Stopping Ibrutinib?

[kathymac52]

Husband has been on Ibrutinib for 2 years and numbers were good until about 4 months when his WBC and Neutrophils dropped dramatically. WBC is now 2.2 and neutrophils are .8. Doctor suspended his meds for a week because he is concerned about COVID-19. I am worried that the CLL will roar back. He will get new labs in a week and determine if this why the numbers dropped. All other numbers are good including lymphycites and LDH. His vitals are great and he has no fever or infections. Can other meds cause neutropenia like Acyclovir or Bactrim?? He is 11q deleted and unmutated. Does this look like Ibrutinib is not working?

[cajunjeff]

Kathy with low wbc and neutrophils like that I would think it more a case of the ibrutinib working too well instead of not working. The ibrutinib might be putting too much pressure on his healthy white blood cells (neutrophils are white blood cells too).

I think his doctor is balancing the benefit of continuing ibrutinib vs the risk of his immune system getting too depleted and creating an infection risk.

My guess is they will do more frequent labs and restart ibrutinib once his wbc and neytrophils have recovered, but that's just a guess.

I hope it works out, adjusting and recalibrating our meds now and then is part of the deal with cll. Hopefully his numbers bounce back quickly, getting off ibrutinib for a week or two is no big deal.

[Jm954 Administrator]

You said before that his neutrophils really dropped when he was on BR and didn't recover for 5 months after it was stopped.

I hope they rise again soon but if not, it's possible that your husband might need a bone marrow to see what's going on. It could be that they are just about staying in the normal range when everything is OK but when there's a bit of pressure such as an infection, that they can't cope and take a while to recover again.

I hope this is just a little blip on the road to being well again.

Let us know how he is

Jackie

[Sojomama13]

Hi Kathymac52,

On my last visit, my wbc really plummeted. I was given a shot of neulasta (I think that is the spelling). My white blood count had been steady and in normal range for some time. It was explained to me at the start of my clinical trial that this can happen.

All the best,

Sandy

[kathymac52 in reply to Sojomama13]

Thanks Sandy....didn't think about this option. Pete got a shot after his BR chemo, and it helped for one month....We will ask the Doctor about that....(It was explained to us that is an artificial spike, and that his bone marrow was not producing what it should.)

[Sojomama13]

Also, I was told to continue taking Claritin to help alleviate large bone pain. Yes, the same Claritin that is taken for allergy. I have had very minimal pain.

All the best,

Sandy