How to tell if Ibutinib is working?: I started... - CLL Support

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How to tell if Ibutinib is working?

Tapps profile image

I started my first Ibutinib pill July, 01, 2020

Going for tests every three weeks. Doctor said just do one day at a time! My thoughts are running with that, I know I’m over thinking.

But still, it’s keeping me up. Is the Drug doing it’s job?

13 Replies

If you have a bulky disease like I had you should see the result in a week. Imbruvica was my first treatment.

AussieNeil profile image
AussieNeilAdministrator

Do you have any blood tests you can compare with earlier results? Any nodes you can feel for changes?

Neil

Tapps profile image
Tapps in reply to AussieNeil

Yes, save all of my labs. No bulky nodes.

dx, in 2012, treatment with GAZYVA in 2015.. Labs were going the wrong direction. New on Ibutinib.

IgVh Unmutated. 17 p negative

AussieNeil profile image
AussieNeilAdministrator in reply to Tapps

Look for improvements in your haemoglobin and platelets, perhaps after a drop in your platelets. Don't be surprised to see your lymphocyte count jump by 50% or more for a few months.

AdrianUK profile image
AdrianUK in reply to Tapps

Just to make sure you understand what Neil said, your first few months the lymphocyte count might actually go UP and that would also be a sign it’s working as it drives the cells out of the lymph nodes and other hiding places into the blood. In the blood they can’t multiply by they can die. So over time it drops. Some people do see their count go down early on but more typically the pattern is for it to go up as mentioned early on so do not be alarmed if you see that!

Ibrutinib is a very effective drug and "works" on pretty much everybody in terms of reducing lymph nodes and restoring proper blood levels on everything. So suspect it is working for you in terms of what it's doing to the CLL. Side effects are a different matter. Some people have a lot, others have very few, I scarcely knew I was taking a drug the whole time on ibrutiib... except for the afib. which is serious issue, so i was moved to venetoclax.

If this helps, my WBC was 175,000 five weeks ago and now 68,000. (I've been on it a month). My spleen has shrunk a great deal as well. Docs can feel it but I no longer can. I had labs every week my first month and now this second, every other week. My CLL specialist and/or team phoned me every week as well my first month and she insisted I see her after one month which I just did. They are monitoring me closely but she is very pleased with the results in just one month!

Hi. As your doctor says "One day at a time". In time I am sure that you will feel the benefits. Imbruvica has been a game changer for me. Best wishes.

if you lymhpocitosys has raisen a lot in your labs , and your lymph nodes begin to shrink it is working....

I started Ibrutinib in September 2018 and it didn’t kick in until Jan the following year. It’s now doing what it’s supposed to. Have patience with the drug as it works differently for some of us 😀

Taps I totally feel where you are coming from. I am on week 3. My doctor has me testing every week So far I have seen a huge rise in my wbc which I have been told is normal. I’m hoping to start seeing wbc come down and platelets go up.

I have also noticed that most of my lymphnodes have gone down tremendously.

Good luck, stay positive, and Remember stressing over it will not help. Sometimes we need to be patient.

It took about 5 months before Imbruvica showed signs that it was working for me. That was over 4 years ago and still going strong.

Thank you for your reply 😊

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