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CLL Support Association
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CLL / SLL - is there a difference?

I am now not sure which I have: could be lose talk from Registrar. However, in part of the discussion, he said they were really the same (SLL being more a historical name). Are they different?

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Hi Quarry, good explanations on this former link that might help;

healthunlocked.com/cllsuppo...

Newdawn

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Hi Quarry,

They are the same problem with the B Cell Lymphocyte, but in CLL the cancerous cells are in the peripheral blood and in SLL they are in the lymph system and lymph nodes. That is why people with SLL can have perfectly normal blood test results, because nothing is outside the lymph system.

SLL may turn into CLL eventually (30-40% of cases) and will be treated the same as CLL when treatment is ever deemed necessary.

SLL has a number of specific problems, and because it is the minority disease, it can be difficult to talk to other SLL patients. There are a number on here, however, including myself.

Regards,

zentangle

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Many thanks to you both - I am sure I have CLL (as in bloods), but maybe he was saying it was a possibility I have had SLL for years (without knowing) that converted to CLL. I will ask next time!

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That sort of happened to me. In the Autumn of 2012 (forgetting which month now) my lymph nodes started growing and a biopsy was done and it was declared that I had SLL. I went for a bone marrow biopsy and they found I had CLL and in the advanced stage and I probably had it for many years. It never showed up in any of my physicals. So which came first, SLL or CLL? At this stage it no longer matters as they are treated the same now.

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It is thought I had SLL for a while(4yrs) that then became CLL. The treatment is much the same. However it does get a bit confusing for a while at hospital when 1 doc says SLL and another says CLL until your notes are all updated.Its a good job treatment is the same!

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It may help to realise that SLL and CLL were named before the biological cause was understood and found to be the same for both conditions; namely partially matured B-lymphocytes that express a specific CD pattern that can be identified via flow cytometry. The World Health Organisation considers them the same disease. In some places the regulations may make it possible for you to get treatment for SLL but not CLL (or vice versa), so doctors may diagnose you as having SLL/CLL - that was actually my official diagnosis. SLL/CLL is one of many Non Hodgkin Lymphomas, with SLL the lymphoma (or solid tumour) manifestation and CLL the leukaemia manifestation.

With CLL varying so much in how it expresses itself from individual to individual i.e a very heterogeneous presentation, what really differentiates the two manifestations is that particularly in the early stages of SLL, you need a biopsy of an enlarged lymph node to extract lymph cells for a flow cytometry test. As SLL progresses, it can start to present in the peripheral blood, which makes it easier to monitor via your ALC changes. But then some CLL patients get particularly bulky lymph nodes!!

My SLL/CLL was diagnosed via a peripheral blood flow cytometry test and at the time my ALC was under the arbitrarily chosen ALC (strictly it should be B-cell count) of 5 (or 5,000 for US readers) by a few world renown CLL experts, but which has since been proven to be a useful dividing line. My ALC has since climbed to over 12, but recently dropped back to 4, probably because I've been on oral and IV antibiotics off and on for the last couple of months. So does that mean I had SLL which became CLL and then became SLL again? The artificial SLL/CLL dichotomy can be further complicated when you throw in MBL - Monoclonal B-Cell Lymphocytosis, which is generally but not always the precursor to SLL/CLL:

en.wikipedia.org/wiki/Monoc...

Dr Sharman:

cll-nhl.com/2013/07/monoclo...

As has been mentioned elsewhere, the treatment for CLL and SLL is the same, so whether you have SLL or CLL is now largely academic. It is worth bearing in mind that some treatments work more effectively to clear out the bone marrow and reduce swollen lymph nodes than others, but as I previously mentioned that difference is also important to those of us with the bulky node presentation of CLL.

Neil

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Your statement that some treatments work better at clearing out the bone marrow caught my attention. Hopefully ibrutinib is one that does. I was just approved to start ib and should receive my first supply today. I've suffered from pain in my right arm for a few months now. My onc says it is from so many cancer cells in the bone marrow of my humerus. Confirmed by MRI. I had 5 rituxan treatments and one BR (bendamustine + rituxan) which I tolerated pretty well. Just the usual fatigue and some thrush. Except that my counts have never recovered and my WBC still declining. Am so hopeful that ibrutinib will be the answer. Just had CAT scans yesterday (Medicare denied PET scan!). I guess looking for evidence of Richters transformation. Meet with onc tomorrow to find out results. Is there a list somewhere of which treatments are most effective for which symptoms?

