I was diagnosed with CLL back in Nov 2022 and was on the O&V treatment plan.
I finished the O in May 2023 but continued with the V, levofloxacin and acyclovir for the rest of the year and my blood counts were good and neutrophils count was good.
My blood tests in Dec were all normal and my oncologist had me stop the V in mid-December 2023 and the levofloxacin. I'm only taking acyclovir now.
Just had my blood test today and to my shock my WBC dropped from 4.7 in Dec to 2.0 (normal is 4.0 to 11.0) and my abs neutrophil dropped from 3.2 in Dec to 0.1 (normal is 1.6 to 8.3). The weird thing is I feel fine and have been active and doing well so this just shocked me a bit and kind of a setback because these low values are what I had a year ago! This is basically saying I'm neutropenic again!
Has anyone else experienced this and/or is this normal?
My Oncologist has not got back to me yet so I'm still in limbo as to what will happen next if anything.
Thanks for reading and any help you can provide!
Kent
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tenniselbowz
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You've experienced the well known Late Onset Neutropenia (LON) effect of anti-CD20 monoclonal antibody treatments, such as obinutuzumab and rituximab. It can happen up to a year after your last infusion, though typically it more often occurs within the first 6 months, so you've experienced this a bit later than is usual.
I'm not aware of any research into how often LON occurs with the new targeted therapy treatments, but a poster presented at ASH in December 2013 from Australian CLL FCR treatment experiences, found around a 20% incidence, which increased to around 40% if G-CSF injections were needed to boost neutrophil production during treatment. healthunlocked.com/cllsuppo...
One theory is that it occurs when your bone marrow gets busy making new B lymphocytes and it's the extra competition involved that sees a temporary drop in the billions of new neutrophils made daily. You'll need to take care to avoid infections until your neutrophil production resumes. See the section at the end of this post for a refresher on how to stay safe healthunlocked.com/cllsuppo...
Hello Neil, thank you for the information! When should I expect my neutrophil count production to increase back to normal?
Another question for you. I have also been experiencing some dizziness, imbalance when I get up and walk around etc. I dont experience it sitting or lying down. This started around October 2023 and I am wondering could this be some side effect from the V or O? Have you heard or seen anything about this? I completed the O in May of 2023 and the V in Dec 2023. My oncologist does not believe it is related to the V so could it be from the O? Can the effects be in your system for months after your last infusion?
1) There's not much published about how long LON can last and most of the research is with chemoimmunotherapy treatments of lymphoproliferative neoplasms - not just CLL. What our members have shared agrees with the highly variable length reported in the study I referenced below, that is it can last from days to months. Obinutuzumab can take several months to disappear from your system and the onset of LON can happen well after the obinutuzumab has all gone.
Febrile neutropenia was uncommon during LON and occurred in 15 patients (4.5%; rituximab (n = 14) and obinutuzumab (n = 1). These data suggest that LON after obinutuzumab treatment is as common as with rituximab.
Late-onset neutropenia after rituximab treatment: case series and comprehensive review of the literature (from 2010)
We report 6 cases of LON identified in our institution. Four patients were treated for diffuse large B-cell lymphoma, and 2 patients for follicular lymphoma. Median patient age was 68 years (range, 33-83 yr); LON appeared after a median interval of 77 days (range, 42-153 d) and lasted for a median of 5 days (range, 1-45 d).
2) With respect to the "dizziness, imbalance when I get up and walk around etc.", that sounds like Orthostatic hypotension (postural hypotension)
I'm not aware of any link with V or O. I'd recommend having your dizziness checked out with your regular doctor, because you are at an increased risk of falling and that can have very dangerous consequences. Do you have a blood pressure monitor you can use when you experience the dizziness?
My oncologist got back to me today about the sudden drop in WBC and ANC and he believes its a medication effect from the O and V. He said these medications impact the function of my bone marrow over time and potentially can cause lower bone marrow reserve. Often time alone allows your bone marrow to recover and resume producing these cells (in my case the neutrophils). This was a sudden drop so may correct itself just as quick. Of note, my lymphocytes are stable as well as my red blood cells and platelets. They scheduled another blood test next week to see where things are at and in the meantime just prescribed me an antibiotic called cefpodoxime and an antifungal fluconazole. So praying for the numbers to jump back to normal!
