My husband is in hospital after endless coughing than fever showed RSV virus and a bit of pneumonia in one lung. He's been anemic for months (very low platelets, HGB and red cells) while transitioning to Venetoclax/Gazyva combo since after Christmas. After 4 units of blood this weekend his HGB finally raised to 9 from 5 but white cell count is .5 when yesterday it was .9. So it's been dropping and I am concerned so is doctor. His oncologist said the disease is causing the drop and the drugs should get his CLL under control, then white cells will raise. He's in neutropenic room now and is very vulnerable to all germs. Has anyone experienced very low white cell counts? How low until a medication boost is needed? How long is it until Venetaclax starts to kick in, or is it very individual I ask? He is on his 2nd week of it.
Critically low white cell count: My husband is... - CLL Support
Critically low white cell count
Many of us go through this stage (Neutropenia) during treatment and it can be managed by giving G-CSF injections, typically into the subcutaneous layer of skin over the stomach. Your husband's doctor will be monitoring his neutrophil count - that part of his white cell count responsible for protecting us primarily from bacteria and fungi. Ideally it needs to be above 1.5, but above 1.0 should help prevent him from developing febrile neutropenia.
Read the section about Neutropenia towards the end of this post.
healthunlocked.com/cllsuppo...
I was having G-CSF injections daily last year to manage my neutropenia. Now that treatment (Acalabrutinib and Gazya) has started to clear out my bone marrow CLL infiltration, I haven't had one in two weeks. Venetoclax is a very powerful drug that does have this side effect of potentially causing neutropenia, as do all CLL drugs to some degree. I'm starting my ramp up today, so I might be learning from your husband's experience!
Neil
Thank you Neil for this information, very helpful. Good luck with starting your treatment!
Anavadya
Good luck on the ramp -up....
Thinking of you and wishing you an easy time ...
Be Well!
Typical Aussie!
Personally in treatment but still willing to give others the benefit of experience - well done mate hope all goes well!
Hi Neil. I know this is an older post, but I would like to know what the difference is between the Gazya and the Venetoclax. My Neutophils are down to 1.0 and I go to see my doc on Monday. He has been hinting a great deal of starting me on V. since my white count is still in the 200,000 and not going down. Would Gazya be a better choice than the Ven?? Thanks for any help on this issue.
It would be more appropriate to write a new post than ask here, so you'll get answers specific to your question that others can later find. The parent post was about the Venetoclax/Gazyva combo, which is what I had, plus Acalabrutinib. You've had Ibrutinib, then Acalabrutinib (both BTK inhibitors), so really your question is which is the best drug to take in addition to a BTK inhibitor.
Venetoclax is a BCL-2 inhibitor and Gazyva a CD20 monoclonal antibody, so they work in different ways. Also, Gazyva is given by an infusion, which takes the best part of a day and means a hospital outpatient visit. Venetoclax is an oral drug, with the possible need for hospital attendance and possibly admission during ramp-up, depending on tumour burden. A lymphocyte count of 200,000 is a reasonably high tumour burden, but if you don't have much of a tumour burden in your nodes, spleen and bone marrow, the Venetoclax ramp up may get your tumour burden low enough so that your risk of Tumour Lysis Syndrome is low enough for you to avoid hospital observation.
There is also the risk of worsening your neutropenia, with both drugs likely to do this, Venetoclax more so. That can be managed with Venetoclax by extending the ramp up process and or using G-CSF injections. Likewise with Gazyva, you could extend the time to the next infusion, but you are still likely to hit a low point with neutropenia about 3 weeks after the infusion and are likely to need a G-CSF injection. That's low risk - I've had about 200 G--CSF injections, but you do need to have regular blood tests (I was having them twice a week), so you know when you need to be extra careful infection wise and when you'll probably need G-CSF shots to boost your neutrophils sufficiently to prepare you for the impact of the next Gazyva infusion or Venetoclax ramp-up.
As you can see, it's not a simple answer which is best. In terms of reaching uMRD, I'd recommend Venetoclax, but we are all different in how our CLL responds to different drugs. At least from the above, you have some considerations to think through and questions arising that you can put to your doctor to work through what's best for you.
Neil
Yes nuetropenia is common when under treatment and your husbands medics will be keeping a check on his counts as Neil explained.
Like others I received Injections to improve my nuets as they dropped to 0.1 at one stage but slowly recovered.
It’s a difficult time for you both Anavadya but the only consolation is that your husband is being looked after expertly.
Wishing you both well!
Geoff
Thank you Geoff, yesterday the dr said they saw as low as 0.1 with a patient, and I assumed that meant they were on their deathbed! So hearing that you recovered from such a low level is reassuring. Today drs. are going into his lungs to test whether it is bacterial or fungal. I found out he can't receive a white cell booster as long as he's on Venetoclax, so they need to address the lung infection first.
I guess your medics are correct if you think about it!
Venetoclax is designed to cause death of the white blood cells in order to clear cll. I understand it can first cause an increase then controls them over time.
