Log in
CLL Support Association
12,101 members18,430 posts

Newly Diagnosed with SLL and unsure of what lies ahead.

Whilst in hospital in January 2013 I had an MIR scan for another issue, I was told that something else was discovered and sent for a CT scan. Then sent to have a biopsy taken from my lymph node armpit, which were sent off for diagnoses, after a couple of days I was informed that I had CLL. After leaving the hospital I was referred to the Churchill in Oxford. At my first appointment the Registrar gave me a brief breakdown of what CLL is and to be honest I don’t think I took much of it in, at the same time bloods were taken. On my next visit to the Churchill I saw the specialist who told me my blood results had shown that the corrected diagnosis was SLL not CLL and told me I was at stage2 on a watch and wait. Can anybody tell me anything about SLL, it’s all very new to me and I don’t understand the difference between the two (CLL – SLL). Also how long is the watch and wait or does it depend on the individual fitness and age (as I’m overweight and 59) and concerned?

14 Replies
oldestnewest

SLL and CLL are both Non-Hodgkin's Lymphomas (N-HL) and are due to slowly increasing B-lymphocytes. Both are considered to be the same disease by the WHO, with the difference being where the B-lymphocytes tend to concentrate. If it is within the lymph nodes then it is Small Lymphocytic Lymphoma (SLL) and if the lymphocyte blood concentration exceeds 5, then it is considered Chronic Lymphocytic Leukaemia (CLL). It can be considered a cancer of the immune system, with your immunity tending to worsen as the condition progresses.

Treatment for both is the same. Because SLL/CLL is (generally) slow growing and there is (currently) no cure, plus currently approved treatments may actually worsen immunity, patients are put on watch and wait until symptoms progress to the stage where treatment is considered necessary. SLL/CLL is highly individual in the way it expresses itself and researchers are still trying to find good predictors to indicate time to treatment and which treatment is optimal for a given CLL type. You should be assigned to a haematologist for regular blood test assessments and checkups, where disease progression will be monitored. Among other things, this includes checking for changes in your spleen and lymph nodes and if your SLL develops into CLL, monitoring doubling time of the B-lymphoctes in your blood.

Have a look at the last few polls to see how long members have gone without treatment and what they have done to improve their health. Improving your health (getting your weight down and improving your fitness) is definitely recommended as a way to improve your quality of life and help you get through treatment if it is needed.

Recent relevant polls

How long to treatment?

cllsupport.healthunlocked.c...

How long since diagnosis?

cllsupport.healthunlocked.c...

What have you done to maintain/improve your health?

cllsupport.healthunlocked.c...

I'm sure you'll have plenty more questions. If you can't find the answer by using the search facility for this site, please don't hesitate to ask - we're a friendly lot.

Neil

(I was diagnosed with Stage IV SLL/CLL over four years ago)

Reply

Thanks for the information at present I'm trying to digest all the new facts that I’ve been given. Can I ask, some of the blogs refer to numbers and letters - example “ABT-199 in difficult to treat patients with F refractory or del 17p disease.” This is another language to me, how do I make sense of it or any future blog. Is there a guide or code breaker?

Reply

Hello Blenheim welcome to the community

Here’s a link to several UK information resources written in patient friendly language that you may find helpful to aid explaining all that is very new and very confusing.

Several UK sources of CLL & SLL patient information and support that may help the recently diagnosed: cllsupport.healthunlocked.c...

From ;MORE ABOUT CHRONIC LYMPHOCYTIC LEUKAEMIA - taken from the LLR link in the above: leukaemialymphomaresearch.o...

"The World Health Organisation has produced a classification of leukaemias and related conditions and this describes CLL as chronic lymphocytic leukaemia/small lymphocytic lymphoma (CLL/SLL). SLL is not a different disease; the treatment and outlook is exactly the same whether doctors call your condition CLL or SLL"

From Macmillan: Small lymphocytic lymphoma (SLL): macmillan.org.uk/Cancerinfo...

