SLL..

[Stelladoro]

Hi i would love to hear from some people with SLL......LYMPHOMA

How different is this from CLLas far as symptoms go . .thanks

[Ironj]

I have SLL and as far as I know the symptoms are the same as the cancer is one in the same as far as the type of BCell cancer. Cll is in the blood (leukemia) and Sll (lymphoma) is primarily in the nodes. But they are both treated the same.

[Greykittys in reply to Ironj]

They are also both lymphoma. CLL is a leukemia and lymphoma.

[LovecuresCLL]

CLL and SLL are the same thing just different organ systems. One is in the blood....in the other the bad cells involve lymph nodes.

As person with CLL/SLL with an 11q mutation, I have “bulky node” CLL/SLL as opposed to some other mutations that don’t favor increasing the size of the lymph nodes as much.

This CLL/SLL can infiltrate the bone marrow as well. And let us not forget how the bad lymphocytes infiltrate the spleen.

It all depends on where you are taking the tissue from. If they take tissue from your vein .....it’s CLL. If they take tissue from your lymph node it’s SLL. Does that make any sense?

I know it’s confusing as heck.

[Stelladoro in reply to LovecuresCLL]

Yes thanks

[TheFrog]

Stelladoro,

I've had SLL since 1994 (age 39 at diagnosis). I think one of the biggest differences between SLL and CLL is the lack of symptoms. We tend to be diagnosed at a later stage (I was stage 4) because our blood counts are generally normal and it is only when our lymph glands become noticeable enlarged that we realise something is wrong. There are many people on this site whose CLL was picked up as a result of a blood test that was carried out for some other reason. IronJ is the only member I'm aware of who had his SLL diagnosed at as a result of a CT scan for a digestive issue. Far more people have blood test than CT scans so CLL tends to be discovered much earlier than SLL.

If you have been on this site for any length of time you will know that the CLL-ers monitor their blood counts over time to see how their white counts are trending. This is a simple way of measuring progress although in reality it is falling red counts, neutropenia and thromobcytopenia that are often the triggers for treatment to commence.

With SLL we have no convenient way of measuring progress because we don't want regular CT scans or BMBs so we are left with having to decide for ourselves how we are feeling.

I think initially SLL is more of a mental challenge than CLL because we can't measure how we are progressing. Once you get over that I feel SLL is easier to ignore because you have no idea of your trends so need to face everyday as it comes and make the most of them.

With CLL if you are presented with rising numbers every 3 months it must be difficult not to let that affect your life.

For completeness I should add that with SLL once your blood counts start dropping it's a clear indicator that your bone marrow is heavily impacted and treatment is imminent. When I relapsed I went from normal could to needing treatment within 12 months.

Jacques

[Awksom in reply to TheFrog]

Exactly as I have it. Diagnosed as SLL because of a few nodes at the time and I had a biopsy. My blood work was totally normal at that time.

Physically the symptoms are not much different for me as I now bounce between more nodes and CLL bloodwork. Obviously I have nodes that get uncomfortable at times and I have now reached the stage for treatment.

[Stelladoro in reply to TheFrog]

Thanks for the info Frog

[JeannineMarie]

Stelladoro, I have SLL was diagnosed after a round of pneumonia that resulted in a CAT scan. Started with fliud in the lung, VATS and the end result of SLL. My blood counts were a little off for years and am still baffled why this wasn't picked up sooner. I am a little over a year diagnosed and have already had 6 rounds of BR. Lymph nodes were growing at an astounding rate.

Having. CT done today with visit to oncologist tomorrow. I keep hoping to hear the one magic word "remission" but think that would have happened almost immediately after treatment. The one constant I have is a very low WBC. So I am very watchful of catching a cold or coming in contact with people who have contagious disease.

Thanks for bringing up this topic! Keep in touch

[Fulart]

Thank you so much for asking this question! I have CLL/SLL and never got a satisfying answer when I asked about SLL when first dx’d.