I did see my PCP about the dizziness and he also mentioned orthostatic hypotension but my blood pressure is normal and I am not anemic. Plus my understanding with that is its just the act of getting up quick and not getting oxygenated blood to the brain and after a bit then you are usually fine. My feeling of imbalance is there all the time when I am up and about, so I don't think it is that. I did some research and there is something called the vestibular system and crystals in your inner ear canal that helps with balance etc. If they get dislodged that can cause imbalance. So I scheduled a appt with an ENT/Neurologist to check on that. I also scheduled an appt with a cardiologist to look into the circulatory/vascular system to make sure everything is ok there too. I guess I'm just checking off boxes because I don't know what it is and it came up so quickly during my CLL treatment.
This improvement in your neutrophil count is very encouraging and hopefully means your bone marrow is recovering from the late onset neutropenia. I'd still recommend caution and confirmation from another blood test, but I expect your improvement should continue.
I just had another blood test this week and Im happy to report my WBC is in the normal range at 5.5 and my ANC is normal range at 3.8. All other counts are in normal range except Absolute Lymphocytes which always holds steady at 0.7 where normal range is 0.8 to 5.3. My oncologist doesnt seem concerned with that and has really never talked about it that much. What are your thoughts and experience on that? Is this an issue and will it eventually go up?
For the imbalance issues I was talking with you about earlier you had mentioned that there is no clinical studies showing that either the O or V could have any side effects that could cause this condition. So I saw a cardiologist and he did a blood pressure check, 12 lead EKG, and Echocardiogram and everything was normal so we can rule out any orthostatic hypotension or cardio vascular issues. Today I saw a neurologist and based on the tests he performed he believes it is consistent with a peripheral dysfunction/mild sensory neuropathy more likely than vestibular dysfunction, though both are possible. He believes it could be Chemotherapy-induced peripheral neuropathy either from the O or the V but doesn't know for sure. He did order a paraneoplastic panel blood test becuase there is clinical evidence that Paraneoplastic syndromes of the nervous system occur when cancer-fighting agents of the immune system also attack parts of the brain, spinal cord, peripheral nerves or muscle. Researchers believe that paraneoplastic syndromes are caused by cancer-fighting abilities of the immune system, particularly antibodies and certain white blood cells, known as T cells. Instead of attacking only the cancer cells, these immune system agents also attack the normal cells of the nervous system and cause neurological disorders. The blood test takes around 7 days to get the results so I will see what comes out of that and keep you posted.
Next week I see a ENT where they will do audiology test and more detailed vestibular tests I assume.
I'm just curious if any other CLL patients out there using O and V have experienced any of this imbalance caused by damage to the nervous system. I suppose anything is possible with these newer drugs and we don't know all the potential side effects.
Hi Kent and thanks for your thorough update. It's great to learn that your blood counts are all normal, with the exception of your lymphocyte count, but with the very pleasing improvement in your neutrophil count. That will give quite a few other members in similar circumstances realistic hope. I'll be interested in your update and hope that your imbalance issues soon resolve. I have heard of the occasional incidences of vertigo during treatment. I had one incident two days after my third obinutuzumab infusion - and none since.
With respect to your low lymphocyte count, mine were as low as 0.7, 3 months after I finished AVO treatment (acalabrutinib added to what you've had). My lab's reference range is 1.1 to 3.5. I was still having the occasional lowish lymphocyte counts nearly 2 years after finishing treatment. It's due not only to having near zero B lymphocytes if the CLL treatment is successful, (B cells make up around 5 to 15% of a healthy lymphocyte count), but because venetoclax can also slightly reduce the T lymphocyte count. The low count means that your adaptive immune system is less able to protect you from infections. Not only are you unlikely to produce immunoglobulins/antibodies for at least a year after your last obinutuzumab infusion, your cellular (T cell) immunity will be compromised. Therefore, I'd strongly recommend staying on an antiviral against shingles, perhaps for the rest of your life.