Neil has provided links to recent community polls evidencing just how many of us are on watch and wait and for some that could be for a very long time. It is hard to get your head around, diagnosis is not a death sentence We have effective treatments but are only treated when we have to be, as medicines improve this may change in the future.. The good news is there is much activity and progress being made in SLL/CLL medicine,and many exciting new treatments are being trialed that may be the future. .

Also from Chris: Understanding CLL & SLL: cllglobal.org/pastArticles/...

cllsupport.healthunlocked.c...

Here’s a link to an interesting discussion about SLL and CLL by the late Professor Hamblin reviewed by Chaya Venkat at CLL topics. updates.clltopics.org/1993-... the community discussion thread: : cllsupport.healthunlocked.c...

I hope some of this is helpful.Take your time learn as much as you can about your disease. You will find much support here ask about anything that is on your mind, there is an immense amount of combined experience and knowledge here in the community. You are not alone.

Nick

Reply

Thank you for the very kind welcome and all the information links. It looks as if I have a lot of reading ahead of me.

Reply

Hi Blenheim,

Welcome to the community you'd rather not have joined but in time will be relieved you discovered!

Neil and Nick have provided you with excellent information and links to help you understand the condition/s which I'm sure must have you head spinning at the moment!

By sheer coincidence today is the anniversary of my diagnosis, described by Nick as my 'canciversary'. And yes I am certainly going to celebrate this milestone tonight! Like all of us here, I can remember the immense emotional impact of discovering I had CLL and I'm sure you are feeling fear and confusion about the implications of it all.

What I can tell you Blenheim is that a year ago today, at this very time I was in a state of deep distress and thought I'd been delivered an immediate death sentence.

Over this last year I've learned all I can about my condition, tried to keep myself as healthy as possible (plenty of hand washing and avoiding the walking infected!) and used the wonderful support that's available on support sites like this. We all 'suffer' our conditions individually but we cope better collectively because of the uniqueness of this form of cancer.

There is life with CLL/SLL and it can be a good one. It's just now we have an 'altered reality' and have to learn to embrace and tackle the challenges one by one. I'm not saying some days won't be tough.

It may be a very long time before you require treatment and these conditions are firmly on the scientific and research radars now so we have every reason to remain optimistic.

Please feel free to post whenever you feel the need for further advice, information or support.

Best Wishes,

Newdawn x

1 like
Reply

Thanks for your good wishes it's reassuring and to some degree comforting that there is somebody out there to talk too.

Reply

Blenheim, I too have SSL and I'm treated at the Churchill in Oxford. I was diagnosed in December 1994 at the age of 39 so now 19 years down the road and proof that there can be plenty of life with SSL. I was Stage 4 when diagnosed and was only on watch and wait for 6 months before treatment. I was given 6 cycles of Fludarabine and then an autologous stem cell transplant. At the time there was a theory that if you hit it really hard there was a chance of a cure. This proved untrue and it's unlikely that you would go down this route today. My first remission lasted 11 years until September 2007 when once again I needed treatment, this time cyclophosphamide and fludarabine and again I got a complete response and am still in remission.

I'm fortunate to be a sports nut and swim once or twice per week and play squash two or three times a week. My weight is fine and is the same as it was 30 years ago. I can't say that my fitness has kept the SSL as bay but I think it helps.

The biggest difference between SSL and CLL is that we have no easy way of knowing how the disease is progressing because CT scans are the only real way of checking the tumour load in your lymph glans and we don't want too many of those because of the X ray dose from each one of them. When I was first diagnosed I had quite large nodes in my neck but second time around by lymph glands were near normal but to quote my consultant by bone marrow was stuffed and that resulted in anemia, neutropenia and thromobocytopenia. In many ways because we can't measure progress you have to adopt the attitude if I feel well I'll get on with life.

As we must live quite close I'm happy to meet up and talk things through with you.

Reply

Thank you for your answer to my shout of despair, I was beginning to think I was the only one with SLL. It's nice to be able to talk to someone that knows something about it.

I was beginning to worry when last at the Churchill I was told that on each visit the SLL test would be to measure the nodes in my neck, it seems at bit basic?

