Monday I had what I thought would be a routine blood draw, doctor visit, and final Gayzva infusion. When the NP came in she told me my neutrophils were too low for me to have the infusion and said to pause the Ventoclax for a week. This was a low blow! In June my neutrophils were 3.9; Monday they were .2. My WBC was 7.2 in June; Monday it was 2.3. In June my platelets were 111; Monday they were 118 (a slight increase.) What could cause this drastic change in neutrophils? The NP simply said this is not unusual. To me, it is most concerning and unusual.Thank you for any insight/advice.
Chris
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Tabbytabby
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Your NP is quite correct. Neutrophils basically use the blood stream as a highway between the bone marrow and your tissues, where they are first responders to any invaders. Some also take up residence in your spleen for an emergency back-up supply, because it takes about 10 days for mature neutrophils to appear in your blood after your bone marrow starts making them again if it has halted production. Depending on how they are measured, you'll find neutrophil half lives in your blood can be reported as lasting between hours to up to a week in research papers. (I saw my neutrophil count halve in about a week when bone marrow infiltration impacted production during my CLL/SLL diagnosis.)
Hence the week's pause for your bone marrow to recover from the impact of your CLL treatment. If your neutrophil count doesn't recover after a week, your specialist might recommend kick-starting/boosting neutrophil production with G-CSF (Granulocyte Colony Stimulation Factor) injections or further pausing or recommencing at a lower venetoclax dose. There are recommendations on the respective Gazyva and Venclexta sites, but what's decided can be influenced by your specialist's experience.
From your improvement in your platelet count, your bone marrow infiltration looks to be reducing, so that's encouraging to see. Importantly, you should also be tracking your lymphocyte count, not your WBC, to assess your response to treatment. That's because neutrophils normally account for roughly two thirds of a healthy person's WBC, with lymphocytes and other white blood cells making up the balance. When your neutrophil count falls dramatically with a normal WBC, which is what you now have, you can't determine what's happening with your blood CLL tumour burden (included in your lymphocyte count). You can see that most of your drop in your WBC is due to your drop in neutrophils; your WBC dropped 7.2 - 2.3 = 4.9, neutrophils dropped 3.7 (3.9 - 0.2). I presume your absolute lymphocyte count has also dropped, again good news if so, but it might be that other white blood cell counts have dropped, further increasing your risk of infection.
I've extensively covered how to guard against infection with severe neutropenia (I've been there for many years), in the section at the end of this post: healthunlocked.com/cllsuppo...
Thank you for the detailed reply. My lymphocytes # in June were 2.5 and in July 1.6; mono # June were 0.7 and in July 0.4: Eos # in June 0.1 and July no change; Baso # June 0.0 and no change in June. As much as I try, I can’t understand all the components and numbers in the CBC. I don’t know what my ALC is. Thank you for directing me to the link that provides much information about neutrophils, especially avoiding infections. I will spend time reading all the information. Again, thank you!
Your ALC - Absolute Lymphocyte Count is what you referred to as your lymphocytes, so an improvement from 2.5 to 1.6 is what you want to see. Yours are in the normal range!
Neutropenia happens in over 60% of patients taking Obin/Ven regimen. I have infusion #8 coming up in a few days. My last ANC was 1.0 just prior to #7, and it was heading downhill for the last few draws. It was borderline whether to infuse or not. I said I was fine with going ahead. Based on the downtrend, I might have a pause as well with a Neut booster soon. Its to be expected since the odds are so high. A pause in treatment, neut booster and then a restart usually follows. Everyone seems to get through these ANC crashes.
Hi Tabbytabby, sorry to hear about your neutropenia. Agree with others, it's actually very common. 1 out of 2 patients going through this treatment will experience neutropenia. I was neutropenic from day 1 of the treatment and have been on supportive medication (GCSF injections - zarzio in my case) through the whole treatment. You can read about my journey as I tried to post updates regularly. I'm one month post treatment and continued to use the zarzio up until now. I'm stopping to see what happens without them, hope that I will be producing enough by myself. It feels like a set back but keep going, it's just one of the bumps on the road we have to get over. All the best. Petra
It definitely feels like a set back. Monday was to be my last infusion and I have done well with the V+O treatment, so the news came as shock! I thought I was going to breeze through the treatment, but it is not to be. I will take it a week at a time and hope for better days ahead. Thank you.
