll that doesn’t sound good

[Hidden in reply to Jenny2020]

if your blood count is slowly going up you don't have b-pll. if it's skyrocketing maybe

[Jenny2020]

Yes I asked that exact question to him and he never responded. So that’s what I think as well as my wbc and lymphocytes aren’t as high as a lot of others with CLL and they actually went way day within a week. That I could cope with honestly. Not that I want anything but there is so much hope out there and I do know that it is indolent

[AussieNeil Partner Administrator in reply to Jenny2020]

CLL is one of the many Non-Hodgkin's Lymphomas and is highly heterogeneous in its expression. CLL is strictly called CLL/SLL according to the World Health Organisation, which in 1994 merged the two prior B-cell malignancies which tended to be found by haematologists and oncologists respectively into the one designation. See healthunlocked.com/cllsuppo...

Unfortunately "SLL" tends to remain more hidden than "CLL" and your specialist needs to be more concerned with your tumour's expression in internal lymph nodes and a swollen spleen, so you can expect your specialist check for internal nodes by probing with their fingers for any changes.

I was diagnosed 11 years ago with stage IV "CLL/SLL" and fitted into the old SLL designation. A couple of years later I fell into the "CLL" designation. I started treatment 6 weeks ago.

Neil

[Jenny2020 in reply to AussieNeil]

That’s what I’m worried about is internal nodes as I have no palpable nodes at this time. When I had my flow cytometry he stated it wasn’t suggestive of CLL and that’s why he order the bmb and that is the one and only time I’ve seen him. Which is so frustrating and the rest has been nothing but texting and he’s a world renowned hem onc. So if I were to have a cancer I guess the SLL or CLL wouldn’t be as horrific as some. I’ve been reading into the pll form do you know much about that. What I read is the peripheral blood smear should have a certain amount prolymphocytes. My peripheral blood smears shows smudge cell numerous in all of my CBC. So I’m praying it’s not that form. If you have any insight regarding pll that would be great

[AussieNeil Partner Administrator in reply to Jenny2020]

It's typical for the SLL form of CLL/SLL not to show enough CLL/SLL cells to register in a blood flow cytology test. SLL is usually diagnosed by flow cytology of a swollen node or a BMB biopsy sample.

The SLL form is rare, but the PLL form far rarer still. We only have a handful of members with PLL.

Smudge cells are commonly reported from peripheral blood smears with CLL/SLL. I regularly have them reported in my results. What is unusual in your case is that your peripheral blood flow cytometry test didn't suggest CLL. Perhaps your blood lymphocyte count was lower at that point.

It's great that with your challenging diagnosis that you had such an experienced and diligent haematologist. I'd ask him why he feels you belong in the SLL category rather than the PLL form. He has the full reports and diagnosic information. I'm not medically trained.

Neil

[Jenny2020 in reply to AussieNeil]

No one suggested I had pll. I just wondered if you had any insight on it. Just because I’m reading so much online and since mine is a unusual case. I was just curious if you knew much about pll and being that you said SLL is hard to detect how did you get diagnosed. So with what you’ve seen with my case you you think I should ask my new dr about pll

[AussieNeil Partner Administrator in reply to Jenny2020]

If you have any concerns about your diagnosis, take them up with your specialist. You are fortunate that he finds the time to text with you. It may be that over time your diagnosis may need to be revisited. You appear to be in the very early stages, so your blood condition isn't yet manifesting much in the way of diagnostic clues.

As to my diagnosis, it was the result on an investigation into why I was neutropenic. My CLL/SLL preferred to concentrate in my bone marrow, so my platelet counts were low too. My blood lymphocyte count was in the normal range but I tested positive for CLL/SLL in a peripheral blood flow cytometry test. I've probably had CLL/SLL for between 15 and 20 years.

Neil

[Jenny2020]

I could be wrong with the numbers as I’m all so new to this and don’t even have a definitive diagnosis but all of you on here have given me so much hope and comfort until I get into this new dr. I am so grateful to all of you