More help / info please SLL

Hi all

I am seeking some more advice from you good people regarding my SLL. On my first visit to hospital 3 weeks ago I was diagnosed with SLL following a biopsy on my lymph nodes under my arm. I then had a CT scan , and on my second visit (2weeks after my initial diagnosis), I was told that after assessing my scan , I would need to start FCR chemo this Wednesday, due to big swellings that showed up in my pelvis, which I think must be at the upper end of what they like the size of the lymph nodes to be . All very sudden I know, and the worse thing has been trying to get all the relevant information and processing it all in such a short space of time. I am, as I know I have stated before, male, 42 , and physically fit. What sort of questions do I need to ask ,before my treatment starts, regarding the need for FCR so suddenly. I was told originally that this was a long term condition, yet before I have had time to understand the condition itself and get my head around the fact that I have got the "C" word, I am told that I need treatment. Does anyone out their know any contacts for advice on SLL specifically.

Many thanks to you and best wishes to everyone and your loved ones.

Regards Sparkio

7 Replies

oldestnewest
  • A CTscan revealed enlarged para-aortic lymph nodes and I was in treatment the following week...

    I think it is location, location, location, rather than just the size, but that would also be a factor...

    I had no external node involvement and felt fine...

  • As Chris implies, a very good question to ask would be what would likely happen if you delayed treatment, i.e. what could occur as your enlarged lymph nodes continue to grow?

    There are over 100 standard locations for lymph nodes in the body and while it is easy to check those in the neck armpit and groin areas, those buried in your trunk need a CT scan to correctly assess their size and location with respect to organs, etc. Given the significant cost and slight radiation risk associated with a CT scan, these aren't done frequently and as you've found, you can have quite large nodes and be totally unaware of them. Some people get very concerned about the radiation risk associated with CT scans, but I'm sure you can now appreciate the value of knowing what's going on internally. (I was diagnosed with SLL stage IV, four and a half years ago and had a CT scan and bone marrow biopsy back then. I've since progressed to CLL - still in W & W and would welcome the occasional CT scan to check what's happening.)

    Knowing when to treat SLL/CLL really is best left to the experts; treating too early or too late can both result in less optimal outcomes. Hence the earlier recommendations from site members to seek a second opinion from someone well experienced in SLL/CLL - doubly important considering how heterogeneous progression is. In Australia, the Leukaemia Foundation worked out that a GP sees on average about six to seven cases of lymphoma (that's all lymphomas, not just SLL) in their career, so you can appreciate the value of finding a specialist and learning for yourself how to best manage your condition.

    Neil

  • Hi Sparkio

    just a note to say thinking of you, your not forgotten. Just leaving replies to those who can give experienced practical advice like Neil.

    Bub

  • Cheers Bubnjay, my chemo starts on Wednesday due to the amount of nodes involved and there location. Thinking positive though so bring it on!

    Regards Sparkio

  • Hi Sparkio

    It is all very confusing , I don't require treatment yet but have a SLL presentation of CLL.

    Sorry to read you require early treatment . SLL is a long term condition and may require early treatment in some. I agree with Neil seek answers to the question why you are being treated so soon and not considered appropriate for “watch and wait “? There is much experience in the group those who have been recently treated should be able to help you with questions.

    There are many reasons for early treatment in SLL/CLL the current guidelines explain/outline a few. As does an article from the late prof Hamblin below. As Neil and Chris have pointed out SLL is managed and treated the same as CLL so the CLL recommendations may be of help in aiding your understanding too. The Multi-disciplinary team (MDT) managing your case should involve a consultant with a special interest in CLL.

    “ A multidisciplinary team (MDT) is a group of doctors and other health professionals with expertise in a specific cancer, who together discuss and manage an individual patient’s care. They plan the treatment that’s best for you.” The National Institute for Health and Clinical Excellence (NICE) recommend that people with cancer should be managed by a multidisciplinary team.

    macmillan.org.uk/Cancerinfo...

    You are entitled to a second opinion.

    From NHS choices, How do I get a second opinion?: nhs.uk/chq/Pages/910.aspx

    With SLL/CLL being so varied and heterogeneic, treatment of SLL/CLL is often refereed to as an art. consultants with a special interest in CLL will be most informed of current fast moving medicine and research and knowledge of latest clinical trials.

    It is very confusing as given time in Many SLL patients SLL tumour cells may not remain confined to the nodes and eventually spill into the peripheral blood, bone marrow and other tissues enabling the classification of CLL due to the quantity of cells in the blood.

    This is explained in a very informative article about the differences between SLL and CLL in a relatively recent article by the late Prof Hamblin reviewed by Chaya Venkat at CLL Topics:

    updates.clltopics.org/1993-...

    SLL Versus CLL: How Different Are They?

    Excerpt:

    "For advanced stage disease treatment is the same as for CLL, except that local symptoms are more commonly controlled by radiotherapy (though hematologists often forget that this is an option for CLL also). The real problem is when to begin treatment. So many indications to begin treatment in CLL are related to the blood count that when to start with SLL may be confusing. Obviously the appearance of B symptoms or of cytopenias is an indication for both, but it is not clear what degree of enlarged lymph nodes or spleen should trigger treatment. Generally people talk about symptomatic enlargement as being the indication to start. My own feeling, now that FCR has been shown to be a better treatment than any other, is that very large lymph nodes with a largest diameter of 10 cm should be an indication to begin, but the only practical way of establishing this for abdominal glands is by CT scan.".

    From the current UK CLL guidelines that touch on SLL management: onlinelibrary.wiley.com/doi...

    Treatment of small lymphocytic lymphoma

    Data on the optimal treatment of SLL is limited and patients are often included in studies that include other low grade B cell lymphomas rather than CLL. However, the biological similarities between SLL and CLL are so close that a similar response to treatment could be expected. This is supported by a single centre retrospective study of CLL and SLL that also showed a better outcome for both disorders when treated with regimens that included a nucleoside analogue and rituximab (Tsimberidou et al, 2007).

    Indications for, and choices of, treatment are the same as for CLL. The rare patient in whom SLL is diagnosed following biopsy of an enlarged lymph node in the absence of detectable disease at any other site, may be offered local radiotherapy with curative intent.

    Recommendation

    SLL should be managed in the same manner as CLL (Grade B2).

    Keep us posted

    Nick

  • Hi Sparkio

    Missed your last post ahead of my earlier. good to know your consultant has explained further your specifics.

    Wishing you the very best for Wednesday

    Nick

  • Hairbear, nice one mate , that was a very, very helpful message and everything that you have sent me is totally relevant. Thankyou for taking the time out to send it to me , I do think given the results of my CT scan, that I should go down the route of FCR, due to the size of nodes found below my diaphragm and where they are( deep in the abdomen).

    Up until my wife found this site, I had no idea at all about the condition I am living with, but with the help of your good self and other people on this site, I now feel knowledgeable enough to question what exactly is the best way forward for me.

    A BIG ,BIG THANKS TO YOU AND EVERYONE ELSE OUT THERE!!!

    Best wishes Mark

You may also like...