Need help with medicine

[allenmannello]

I've been taking IMBRUVICA for over 2 months for my CLL and its not working should I keep taking it?

[AussieNeil Partner Administrator]

Ibrutinib is slow acting. What do you mean by "It's not working"? In about 2/3 of those on Ibrutinib, the lymphocyte count climbs significantly before eventually coming down. Early on in the use of Ibrutinib, that has resulted in doctors not familiar with that effect to panic and stop treatment, but I would hope that this no longer happens.

Do you have comparison blood tests from before treatment and recently? I'd be interested in whether your lymphocyte, neutrophil, platelet and haemoglobin counts have changed.

Neil

[allenmannello in reply to AussieNeil]

Yes I have blood test every 2weeks in first 2 weeks it did go up from 213 to 253 its now 2 1/2 months and its still at 253 the doctor knew about the fact that it would spike in the beginning but he thinks it should be going down by now. And thinks I should have chemo. But all I have is Medicare and can't afford it . I don't know what to do.I'm hoping that the IMBRUVICA will work maybe it takes longer for some people that why I'm on here. Thank you for trying to help me.

[PlanetaryKim in reply to allenmannello]

Are you on 3 pills a day? (420 mg)

Is there any possibility you are taking any other drug or herb that induces CYP3A4 - the liver enzyme that metabolizes Ibrutinib? Because if it is metabolized too quickly, you would not be getting the full effect of ibrutinib. St. John's Wort, Gingko, Valerian, curcumin, for example?

How are you other blood numbers besides your lymphocytes? Hemoglobin, Platelets, Neutrophils? Have those items improved in your 2 1/2 months. All 3 did improve markedly for me in my first 2 1/2 months on ibrutinib.

Keep us posted!

kim

[allenmannello in reply to PlanetaryKim]

420 is what I take I do take other pills like flomax and tasteride I have an enlarge prostate also take something for Urick acid

[allenmannello in reply to PlanetaryKim]

Thank you for helping me

[PlanetaryKim in reply to allenmannello]

Good luck to you Allen! As others here have pointed out, there seems to be a lot of individual variation on how quickly each person responds to Ibrutinib. Are you seeing a CLL specialist? That's always best for this - better than a local hematologist, for example, who treats all blood disorders but may not be that familiar with CLL and the new drugs for it.

kim

[AussieNeil Partner Administrator in reply to allenmannello]

Ibrutinib is working for you. Prolonged Lymphocytosis (lymphocyte count not resolved to at least 50% of the pretreatment count within 12 months), is actually a favourable prognostic factor: bloodjournal.org/content/12... You just need more time.

Whatever you do, don't change tour treatment without seeking a second opinion from someone more familiar with how Ibrutinib works than your current doctor.

Neil

[allenmannello]

Thank you I will I'm taking 420mg

[caven]

Here's my two cents.

Help from your friends at UH-CLL can be a wonderful support and sometimes a first-guide to practices that can make life living with CLL an easier experience. However, never imagine that anything you read on this blog can ever substitute for the expert advice of your CLL specialist, or even your GP. Members of this blog are always laypeople unless they qualify themselves differently. It is clear that some CLL specialists lurk in the background so as to learn what it is that CLL-people are discussing among themselves. But none of them would venture to offer observations here on another professional's medical regimens, treatment advice, and certainly not to opine that it is time to stop treatment. Such decisions should exclusively be in the realm of the CLL person's medical specialist in consultation with the affected person.

This is the right place to access ideas, emotional support, calls for lobbying activities, suggestions for alleviating side effects, hints about data interpretation, a 'first-look' at upcoming treatments, and a variety of wild ideas & speculations that have yet to be tested. But this is not a forum for identifying when, what, and how treatment should be initiated or discontinued.

Please talk to your medical specialist and don't make any treatment changes based on responses within this forum. Good luck with your CLL-journey.

Caven

[PaulaS Volunteer]

It was nearly 3 months after I'd started Ibrutinib, before my lymphocyte count started to come down, and then only slightly. By 4 or 5 months it was dropping in larger numbers. Seems people are very variable..

[allenmannello]

That's very helpful thank you.

[Cllcanada Top Poster CURE Hero in reply to allenmannello]

I agree with others, it can taken 3-4 maybe 5 months in a few cases for the counts to fall. B cells are dying so stay well hydrated, but they are being replaced my others from the nodes and spleen etc... so the count remains elevated... give it time...

~chris

[allenmannello]

Thank you Chris

[pkpayne]

Allen I'm on Ibrutinib and at 3 months my counts were still high. I think I was just one of those that it took longer to do its job. I agree that I wouldn't stop taking it without a second opinion from a CLL specialist.

Paula

[Lola69]

Hi! Imbruvica saved my life.went from platelets 33 to 110 now. Took about 1.5 years