Neutrophiles

[grazia50]

Since 2019 i am treated with ibrutinib, with very good results up to now. Today I got the results of my last check. Neutrophiles are close to zero, and I am concerned because I think it could be effect of Ibrutinib. Do You have any opinion or experience of such effect? Thanks a lot for your suggestions.

[Sepsur]

whenever my neutrophils hit the floor - I was put on a week of daily GSCF injections into the stomach - not a joy but highly affective for me

[grazia50 in reply to Sepsur]

Thanks for your reply. Is Your CLL treated with ibrutinib? Could be that the floor condition is an effect of Ibrutinib in your opinion?

[HopeME in reply to grazia50]

Hi Grazia50:

Unfortunately, what you are experiencing is a common side effect of all CLL treatments. CLL itself can also put pressure on neutrophils as it progresses. That is the bad news. The good news, as Sepsur notes, is that the problem can be managed with GSCF injections. Be careful while your neutrophils are under pressure with your diet and watch for potential infections from cuts and airborne viruses, etc. The condition is very manageable and it should improve. You will get through this period but be careful until you see your doctor.

Best,

Mark

[Sepsur in reply to grazia50]

I honestly don’t know but I was on ibrutinib & Venetoclax at the time

[JigFettler Volunteer]

If your neutrophils are nearly ZERO, you must speak to your Family Doctor and your Haematology Team, if you have not already.

Infection risk is increased.

Jig

[grazia50]

Thanks, I will repeat blood check tomorrow. I am so concerned, also because my immunoglobuline are very low too. I appreciate a lot your support !

[LynnB1947]

After 3 months on IBR, I had low neutrophils. Dr prescribed 3 neupgen injections & my neutrophils rebounded. I continued on IBR for 9 years with no further problems. Now on a drug holiday ...

[Yuck in reply to LynnB1947]

Outstanding! I hope you get many drug free years!

[LynnB1947 in reply to Yuck]

Just taking it a day at a time. BMB showed 5% bone marrow involvement. I see my doctor in July & we'll see what he says at that time. It all depends on how quickly the SLL returns. Right now, I'm seeing the doctor at 4 month intervals. My doctor said that my drug holiday might last several years.

[Justasheet1 in reply to LynnB1947]

Lynn,

My doctor told me “if it ain’t broke don’t fix it.” Why after 9 years are you taking a drug holiday?

Jeff

[LynnB1947 in reply to Justasheet1]

Jeff - My doctor at MDA was content to continue on IBR but my new doctor at UTSW is making changes. I have progressive idiopathic pulmonary fibrosis (IPF) which mean lung problems from an unknown cause, and they are trying to put the brakes on that. At 75, I'm ramping up on Esbriet which is a new drug for IPF. Since some folks have problems with a-fib when taking Ibrutinib, I'm also getting checked out by the heart doctors, too. Just guessing but I think O+V may be in my future. We shall see. In the meantime, each day is a blessing.

Lynn

[Justasheet1 in reply to LynnB1947]

Lynn,

I understand now. Did you consider a more targeted BTK perhaps or they are trying the process of elimination all together.

I’m wishing you the best my friend.

Jeff

[LynnB1947 in reply to Justasheet1]

Jeff - My next SLL treatment is a guess on my part. I am not opposed to trying one of the new fine-tuned BTK inhibitors as I had such a steady 9 years with Ibrutinib. I am also open to trying fixed duration treatment. When the time comes, we'll see what my specialist says. My preference? I'd like to try fixed-duration.

Lynn

[Yuck in reply to LynnB1947]

Oh, I wish you the best! No treatment means better results from the bivalent booster and other vaccines. Good luck!

[rubberlegs68]

I have had low neutrophils a couple of times while on ibrutinib and with each episode my doctor has lessened my dose and that seemed to work. I have been on 140mg of ibrutinib for a few years now.