It's alarming, right!? At least you didn't find out because you were hospitalized or have a nasty infection. As others have said, it's a side effect of the treatment and recovery from the cancer. In my case it happened from about the middle of the Obin infusions and just now, several months later, seems to be starting to improve. I take a GCS-F shot when I am at 2.0 or below for ALC.
Thanks! Here's to bouncing back quickly. I had several stops and starts and a dose reductions and my first MRD check at 6 months only found 2 CLL cells out of a million. So I'll hopefully be at 0 for the next one. I say all that to say that pauses aren't necessarily bad.
I completely understand how you feel! This disease keeps things interesting. Situations unique to every individual but neutropenia apparently isn't one of them. Hang in there, it's just a blip on the radar and it will pass. Best wishes!
Don't despair :)I just completed my fifth week of ramp up. Everything was going smoothly going into week three when my neutrophils took a plunge to .42. They could not do my treatment and encouraged me to take growth factor injection to try to bump it up. I read the side effects and decided that I wanted to try holding my Venetoclax first and see if it would rebound on its own. The team agreed and as it was Thursday, the held my V and A for the weekend and I went back on Monday and it was over 3.5. They were all very surprised that it rebounded so much without the Growth factor injections. Since then, it has dropped a bit and settled in around 1.5, but it didn't dip that low again. My team also said that these neutrophil variations during ramp up were expected.
I did have a flare of CLL symptoms such as fatigue and some night sweats for about a week , after the meds were held, and we attributed it to them holding the Acala. They said because of my response, they would only hold the V in the future is my labs required it.
I also experienced a little bit of doom thinking and depression about the set back that week, I will admit. I wasn't really mentally or emotionally prepared for the set back. I want to encourage you and others to just keep moving forward and anticipate there may be bumps in the road along the way, but you will get to the end of it, and your body will eventually adjust.
Ramp up is difficult on our bodies as we adjust physically to the new internal landscape, and the medications. Labs and are bodies responses to things are funny things... hard to predict and even harder to understand..
A few things that helped me..
1. Prayer. I know this is different for everyone, but it is important to me, and helps keep me grounded when there are bumps in the road for me.
2. Daily moderate physical activity-not Intense physical activity though. There is proven research that being active helps draw neutrophils out and raises your levels. In fact, my team encouraged me to run a flight of stairs before my draw. lol They may have been kidding, but I did it anyway. lol I now know that this activity works in the same way that injected Growth factor does, without the side effects.
It basically sums up that, "Exercise causes a biphasic increase in the number of neutrophils in the blood, arising from increases in catecholamine and cortisol concentrations. Moderate intensity exercise may enhance neutrophil respiratory burst activity, possibly through increases in the concentrations of growth hormone and the inflammatory cytokine IL-6. In contrast, intense or long duration exercise may suppress neutrophil degranulation and the production of reactive oxidants via elevated circulating concentrations of epinephrine (adrenaline) and cortisol.
3. Dark Chocolate. Again, there have been studies that dark chocolate raises your neutrophil count significantly 4 hours after consumption. Unfortunately, it can't be milk chocolate.
The article discusses the possible helpful effects of 90% dark chocolate. "Each volunteer ingested 50 g of 90% cocoa chocolate (Noir Prodigieux, Lindt, Kilchberg, Switzerland) within 3 to 5 minutes. " I love dark chocolate, so this was not a hardship for me. Thank you Amazon.
4. Listening to my body, and trying to give it what it needs. Rest, Fun, Nutrition, Stress Relief, or whatever. My thinking is that I want to keep my body as healthy as possible - and do whatever is under my control, so that CLL is the only thing I'm dealing with medically if possible.
5. Having fun! Even though I have had to modify some of my activities, because of our higher infection risk, I think its important to do things we enjoy, and that make us laugh. Laughter boosts endorphins for pain relief, and increases Seratonin levels to help with depression. When we put all of the good things on hold during treatment, it makes that time even more challenging.
I hope this is the only bump in the road that you will experience in your ramp up. But if it isn't, take heart that you are not alone, and that you are strong enough to get through these bumps. Remember that one day in the not too distant future, you will be looking back in the rear view mirror at this time.
Take Care, and keep us posted on how things are going for you,
Thank you for your reply and helpful suggestions. I am have been taking V+O for 6 months. I was successful with no problems until I learned Monday (July 3) I would not be able to get my last obini infusion due to low neutrophils. (0.2) Both V+O were paused for this week. I see my oncologist Monday and hope my numbers have improved and I can move forward. CLL a beast I wish I had never encountered. Best wishes to you as you ramp up and keep the faith.
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