Having tried to search this query out in other posts and failed, I am hoping someone can explain to me why, despite taking a G-CSF injection, my neutrophils tanked from 0.37 to 0.14 in a week. Is this normal? I have been taken off all treatment ( six months into V&O) and given three more injections to use but finding this scarey. I know my team thought they would have improved by this Thursday and that I would be able to continue with treatment. Sadly not. I am on antibiotics for either an infection or a virus (no swab) I appear to have picked up - could that be the reason?
Thanks also for posts with tips for a neutropenic diet. Always good to be reminded of what precautions we need to take.
Written by
Steffi50
To view profiles and participate in discussions please or .
If our bone marrow stops making neutrophils, it takes about 10 days from when our bone marrow restarts making them, before they appear in our blood. Neutrophils use our blood stream to move from our marrow into our tissues, where they protect us from invading bugs. They only last a few hours to days in the blood. I needed injections from daily to a few times weekly during my treatment with acalabrutinib + V&O until my bone marrow began to recover from treatment about 2 months into treatment. Hopefully you'll see an improvement soon.
Thx AussieNeil, I thought you would know. Your problems started much earlier in the cyele though. I am concerned that my problems are showing up now in month 6. So also doctor really checking after one week raised a false flag. Hoping for better results next week.
Sorry you are going through this stressful patch. I would echo Neil's words. I suffered with neutropenia for the whole duration of my treatment (O+V). I remember when I had neutropenic sepsis, my neutrophils were very low (possibly 0.17?) - they didn't increase after 3 GCSF injections and after 5 days on them they were still very low - possibly 0.6? They stopped your meds and they will probably give you more GCSF? I'm sure they will slowly recover but they may continue being low while on treatment. Low neutrophils don't make you feel sick. I had phases during treatment when they went low again (0.3) and I just made sure I postponed a planned trip for a weekend in Cambridge and stayed at home and went for walks in the woods instead. I can see you are aware of risks linked to food. Stay strong and patient. They will go up again. I'm sure that when you are unwell, it takes longer for them to increase - it seemed to be the case with me. You are on antibiotics and they are monitoring you closely, I believe it will improve although at a slower pace.
I just wrote a reply to say thanks for the comforting words and managed to delete it! What a clux. You are right I must stay strong and positive Your past levels almost mirror mine and aware that I could get neutropenic sepsis. It really helps to hear the experience of other members and how they overcame the difficulties. Yes, I am staying close to home and taking every precaution to stay safe as so much covid and virus around at present. Thx again.
I do not understand why they keep giving people O beyond the initial small dose to bring the lymphocyte count down in order to avoid TLS. Who said that more is better? Why not just continue with V after the first small dose of O?
I had asked a similar question of my physician. Hope this answer helps.
My treating physician said that the reason they do a "deep dive" by giving the amount & duration of the Obin & Venetoclax was to clear out all the bad stuff and provide a clean slate for your body to begin it's natural process again.
It's definitely a balancing act. Trying to find the best dose for the appropriate length of time that achieves the longest remission. And do this within a financial framework that is acceptable.
If there was a chance to cure the disease that would be perhaps the right approach. But how do we know that the long pressure of O doesn't push for selection of resistant clones? How about just getting rid of most of the CLL cells with a single dose of O, then let V do its thing for a short time then stop, wait and retreat the same way down the line when the need arises. That could be cost effective, less side effects and better life quality.
Me too. But not blindly, and to a point only. In every epoch science is wrong about a great many things but these become apparent only in hindsight after many years. Anyways, trials are under way to answer these questions and it's possible, even probable, that protocols will change in the future. Hopefully, for the better.
I think protocols are always changing. When I first had CLL the only treatment available to me would have been FCR and as a breast cancer survivor I had a real dread of harsh chemo. Now we have immunotherapy and whilst, yes I am having a hard time just at the moment, this is a real step change. As you say, we will get answers in time. And so much research coming forward that gives me hope for the future.
Concurrently treating a cancer with drugs using different targets, makes it very difficult for the cancer to develop resistance. Theoretical, two DNA changes need to happen in the same cell division and a daughter cell survive both drugs, for resistance to develop. This is why it's possible for venetoclax + obinutuzumab to be repeated.