You’re completely correct and from now on I shall try and adopt the attitude “if I feel well I'll get on with life.”

It’s kind of you to offer to meet to talk, can I take you up on your offer when I’ve got my head straight.

Reply

when I 'found out' I had CLL it had apparently been 'in me' for several years without any sign or symptom; All that gave it away was a tremendously high white cell count (like, 33,000 vs. 8,000 which is considered 'normal'). I did 'watch 'n wait for nearly 2.5years until C-diff landed me back in the hospital, where a sigmoidoscopy first showed the SLL. Apparently, the two go together; I'm still fighting my C-diff, but will begin planning for chemotherapy once the C-diff is for sure out of my body.

Reply

Hi there Katier

Bubinjay and Cllcanada have introduce themselves by welcoming you to our growing community, and I'm sure that others will be along to help in any way that they can.

There is a wide vista of experience here, and I hope that you will take advantage of that experience .. there are no stupid questions ... we are all at different stages, but we are all still asking questions.

I was diagnosed in 2006 aged 47 and am still on watch and wait. Have you been told that you are due to start chemotherapy once the C-diff has been treated?

It is a common thread here that the CLL was ' in me ' without any sign or symptom ... in my case it was only found during a routine blood test, due to a sore throat that I couldn't shift.

Bubnjay is right ... you can soon reach overload .. for the moment .. first it's the C-diff that's the problem if it's landing you in hospital ....

.... ps.

Budnjay never uses the word genius, in replying to any of my questions ....

Reply

Hi Katie R,

I was diagnosed in December of 2012 with CLL at stage 4 (or C) and it had been in me for years although no blood test gave it away. It was when my lymph nodes started swelling. I've been on watch and wait since then and the doctor kept saying "years" before treatment. On my last checkup he is talking about months now, waiting for some new drug to be approved by the FDA.

I don't know what to say. Welcome feels so... I don't know but what I can say is that the people on this forum are very forthcoming. None of us want to be here and yet here we are trying to make sense of it all. Anyway, you've found a good group and they seem to be knowledgeable.

Reply

Welcome to this rather exclusive club, one we'd all rather not have joined. Lots of valuable information is included in the replies you have received. You will be glad you found us but I imagine your head is whirling and while its good to have information at your fingertips, unless you are a genius you soon reach overload and it all gets very difficult and technical. I have been diagnosed 3 years but many who kindly share their knowlege with us have many more years in watch and wait.

I hope you will not mind me advising you to slow down, don't panic you will have plenty of time to come to terms with SLL. There are as you have found plenty of people on this site who have been as scared and traumatised as you probably are now. Take a breath and know that you are not alone. Lovely helpful people on this site,

Best wishes

Bubnjay

Reply

C.diff often occurs after a long exposure to antibiotics. It is not directly related to SLL.

However...

CLL/SLL causes a compromised immune system, which opens you to bacterial infections like C.diff...

So...

SLL = compromised immune system = C.diff and a host of other things, viruses, fungi, bacteria and parasites...

I have been diagnosed 15 years... slow down and smell the roses... :-)

I suggest you start your journey reading the follow booklet, it will get you on the right path... just download it to your computer, iPad etc...

lls.org/content/nationalcon...

Reply

SLL - lymphoma whereas CLL is leukemia

I have Non Hodgskin Lymphoma which is SLL. I have had it for 2 1/2 years. As it got worse I grew more tired every day. It was a year before I started on any medication. The first med Leukeran eventually made me ill with toxicity. The Rituxin infusions did nothing. Now on Imbruvica for the last four months has taken all of my blood counts to normal. I still feel tired but my age of 76 may have something to do with that after being relatively inactive for the last two years. My biggest disappointment in all of this was how long it took to get to treatment - it was a full year - three months after being diagnosed. And then because of insurance they had to try the less expensive drugs first. Personally I would rather have lymphoma than leukemia - they are very different diseases. If you are going to feel tired from the disease, your weight is going to make you even more tired. js in Pa.

Reply

You may also like...