I've been on venetoclax for about two months. I had a difficult time with the ramp up keeping all my blood counts very low. I was in the hospital 17 days. Finally I'm home and my counts look good except my white count. My hemoglobin is 12 now and platelets running over 100. The white count the other day was 1.9 and neutrophils were .87. I wanted the neulasta shot and the doctor refused saying he wouldn't give it until the count dropped to .50. I'm very nervous about catching something although I'm by myself except to have my blood checked twice a week at the infusion room at the hospital. Does the white count and neutrophils stay low throughout the whole time you take venetoclax or will they eventually come up like the hemoglobin and platelets?
Venetoclax and low white count: I've been on... - CLL Support
Venetoclax and low white count
Hi Jamstev. I just completed my venetoclax ramp-up 4 weeks ago. My neutrophils are 0.4 right now, and my specialist is temporarily halting my ventoclax for one week starting today to see if my neutrophils will recover. He did not recommend neulasta shot as first option. I think he considers that more of a last option. And so do I. There are problems and risks with using neulasta shots (or any G-CSF shots) excessively, or for some people using them at all. Best to try other approaches first.
My specialists says often a short interruption of venetoclax will be all it takes to get the neutrophils back to a better place and they will then stay there.
I understand your nervousness about catching something when you are neutropenic. I have same concern right now.
Good luck to you!
Hi Kim,
With respect to your statement "There are problems and risks with using neulasta shots (or any G-CSF shots) excessively, or for some people using them at all. Best to try other approaches first.", in particular regarding "some people using them at all". Do you have any references identifying who are these "some people" or what those lower risk other approaches may be?
I don't mean to scare, (having personally twice having needed emergency treatment as a result of inadequately managed neutropenia), but anyone with a neutrophil count below 1.0 is at increased risk of developing febrile neutropenia. That condition has an associated high risk of becoming fatal, if not brought under control through the use of IV antibiotics within hours of it developing.
Along with temporarily delaying treatment, it is also standard protocol to support patients through treatment when they develop neutropenia with the temporary use of G-CSF injections or possibly prophylactic antibiotics. No one likes to have the risk associated with taking additional drugs, but sometimes it's the lesser risk. Naturally we need to be guided by our specialists on the best course for us, as they know our medical background and risk profile.
G-CSF is naturally produced in our bodies by endothelium, macrophages, and a number of other immune cells. The research that identified G-CSF and which led to the development of artificial forms came out of research by Australia's Walter and Eliza Hall institute in 1983, the same research institute that brought us Venetoclax.
We now have well over thirty years of experience in using G-CSF to support cancer treatment, including many in this forum who were prescribed it to boost their neutrophil count so that they could continue life saving treatment for their CLL. Yes there are potential side effects with G-CSF, with the most common being bone pain. I don't recall anyone sharing developing any longer term side effects on either this or other CLL support communities, which would indicate that the risk is fairly low.
Neil
You are at odds with BC Cancer Agency protocol on this Neil. But by all means feel free. I'm sure you know better than they do.
Mmmm, I think you might be wrong. Here’s the reference
bccancer.bc.ca/pharmacy-sit...
Thanks Jackie,
Kim, to quote from the BC Cancer Agency Clinical Pharmacy Guide: Cancer Drug Treatment Assessment and Review 5th Edition.
Supportive Care Medications, page 12 Granulocyte Colony Stimulating Factors
In situations where treatment is potentially curative, a delay in receiving cancer drug treatment due to neutropenia in the patient might compromise the outcome to that patient. The use of a GCSF in a neutropenic patient increases the neutrophil count enough to allow the patient to receive treatment on schedule. Since BC Cancer protocols are established using evidence-based treatment, it is important in potentially curative situations that treatments remain on schedule as much as possible.
Neil
Kim, perhaps you can provide a reference from the BC Cancer Agency? To repeat my words above, "Naturally we need to be guided by our specialists on the best course for us, as they know our medical background and risk profile", so knowing why they have made this recommendation for you and how they determine who are the "some people" would assist all of us facing this quandary.
I was informed by my clinical trial doctor that using G-CSF is the protocol for use in the international ACE-311-CL trial I am on. Many of our members on FCR or BR have reported being prescribed G-CSF as supported by this study on young FCR patients ashpublications.org/blood/a... published in Blood, the highly respected official journal of the American Society of Hematologists (ASH) found that "The use of prophylactic G-CSF (group 2) significantly reduced the rate of neutropenia grade 3–4, and tended to decrease the need for antibiotics given for fever." and concluded "Our data suggest that prophylactic G-CSF use after FCR decreases toxicities but does not impact on outcomes." (My emphasis).
