appointment today

[Reetywell71]

Goodmorning all!

I have my 3 month follow up today at MD Anderson in Jacksonville. My labs are completely normal as they have been since diagnosis June 2024🤞. As of past November my nodes have resolved to normal with one largest one reduced to 1.9 which originally at 6cm supraclavicular is why I was put on brukinsa within a month. I have been on half standard dose for a couple months now. Would it be presumptuous to inquire about putting on watch n wait? Am I anywhere near remission? I worry about long term effects of brukinsa since only approved since 2023. Maybe I should just be grateful for my current status? Any comments would be appreciated 😊. Rita

[Newdawn Administrator]

Hi Reetywell. Purely from experience (I’ve been on Zanubrutinib for 6 months, full dosage), I’d honestly be rather cautious about cessation of all meds at this stage. You sound to have remaining very small but nevertheless enlarged nodes and in the absence of a flow cytometry, BMB and probably a CT scan, it would be impossible to ascertain your level of MRD at this stage. It’s sounds unlikely you’d be in full remission even with normal labs. I actually went into my second treatment urgently with virtually ‘normal labs’ when my lymph nodes and spleen inexplicably and rapidly went on the rampage! 😳

I’d be inclined to be relieved to be on half dosage and keep the idea of a Zanubrutinib holiday until completion of the first year and perhaps can have some testing done to properly establish what’s really going on.

No reason to fear the Zanubrutinib. I don’t expect to be offered a holiday from meds anytime in the near future unless it fails or side effects become intolerable. It’s a very effective ‘maintenance’ drug over the longer term and half dosage is a real bonus. But of course see what your specialist advises.

Regards,

Newdawn

[Reetywell71 in reply to Newdawn]

Thank you so much for putting this in perspective. Woke up in tears this morning thinking I’ll be seeing an oncologist for the rest of my life and hoping that my present status doesn’t change too soon. Guess it takes time to fully accept my disease. I’m 8 months in and have been living my so called normal life. My mental demons have actually been my handicap so far. I will try to strive for acceptance and have gratitude. Thanks again. I really wish I had an in person support group just for SLL/CLL. I did well in AlAnon for many years and my son is 8 years in recovery and living a good life. One day at a time🙏

[Newdawn Administrator in reply to Reetywell71]

You’re doing incredibly well for what is relatively soon after your diagnosis. It’s hard when you don’t have a W&W, lead in phase to psychologically adapt. I had 7 yrs before treatment started and am now 12 yrs and 9 months into this. I totally identify with your mental demons because mine have chased me more times than I’d care to admit! Including today which is why I’ve spent this morning in the haematology unit.

You’re doing so well however and I’ve been to uMRD (totally undetectable levels) and back. All I want now is something that will give me longevity with the least painful side effects as possible. As Jeff says, it’s really something to be able to live a relatively normal life with cancer by popping a few pills each day. Don’t spoil the precious time at this stage if you can possibly help it. You’re holding steady and may find periods when a complete treatment break becomes possible.

Best wishes,

Newdawn

[Reetywell71 in reply to Newdawn]

👍❤️

[Reetywell71 in reply to Newdawn]

GM feeling positive after appointment. Doing well on the 2 caps of brukinsa and will continue and reevaluate next appointment in 3 months. They spoke highly of brukinsa and are getting good results. Had all my questions answered. Fortunately my MD Anderson is close by and I have good insurance. “Just for today” life is good😊

[tesoro5858 in reply to Reetywell71]

Check out cllsociety.org if you haven't already. They are based in USA and offer support groups virtually (were in-person prior to the COVID pandemic). You can choose by geographical area as some groups have offered occasional in-person meetings since the COVID pandemic has calmed down.

[Reetywell71 in reply to tesoro5858]

Thank you!

[cajunjeff]

Hello Reetywell, we had a discussion on here just last week on similar issues. It raised two questions. What constitutes a “remission” in the context of taking a btk drug for cll (brukinsa is a newer btk drug)? And the next question is when can we reduce dose or stop taking a btk drug?

To my understanding, cll doctors can use different definitions of “remission”. Outside of a clinical trial, many cll doctors tell their patients they are in remission if their labs go back to normal ranges. This type of remission is common with btk drugs.

In cll clinical trials, doctors often use a more strict definition that requires a person to be mrd negative before being declared in remission. To be MRD negative, one must have a flow cytometry or similar test that, to the sensitivity of the test, cannot find any cll cells. MRD negative remissions are, on average, much deeper and more durable than remissions based on normal labs. It is possible, but uncommon, to get an MRD negative remission on a btk drug alone. MRD remissions on combination therapies with some mix of the newer cll drugs are fairly common these days.

I doubt you have an MRD negative remission. You might be in, or approaching, a lab normal type remission. Getting mrd negative after a few months of a btk drug would be highly unusual. Your doctor might be doing routine flow testing to see how much residual disease you have, you can look for flow testing in your online records or message your nurse to see.

The current standard of treatment, again to my understanding, would be to continue to give you brukinsa at the same dose indefinitely so long as you tolerate it. It’s very possible as new data emerges, your doctor may add another drug to get you a deeper remission.

For that small percentage of people who get mrd negative on btk drugs alone, some doctors are stopping btk drugs altogether, with a plan to restart the drugs when their cll returns. This could be a few months or many years, I dont think they know. People who get mrd negative on combination therapy stop their meds when they turn mrd-, why not people on btk drugs?

Will some people who turn mrd negative on newer cll meds be cured and never need treatment? I do not think they know yet. Some people who got mrd negative have relapsed, so we know being mrd negative doesnt mean one has no cll, it just means the cll cells are so few they cant be counted. I personally think it quite possible some people are being cured now, just as some folks who took fcr and turned mrd negative never had their cll return. We will know better as we see ten and twenty year data on the new combination therapies.

I do not think its presumptuous at all to ask your doctor any questions about your treatment, when you might get off cll drugs and if any cll drugs might be added at some time to get you a drug holiday. I am no expert for sure, so my understanding of things might not be entirely correct. Your doctor knows your case best. Good luck to you. Some doctors already are saying that many of us on btk drugs alone will live just as long as people without cll and never need another drug. Considering we have a dangerous blood cancer, being able to live normally just having to take a couple pills a day is not bad at all. But we still need even newer drugs. Some of us become resistant to or intolerant to the new drugs and will need more options.

There is reason to hope for all as there are a number of new drugs with real potential to fill treatment gaps being tested in clinical trials now.

[Reetywell71 in reply to cajunjeff]

Thanks Jeff. I will sit tight and ask questions as I always do. I’ve had an intense curiosity since a child and always want answers, but I also need to trust the experts too. Thanks to this forum I can get many questions answered by real people who are living with CLL 😉