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Hi Ragsgolf

Are you asking about Richter's therapies....? If suspected, it should be confirmed by a needle biopsy. I would certainly get a second opinion in Seattle, Fred Hutchinson, probably your best bet...

The stand is RCHOP, however there a few variations... and some are used in combination with radiotherapy...

· RCEPP (rituximab, cyclophosphamide, etoposide, prednisone, procarbazine)

· RCDOP (rituximab, cyclophosphamide, liposomal doxorubicin, vincristine, prednisone)

· RCNOP (rituximab, cyclophosphamide, mitoxantrone, vincristine, prednisone)

· DA-EPOCH d (etoposide, prednisone, vincristine, cyclophosphamide, doxorubicin) + rituximab · RCEOP (rituximab, cyclophosphamide, etoposide, vincristine, prednisone)

· RCHOP (rituximab, cyclophosphamide, doxorubicin, vincristine, prednisone)

· Dose-adjusted EPOCH (etoposide, prednisone, vincristine, cyclophosphamide, doxorubicin) + rituximab (category 2B)

Depending on age and comorbidities, you might be a candidate for an allogenic stem cell transplant.

Second-line Therapy (For patients with intention to proceed to high-dose therapy with autologous stem cell rescue)

· DHAP (dexamethasone, cisplatin, cytarabine) ± rituximab

· ESHAP (etoposide, methylprednisolone, cytarabine, cisplatin) ± rituximab

· GDP (gemcitabine, dexamethasone, cisplatin) ± rituximab or (gemcitabine, dexamethasone, carboplatin) ± rituximab · GemOx (gemcitabine, oxaliplatin) ± rituximab

· ICE (ifosfamide, carboplatin, etoposide) ± rituximab

· MINE (mesna, ifosfamide, mitoxantrone, etoposide) ± rituximab

Second-line Therapy (non-candidates for high-dose therapy)

· Bendamustine ± rituximab

· CEPP (cyclophosphamide, etoposide, prednisone, procarbazine) ± rituximab - PO and IV · CEOP (cyclophosphamide, etoposide, vincristine, prednisone) ± rituximab

· DA-EPOCH ± rituximab

· GDP ± rituximab

· GemOx ± rituximab

· Lenalidomide ± rituximab

· Rituximab

Ibrutinib is a great option for CLL, but it isn't really a good treatment for Richter's Diffuse Large B cell lymphoma unfortunately.

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Ibrutinib works OK on bone marrow, but can take a fair amount of time compared to the likes of FCR for example. I don't know where there's a summary of how different treatments work on marrow and nodes. If someone else doesn't respond with a reply to help you, I'd ask your onc what he/she recommends and check out the trial summaries for those recommended treatments, where you will find that information recorded.

Counts can take quite a while to recover after chemo and may only partially recover. Be interesting to know what part of your WBC is still declining. If it is your neutrophils, you may need to be more careful about guarding against increased infection risk. If it is your lymphocytes, it could be interesting to find out if it is your B or T lymphocytes and their actual count numbers.

Sounds like you know that a CAT scan isn't going to be as useful as a PET scan in identifying Richters transformation. Another topic for discussion with your onc!

If Chris (Cllcanada) doesn't reply to your comment above, send him a PM for his thoughts on your situation.

I hope you get enough time with your onc to get some helpful answers or at least some ideas on what additional testing, if any, would be useful to you.

Neil

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Lymphocytes are the ones not recovering. Neuts are in the lower ok range. Platelets hovering also in what he calls borderline. I assume determining type of lymphocytes takes a special test....one probably not approved by Medicare. But I will ask tomorrow. My Ibrutinib arrived today, but am waiting for the final go ahead from dr's office. Also I have to drive my husband an hour and a half for a dr appt tomorrow and felt I should wait since I don't know what my reaction might be.

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I expect that you are keen to start the Ibrutinib, but it's only sensible to wait until your carer duties will allow you to start something new.

Your lymphocytes are normally comprised mainly of T-cells, with Natural Killer cells and B-cells making up the balance. After your treatment, your B-cells should be very low, so I suspect that it is your T-cells that are also low. The percentage split is determined by a flow cytometry test, which I don't think is all that expensive. By the way, I presume that you know that patients starting on ibrutinib to treat CLL initially see a significant jump in their B-cell counts? The Ibrutinib reduces the B-cell's 'stickiness', so that they can no longer hang out in the lymphatic system (nodes, spleen, etc) and so get flushed into the peripheral blood, where they die more rapidly. Given your recent treatment, you may not see that happen.