Back when I started feeling fatigue and totally run down I knew something was wrong. But my blood work was fine. Then I noticed my swollen lymph nodes and started Dr Googling. I asked my Primary Care Dr if I might have CLL. I was brushed off and essentially made to feel silly. By the time I was taken seriously, I had a BMB that showed 75% involvement. A Scan showed swollen lymph nodes throughout my body, and I was finally dx’d CLL/SLL. When I tried further online research, the World Health Organization said it was treated the same. My oncologist said I probably would not need treatment for 5 years, but I had to start treatment slightly over a year later.

[Mako625]

I noticed lymph nodes swollen in groin and axilla. Labs normal for the most part. Absolute lymphocytes we’re above 5,000 once. My IGG was low as well. CT scan showed bulky adenopathy in abdomen. Bone marrow was 50% infiltrated as well. Was initially diagnosed via lymph node biopsy. I had some fatigue and could not eat a lot because of the lymph nodes taking up space in my abdomen. In treatment now and lymph nodes are reduced and feel much better

[F550]

I noticed a large lump in my left armpit. My GP ordered a CT scan, which indicated lymphoma, biopsy confirmed SLL(trimsomy12). Blood work has always been fine. Absolute lymphocytes were a bit below normal but are now fine. Over the next year many more nodes appeared. I lost weight, had some fatigue and night sweats. My specialist suggested treatment out of concern that the internal nodes would interfere with organs. I have been on ibrutinib since January. This knocked the nodes back.

It seems that I progressed to the treatment stage faster than people on this form with CLL. They seem to be "sicker" but still don't meet the criteria for treatment.

Mike

[livinglifewell]

Hi Stella, my SLL was discovered in 2005 following a routine mammogram. Once labs were drawn, flow cytometry, biopsies made, and body scanned I was diagnosed with advanced indolent SLL in all four quadrants of my body. I was W&W for four years and then my nodes blossomed exponentially and my rocky road began. I have stage III kidney failure from SLL infiltrating the kidneys. To date every lab drawn my WBCs have been within normal limits, same with alk phos, but my beta2 microglobulin remains elevated. My disease has been very bulky with palpable nodes everyplace in my body. I hope this answers your query.

[Stelladoro in reply to livinglifewell]

Oh dear i didn't know that it could be so bad! Im sorry ⚘

[AussieNeil Partner Administrator]

You've had some excellent answers and you might like to explore more via this related post and the included reference links in the replies: healthunlocked.com/cllsuppo...

There is one very important difference between CLL and SLL not yet mentioned. SLL is potentially curable by radiation treatment IF caught early enough and restricted to at most a few enlarged nodes close together. That might have been the case with me, but my GP dismissed a swollen node in an unusual place (on my thigh) as harmless, years before my eventual diagnosis of "CLL/SLL". I had enough monoclonal B-cells in my blood by that stage for a flow cytometry test on a blood sample to work, but my ALC was under 5 (thousand). I moved into "CLL" territory due to my rising ALC a couple of years later.

Neil

[Jenny2020 in reply to AussieNeil]

I read your reply and think I’m finally getting somewhere with my diagnosis. Final diagnosis is still not in but they are thinking it is small B cell lymphoma which my understanding is SLL. You mentioned on here radiation could cure this. I have no visible nodes but do have a dull ache in my chest and rib at times. How soon would they be able to determine radiation as a possibility or do they still do the W&W until symptoms visible. If that’s a possibility I would obviously love that approach so I could have a cure vs reoccurrence

[AussieNeil Partner Administrator in reply to Jenny2020]

For radiation treatment to be able to possibly cure SLL, it needs to be restricted to one node or a few nodes closely located. It must not have spread to the bone marrow. Radiation treatment needs to be done as soon as possible.

Keep in mind that this approach is something more familiar to oncologists and specialists more familiar with treating lymphomas than leukaemias. Also remember that SLL is rare and generally discovered late stage, because of the typical lack of early symptoms, so this opportunity for a cure is not well known by specialists. If need be, I can provide you with specific references from a highly respected CLL/SLL researcher about this opportunity to try for a cure.

