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CLL Support Association
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diagnosed SLL in 2014

I was diagnosed SLL in 2014. Did not have any treatment - was on wait and watch. All this time my Lymph nodes keep growing everywhere. Check up and Blood test -every 3 month, couple CT scans during this period.

LDH level slowly but stable going up .

Now looks like it is time to be ready for treatment. Scheduled appointments for CT and another CLL/Sll specialist .

Does anybody have similar situation?

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the prescription drugs that are targeted therapy have changed tremendously since 2014. Imbruvica,venclexta,gazyva etc. more options that most of the time work

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I’m glad to hear you are going to a CLL specialist that’s so important because things are changing. Where about are you? Which country you are in makes a huge difference and what your health funding situation is what you will be offered treatment wise. You may be offered a clinical trial as there are new combinations and new options being looked at all the time so it’s worth thinking about how you’d feel about volunteering. Quite a few of us on here have done that including me. But it’s not for everyone. They will need to look at your CLLs genetic markers to see if those unique markers will have an influence on what is available to you where you are.

Current main options (depending on where you are) include

FCR Chemotherapy(which includes an immunotherapy antibody Rituximab)

Ibrutinib a selective oral medicine (in some areas but not every where) becoming the main first line treatment for whatever people’s markers

Venetoclax an even newer selective oral treatment

Other options include newer medicines related to Rituximab or ibrutinib, and various combinations of drugs.

So as you can see the great thing is there’s often a choice, even if your funding arrangements might specify that you had to try a certain treatment first.

Makes it hard for us to make comments specific to anyone’s situation unless we know which country they are in. A lot of people are either including that in their name on here as I have or in their “about me” paragraph.

Whichever of these options you get offered it’s good to know that they ALL have a very high chance of causing a response initially. And that we also have other options in reserve for the future if needed. As recently as 2014 when you were diagnosed we couldn’t really have said that so clearly. So it’s a rapidly developing field. Good news for us.

Treatment can seem very daunting. I know it did for me. But you are not alone and whatever treatment you are offered someone in here will probably have had it.

Try not to be too alarmed at the huge lists of side effects that will probably be mentioned also. Yes there are side effects. But many people find few or only mild effects depending on the treatment. Of course nothing is without its risks which is why they didn’t want to treat you straight away.

One other thing to be prepared for is sometimes when we go to see a CLL specialist thinking it’s time to treat they say “actually we think you should wait a bit longer”. If you are the kind of person who would like to know a bit more about your treatment decisions here is the standard expert list of reasons for treatment (some of which are a bit open for interpretation and so hence different doctors sometimes have different views about the same patient).

Active disease should be clearly documented to initiate therapy. At least 1 of the following criteria should be met.

Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cutoff levels of Hb <10 g/dL or platelet counts <100 × 109/L are generally regarded as indication for treatment. However, in some patients, platelet counts <100 × 109/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.

Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly.

Massive nodes (ie, ≥10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.

Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months; patients with initial blood lymphocyte counts <30 × 109/L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded.

Autoimmune complications including anemia or thrombocytopenia poorly responsive to corticosteroids.

Symptomatic or functional extranodal involvement (eg, skin, kidney, lung, spine).

Disease-related symptoms as defined by any of the following:

Unintentional weight loss ≥10% within the previous 6 months.

Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).

Fevers ≥100.5°F or 38.0°C for 2 or more weeks without evidence of infection.

Night sweats for ≥1 month without evidence of infection.

Hypogammaglobinemia, or monoclonal or oligoclonal paraproteinemia does not by itself constitute a basis for initiating therapy. However, it is recommended to assess the change in these protein abnormalities, if patients are treated. Also, patients with CLL may present with a markedly elevated leukocyte count; however, leukostasis rarely occurs in patients with CLL. Therefore, the absolute lymphocyte count should not be used as the sole indicator for treatment.”

bloodjournal.org/content/13...

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Thanks so much for this Adrien

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Thanks a lot.

I am in United States, Chicago.

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Hi there and welcome. I also have SLL and am at a similar stage as you- extensive lymphadenopathy. My specialist at the BC Cancer Agency told me 6 months ago he thought would need treatment within a few months. I’ve made it 6 months so far.

Now I’m wondering if I’ll be told at my appointment next week that it’s time. I’m experiencing more symptoms and discomfort. Tomorrow I get my bloodwork done. it’s always in the normal range and I don’t have many data points but it appears to be trending up.

I really want to thank Adrien for such a comprehensive response regarding treatment options. Timely for me (perhaps).

Good luck.

I’m in British Columbia, Canada.

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You will be glad to hear BC has opened up access to first line Imbruvica (ibrutinib) as of March 1. The criteria is still somewhat restricted, but better than it was... your CLL doc at BCCA will be able to advise you.

~chris 🇨🇦

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Thanks Chris (and I’m going to start adding the flag to my posts!)

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I’m assuming they’ll do a FISH or the HVIG?

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/9 years it has slowly progressed since then and now I am on imbruvica. The wait and see iss very stressful. My lymph nodes were and are swollen. I've had some surgically removed but they aren't doing that anymore.

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