How experienced is your oncologist at treating blood cancers - in particular CLL and possible developments like Richters? Have you considered seeking a second opinion? Your uncertainty about the cause of your arm pain may be an opportune time to do this.

Neil

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Thank you for the information. Good news today from onc. Said my nodes are smaller and he doesn't believe I exhibit signs indicating RT. I did go to the Seattle Cancer Care Alliance for a consult with Dr Orozco. My onc is a hematologist. I've never asked him how many RT patients he has had. Started IB tonight and am very hopeful. I appreciate the heads up re: B-cells.

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Great to hear the good news, Ragsgolf.

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Great news... let us know how the Imbruvica (ibrutinib) goes...

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I was diagnosed with sll/cll 5 years ago. For several years I had raised lymph nodes but was fobbed off by a Northampton consultant. By the time I was taken seriously my blood and bone marrow had become heavily infiltrated. Now under cll umbrella.

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The diagnosis of CLL/SLL is common early on, until it becomes clear which it is...

The dividing line is the blood. If there are more than 5000 B lymphocytes per micro liter by flow cytometry in the blood it is CLL.

The Guidelines state...

'The definition of SLL requires the presence of lymphadenopathy and/or splenomegaly. Moreover, the number of B lymphocytes in the peripheral blood should not exceed 5 X10^9/L. ( 5000 microlitre) In SLL, the diagnosis should be confirmed by histopathologic evaluation of a lymph node biopsy whenever possible.'

In the U.S. doctors will refer to it as CLL/SLL and this has to do with covering all the bases in medical billing to insurance companies. It isn't a diagnosis as such.

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in reply to the question about Ibrutinib helping get rid of the enlarged lymph nodes, I can share with you my experience. I started my treatment (Ibrutinib) on April of this year. Within the first week of the treatment majority of the enlarged nodes (90%) disappeared. I had enlarged nodes the size of an orange. I wasn't able to turn my neck neither to sleep. I am doing well and my oncologist is very optimistic about my progress. I don't look at my blood test results because the numbers are deceiving. I let my oncologist worry about the numbers. He also wants to add Rituxan in combination with Ibrutinib which he believes would control the disease for longer period of time but I am not sure since the pills are already doing an amazing job. Is anyone aware of any studies that prove his point. I am not sure if combination of Ibrutinib and Rituxan is more effective. In any case stay possible and Ibrutinib does work.

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When you have CLL that means that the lymphoma is stage VI and already in the blood (ie leukemia) If you have not been told that you have leukemia you are still at the SLL stage.

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There is an oddity to SLL Diagnosis, as I understand it, however. Because it emanates from your Bone Marrow, it must be staged at IV (Ann Arbor), even though there is no thrombocytopenia or anemia. It is therefore RAI Stage II but can't be staged as CLL, because it's a lymphoma, so it's Ann Arbor Stage IV, which make sit sound worse than it is.

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It is a bit more complex....

Grading / Staging / Report

While staging is linked to prognosis, it does not generally determine therapy.

Therapy generally determined by clinical signs and symptoms

Pathologic staging is usually limited to bone marrow biopsy and biopsies of other sites to confirm clinical evidence of involvement

80% present as stage IV, generally bone marrow

Ann Arbor Staging System

Stage I

I if involvement of a single lymph node region

IE if involvement of a single extralymphatic organ or site

Stage II

II if two or more lymph node regions on same side of diaphragm

IIE if localized involvement of an extralymphatic organ or site and one or more lymph node regions on the same side of the diaphragm

Stage III

III if Involvement of lymph node regions on both sides of the diaphragm

IIIS if spleen involved

IIIE if extralymphatic site involved

Stage IV

Diffuse or disseminated involvement of one or more extralymphatic organs or tissues, with or without associated lymph node involvement

Systemic Symptoms in 6 months preceding admission

Fever, night sweats, 10% weight loss

A = absent

B = present

Extranodal sites are also designated

M+ = marrow

L+ = lung

H+ = liver

P+ = pleura

O+ = bone

D+ = skin and subcutaneous tissue

Blood... staged as Rai or Binet, CLL

Although originally designed for Hodgkin lymphoma, the Ann Arbor System is also used for non-Hodgkin lymphomas.

Reference

surgpathcriteria.stanford.e...