Per Wikipedia, Chemotherapy induced neutropenia
Chemotherapy can cause myelosuppression and unacceptably low levels of white blood cells (leukopenia), making patients susceptible to infections and sepsis. G-CSF stimulates the production of granulocytes, a type of white blood cell. In oncology and hematology, a recombinant form of G-CSF is used with certain cancer patients to accelerate recovery and reduce mortality from neutropenia after chemotherapy, allowing higher-intensity treatment regimens.[11] It is administered to oncology patients via subcutaneous or intravenous routes.[12] (Again, my emphasis).
en.m.wikipedia.org/wiki/Gra...
I'm sure our community members would like to know the reason why the BC Cancer Agency considers G-CSF unsuitable for some people and whether they might fall into that category, rather than being anxious not knowing. Personally my CLL specialist held off prescribing me G-CSF for nearly 10 years until long term safety data became established. I've had around 200 shots in the last 2 years. She finally recommended it after my first hospital admission for febrile neutropenia. My wife became concerned at my high temperature around 1AM and I took some convincing to go to Emergency, because I felt fine. I was immediately placed on IV antibiotics and Paracetamol/Tylenol to bring my fever down. Six hours later I was experiencing rigors and retching and far from fine. Frustratingly the times I've had febrile neutropenia, all the cultures and blood tests never found the cause, but that's a common finding. I've been living a neutropenic lifestyle for 11 years and am very careful to avoid infection risks. I couldn't identify where those infections came from. It's quite scary living with low neutrophils and having them boosted to a safer level greatly improved my quality of life. Thankfully the only occasional issues I had were bruising at the injection site (due to low platelets) and sometimes getting a nerve, causing temporary discomfort.
Neil
G-CSF is NOT supposed to be the first go-to for neutropenia on venetoclax - precisely because it is not the healthiest thing to do to one's marrow if there is any other way to solve the problem. Dose interruption or dose reduction are the first go-to's for that reason. And that is AbbVie's own instructions for venetocalx patients. But maybe you think you know more than them too... I get that you are a huge cheerleader for G-CSF, regardless of risks and the safer first choices to try. Not my problem. My doctors also understand that dose interruption or dose reduction are the CORRECT first approaches to drug-induced neutropenia. G-CSF is last resort, not first. Even when I was on 6-weeks chemo-radiation in 2018, and my neutrophils fell too low to continue the chemo, those doctors would not give me G-CSF. And they were right. Can't help you any further. Happy to let you have the last word, though. I don't anticipate I will return to this non-conversation.
Kim, you incorrectly replied to me earlier "You are at odds with BC Cancer Agency protocol on this Neil. But by all means feel free. I'm sure you know better than they do."
I have never said this is my advice, just shared what I have been told by my specialists and what is stated in your own specialist centre's advice. bccancer.bc.ca/pharmacy-sit... AbbVie also recommend the use of G-CSF where clinically indicated (see my later reply).
Neil
Kim, are you aware of these AbbVie instructions, per rxabbvie.com/pdf/venclexta.pdf, which were last revised in July 2019?
Grade 3 neutropenia with infection or fever; or Grade 4 hematologic toxicities (except lymphopenia) [see Warnings and Precautions (5.2)]
-1st occurrence
Interrupt VENCLEXTA.
To reduce the infection risks associated with neutropenia, granulocyte-colony stimulating factor (G-CSF) may be administered with VENCLEXTA if clinically indicated. Once the toxicity has resolved to Grade 1 or baseline level, VENCLEXTA therapy may be resumed at the same dose. (My Emphasis)
The relevant sections of 5.2 state:
In patients with CLL, Grade 3 or 4 neutropenia developed in 63% to 64% of patients and Grade 4 neutropenia developed in 31% to 33% of patients treated with VENCLEXTA in combination and monotherapy studies (see Tables 10, 12, 14). Febrile neutropenia occurred in 4% to 6% of patients treated with VENCLEXTA in combination and monotherapy studies[see Adverse Reactions (6.1)].
:
Monitor complete blood counts throughout the treatment period. Interrupt dosing or reduce dose for severe neutropenia. Consider supportive measures including antimicrobials for signs of infection and use of growth factors (e.g., G-CSF) (Again, with my emphasis).
Where is there mention of the "problems and risks with using neulasta shots (or any G-CSF shots)"? I accept that there are risks with any medication, but per AbbVie's own document, patients taking Venclexta/Venetoclax are at risk of developing febrile neutropenia, which I can attest has risks far better avoided by using G-CSF injections "if clinically indicated" as recommended in both the BC Columbia Cancer Agency's and AbbVie's recommendations.
