CLL/SLL, what to expect?

[aptucxet]

I am 82 and on w/w for 4 years. No symptoms that I am aware of. Original diagnosis based on bone marrow "The marrow is involved by CLL/SLL 30% of the overall cellularity. Fish reveals 11q deletion. The marrow is otherwise normocellular (30%) and demonstrates maturing trilineage hematopoiesis. Normal male karyotype. CD38-

Negative for trisomy12. Current blood test shows WBC 14.2 ALC 9.9 ANC 3.5 HGB 13.4 RBC 3.73. I will appreciate any comments, especially regarding the SLL. My hematologist never mentioned the SLL side of this......only the CLL. Thanks very much. I am so happy that I have found this site! John

[Peggy4]

Hi John and welcome. I'm not knowledgeable enough to give advice but there will be many here who will. I'm glad you've found this site too-you are in the right place.

Best wishes

Peggy 😀

[aptucxet in reply to Peggy4]

Thank you for replying, Peggy........and best of luck to your attempt to avoid sweets. I have given up anything made with white flour and anything containing sugar. It wasn't easy at first, but I don't miss those things at all any longer. I'm a coffee drinker, so I sweeten my coffee with stevia. There are various forms of stevia....I use a brand that contains only stevia and inulin. I think it tastes better than sugar.....no after taste, such as you would find in artificial sweeteners. I lean towards a high fat (healthy fats) low carb diet. It may not have any affect on my CLL/SLL, but, hopefully, should aid in overall health. I can't just sit back and let the CLL progress without at least trying to do something proactive about it. Best wishes to you. John

[AussieNeil Administrator in reply to aptucxet]

Welcome to our community John!

You'll find plenty of helpful information for new members in our Pinned Posts section, which is to the right on a PC/Laptop or at the bottom of the screen on a smartphone/tablet. Two posts of immediate interest to you are

1) What's the difference between CLL and SLL

healthunlocked.com/cllsuppo...

and the first of a three part series on many things that you can do to improve your quality of life on the CLL journey: healthunlocked.com/cllsuppo...

You'll appreciate when you've read the first post, that CLL and SLL are the same blood cancer, but with SLL, the cancer cells congregate more in nodes, spleen and bone marrow and don't appear (or appear at low levels) in the blood.

Neil

[aptucxet in reply to AussieNeil]

Thanks, Neil, but I do not have any enlarged nodes or spleen and I do have too many lymphocytes. That's what makes me question.......do I really have the SLL along with the CLL?

[Cllcanada Top Poster CURE Hero in reply to aptucxet]

No... if your absolute lymphocyte count [ALC] is raised them you have CLL. Some patients have a great deal of external node involvement, others have no outward signs at all, but lots of internal nodes, and still others have virtually no node involvement, just bone marrow and blood, maybe spleen.

CLL and SLL are the same lymphoma, it is named by location... in the blood it is CLL a leukemia like presentation, in the nodes but not in the blood then more lymphoma... SLL

There are extraordinarily rare cases of biclonal CLL/SLL where there are two parallel clones, and it might be possible to have one clone as CLL and the other as SLL, but it would be one in a million...

A presentation on Biclonal CLL from my friends at the University of Manitoba CC and Edmonton

umanitoba.ca/institutes/man...

The term CLL/SLL has come into vogue in the U.S. primarily, and it is used to cover both with insurance companies... but the medical diagnosis is one or the other...

~chris

[AussieNeil Administrator in reply to aptucxet]

You can't have SLL along with CLL, because both are caused by identical clonal B-lymphocytes at the same point in their lifecycle. Treatment is the same too, as you'd expect. The two names arose before it was possible to examine the DNA errors in the CLL and SLL cells and determine they were the same blood/lymphoma cancer. How CLL/SLL manifests itself varies greatly from individual to individual (termed highly heterogeneous); both in time to treatment and where it builds up (blood vs lymph nodes).

Neil

[aptucxet in reply to AussieNeil]

Thanks, Neil, I confuse easily. You say I cannot have SLL along with CLL.........and yet my diagnosis was CLL/SLL. That doesn't imply both?

[Cllcanada Top Poster CURE Hero in reply to aptucxet]

As I said it is refered like that in early stages, because they may not know which way it will go, to CLL or SLL.

The diagnosis is one or the other... you have blood lymphocyte counts raised... then it is CLL.

~chris

[aptucxet in reply to Cllcanada]

Thank you, Chris. I do appreciate the many responses to my question. .....John

[AussieNeil Administrator in reply to aptucxet]

I was officially diagnosed with CLl/SLL too. Initially my lymphocyte count was below 5 (SLL), but around 18 months after diagnosis, it climbed above 5 (CLL). The threshold of 5 is arbitrary. At diagnosis I was stage IV, with spleen and bone marrow involvement. The cancerous B lymphocytes didn't change to a different type when number of cells in the blood crept above 5...

[mombasa333 in reply to aptucxet]

Being proactive is the best decision you can make. The watch and wait, as I was instructed to do by my PAST Oncologist was not an acceptable response even after I told him that this has progressed and killed everyone in my family who had it.

I follow what was mentioned above and push it even harder. Instruction manual written in Leviticus.

My results have been fantastic, not my words but those of my current Oncologist. Yippee

[franklyna in reply to mombasa333]

How are you being proactive?

[wroxham-gb]

Would also like to welcome you to the site John.

We are a friendly and caring group of members, and some very knowledgeable.

Hope you enjoy talking to and reading about us.

Any more questions just ask away.

Best wishes.

Sue

[aptucxet in reply to wroxham-gb]

Thank you, Sue.

[eperl]

CLL and SLL are the same thing.... CLL when in the blood and SLL when in the nodes. Same malignant cells. Interestingly enough it can present one way and then change....Like mine. I have had CLL for a few years. My last blood work was totally normal. I have had 2 cm nodes everywhere which continue so it's SLL now. It doesn't really matter though...Same cells.

[aptucxet in reply to eperl]

Thank you, Eperi.

[MichelleM61]

I'm confused. I am told I have CLL. Never heard the SLL side. I can feel some of my lymph nodes in my neck, clavicle, arm pit and I Know my liver is slightly enlarged.

[Cllcanada Top Poster CURE Hero in reply to MichelleM61]

CLL and SLL are the same disease, they both have, bone marrow, node, spleen involvement.

The difference it that SLL is not seen in the blood, meaning the white blood cell count [WBC] is normal.. in CLL there is blood involvement and the white blood cell count [WBC] is raised...

There are subtle other differences, but clinically they are the same lymphoma, and treated the same, but CLL is staged by Rai/Binet and SLL is staged by Ann Arbor system.

So CLL is in the blood... SLL is not. In very late stages of SLL it can appear in the blood in about 30% of patients... then it is generally called CLL...

CLL likes to travel..from nodes into the blood, back to the nodes, out to the spleen, up to the brain, over to the liver and kidneys..etc.

SLL is a homebody, quite content to never go out and likes to be nursed by stomal cell in the nodes.

~chris

[aptucxet in reply to Cllcanada]

Chris...thanks again for additional explanation. If SLL is not seen in the blood, then perhaps my original diagnosis was based on the bone marrow aspirate.....involving 30 percent. i guess, at this point, it really should be of no concern.