Yes. But does this mean that treating longer, instead of treating shorter with subsequent repetitions of treatment is better? I hope this question gets answered soon. Treating for 3 months every 2 years as an example sounds better than treating continuously or 2 years in 1 stretch.
You don't get to uMRD in 3 months; it typically takes about a year to achieve. It would put patients at increased risk of toxicity and tumour lysis syndrome if you used a higher dose of venetoclax to try for faster uMRD.
Why would I want to get to uMRD? CLL is still incurable. Knocking the numbers down low and letting them rise again before knocking them down again would be ok too.
Because achieving uMRD gives you a longer break from the compromising effects on your body from the CLL tumour. That's not just the crippling of your immune system, but the reduced ability to make a healthy level of blood counts, the impact of living with a swollen spleen, nodes and possibly other organs. It takes the full treatment time to clear out bone marrow infiltration. My haemoglobin is better now than it was 3 years before my CLL/SLL diagnosis and I've been free from neutropenia for 4 years now, after living with between stage 2 and stage 4 neutropenia for 11 years. CT scans showed that my liver also shrank during treatment - so that had been infiltrated too.
Given the length of remission is individual even starting from uMRD it is not at all evident that doing a 2 year treatment and then hoping for a long remission is superior to doing a shorter one more frequently, especially if its repeatable. The biggest benefit in terms of what you mention, shrinking of nodes, organs etc. happens early on, during the first months, doesn't it? What if properly conducted studies show that there is really no benefit to treating longer trying to achieve umrd compared to treating shorter and more often? We will not know until those studies are done. And I'm not yet talking about the cost benefit which would help alleviate the pressure on the public insurance systems and make the treatment available to more patients. Because if insurance systems go bankrupt thanks to ever increasing number of patients nobody wins in the end. The other thing is why push a frail and elderly patient through a 2-year course of harsh treatment when he might do just as well with a few shorter treatment periods, while having a better quality of life untill he succumbs to old age or something. No one size fits all.
Not reaching uMRD4 means treatment should continue as the progression time is short. Eventually that will stop working and then an alterative has to be found. With just three classes of drugs BTKi, BCL2 and mab currently approved there aren't that many alternatives (other than trials, chemo, SCT, CAR-T) when one has been used to exhaustion.
With short/fixed duration treatments that have 78% at uMRD4 (CLL14 V+O) the treatment can be repeated (in US, other places switch to V+R).
Fixed duration V+I has lower numbers reaching uMRD4, 57% but the treatment has similar PFS and remission time to V+O.
The key word here is" eventually". I've read about cases where people stopped taking a BTK inhibitor for other reasons and their numbers remained stable for years. And they were not umrd. And where is the research confirming that on and off treatment leads to resistance sooner than continuous treatment? Why would it?
My perception is that for everyone on HU that posts they have stopped taking BTKi without progression there will be another that has had tumour flare while on a short break for surgery and then been tested (-ve) for RT. I'm not sure a trial could be designed where this was a known common outcome/AE.
Maybe it needs limiting to mCLL? But few on HU that have success / tumour flare are divulging their IgHV status. AFAIK no one in UK NHS treatment since the approval of Acalabrutinib for those unsuitable for FCR knows IgHV as it's not tested, if they don't know IgHV status they are unsuitable for FCR.
The GLOW trial of V+I has recently reported that uMRD is not a prognostic for mCLL but is for uCLL. For mCLL a "reset" even if partial could last years.
The only trial I know of that is/was doing on/off after conversion from uMRD to dMRD was FLAIR but that was V+I and only 12 out of 260 progressed and 9 of them died over 6 years (3 uCLL, 6 mCLL). With a median time on treatment of 48 months, FLAIR reported lower PFS at 48 months for mCLL than 15 cycles GLOW and CAPTIVATE.
Other trials allow re-treatment but that doesn't start until progression reaches iwCLL criteria.
I was diagnosed in 2018. 1st line treatment of FCR in 2019. 2nd line treatment V and R started 2023. I have always had problems with my neutrophils. I was hospitalised in 2019 as my count was 0.0!!! I have weekly GCSF injections at the moment which keep them just above 1. They took a long time to recover after FCR and only climbed to about 2. I'm regularly monitored. Good luck to you. X
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Happy day / complete remission
Exercise and Neutrophils
FCR-neutrophils
Back from the hematologist, counts slowly rising.
High neutrophils low lymphocytes low IGg
