Treatment for life?

[Quiltingone]

Hello. First time posting here. Diagnosed with CLL in July by flow test and Fish test. Although still technically in lymphocytosis. My chart says diagnosis: CLL. During the discussion in July my Dr told me of things they will be keeping an eye on. Then he said he won't discuss particular treatment plans at this time because things change and new treatments happen frequently. But he did say that once I begin treatment, I will be taking a pill for the rest of my life. I have the 11q deletion which he said indicates that I will begin treatment sooner rather than later.

[Lawand1]

it sure how old you are as this has a bearing to your question. New targeted treatment can be highly effective. I’ve been on two drugs over 9 years and lead a very active, healthy normal life. Best wishes in your journey

[AussieNeil Partner Administrator]

Hi Quilting one and welcome to our community.

I'd say that the advice you have received is your likely your treatment outlook with currently available treatment options. Your specialist was absolutely right to say that "he won't discuss particular treatment plans at this time because things change and new treatments happen frequently." We've seen a revolution in CLL treatment options in the last decade and there are plenty of clinical trials trying to find even better treatments that will be curative.

Unfortunately 11q del CLL is the least favourable of the results you get from FISH testing, which looks for common chromosomal defects with CLL. Combination fixed term treatments don't tend to deliver long remissions, so currently, when someone with 11q del gets to the point of needing treatment, maintenance therapy is commenced with a BTKi drug (typically, acalabrutinib, ibrutinib, or zanubrutinib). Some of the early ibrutinib trial participants are now into their second decade of maintenance therapy, but the mean time to developing resistance is about 6 years, after which it's possible to switch to a third generation BTKi, currently pirtobrutinib for yet more years of BTKi maintenance therapy.

These results are mainly from people who have previously had older chemotherapy treatments, which made them tougher to treat, so the results will improve as we accumulate more data from people who have a BTKi drug as their first treatment.

Should resistance develop to that BTKi, therapy switches to BCL-2 treatment, currently venetoclax, though second generation BCL-2 drugs are also being assessed in clinical trials and so on.

I've tried to keep across new treatments in development in this post healthunlocked.com/cllsuppo... it's a formidable task! That's why your specialist wisely declined to discuss treatment options with you

Neil

[cajunjeff]

.Words have different meanings , and sometimes the same words have different meanings to different people.

Currently, one of the several treatment agents for cll, and 11q cll, is an oral btk drug which might be ibrutinib, acalabrutinib or some other drug from the same class. These drugs rarely cause our cll to completely disappear, such that some doctors might describe this as being on a pill forever, or someone might interpret thats what their doctor said.

I think it would be more correct if doctors who describe btk drugs as lifetime drugs, would rather say that one will cll starting a btk drug today might be on it “indefinitely” as opposed “for their life”. While those descriptions might be interpreted as the same by some people, their meanings are quite different. For a lifetime means to me for ones entire life. The more correct definition “indefinitely” carries a connotation that as long as the drug is working, so long as one doesn’t develop intolerable side effects, and so long as nothing better comes along - one might stay on that drug until they die.

I suspect the probability is that most people, particularly younger people with cll, will not be on a btk drug forever. It’s more likely, as is happening today to some extent, that new cll drugs in development will be added to or replace btk drugs.

And while I think your doctor was referring to a lifetime on a btk drug, he could have meant you will be on a series of oral drugs, like taking venetoclax if a btk drug stops working.

As Neil said, it’s probably premature to discuss treatment options now as cll treatment options can change from year to year, if not month to month, with evolving cll drugs. When I was diagnosed with Cll years ago, chemo options like FCR and BR were my main options. I started treating two years after my diagnosis on ibrutinib. As it turned out, having me worry about a chemo treatment would have done nothing, I never took one.

As a final note, let’s suppose your doctor is correct in saying you will be on an oral drug for life. I am on calquence now for the foreseeable future, an oral btk drug, that works great with tolerable side effects. Of all the cancers I might have gotten, is it all bad that mine might be controlled for my normal life expectancy by only having to take a pill at breakfast and dinner? Not to diminish the challenges so many of us face with cll, there are far worse cancers and other illnesses we might have. There are far worse forms of leukemia.

11q can be a more challenging version of cll to treat, but it actually appears to do even better with btk drugs than some other Cll types. No one can accurately predict the life expectancy of anyone diagnosed with cll today, there just isnt enough data with he new drugs. Based on the early returns from clinical trials with new drugs and new drug combinations, one hears of more and more Cll doctors encouraging their cll patients that they can possible live their normal life expectancies and beyond. We are seeing that every day on this forum with people diagnosed with even aggressive forms of cll, and still kicking 15 and 20 years out. Considering that Cll typically manifests in our 50s, 60s and 70s, these treatments will carry many of us into our 80s or beyond.

Thats the story I tell myself. Do my eyeglasses have a rose tint? Probably so, Im wired to be glass half full. But at this point, my cll is very well controlled by my “forever” pill. If it keeps working, as it might, I might not even need some revolutionary new treatment to make 80. I personally think we are headed to functional cures of cll for many people newly diagnosed with cll. Thats the attitude I think we should have. How awful would it be to have worries about cll dominate our golden years, and then live 20 or more years post diagnosis.

Worry is not all bad, it keeps us from being in denial and being proactive with our cll. It’s just a question of balance, as the moody blues might sing. We need to worry enough to stay proactive with our cll and not bury our heads in the sand. But life is happening now and worrying about whether we will will still be on a pill ten years from now helps nada. /philosophical rant over 😎.

[Stamphappy in reply to cajunjeff]

Beautifully said.

[SeymourB]

Quiltingone -

The NCCN (National Comprehensive Cancer Network) Version 3.2023 classifies del11q with the high risk FiSH types. It recommends time limited Venetoclax + Obinutuzumab as an alternative to continuous BTKi (ibrutinib, acalabrutinib, zanubrutinib) for treatment naive patients:

"Ibrutinib and acalabrutinib ± obinutuzumab are the preferred first-line therapy options for all patients including in high-risk subgroups such as those with del(11q) or del(17p)/TP53 mutation and unmutated IGHV. Venetoclax + obinutuzumab is an effective fixed-duration chemotherapy-free first-line treatment option for all patients including those with del(17p)/TP53 mutation."

There are several Phase 3 trials of BTKi and Venetoclax combinations in progress that stop treatment when a particular level of MRD (Measurable Residual Disease) is achieved. Someone please correct me if I'm wrong, but I think at least one BTKi + Venetoclax combo is already approved in the EU or UK.

So I don't think a pill for life is inevitable at all.

=seymour=