Newly diagnosed


I have just recently been diagnosed with SLL, though have been told it's a form of CLL, which confused me straight away. I am on Watch + Wait, and am still trying to get my head round things, one of the symptoms I have is the fatigue, I have never felt tiredness like this before so I will be interested to know how anyone copes with this and in fact the whole situation. I have never joined a support group before, so this is all new to me too 😕

12 Replies

  • First of all you have found a great site for support!

    I'm sure several of our colleagues will point you towards explanations of SLL but look in at the CLL support association website and at the CLL site where I am sure you will find info. Did you get any booklets explaining the disease when you were diagnosed?

    As far as fatigue is concerned it is unfortunately one of the things we have to live with and the the answer has got to be to pace yourself as it affects each of us in differing levels. Some CLL doctors still don't acknowledge that fatigue is associated with the disease but that is because there is little medical proof recorded. However, many of us here have experienced this symptom so we know it is part of the journey.

    I will leave my colleagues to enlighten us further but will say don't panic about your diagnosis as you read through many posts on here you will find that many have been on watch and wait for many years after diagnosis.

    I wish you well and I am sure you will get much better advice from others.

    Best wishes


  • Welcome, and be reassured that you are far from the first person diagnosed with SLL to be confused. It may help if you appreciate that diseases are named before the underlying cause is identified. With SLL and CLL, it's the same B-lymphocyte that has developed a cancerous clone at a particular point in its development and treatment and much of the monitoring is the same. The major difference is that the cancerous B-cells in SLL don't generally grow to significant numbers in the blood and in some cases are hard to detect there. I was diagnosed with SLL/CLL - which was actually SLL for me, because while I was able to be diagnosed via a blood test, the level of lymphocytes was less than the cut-off number of 5.0, but has since climbed into the CLL range. In some countries, as was the case for me, you are actually told you have SLL/CLL, not one or the other. I too found fatigue particularly problematic, but found that boosting my low vitamin D level helped considerably. Other members have also found the same, so you'll find considerable discussion on that if you search for vitamin D and fatigue.

    How were you diagnosed? Was it via a blood test or node biopsy?

    If you haven't already found the section where frequently asked questions are answered in our Pinned Post section, check that out on the right side of this page:

    You'll find much more about the similarities and differences in the pinned post What's the difference between CLL and SLL? :

    Other than the discussions concerning high white cell counts in blood tests, you'll find everything else here relevant to your SLL diagnosis. It is still worth your while (if/when you develop an interest), to learn more about your different blood tests, because SLL can infiltrate the spleen and bone marrow as it progresses and that can affect your blood make-up and thereby your health. I was actually diagnosed at stage IV because of an investigation to find out why I'd developed neutropenia. That was over 6 years ago and I still haven't had treatment. (Actually it is fairly common for SLL patients to be diagnosed in more advanced stages, because it remains hidden until later in the disease.) So if you do eventually find that you are in a more advanced stage than you thought, don't be surprised or panic. Stage IV in SLL and CLL too, is not like stage IV in other cancers, because of the chronic nature of CLL/SLL. You can still go for years without needing treatment and may in fact never need it.

    This is a friendly, helpful and supportive support group. Don't hesitate to ask questions if you can't easily find the answers and do check the date of posts you find in your searches dealing with treatment, because this is a rapidly changing area with safer and more potent drugs/drug combinations being trialled all the time. It is quite likely that by the time you need treatment, if you ever do, that there will be a treatment regime that will keep your SLL under control if not cure it completely.


  • Hi, Thanks for replying, I was sent for an ultrasound as my GP suspected I may have gallstones, the results showed I did indeed have gallstones but also showed a mass near my bowel, after a CT scan and biopsy I was diagnosed with SLL, I have to be greedy and have not one problem but two LOL.


  • Two years ago, when we polled our membership to find out how they had been diagnosed, 37% of our membership said that they were diagnosed with CLL/SLL from investigating another health condition:

    Good to see that you can laugh at the irony of finding out that you had a chronic, incurable cancer in addition to something relatively easily and permanently dealt with...

    I hope the shared suggestions on dealing with fatigue prove helpful. Some members have reported immediate improvements, whereas others (myself included) found it was a slow, gradual improvement.