Neil

[Jenny2020 in reply to AussieNeil]

That would be great as I don’t have any symptoms of swollen nodes and my flow wasn’t to suggestive of anything and the bmb stated negative for lymphoma panel and CLL so I’m assuming he is waiting for the final report to see if it is SLL. That’s what I was told today anyway

[Jenny2020 in reply to AussieNeil]

Being that it is rare what are the typical symptoms people go in for when it is discovered

[AussieNeil Partner Administrator in reply to Jenny2020]

In early stages, it's just concern about a node or nodes that have suddenly grown. In later stages it can be one or more symptoms from the following (from memory)

- fatigue/tiredness/difficulty concentrating

- night sweats

- temperature regulation challenges

- bruising, low platelets

- more frequent infections/infections taking longer to get over

- swollen nodes, especially in abdomen (often spleen)

- unexpected significant weight loss

- anaemia

- neutropenia

- other organs swelling, e.g. liver, kidneys, even prostate or eye, but that's rare.

Neil

[Jenny2020 in reply to AussieNeil]

So I could potentially be in a very early stage.

[Jenny2020 in reply to AussieNeil]

Do you know the prognosis typically for SLL I

[AussieNeil Partner Administrator in reply to Jenny2020]

Yes, if it is not in the blood or bone marrow, but found in only one or a few nodes, you would be in stage 0.

CLL/SLL is a continuum in the expression of a very heterogeneous blood cancer, specifically one of the Non Hodgkin's Lymphomas. SLL has little to no expression in the blood (so flow cytometry fails and needs to be done on a biopsied swollen node or a bone marrow biopsy).

"SLL" can "change" to "CLL" in a few percent of cases each year. Remember they are the same disease, so more correctly the expression changes and CLL cells start to appear in the blood. At later stages, the bone marrow becomes infiltrated and a range of cytopenias (low specific blood counts) can occur over time.

Don't believe the survival statistics you'll find via Google. They are 10 to 20 years out of date. The poorer survival statistics are largely because it is usually found late.

You may never need treatment. I think I have had CLL/SLL for at least 15 years and started out with a diagnosis of stage IV eleven years ago. I had bone marrow involvement causing stage IV neutropenia and a swollen spleen. I started my first treatment last month.

Neil

[Jenny2020 in reply to AussieNeil]

I read your avatar and it looks like you’ve been through a lot. I’m so sorry for all you’re going through. I also appreciate your knowledge and helping me with all of this it really helps. They are doing the bmb now I got partial results and all my markers look good so far except I don’t see where I can find if I’m Ighv mutated on there. It also states in negative for CLL or lymphoma panels. That’s where I get confused. Something must of shown on the flow which I don’t have those results yet but I called the nurse today as my anxiety has taken over to where I can’t function and she stated my chart showed maybe small b lymphoma. Which is confusing because when I look that up it looks like there are several forms of that not just SLL. They are waiting for a response from the pathologist. So I’m just lost and confused and trying to learn as much as possible. If you don’t mind me asking how old were you when you were diagnosed

[AussieNeil Partner Administrator in reply to Jenny2020]

Flow cytometry is the definitive test for what variety of Small B Cell Lymphoma - IF there is a monoclonal population.

If you have CLL/SLL, then IgHV mutation status tells you if you statistically fall into the long or short time to treatment group. (The researcher who discovered the importance of IgHV is the person who recommendeds trying to cure early stage SLL with radiation therapy).

The median age of diagnosis for CLL/SLL in the USA is 70. We have cases under 20. I was 53.

Neil

[Jenny2020 in reply to AussieNeil]

Yeah. I thought there were more than one type of small B cell lymphomas. I’m just not sure why it’s taking so long for them to figure what it is. Been going on 3 weeks now.

[Oscarmarlo12]

Hi Stella, I am 67 and just diagnosed. Initially a Hb of 119 and slightly elevated WBC prompted my GP to investigate further and diagnose CLL (flow test). Referral to a Specialist changed this diagnosis to MBL as my lymphocytes were just under the 5 mark . Further investigation to see why my Hb was low showed no hemolysis, CT found all nodes normal, but bone marrow at 46% infiltration. Fish gave 13q del. The diagnosis changed to SLL .

I feel well, but get breathless quickly if I increase my cardio (running, or cycling fast).Also usually wake up between 1-- 3am feeling hot and need to throw off blankets to get comfortable. Later I am cold again. I don't know how long I have had the disease but suspect about 2 years.

Regards