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Stage IV does sound frightening for the newly diagnosed SLL (or even CLL patient) because this is the last stage for cancers and there's the common understanding that this means a limited life expectancy. The general public doesn't appreciate the difference between acute and chronic cancers, which is understandable because how often are there media articles about people with a chronic stage IV cancer? It's just not newsworthy when the person concerned could still live for many many years and may not even die from their cancer. Case in point - I've been living without treatment at stage IV for over 5 years.

That said, obviously there is a higher risk of complications and and an associated reduced life expectancy if a chronic cancer has spread. When CLL or SLL does infiltrate your bone marrow, it will begin to increasingly affect your health by causing one or more of anaemia, higher risk of bleeding, or further reduced immunity.

SLL may emanate from just one lymph node, then spread to other nodes, the spleen and eventually the bone marrow and peripheral blood. That's the other important differentiator from CLL. Catch it early enough when it is limited to a treatable number of lymph nodes and is amenable to targeted radiation treatment and you could be cured - permanently!

Neil

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It's Stage IV where the issue arises though, isn't it? It has to be 4 for SLL because it originates in BM so must involve extralymphatic organs. CLL and SLL staging is not comparable. I am SLL IV A, but I would be Rai II.

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Here is a good page from ASCO on Rai and Binet staging...

It is more art than science...

cancer.net/cancer-types/leu...

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Having read some of this, maybe I am swinging between SSL and CLL!

Perhaps from early age I had (unknowingly) SSL (I remember yellow eye occasionally in early teens). Then finally diagnosed 18 months ago with CLL (when 52), because my lymphocytes were above 5. - actually it was AHIA that led me on this diagnosis path.

Attempting to stop AIHA, I had my spleen removed last Jan. As most of my CLL cells were in spleen too, my lymphocyte levels are currently around 3, so technically I am not currently CLL......but perhaps I have gone back to SSL!

Who knows and only really a curiosity (given discussion above)!

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Hello Quarry, I hick you might be someone I would like to reach out to. We found out my husband has SLL a few months ago, but what he has been dealing with is cold agglutinin which seems to be the underlying problem at the moment. You mentioned you had AIHA which I think is the same as Cold Agglutinin. We have not found many people who even know about this auto immune disease. Even the many doctors we have been to are not that familiar. Please let me know what you have been experiencing, we live in upstate NY not sure where you are. Looking forward to hearing from you as well. Many tks. Cathy

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Cathy

Not sure if cold Agglutinin is what I had - I had 'warm' AIHA . It might be the same. I was diagnosed with CLL about 18 months ago (I was 52), but actually I think what was picked up was the AIHA (haemolysis): my CLL is early stage.

Essentially my Hb dropped and I had mild night sweats: I was makeing huge numbers of red blood caells in my bone marrow, but this was not enough to compensate for the destruction in my spleen: my spleen was fooled into destroying my red blood cells by the CLL via a mechanism no one understands.

First line of treatment was steroids (predisone), high levels (which I managed without bad side effects). this worked whilst I was on steroids, but as soon as I stopped the AIHA returned. It generally works in 2 out of 3 cases.....but not me

So I have had my spleen removed (last Jan) and to date this has stopped the AIHA. It is not a hugely researched field as far as I understand: so my Haemotologist can not tell me how long this might last, but I feel good at the moment.

Let me know if you have specific questions

Andy

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Sll and cll and basically the same. It is a blood cancer. The only difference is that sll is found in the lymph nodes while cll is found in bone marrow. Treatment is the same, sll is less common

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Hi I am just a layperson not an administrator but SLL is different from CLL but just because of a difference in the blood count. SLL has markers below 5000 and CLL has markers above. I just listened to a good video by two doctors on this website about this Dr. Keating (being one doctor) both in Houston TX.. I'm sure administration will put you on to it. Do not worry it is thought of as the same thing. So much information to take in and I think all we are all trying to figure out is just how to get better.

Kathy

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Here's another post where this is discussed:

healthunlocked.com/cllsuppo...

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Diagnosed with CLL first by pathology 7 years ago and recent pathology says CLL/SLL. I FEEL VERY CONFUSED.

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In the U.S. it is called CLL/SLL primarily for insurance purpose. You can't have both.. because it is a monoclonal disease, one or the other... you have a CLL or SLL diagnosis.

Both are treated the same, however SLL is staged as a lymphoma, and CLL as a leukemia.

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