Then we have neutropenia management advice for Gazyva/Obinutuzumab from Genetec: gazyva.com/content/dam/gene...
Under point 1 - "Consider administration of granulocyte colony-stimulating factors (GCSF) in patients with Grade 3 or 4 neutropenia."
Only at point 3 is dose/schedule change discussed - Consider dose delays in the case of Grade 3 or 4 neutropenia.
or Management of adverse events associated with idelalisib treatment: expert panel opinion ncbi.nlm.nih.gov/pmc/articl...
Granulocyte colony-stimulating factor (G-CSF) was permitted to treat patients with grade 3 or 4 treatment-emergent neutropenia depending on the study protocol. In patients with relapsed CLL in the phase 3 clinical trial and in patients with iNHL in the phase 2 clinical trial, idelalisib was withheld in grade 4 treatment-emergent neutropenia that was not responding to G-CSF after 14 days (phase 3 trial) or 3 days (phase 2 trial). In the phase 3 study, G-CSF was utilized in 24.6% of patients in the idelalisib plus rituximab group and in 19.4% of patients in the placebo plus rituximab group. In the phase 2 trial, G-CSF was used in 15.8% of patients given the 150 mg BID dose (Note the treatment drug was withheld only after the patient didn't respond to G-CSF).
Then from 2017, we have Refining the role of pegfilgrastim (a long-acting G-CSF) for prevention of chemotherapy-induced febrile neutropenia: consensus guidance recommendations, based on the review of 446 papers, which concluded: "When cure is the intention of chemotherapy, maintenance of planned dose intensity using G-CSF to prevent dose delays or dose reductions should be the standard of care (consensus reached (100%); evidence level I)" (My emphasis)
I've asked you for references, which you did not provide. We now have references from your cancer centre, AbbVie, Genetec and panels of experts showing that YOU, not me are at odds with published advice from the sources you incorrectly claimed were counter to medical advice from my specialists.
As I said before, a neutrophil count of under 1.0 puts you at risk of Febrile Neutropenia and we have seen that in these circumstances, AbbVie DOES recommend the clinician consider the use of G-CSF and recommence Venetoclax when grade 1 (ANC >1.5) or better is achieved. Look after yourself.
Neil
I had the Nuelasta shot a couple times while in venetoclax and it worked well. Brought my ANC up to about 4 quickly. No major pain.
I am not sure on the long term issues though.
Be well,
Hoffy
HI I am in the exact same boat for the past three weeks. I also had my fourth gazyva infusion so that contributed to the low WBC and neutrophils. I am off V for the time being so I don't increase my chances of getting, or succumbing I guess, to Corona. I am going in Monday to see what the blood results are. I will try to let you know. Have taken 6 g-csf shots. I feel like I am running into a highway at rush hour by going into the cancer center to get my blood test...
Hi, While the experts discuss the fine print of the BC document, let me give you my experience. I think the answer to your question is that they stay low! 2 weeks after completing the ramp up, my neutrophils dropped to 0.5 which, in New Zealand, triggers G-CSF shots. Then 3 months further down the track, my neuts dropped to 0.3. Venetoclax was paused for 1 week, G-CSF shots started again and I resumed Venetoclax at 300mg daily. A further 2 months later (Nov 2018) I went down to 200 mg daily and I’ve stayed at that level since (and for the next 2 years ahead). No G-CSF since then and neutrophils have ranged between 1.2 and 2.7 (currently 1.6). My WBC is currently 3.0, platelets 113, HGB 134. Go well. Cheers, Rob
I have no advice, but I can give you my own experience. I am on a combi therapy Venetoclax-Rituximab, since October 2019. My daily dose is 400 mg a day. Mid December my neutrophils were down to 0.65, so my doctor decided I temporarily have to stop Venetoclax. A week later the neutrophils were a little higer, 0.94, but that improvement was nog good enough to restart Venetoclax. They then gave me an injection of 6 mg Pegfilgrastim. Three days later my neutrophils were up to 28 (!) and I restarted Venetoclax. On January 28 neutrophils were 1.25, on February 21 it was 1.43 and about a week ago it rised to 2.3. Rest of the blood counts are good as well.
Good luck, Korstiaan
Hi ,
My wbc and neuts returned to normal after three weeks off V and two weeks of shots. I am now back on 200mg of V and will see how that goes.
So you required 14 days straight of G- csf shots to recover your neutrophils? Glad to hear it was resolved
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