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CLL Support Association
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How soon did Ibrutinib work for you?

My husband is on his 21st day of Ibrutinib, and his lymphocytes are still very high....89%, but his neutrophils did rise to 1.2 this week....and his platelets went to 125. (Still low.) He is still neutropenic, but it is better than the .3 he was about a month ago. When did your numbers go into the more normal range?

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That’s quite common... absolute lymphocyte count [ALC] rises in about 70% of patients and then begins to fall slowly... as the nodes are cleared.

Imbruvica (ibrutinib) is quite slow working on clearing the bone marrow, so it may take several months, for things to normalize.

Don’t use percents the will steer you wrong, use the absolute counts... often they have the # symbol.. like lymph # neuts # etc.

~chris

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Neutrophils were 1.2 and lymphocytes were 17.2 ( normal is .9 to 3.5. ) WBC is 19.3------has risen for the past 2 weeks from 4.7 Thanks for the encouragement about being patient....

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agreed

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My levels kept going up, up, up for 4.5 months after starting Ibrutinib, then slowly going down. They are still higher than when I first started (!), which was nearly two years ago, but enlarged lymph nodes in my neck slimmed down.

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Imbruvica shrank my neck node within 2 days.

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Rock n roll!

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Hi Ron!😊

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I think the neck nodes shrunk down within two weeks. I still have one pesky little lump which I'm told might be "scar tissue." It's the original lump that I first noticed before I ever had a diagnosis, and it was the first lump I felt when I relapsed after FCR chemo.

I read somewhere that if your blood levels go whacko on Ibrutinib and then slowly return to normal....that the longer this process takes, the better. For my sake I hope that's true, but everybody is so different with this darn thing.

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Wow! We have something in common. For me it was a left neck node and after I relapsed post FCR WAS the same stubborn node. Sometimes it’s senditve depending on the weather. It flips me out as I think I am relapsing again but so far so good ..

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Thanks for that little snippet Randy.

I always have 1 little node that never completely goes. One way that I know it's raising its head again apart from the obvious! It starts swelling up again.

Darn disease is the polite word.

Think I'm reacting same as you.

Keep well.

Sue

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Did u start the once daily blister pack? I am tired of swallowing 3 capsules per day

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I still have about 4 or 5 more weeks of the triple capsules before I switch to the single tablets. The best thing about the tablets for me (since I have the medication FedEx'd every month from the USA to Tokyo) is that they can be sent in a FedEx Envelope instead of a FedEx Pak, so my shipping bills will be reduced. I still pay more to FedEx than I do for Imbruvica with my insurance co-pay!

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That’s really funny. I have 4 weeks left but no idea of my doc will prescribe the new pills. Will see him in 3 weeks. I don’t pay for it. Canada has free medical care.

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I'm moving to Canada! (LOL)

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Welcome to Canada 🇨🇦!

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In my case Canada did not pay for my imbruvica. I have had prior chemo/rad for coloncancer and my oncologist/hemo agreed that chemo was not a good thing for me. I did apply to OHIP to pay for the Imbruvica but was declined because I was not considered "first line". Happy ending is that my insurance company agreed to pay 80 percent and the additional 20 is being covered by drug company. Canadian medical system is good, I have had excellent care. However, getting the newest and best (expensive) drugs is not always a possibility. Best to have additional insurance if you live in Canada :-)

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Here in Montreal it’s the RAMQ THAT PAYS! I don’t have private insurance. Am blessed to be living here ... but at the medical conference they had about me they suggested a BMT but my oncologist is against it.

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OHIP will only pay for imbruvica if your first line joyce?

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I had a bulky CLL and Imbruvica reduced all the nodes within the first week. My numbers at the time of the treatment were OK.

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It sounds as though everything is going in the right direction Kathy. Don't focus on the lymphs, they will come down slowly as Chris has said and a persistent lymphocytosis is not reported to be a negative prognostic factor.

I had rituximab monthly for the first 6 months which meant my lymphs came down quickly to less than 20 having been more than 300 to start with (and with a 9cm LN mass in my abdo). It took nearly 18 months for my lymphs to be in the normal range but the CLL cells were still there at 1.2%. I had the MRD testing done this month, hoping for good news after 2.5 years.

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Fingers and toes crossed for a great result Jm! 😊

Newdawn

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thanks jm954, I will hope that your MRD test is good news....my husband did not have huge masses anywhere....but things were headed in that direction....his spleen was enlarged, and after 4 infusions with BR his neck nodes were very small, He has been neutropenic for going on 4 months and his platelets were crashing, which is why they determined no more chemo. and went to Imbruvica. We are just hoping he can get back to a normal existence where we could actually go out to dinner or to a movie...With 10 inches of April snow, we both have cabin fever!!

Glad to hear that a persistent lymphocytosis is not reported to be a negative prognostic factor.....we need some good news!!!

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Hi Kathy

Better news about the neutrofils.

Sue

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I had nodes everywhere! 2013 they were around the Peritoneal and when I relapsed around the pelvis. My last PET scan was 2016 .. my doc is not strong on scans nor bone marrow biopsies.

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Hi. Could you tell me the name of your ONCO. I had 8 scans this year. He is also pushing BMT. I live in Montreal as well.

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Get a referral to the Montreal Jewish... I sent Lola there many years ago. They have a number of CLL doctors and are running trials and research and have advanced genetic testing...

Welcome from Ottawa, we have a great team here as well.., but cross province access is a issue. ☹️

~chris

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Can’t thank u enough Chris!! Am here now!!

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Didn't mean to speak for you.. 🗣 just passing on information...

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I am 20 months and my level are not in normal range as of yet. But they are a WHOLE LOT BETTER than 20 months ago.

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Been on Imbruvica a little over a year. Nodes in neck and under arms came down with a week or two. I had many internal nodes. Have not had another CT at this point, but I have to assume they are down too. I did not have the spike in ALC counts that many experience. All blood work has been steadily improving and everything is in normal or almost normal ranges now. All this with hardly any side effects. I am very pleased.

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When I started on Ibrutinib my counts continued to increase. In fact after 3 months they were still high until I started on Venetoclax. Then they came falling down rapidly. But they told me to expect them to rise before they started going down. My lymph nodes disappeared within a week however so it was working.

Paula

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Where do you live? In Canada or the US. Are you on a clinical trial with Venetoclax?

Do you or did you have any side effect on Venetoclax?

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Been on Imbruvica a little over a year. Nodes in neck and under arms came down with a week or two. I had many internal nodes. I did not have the spike in ALC counts that many experience. My energy level improved drastically. I still have times I get fatigued mostly in the afternoon. All blood work has been steadily improving and everything is in normal or almost normal ranges now. No major side effects. I am very blessed that I have had so much improvement to my quality of life.

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Everyone is different. Be patient it will happen.

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4-5 months and saw first drop. Got up as high as 190. and now down to 25. in one year

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Imbruvica shrunk my cervicale nodes within 3 days.

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How I look forward to these rotten nodes shrinking by whatever means I’m offered!

Great to hear the rapid impact of Ibrutinib on the swollen nodes from everyone.

Newdawn

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Hi Dawn!

Was actually thinking of you and hope u start treatment to shrink the nodes. ..

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Me too Lola, thanks! It’s no fun having a second jaw! 🥵

Newdawn

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I feel you really!

I had no jaw!

praying 2019 is the year for you! 🌸

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