rollercoaster results

[Ukuleleboy1]

I’m being treated with Ibrutinib and ventoclax. Since ramping up I’ve had two episodes of neutropenia which I am responding with pausing treatment and subcutaneous injections.

one or two injections does the trick

I’m feeling a bit low and it seems to me that this stop go situation may well be an ongoing feature of my remaining eight months of treatment.

Is this a common/shared situation

Martin

[Poodle2]

Hey Martin, sorry to hear how you are feeling. About 50% patients on V experience neutropenia. I was on O+V and needed regular GCSF injections throughout my whole treatment. It sucks but I learnt to manage my risks, took my injections and stayed mostly well. One month after I took my last V pill, my neutrophils were in a normal range and have been there since. Try to focus on the positives, how are your other numbers doing? It will be all worth it at the end. Stay strong.

[AussieNeil Partner Administrator]

Martin,

All CLL treatments come with the risk of neutropenia and venetoclax is a very effective drug, with a correspondingly higher risk of neutropenia. It takes some time for the bone marrow to heal as the CLL infiltration is removed, so that it can again make around 100 billion neutrophils you need daily, to protect against infection. There's a fair bit about how to safely live with neutropenia towards the end of this post: healthunlocked.com/cllsuppo...

I get how worrying it is to live with the uncertainty of when neutropenia will again strike. Not long after I started treatment with acalabrutinib (a second generation version of ibrutinib), I was in hospital with febrile neutropenia, having daily blood tests and daily G-CSF shots. My commencement on obinutuzumab (added to acalabrutinib in an A+V+O clinical trial), was delayed, hoping my fever would break, before my medical team eventually cleared it with the overseas trial management to give me the first of 9 obinutuzumab infusions. I actually breezed through the venetoclax ramp-up with no need to pause infusions or slow the venetoclax ramp-up. Meanwhile, I was able to extend my time between G-CSF shots and go from daily to 3 blood tests per week, to recently 6 months between blood tests. I had my last G-CSF injection 6 months after starting treatment.

You are likely to get more replies from others who have had your treatment if you lock your post as explained in replies to the link below and modify your title to something like 'Rollercoaster results - does the incidence of neutropenia reduce during V+I treatment?' or such

healthunlocked.com/cllsuppo...

Neil

[jerryjerry]

I had the same treatment about six years ago. During the ramp up of venetoclax, my neutrophils when down to almost none. I paused treatment for a week and had three injections. That was the end of my neutropenia problem. There were lots of side effects that were mostly treatable. After fifteen months, treatment ended with MRD-. Today all of my blood work is normal and I get it tested every three months. I hope it works as well for you and everyone else.

[Indolent]

I was on a similar drug combo and also had episodes of neutropenia. My doctor paused the medications in order to allow recovery and then went forward on reduced dosages. This occurred a couple of times and finally I was able to settle on a stable dosages. In the end, it was two years of treatment and MRD negative was the result. The moral of the story is, "one size does not fit all." Maybe this is something to discuss with your doctor.

[Mystic75]

If you lock your post, I'll be able to comment. Thanks!