Hi everyone. I have just had my four monthly blood test results back and were I was expecting just a possible small change as I still feel really good in myself I had a bit of a shock. The main points that has thrown me is that my.
Platelet count has dropped from 111 to 86 and I also have Neutropenia going from 4.33 to 0.86. My WBC has also gone up 72.20 to 85.51 although I know that it does fluctuate.
In the past my platelets have bounced around a bit but never below 100 and my neutrophil levels have always been normal.
I am due to have my bloods done again in a months time but as always it a W&W game never knowing what to expect.
I am just wondering out there if any of you may have had any similar results and are able to share how thing went.
Kindest regards to everyone. Steve
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Strech51
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Thanks zaax. I think that is why they want another test in a months time. When you had treatment do you mind saying how long it was until the neutrophil went back up.
They might look into using injections to boost your neutrophil count if your doctor feels that it's necessary. I recently started treatment and am currently on these injections to boost my neutrophils as they are very low. It's our disease causing it. You won't be able to predict how quickly they recover but our doctors know what to do to keep us as safe as possible.
Thanks again Petra. I hope your treatment goes really well and all you bloods respond quickly. You seem like you have a far better understanding of your condition than I with mine. I imagine I will soon be having to get to grips with treatment as well.
Thank you Steve ❤. Maybe I have been reading too many posts on here 🤔 🙂for the past three years. This is a wonderful forum and there is always someone who went through something that might worry you. Hearing from others doesn't make it less scary but it does calm me down at times.
As zaax has already pointed out, you will need another blood test to see the trend - which is exactly what your doctor is doing.
It seems you might be nearing treatment if the trend continues.
You don't have to worry about your platelets too much at this point but just take extra care with hand washing, food preparation, etc. to avoid infections (due to your low neutrophil count).
It can be scary but I'm sure your doctor will stay on top of this. If you get a temperature, definitely do not hesitate to go straight to A&E as you would need a blood test. You will be fine, don't worry.
Thank you Petra for your reassurance. Only been on W&W for 19 months and was hopping for longer. I was told that I would have to have treatment at some point. Each time thing change it seems like its a new worry and loads of uncertainties creep in. I suppose its why its also call Watch & Worry , very appt.
Yes, Steve. I can totally relate, we all can. Some of us have a long w&w and some go straight into treatment. I started treatment 2 weeks ago exactly 3 years to the day I was diagnosed. I sometimes wonder what is better, a long w&w or straight into treatment. I do find the blood results worrying too but I always try to trust my doctors and if they don't seem worried and there's a plan as to what to do, I really try not to worry either as it just causes unnecessary stress. I think your doctor is doing the right thing and that is really reassuring.
I am lucky in one way that my doctor is a CLL specialist. I does worry me and I do get anxiety which I know doesn't help. But being on this website and chatting to you and people like you really does help greatly. Sometimes it seems only people like us with this horrible condition understands what its like. Even friends and family cant always understand. Still there are others out there with worse cancers which I bet they would be willing to swap.
You may realize that I type very slowly. so if I have missed anything, sorry.
Yes, I get it. There are pros and cons to both. Sometimes your w&w isn't just about anxiety though. It's about being symptomatic and living with it. It can be really depressing and impossible to navigate, especially when you are working and have small kids to look after. I was always hoping for a long w&w but this year, as I was getting more and more symptoms, I honestly felt I had to start, I would not want to go on like that for a day longer. My last year hasn't been about living so much but literally just surviving. On the other hand, you have time to get your head around and learn about your disease. It isn't as easy as saying one is better than the other, is it...I hope you are doing well ❤
Thanks lankisterguy. I have got an excel sheet but not as good as yours. I will take a look at yours closer. Your CLL diagnosis seems to be better than mine now having just had a quick look at the figures. I must admit I am not that clued up so If I have made a mistake I am very sorry. All the very best Steve
You haven't made any mistakes that I can see. I have been in continuos treatment for most of the 6 years, that's the primary reason my numbers are reasonably stable. When I pause treatment the CLL come roaring back.
