Can I stop medication?

[tedrog]

If I were to start taking Ibrutinib, or Dasatinib, xxxtinib... say for 6 months, and I decided to stop (arbitrarily decided) ... would I have made myself worse... than had I waited, say, 6 months?

no symptoms or very slight, WW 4.5 years. 64 yo.

I don't mean whether or not one is required to taper off or stop abruptly, i mean ^^^ in the long run.

Can you stop and start? without speeding the cancer faster than it was previously becoming more dangerous?

[AussieNeil Administrator]

Stopping Ibrutinib after a relatively short period, such as 6 months, tends to result in poorer outcomes in CLL. It's a serious problem that specialists don't yet know how to counter: healthunlocked.com/cllsuppo.... You have the added complication of concurrent CML. I would advise against stopping any treatment course for your CLL or CML without professional input from a specialist who is best able to evaluate if this is the right course for you. It may be possible after several years if a sufficiently deep remission is obtained, but that data is still accumulating.

[tedrog in reply to AussieNeil]

agreed.

Thanks Neil.

[Jm954 Administrator]

Hiya,

You should never stop your medication for either CML or CLL without discussing it with your Dr. However, with CML, if you achieve a 'major molecular response' by PCR then, if that continues, patients are stopping their TKI treatments but continuing to have regular monitoring of their bcr-abl transcripts by PCR.

Many patients stay in full molecular remission off treatment and some relapse so go back onto it. There are now some characteristics/criteria which are reasonably predictive of whether you would stay in remission after stopping your TKI.

The same is not true for CLL with the BTKs at the moment as there is too little experience and a lack of maturity of data for CLL patients and very few achieve full MRD negative remission.

I'm not sure what the side effect profile would be like with taking two kinase inhibitors, perhaps something to ask your Dr when the CLL treatment time gets near.

best wishes

[tedrog in reply to Jm954]

You're certainly very well informed.

Thank you.

One last bit... oops, i think you answered it already:

I can't wait & watch at 2%? platelets, hemoglobin, all good -- but not the basiophils (sp) and einsiophils (sp) and all those ones, all high. like 3 to 6.

LDH high.

wbc last december 168; 160 8 weeks ago; 19x now. not sure why matters much. i heard it could way higher.

Say, might I "feel" when these numbers come down?

THANK YOU, Jm954. ❤️

[Jm954 Administrator in reply to tedrog]

No, no waiting with CML because it could transform into an aggressive phase at any time. You want at least a three log reduction in your transcripts from your starting point of 1.0 (representing 100%).

Have a look at this: academic.oup.com/annonc/art...

Article on stopping TKIs: ncbi.nlm.nih.gov/pmc/articl...

There's no limit to how high your wbc could go. I've seen blood samples with wbc of > 800 and when the samples settle in the blood tube then you can see a red layer of red cells, then a white 3-5mm layer of wbc and then the plasma on the top. Normally you can't see the wbc at all. It's fascinating to see.

CML is a really interesting leukaemia in it's natural history, aetiology and treatment.

[tedrog in reply to Jm954]

Wow, thanks Jm954.

This is great, you guys are awesome.

Then I will take the Sprycel starting tomorrow. Already started Allopurinol.

After I sleep today!!! I'll try to post my BMB without any names.

I wonder, you seem so knowledable... I'm 64, veteran, no fool.., I wonder might I email it to you?

(email address removed - Admin)

Just for ... no expectations. And no, I do nothing before consultation. I posed my question the way I did, because I didn't want start... and WHAT IF i decided to stop.

I got it now. Very curious what someone like yourself might see in my chart -- it's ALL in one report, everything.

No worries! You've already helped SO MUCH.

[AussieNeil Administrator in reply to tedrog]

Please use the Private Messaging/Chat facility provided by this site to maintain your privacy: support.healthunlocked.com/...

[Jm954 Administrator in reply to tedrog]

You can edit your personal details and post as a picture but you’d need to start a new post. Happy to look at it

[tedrog in reply to Jm954]

yes, I've done that before. :))

I also have it online, a link.

Let me know if you'd like to see it.

Best Regards, Jm954 ☘️