GCSF is designed to increase neutrophils so has the opposite effect of Venetoclax on this type of cell. It would be counter productive to have two types of medication fighting each other.
As far as nuetropenia at 0.1 is concerned the only problem is the patient needs neutrophils to fight infection. Obviously antibiotics can help with this . I guess from your post that the medics want to know what is causing the infection to ensure the correct medication is prescribed to assist your husbands recovery.
Wishing you both well and that he gets well soon.
Remember you are not alone when part of this community!
Geoff
Geoff, your note about one med countering another raises an issue I recently dealt with. I had bronchitis while on Venetoclax and was wondering whether I needed to reduce or stop Venetoclax, which lowers WBC, while my natural defenses were trying to attack the infection by increasing WBC.
Since I was between Onc appointments I continued Venetoclax while taking antibiotics and slowly defeated the infection. I was wondering what others have done under similar circumstances.
Dennis, 73, Venetoclax
Dennis
Great to hear you were successful in fighting off the infection well done!
Your post brings up a pet subject of mine of which I have been extremely vocal.
Us cllers must be our own advocates! We deserve and should demand a holistic treatment from our medics, many of whom forget we are individuals rather than a cll patient. What I mean is that we should all communicate with our medics as individuals. If we have a problem, be it physically or mentally in respect of our cll we should contact our medics and ask the questions!
In your post you mentioned you were between appointments. In my view this shouldn’t matter. If we have a concern or a problem contact with our medics is essential. I learned this early on in my journey when another cll patient whom I was acquainted with passed away with neutropenic sepsis because they did not report high temperatures and other symptoms because they were not due to see medics for another few weeks and didn’t want to bother them! Had they done so in good time they would have treated and still been around!
We have to remember that all of us no matter what stage in the journey we are at have a condition that affects our immune systems in a detrimental way.
I’m fortunate that my team have supplied direct numbers to a specialist nurse practitioner expert in cll. So any problems I’m on the phone. My team encourage contact they say better safe than sorry and never complain about contact from a concerned patient.
Having recently had a heart valve replacement my haematology team worked alongside my cardiologist to advise and answer any questions to ensure everything was covered. Resulting in a successful journey during that little challenge!
I’m not criticising your successful episode, by the way. Just want to ensure my co cllers understand they have a major part to play in their journey with this condition.
Best wishes.
My neutrophils dropped to 0.5 when taking Obinutuzumab and after stopping treatment for two months crawled to 0.9 It took almost 9 months to get them to 1.3,
But now they are 3.8 👍🏻
Hopefully, they will sort this out for your husband and Venetoclax will work perfect for him 🙏🏻
Dana
Thank you Dana, it probably depends on age as well to see how long it takes for levels to rise.
Hi. I do not have CLL but I do have MDS/borderline AML. I have been on Vidaza infusions 5 days in a row every 28 days for the past 3 years. My counts have dropped over the past 6 months. My WBC are consistently between .3 and .5 and my neutrophils .2 -.3. My HG has been between 6.3 (requiring tranfusions) and 8.0 and my platelets are below 20. My specialist has added Veneteclax to my infusions 2 weeks ago. I ramped up from 100mg to 400mg but then backed down to 200mg because of an interaction with an anti-fungal, Fluconosole. I am due next week for a BMB to evaluate this first cycle of Veneteclax.
Interestingly, other that low counts, I have not had any episodes of bleeding nor have I experienced any significant fatigue. I have had a couple of transfusions since starting the Venetoclax when my Hg dropped below 7. Even with these low counts I have not yet been plagued with neutropenic fever.... I guess I'm lucky. My concern is that even with CBC's 2x a week I am not sure that my Onc is as actively monitoring my situation as well as I'd like and am concerned about the Veneteclax working too well.
I've got
Hi Cliffsails , how are you doing now ??? blessings , james
My husband has just been taken off of Veneteclax to receive a white cell booster today. He is also on an antifungal for his pneumonia. With multiple things going on it's hard for the drs to pinpoint....but the root seems to be the CLL, yet the veneteclax lowers white cells. Whether he'll be put back on, don't know. In his abdomen he has multiple lymph nodes swelling up bunched together the size of his liver, that are pressing on kidneys and ureter. Yet nodes in his neck has visibly shrunk. He's getting a bone marrow biopsy tomorrow too.
Are you in the hospital?
Hi,
I am not in the hospital and, in fact, I don't have CLL but rather I have MDS and seem to be transitioning to AML. I have been put on Venetoclax to keep me from getting AML. I am on a chemo drug called Vidaza and have been for over 3 years which also pushes down my blood counts. The venetoclax, in the short term, further reduces y blood counts so I am being monitored very closely with CBC's 3 times a week. I've needed one transfusion since I started the Venetoclax but now that I am in the second month of the combination of the two drugs my WBC and RBC seem to be stabilizing. I wish you the best and hope your husband responds to his treatment.
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