Unless you are having certain symptoms, the platelets may be on a "slow creep" downward because of the CLL. Blood blisters in the mouth, excessive (especially if very dark) bruising, blood in stool or urine, long time oozing response to scratches, nosebleeds, and/or petechiae showing up indicates you probably should notify your doc/get a repeat blood test sooner. Others have already commented on infection control measures, and of course if you get ill or otherwise seem to get a skin or mouth infection, that would also mean to get seen sooner. Neutrophils can and do fluctuate within days, hopefully this is just a random snapshot when they happened to dip low. Take pictures of any suspicious skin changes, to verify if they expand, or the number increases, etc. With blood platelet levels around 100 like me, I do bruise a bit more easily, but I eyeball my body regularly and take pictures to verify if it's a random bruise that gets better versus things getting bigger, color changes, etc.
Thanks for the info and the photo. At the moment I don't have any problems except a slowly healing small cut off a rose bush. Its defiantly healing though. I have been given a list of thing to check for from the hospital. But I will take note of what you have said and the picture.
Perfectly understand your shock about this fairly sudden drop of 2 cell lines. When I was seen for the first time by my CLL expert my platelets dropped below 100k and she wanted to start treatment. However we waited another 2 years since they remained stable until I developed symptoms.
Having said that the drop in 2 cell lines you suffered is a bit concerning which could signify bone marrow suppression due to CLL infiltration. Furthermore your low neutrophil count makes you more susceptible for infections at this point. Alternatively sometimes CLL is associated with immune phenomena destroying platelets and neutrophils. It looks like you may require treatment rather sooner than later and I would look for a repeat blood test rather sooner than later especially in the light of your low neutrophil count.
Thank you Heiko for the info. I understand that I expect to get treatment at some point which I also expect will be soon. My doc is a CLL specialist and even if I get a test before a month he wont act on it as I believe he wants enough time to see a trend. I am hoping both improve on the next test. In the past my platelets have bounced once they went from 123 to 153 but never below 100 other lowest was 105. Just hope a miracle happens.
I first experienced a similar platelet drop to yours 4 years before I started treatment. As you note, platelets bounce around a bit. Part of that can be due to the fact that platelets naturally clump together - it's after all how they function. Automated testing ignores the clumped platelets, so you get a lower reported count than the true count.
Even if your platelets are under 100, the latest (2018) version of the iWCLL document on the diagnosis, management and treatment of CLL notes that this is not a reason to start treatment provided platelet counts are stable, i.e. not continuing to trend down. Of relevance, the iWCLL doesn't use low neutrophils as a trigger for starting treatment, nor does any other CLL treatment guide that I know of. I averaged a neutrophil count of 1. 0 for the 11 years I was in watch and wait, with the support of G-CSF shots for the last few years before starting treatment.
Also, please monitor your absolute lymphocyte count doubling time, not your WBC. The latter includes neutrophils and other white blood cells. You've noted your neutrophil count has dropped significantly, which is going to confuse your interpretation of your WBC. An ALC doubling time of under 6 months is a flag to look for confirmation for other indicators that time for treatment has arrived.
Steve, You're seeing a CLL specialist who is doing exactly as they should - monitoring you more closely. If they consider you need to start treatment, then you can be confident that they are right. You haven't mentioned what's happening with your haemoglobin level. If that has remained relatively stable, then it could be years yet before you need treatment. You've also received lots of excellent feedback from our community.
By the way. Len lankisterguy helped me with the development of the spreadsheet. You should be easily able to copy across your results if you wish to switch. You can learn a lot from observing how your counts change, particularly during and after treatment.
