Ok, so now been on highest dose of Venetoclax with Ibrutinib and Neutrophils count down to 0.61. Only started going down since taking higher dose. Had one stomach injection of something but still high so now been given 4 weekly injections to do myself.Been told it's probably due to ramp up and may lower dose if injections don't work.
Has anyone had similar and is there anything I can do other than wait 2 weeks before next Heamatology appointment. Not feeling ill and even though wife had COVID I didn't get it.
Thanks.
Tony.
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Guinness4822
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This happened to me when I was on Ibrutinib/Venetoclax. It's not that unusual as I understand. They gave me a shot of Neulasta and that resolved it. Else they would have lowered the dose or temporarily suspended the Venetoclax. Good luck.
Neutropenia is quite common on V. About 50% of patients will suffer with it. I was one of them. I was neutropenic for the whole duration of treatment from day 1. I had to take regular GCSF injections which is probably what you got - I had Zarzio. Sometimes 5x in a row, some months just 1x a week, etc. depending on blood results. My neutropenia resolved about one month post treatment I think. You just have to be careful when neutropenic - avoid crowds, up hand hygiene, careful with what you eat - wash it well, cook it well. Any fever go straight to A&E, don't wait and hesitate - there's a high risk of getting neutropenic sepsis. Easily treatable if caught on time. There is nothing else you can do to make the neutropenia better. All the best ❤️
Hang in there! Hopefully as your bone marrow clears out of CLL there will be more room for them to grow.
If the particular shot isn’t work as well as hoped ask if you can try the other form of growth factor. There are two kinds. They will know what you are talking about.
I have been on ibrutinib for over three years now after over two years before that on watch and wait. Two years ago I had a low neutrophil count after one blood test and immediately had a course of three days of GCSF, first dose by the nurse and two self administered, after being taught by the nurse. A week later my neutrophil count returned to normal and since then has been in the normal range. I have monthly complete blood count tests and have had covid, and was given paxlovid, over that time with no change in neutrophil levels. Wish you luck.
Similar case to you. Once my neutrophils dropped below 1, I went in for an injection. Blood test after that showed improvement so even though I have some in my fridge, I never so far was told to do any more injections. Will see again at next blood test in few weeks.
Yes, mine have just fallen to 0.36 and I am also using the injections to boost. I think it happens to a lot of us and has happened to me x2 now. Off V and last infusion delayed until they see an improvement
I am having the injections, 3 per week, and my venetoclax has been reduced to 100grams per day. 3 months into treatment. Neutrophils still low but higher then the 0.4 that dropped down to. My doctor is going to continue my jabs and may reduce the venetoclax even further.
Steffi - I don't remember precisely but pretty quickly. They dropped me to half dose because of the neutrophils and because I was suffering terrible joint pains. The reduction quickly resolved both and after a couple of months I went up to 3/4 dose and stayed on it to the end. I asked to go to full dose again but they felt it wasn't necessary. I completed the course and was uMRD.
It happened to me as well. I was given an injection first at the hospital then a couple of months later, it happened again and I had a five day course which I had to administer myself.
This was the worst thing!
I think it is common and my dose of Venetoclax was never reduced. I went to the hospital the other week because I'd tested positive for Covid and my neutrophils had gone up to over 2.
Try not to worry. Easier said than done I know. I read up on Neutropenia, changed my diet and was extra careful.
You'll find a section on the precautions to take when you are neutropenic towards the end of this post healthunlocked.com/cllsuppo...
Your medical team are already doing all that can be done to overcome your neutropenia, namely adjusting the frequency of subcutaneous G-CSF injections into your abdomen and reducing, even possibly taking a break from venetoclax. Unfortunately. you are totally unaware that your bone marrow is not providing neutrophils. If your bone marrow totally stops making neutrophils. It takes 10 days for new ones to grow to maturity once your bone marrow restarts making them.
Just be smart. If there is a type of food that has a reputation of potentially being tainted with salmonella or something then consider if it is worth it.
Wash your fruits and veggies well.
Also, think twice about exotic foods. I ended up in the hospital from food poisoning during my venetoclax ramp up. The cook probably didn’t wash his hands…
A neutropenic diet is where you avoid foods naturally high in bacteria (e.g. shellfish, blue vein cheeses, etc.) and take extra care with food safety to avoid eating foods with high amounts of bacterial. See the section, Safe Eating for Poor Immune Function - Beyond the Neutropenic Diet in the section I referenced above in this reference.
The requirement to avoid an extensive list of what were considered unsafe foods has largely been abandoned nowadays, because of the recognised importance of eating a wide range of nutritious food when you are already probably struggling with nausea from treatment, but it is wise to do what you can to avoid foods naturally high in bacteria as well as not letting bacterial levels in prepared food become dangerous.
No raw foods,no rare steaks, everything going into the mouth well cooked, cutlery sanitized, cross infection during food preparation avoided. No live bacteria entering the mouth during meals.
I had a lesson in how to give myself a shot and there is a video tutorial on the Marsden site. Was super nervous first time but in fact it hurts less when you do it yourself and is super easy. I wonder why your team want to give them on site?
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