Are SLL AND CLL the same thing?

[Krikri1989]

Anyone diagnosed at early age like 30 ? By watching and waiting aren’t we waiting for sll to get worse?

[AussieNeil Partner Administrator]

This post looks at the 'differences' between CLL and SLL: healthunlocked.com/cllsuppo...

By watching and waiting we are indeed waiting for CLL/SLL to get worse but it may not do so enough for us to need treatment for about 30% of us - so why treat people who may never need it? Further, treatment further suppresses the immune system, which with the older chemo based treatments, doesn't fully recover, so treatment is considered best left until needed. A study years ago found no difference in life expectancy between patients treated early and patients treated later.

Neil

[Fant1924 in reply to AussieNeil]

We're any of these studies conducted using our new novel therapies? I suspect these tests are chemo based and not relevant to today's treatment choices.

Dennis, 70, Ibrutinib

[AussieNeil Partner Administrator in reply to Fant1924]

The CLL12 clinical trial is looking at how patients fare when started on Ibrutinib early: ncbi.nlm.nih.gov/m/pubmed/2...

The danger for patients entering this trial is early development of resistance..

Neil

[Hidden]

good question. I agree with you that it seems counter-intuitive. Wait and Watch is used often because the early intervention does not improve survival often measured in decades

[Krikri1989 in reply to Hidden]

Thanks, but it’s so frustrating. Is there a chance someone never has symptoms?

[lankisterguy Volunteer]

As AussieNeil wrote By watching and waiting we are indeed waiting for CLL/SLL to get worse but it may not do so enough for us to need treatment for about 30% of us - so why treat people who may never need it?

The 30% that never need treatment also usually don't have significant symptoms- otherwise they would get treated.

Len

[lankisterguy Volunteer]

You may want to read this pinned post:

healthunlocked.com/cllsuppo...

Len

[Krikri1989 in reply to lankisterguy]

Thanks , wondering if anyone has gotten it early 30s, ans what should we expect?

[BJollie in reply to Krikri1989]

Diagnosed w unmutated SLL in 2011 at 39. Bend + Ritux spring 2012 because a large node in my chest was causing breathing issues. Relapse Jun 2016 (found a node under arm pit 6.5% 13q) & started Ibrutinib Aug 2016. Ironman 70.3 Oct 2017. Workout hard 4 Days/wk & eat pretty good. Nothing but hope with exercise & new meds/combos!! You got this!!

-Jollie

[Krikri1989 in reply to BJollie]

Thanks for sharing! Keep going!

[Krikri1989]

Hi guys, another question, does sll make your lower half body sore? Thank you

[lankisterguy Volunteer in reply to Krikri1989]

Hi Krikri,

You probably have seen that CLL & especially the SLL version of CLL vary widely from patient to patient, (in the exotic high doctor language: "heterogeneous" ).

I have had serious fatigue, muscle cramps and sore joints in my legs nearly every time my CLL progressed to treatment ( 3 times so far).

The first time we found some iron & vitamin d3 deficiencies, others discovered low vitamin B-12.

The second time I was diagnosed with a HHV-6 infection en.wikipedia.org/wiki/Human...

I was also taking a statin, and stopping that reduced my leg & joint pains.

Since CLL causes us to be immune compromised- your doctors need to look well beyond normal ailments, and you may need to consult a infectious disease doctor that treats HIV, MS, etc. patients with immunodeficiency.

Len

[Krikri1989 in reply to lankisterguy]

Thank you for your message !

[Lola69 in reply to Krikri1989]

Yep!! Legs and knees