Given you've posted unlocked, which means that anyone with an internet connection can learn from your post, I've edited out your surname in your reply. You can leave your post open so that people experiencing similar concerns can find your post. However, if you want to make your post private to this community, this post and replies explain how to do that: healthunlocked.com/cllsuppo...
Hello tennis elbow. I am no expert, but I do think neutropenia is a common problem with V+0 therapy and that it can have a delayed onset.
Your neutrophils are quite low. That wont make you necessarily feel bad, the risk is getting a serious infection. My non expert advice is that you report this to your doc immediately and be persistent if you are not getting a response. A neutropenic infection can be very dangerous. I would take extra precaution about avoiding people until your neutrophils recover.
The simple fix, until your body recovers and starts making neutrophils on its own, is to get a neupogen injection or some similar product that boosts neutrophils temporarily. They should eventually recover.
But Im no expert for sure, so I would maybe even call the doctors nurse if you are not hearing back and ask them what precautions you should take and if you need a boost shot. It happened to me on a weekend and I had trouble getting a quick answer but finally did after being persistent.
I'm in a similar situation as you. My last Obinutuzumab infusion was in February 2023 and I completed my Venetoclax on 9/19/2023. I had a CBC test on 10/20/2023 and my neutrophils were 1.44 (just a bit below normal). My next CBC was on 12/15/2023 and, like you, I was surprised to see me neutrophils at 0.32. Subsequent neutrophil tests:
My B12 was a bit low at 210 (reference range is 232 to 1245), so they started me on B12 shots (B12 deficiency can lead to low neutrophils). I've had seven B12 shots up to this point.
I was also taking acyclovir until late November of 2023. There does seem to be some reporting on prolonged usage of acyclovir and neutropenia. Is anyone aware if this is a possibility?
Currently, I'm going in each week for a CBC and having a monthly B12 shot.
I'll be interested in seeing what you oncologist recommends.
I had LON after BR treatment. I can’t recall exactly how long it was after my last Rituximab infusion but I’d say it was 6-9months. The day I met with my doctor and found my neutrophils to be low he gave me a GSF injection and some pills (antibiotics?). That was on a Thursday and I came back the following Monday for a blood test to confirm by neutrophils rebounded which they had.
I am on V + O treatment (last O infusion was in early May 2023) and in December my neutrophils had dropped to 1.1. I’m being cautious now as I fear a repeat of what happened the first go round. The problem is since neutrophils are so short lived counts are constantly changing and it isn’t practical to test blood constantly so I’m being cautious and hope I get through the winter months unscathed.
Below is some information from a recent post Newdawn provided about what she monitors for when she suspects bacterial infections. I saved her post because it has good protocols to follow when we suspect a bacteria infection. Obviously, you don’t have any symptoms presently but it is good to keep her thoughts in mind while your neutrophils are very low:
Best,
Mark
“I don’t want to hijack Tony’s post but in that it might prove generally helpful, I’ll describe the symptoms I watch for in myself. However, I’d urge everyone to seek medical advice because it requires sputum culture, chest X-ray, and blood work to determine the dx of a bacterial v viral infection plus the individual doctor’s examination and observations.
I watch for tightness below the upper respiratory tract area and a certain tightness and sound I seem to get. I produce green or yellowish sputum from much deeper with a bacterial infection whereas presently my throat and nose are blocked and irritating in the extreme. Frankly it’s more what we’d think of as snot! (Sorry TMI)
As I’ve had bad pneumonia and sepsis, I now watch my b/p and pulse throughout the day. Personally, an elevated heart rate and reducing b/p would make me reach for help along with reduced oxygen levels. I simply began to feel dreadful when sepsis was developing and my urine output decreased but others can have differing symptoms. It needs urgent intervention.
I’d say if in any doubt, seek advice. Viral infections are wretched too and seem to last much longer. Unrelenting coughing can be hard on the heart and at the moment I’m having to hold my ribs and brace myself for the coughing fit! 🥴”
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Obinutuzumab can take several months to disappear from your system and the onset of LON can happen well after the obinutuzumab has all gone. 
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Neutrophils (again)
Living abroad a few months a year or permanent with visits back. 
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WBC and lymphocyte count
