Imbruvica: I had been on watch n wait for about... - CLL Support

CLL Support
13,695 members21,529 posts

Imbruvica

oldguy68
oldguy68
17 Replies

I had been on watch n wait for about 5 years my white count started at 14 and then when it got the 132 I was put on imbruvica. Over a period of about six weeks my white count as of last Wednesday was 302. Have been told that the count is going to go up before it stabilizes and then comes down I find this somehow just too hard to believe that my white count has gone crazy like that since starting imbruvica. if anyone can help give me some information or opinion on this I would greatly appreciate it.

17 Replies
oldestnewest
Newdawn
NewdawnAdministrator

That’s entirely normal and to be expected. The Ibrutinib forces the cells out for the nodes etc. into the peripheral blood where it’s easier to measure hence the increase in your WBC. Mine did the same.

It shows it’s doing its job so don’t worry! It will start to come down again before long.

Newdawn

9 likes
Reply
cajunjeff

Not only is it normal, but persistent lymphocytosis with ibrutinib could arguably be a good prognosticator.

"Most interesting is the finding that patients with persistent lymphocytosis over 1 year have a similar PFS, with a trend toward a superior outcome compared with those who achieve an objective response within this time frame".

bloodjournal.org/content/12...

4 likes
Reply
IRN83

When I first started Imbruvica, my white blood count skyrocketed. This is typical. The Imbruvica caused the lymphocytes that were in my spleen and lymph nodes to be released resulting in the increase. Ultimately the count will decrease. Talk to your doctor of course.

2 likes
Reply
Ivotedfornixon

sounds normal with cll people. I have b-pll which is is the cll class but more aggressive. I was diagnosed in January 2019 and started with wbc at about 450000 and alc at about 440,000. Both numbers went up almost 50,000 each almost hitting 500,000. after 3 weeks they started a slow decline. about wbc 70,000 and alc 64,000. if you go to the imbruvica website and read it you will find mention of drastic wbc count increases because your packed lymph nodes and spleen are emptying. blood counts only measure whats in your blood not whats packed away.

Reply
oldguy68

Thanks to all of you with your comments that gave me information that I did not get from neither oncologist or the hospital. I was in my local hospital Memorial Hermann they saw that white count and a doctor came in and told me we can't do anything else for you and said I needed to go to the medical center in downtown Houston. I did go there and everybody was perplexed until finally and oncologist came in and at least explained that you do expect the white count to go up before it stabilizes. and that was the extent of it he did not go into any of the details that I have read of the responses that I got on this site. So now at least I feel a whole lot better not thinking that this is the end of the line with my white count reaching 300,000. Thank you again to all of you who responded with very helpful information.

7 likes
Reply
Njm1974

Hi oldguy,

Had the same. Prof. advised that it's a sign that IB is working.

Can I ask if you've had any sides effects or any continued B symptoms?

Good luck, stay strong!

Reply
oldguy68
oldguy68
in reply to Njm1974

No side effects at this point unless fatigue is. People's comments on this site have been so helpful compared to what you get from your doctors.

Reply
Kokobean
Kokobean
in reply to oldguy68

I agree. All the really important stuff we needed to know and questions to ask were here. Such a great bunch!

1 like
Reply
oldguy68
oldguy68
in reply to Njm1974

B symptoms?

Reply
Njm1974
Njm1974
in reply to oldguy68

Hi, yes it can be tough getting answers!

B symptoms commonly:

Fatigue

Swollen lymph nodes

Fever

Night sweats

I had the full whack. These dropped off after a week.

Started 2 months ago and a few minor bumps but blood work good.

Best of luck with the drug......

Njm

Reply
oldguy68
oldguy68
in reply to Njm1974

You say you started two months ago I'm assuming that was imbruvica? Can you tell me what your number was and when it started to go down and what did it get down to? I have not had swollen lymph nodes or night sweats the only thing is the fatigue and needing to take naps.

Reply
haposwald

Ballooning period! I had read it here first and studied up a little but it true the bad cells are building up because your body can’t get rid of them fast enough! Drink tons of water! Try and do a gallon a day mine went from 30k to125k and I as well started almost 5 months ago now. From the 125k went to close to 400k and now heading the other way back down to 140k and I feel great!! Which is the key don't sweat it my CLL brother... give it time.......

Reply
oldguy68
oldguy68
in reply to haposwald

Thank you for that positive response. There have been many that are along the lines of your comments. Oncologist explained nothing to me. I have found a new oncologist who has 30 years experience and so far she seems a whole lot better although again she did not explain anything the way you and others on this site have. Thank you for the information.

Reply
Panz

You will find if you haven’t already that this is just one super great place to come with any concerns you may have. This is a very caring community and it is here anytime. Welcome, we are very happy you found us and please drop in anytime! We all learn from each other! All the very best to you! I am have just finished my sixth month of Imbruvica 420 and I am loving it! Yes, it often comes with a few side effects but this community will address any issue you are having or they will tell you where to seek more info.

😍💕☘️🙏

Reply
oldguy68
oldguy68
in reply to Panz

Thanks for the heads up. I have been reading things on this site for silver years and this is maybe the first time I have asked any questions and again I'll say how helpful it has been to hear from so many people with the same issues. 🤗

Reply
jaysearch

Hi Oldguy:

I'm even older, and still here to tell you that as you learn, you will discover how well you know your own body. We all have our own stories, but most of them reflect the same issues. Like you, my white cell count was about 200000, and in 2 weeks after beginning Imbruvica, it went to 250000. I was lucky - my hemotologist was kind enough to warn me about the rush, so I only panicked a little. After another 3 months, it started down, and then - 2 years later, it was stopped at 19000. Now it's down to 17000. It now goes down very slowly, but still down. I have had sooo many different side effects, but it's still down, and right now that is all that matters to me. Blood issues are slowly becoming more normal. Be well - and enjoy all you can.

Reply
oldguy68

Thanks for the info, good luck to you!!

Reply

You may also like...