What does curing CLL mean?: This is a question I... - CLL Support

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What does curing CLL mean?

CoCoLuna11 profile image
12 Replies

This is a question I often wonder about but have never asked my doctor. When we hear about a cure for CLL what we really mean is a way to live with it, correct? The existing treatments and treatments on the horizon won't necessarily eliminate CLL altogether or the associated risks of secondary cancers, additional mutations, and the dreaded Richtor's transformation. Or are there "cures" that will ?

12 Replies
AussieNeil profile image
AussieNeilAdministrator

CLL specialists are very reluctant to say that anyone with CLL has been cured, but there are now some who underwent FCR treatment from the early trials who have had remissions of 20+ years. We know from long term studies, that if you are IGHV mutated, you have around a 55% chance of an indefinite remission, If your remission lasts to 7 years, it's extremely likely to last 20 years.

Then we have this recent news of a 10 year remission 'cure' from early CAR-T CLL trials:

healthunlocked.com/cllsuppo...

Historically, CLL is treated by periodically knocking back the tumour burden when it starts to seriously overwhelm our health. With the advent of BTK inhibitors, periodic treatments were replaced with maintenance therapy, though for some of us, we may also benefit from long term treatment holidays with fixed term combination targeted therapy treatments. There's the hopeful expectation that this option could deliver the same long remission times delivered by FCR, plus these more modern treatments aren't limited to those of us 65 years of age or younger, which is a huge plus. The precedent for BTK inhibitor maintenance therapy was the effective cure of CML, another leukaemia, by another inhibitor, imatinib/Gleevec. Prior to that inhibitor being developed, CML wasn't considered curable, but the vast majority of people diagnosed with CML now have near normal life expectancy.

Spontaneous remissions are also known to occur with CLL, with an incidence of around 1%. Unfortunately for about half of us, of around the ~30 case studies I've come across, only 1 was for someone with unmutated IGHV. Given the historical difficulties with checking IGHV mutation status, I wonder about that exception.

CLL specialists would consider a full cure has been delivered when our health has been restored as if we never had CLL, i.e. no sign of the CLL and no long term impact on our immune system. It's the latter which is now considered the last remaining barrier to a full cure for CLL.

Neil

CoCoLuna11 profile image
CoCoLuna11 in reply to AussieNeil

Thanks Neil! Yes, it’s that last part that I’m fixated on. I believe we are close to keeping the CLL at bay but I’d like to think that in doing so we improve the immune system in such a way as to eliminate those other associated risk factors.

Can we assume that those who are 20+ years out from FCR and the 2 that are 10+ out from Car-t are no longer at risk for Richter’s?

AussieNeil profile image
AussieNeilAdministrator in reply to CoCoLuna11

With CLL, there are two forms of Richter's Syndrome/Transformation; de novo and clonally related. That is, arising independently from the CLL and deriving from it respectively. Survivability is considerably better for de novo Richter's. Richter's is also far more likely with more aggressive CLL, where you don't get long remissions. I don't have any long term studies to support my suggestion that those with long CLL remissions would have their risk of Richter's approaching that of those with no history of blood cancer, but at least for those with long term remissions, with little to no CLL present, they are very unlikely to develop clonally related Richter's, the worst kind.

Neil

CoCoLuna11 profile image
CoCoLuna11 in reply to AussieNeil

Interesting. I knew of the two types and varying degree of severity but I did not know that having a long remission may confer an advantage over shorter ones. Maybe in that case it makes sense to treat sooner than later. I just started Calquence after a 6 year remission. I have some nodes and ALC is around 40 but otherwise fine. I could probably wait a while but headed in that direction anyway and perhaps it's better to just knock it back so it doesn't have a chance to "go wild".

70s-80s-overlander profile image
70s-80s-overlander in reply to AussieNeil

Quote, "CLL specialists would consider a full cure has been delivered when our health has been restored as if we never had CLL, i.e. no sign of the CLL and no long term impact on our immune system," unquote.

At my age, almost 74, I'm happy to have "good enough" -- the sense that no one views me as ill -- & the general absence of symptoms -- & with an apparently manageable degree of immune deficiency. I don't see the need to have almost perfect blood numbers or immune status.

"Undetectable minimal residual disease"/ UMRD does not have much meaningful relevance to my life. I'm certainly not willing to take on potential medication side-effects & financial "side effects" -- unless I absolutely have to do so.

Thanks, though, for the continued education of us.

Sushibruno profile image
Sushibruno in reply to AussieNeil

Neil, guess what my favorite word is 🙃?

cajunjeff profile image
cajunjeff

I think whether Cll can be cured is more of a discussion of semantics than the science of our treatments.

Cll doctors I have read have said those who took fcr and are cancer free at ten years are unlikely to have their Cll recur.

That’s a cure in my book. With the high rates of mrd negativity being achieved with the novel drugs, I think some of those people are likely cured as well.

I know if I am fortunate enough to reach mrd negativity with my treatment and am still mrd negative 10 yrs out, I will consider myself cured.

CoCoLuna11 profile image
CoCoLuna11 in reply to cajunjeff

Right, but I also want you to be cured with an immune system intact so that you aren't at a higher risk for skin cancer, etc. ☺️ I want it ALL to be cured!

lankisterguy profile image
lankisterguyVolunteer

Ah! a person that speaks to my heart!💛

-

I have been an invited speaker at conferences with 2 major pharmaceutical companies, and at the end of each one, when asked what I wanted most, in the future, I immediately said "fix my immune system" -

Len

BeckyLUSA profile image
BeckyLUSA

When I sit in the infusion room getting my IVIG treatments every six weeks, I see mostly those people getting chemo for “other” cancers. Most of them “look” sick, women with their head coverings, men looking haggard and gray. I then ask myself what I have to complain about. My cancer is under control, I take one pill a day and get a 5 hour resting session once every 6 weeks and see my CLL specialist every 3 months. I look at my CLL as being similar to Type 1 diabetes. Not curable but easy to live with if I do what I am supposed to do. Secondary cancers are a fact of life we have to live with, because sometimes they can even be caused by the treatment that has “cured” us. Will my cancer “progress”? Maybe, in the same way someone with Diabetes might progress to blindness, heart issues etc. And I agree that until we find a cure for an impaired immune system, CLL cannot be considered cured. Unless we are one of the very few people who never get sick and die of “natural” causes or from an accident, etc., we are all going to die of some illness that was “Not” cured. Just the way I think about it.BeckyL USA

CoCoLuna11 profile image
CoCoLuna11 in reply to BeckyLUSA

BeckyL- agreed. I also see ivig treatments as an opportunity to sit still and relax. Don’t get me wrong, I feel very fortunate to have a form of CLL that rarely interrupts my life. But I have had some concerning issues (surgery to remove part of colon and appendix) due to something looking like a lymphoma but not quite. It’s those kind of surprises that I wish were better understood. I’m 52 and otherwise healthy and don’t want to lose any more organs. ☺️

BeckyLUSA profile image
BeckyLUSA

You are so young to be going through all of this! I Pray things will turn out as well as possible. Keep us informed about all of this!Becky

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