Thank you Neil for your very valuable information. I was hoping that you would notice my post. I am also very pleased with comments from the others in the community. For info, My Haemoglobin is 119 down from 131. four months ago and my lymphocyte's (ALC) is 83.8, six months ago (8 Jan 2022) it was 51.37. You mentioned about you having had a neutrophil count averaging 1 for 11 years. My consultant said I should have it at least 1 before having an operation. I must admit I am bricking it as the op is to remove a Cholesteatoma from my left ear. All this as come at once as I am starting my pre op and due to see the anaesthetist on Monday. No date given for the op yet but hopefully it will be done when my bloods are in the best condition as possible. I will look into the spread sheet again. Although in the UK I am registered with Patient Access and I can see my blood results and other personal health reports. The blood results shows as a graph over the dates they are done. Admittedly not all results show on patient access so I have them emailed from the hospital. I will be looking at the graph Len and you mentioned.
Thank you so much for taking the time to give me you help.
Neil is definitely one of our resident experts here, so I'm pleased for you that he's given advice!FWIW and on a purely personal level, I'm 11 years post treatment, and my platelet count has never gone above 100 since then as far as I remember - but I'm fine. So maybe not a major cause for worry.
I wouldn't worry too much, I am not on any treatment yet and feel OK, but have wbc at 700, and 0 neutrophils! I, sometimes feel a bit lightheaded and tired., but still very active, and haven't had even a cough or cold this century x
Thank you for your post. So glad you are feeling good and keeping active. I also keep active and feeling good which made me think there was no change in my bloods. It seems that my bloods and body doesn't match. Keep active you are obviously doing something right.
I have been on Watch and Wait for 5 years. I have noticed that I feel and how active I’ve been has nothing to do with what my blood is up to. My blood often partied while I feel lousy and rests while I am partying! I have given up trying to discern how my blood is doing!
I was told I'd be 5+ years W&W 12/2015 and I was in treatment in 6 months. I also relapsed last year and am on a phase I clinical trial and the numbers started going in the wrong direction again so they upped the dose. All this to say, I've seen the numbers go in the wrong direction 3 times (not counting my neutrophils being nearly wiped out during the first treatment). I'm sure you are stressed out and that is totally understandable. You will probably be in treatment at some point which they advised you, and honestly, the fear of progressing to treatment was worse than starting treatment for me. You'll likely be taking a pill or two a day and you'll feel much better quickly. Hang in there!
Thanks thompsonellen. I had been hoping for a good few year before any treatment, when I was first diagnosed or even the possibility of none. You seem to be managing very well coping with the treatments you have been having. With your positive attitude I am sure you will have a good result from the trial. I will be remembering all the positive posts I have received from you and others and put it to good use going forward on my journey.
when I was showing numbers such as yours, I began first line treatment of Bendamustine/Rituximab and I went into remission after the standard 6 month regimen.
Watch and wait sometimes ends and treatment is required ,
My doc said he would not want to see my platelets get much lower once into double digits around 75.. and my bones were probably getting packed with leukemia cells
B&R was very do able . Good luck it's a rollercoaster most times with CLL
Like you, my platelet level bounced around a bit, but when it finally dropped down to 75, I started treatment on Ibrutinib. You might be getting closer to treatment and, at the least, you need to explore the various wonderful options with your specialist.
Thanks. I hope your treatment is working well for you. I have heard a lot about targeted treatments which my CLL specialist did mention early on if I should have to have treatment. I am sure he will help guide me through my option and I can always ask advice from the community.
Thanks Maria. I have to follow my consultants advice. I have been given list of things to check for and if needed I can contact the emergency number they gave me.
My platelets were at87 but picked up to near 150 when my doc gave me eltrompobag which increase levels in the bone marrow. I beat CLL 2 years ago and it 99.99 % gone ! Then i get Hodgkins lymphoma and now back on chemo for that! It never rains!
Thanks for sharing your journey with our community…we are all on the same journey just at different places and we constantly are learning from each other.
I wish you only the very very best as you continue to fight your way thru this. 🙏🙏🙏
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