  • Morning to all, going to try all the suggestions re fatigue in the hope I can find one that suits me, but I know it's just something that we have to cope with.

    Hope you all have a good day, I will even though the weather here in Glasgow is, typical for summer here, wet


  • Hi Prosecco1,

    Welcome to the group. You are amongst like minded people here sharing our experiences to help each other. Most important in my book is that CLL (and SLL) are in general very slow developing so try not to panic. I know that is easier said than done. Take your time to understand at the level you are happy with. Some go into much more detail than others.

    My understanding is that SLL is similar to CLL except the problematic B Lymphocytes are not found in periphery blood with SLL, only in bone marrow and Lymph nodes. As I live with CLL I'm not 100% sure on SLL but someone will soon correct me if I've given that wrong.

    Please consider adding your country to your profile if you have not. That way people rsponding can tailor their answers. There are people here from all round the world so sometimes the answer depends in your location.

    Live long, stay healthy, Rob

  • Hi. Love the user name choice :-) Newly diagnosed (3 weeks) myself so not much helpful advice for you but yo say that you have come to the right place for help and support. It's been a life saver for me. Scary isn't it? But here you will find tremendous support from people who know exactly how you are feeling and will help you adjust to your new circumstances. Please keep us updated as to how you're getting on. Post ftom others help us all so much. Best wishes. Peggy.

  • Welcome it is confusing isn't it and feeling fatigued doesn't help. take your time as many will mention SLL/CLL are generally slow progressing disorders so you have time to let things slot into place for you. They think that I may have a type of CLL that is more like SLL? , I have been on watch & wait for six years without treatment and still find this all quite confusing?, It does take a little time to understand the nuances of this new club we are members of, but here in this community you will be able to be guided to information and share experiences with others. Fatigue is a very common symptom of SLL/CLL every one here will have different strategies to cope with this, for me keeping moving and exercising my dog works best, but there are moments when nothing seems to help.

    "SLL is about 10% as common as CLL but should be managed in exactly the same way as they are effectively the same disease but for reasons which are not fully explained the CLL cells in the lymph nodes, liver, spleen or bone marrow of SLL patients do not circulate in the peripheral blood" Prof Chris Fegan, Cardiff CLL. CLL Support Association website:

    Lymphmoa Associaion information:

    "Technically speaking, CLL is actually a type of low-grade non-Hodgkin lymphoma and in some people the CLL cells are not found in the blood in large numbers, but rather they are found mainly in lymph nodes. This is then called small lymphocytic lymphoma or SLL because the abnormal lymphocytes are small in size and found in the lymph nodes rather than the blood. CLL and SLL are two forms of the same illness and they are treated in the same way.

    If you have SLL, the information here will therefore apply to your illness too. Both forms will be described together as ‘CLL’ unless there is something different about the SLL form that is important to highlight.

    - See more at:

    Best wishes


  • Well, nothing to add to the advice already given, just to say welcome and you are in the right place for excellent support from people who understand and who are going through the same things.

    No silly questions here and if you feel down its always good to have a rant and this is the place to do it.


  • The regular readers here and on other CLL sites know that any mention of fatigue gets a post from me about testing for re-activation of usual childhood diseases, so here it is again.

    "Don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue."

    We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblin’s blog on fatigue: mutated-unmuated.blogspot.c...

    Both times my CLL progressed I got severe fatigue and a reactivation of a childhood disease that added to my symptoms. In 2010 before treatment we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help. Don't just add some random amount of these supplements, get your PCP or Hem/Onc to test you for Iron & Ferritin, Vitamin D3 ( Cholecalciferol, 25-hydroxyvitamin D ), Vitamin B 12 since the correct amount to supplement may be drastically different than non CLL people.

    I also had Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time. When I was treated in 2010 with Rituxan monotherapy the fatigue problems decreased dramatically but the cough took months for the symptoms to slowly subside and the coughing disturbed my sleep some nights adding back some fatigue.

    In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed me entirely.

    So is it CLL and an opportunistic infection?

    Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.

    Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.

    And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.

    Since you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications.

    Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.

  • Thanks so much for your advice, will speak to my GP

  • Hi,

    I have been diagnosed just over a week and still in shock / coming to terms! What I have realized in such a short time how important and valuable this community is! Plenty of advice / support / tips and encouragement.

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