Hi All, I was diagnosed in June 2018, and I am still on W&W. I am however, a Tad confused re the levels and progress of my crucial Blood Counts.
For instance I started in 2018 with a 12.6 WBC, and as of March 2021 it was 39. I find it difficult to, research and understand CLL to the degree many of you can. I just find it too much for me, to assimilate, so I rely mostly on my Haemo man, and tend to trust him implcitly. (Maybe not a good idea, I concede)
I have read posts where fellow sufferes of CLL mention WBC figures in the thousands, which confuses me, as my WBC is now 39, a rise of 27 since diagnosis in 2018.
In 2018 my other crucial counts were as follows: MCH 314. Neuts 4.36. Lymp 6.87. BASO 0.30. Platlets 155
In December 2021, they were: WBC 39. MCHC 317. Neuts 2.77. Lymp 27.30 BASO 0.02, but my Platlets went down to 130. I am seeing my Consultant in June for my 4 monthly. visit.
I have recently had a new neck lump, seen by ENT man, and having it Biopsied as I write.
I also had a bad reaction to my 4th Vaccine last week, with an added feature of a spiralling Heart rate to 120, which lasted 6 hours or so, before it gradually went back down to normal.
I consulted my GP about this and he was not too worried, and thought it was as a reaction to the Vaccine.
I have also beem quite Fatigued, Nauseous, and a little Light Headed at times, which could be connected to long term 'Anxiety Problems'. I will of course l discuss all of this with my Consultant in June after the ENT man is finished with me.
In the interim, perhaps someone could explain my Blood Counts to me, notwithstanding the Anxiety issues I have. Is the level and progress, fairly normal for me at this stage of W&W, or are things on the mve?.
Any information or advice would be very much welcomed, and I do so hope that you you are all managing, especially as we reach some kind of 'Post Covid' Normality'. I certainly hope your 'Anxiety levels are lower than my own. Stay safe and well all. Kind regards Ron.
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Ron, the Pinned Posts talk about what the differing labs values might mean. Also, cllsociety.org has basics explained. Lab values normally fluctuate, and unless your labwork trends down or up drastically, and/or you have symptoms, a single, random change might be meaningless.
There's a spreadsheet template for you to proactively see the trends your own labs might take. With CLL taking over my life (I have a hard to treat variant, and never went through W&W), I like to read, analyze, and track my labs. Taking control of "something", at least. It helps me with my anxieties around my CLL.
Thanks Sofia, that was very helpful, I must be somewhat lucky as I was W&W from diagnosis, It must be very much more difficult to deal with, if you jump right i nto treatment. I do hope you are on top of things, and enjoying life as much as Mr CLL allows. All the best. Ron .
With respect to your question about counts in the thousands, while every country in the world uses the metric system for blood count measurements, the reference volume for reporting the number of blood cells varies by lab. In the US and a few overseas labs, you tend to see white blood cell and platelet counts reported in the thousands, so a lymphocyte count of 70,000 in the US equals a count of 70 most elsewhere and likewise a platelet count of 160,000 in the US equals 160 most elsewhere. Likewise for haemoglobin, where you see typical counts around the teens, say 12.3 which is reported as 123 elsewhere. Immunoglobulins (IgA, IgG and IgM) are also reported in the US and elsewhere differently.
It gets worse for biochemical measurements, where there can sometimes be two or even 3 different units commonly used to report the serum concentration. That's why it's so important to specify the result, the reference (healthy) range and particularly for biochemical results, the units to avoid misunderstandings when mentioning blood test results. For example the reference ranges for the commonly used units for vitamin D/ 25(OH)D serum level reporting overlap! They are respectively:-
32-100ng/ml
60-160nmol/l
So if someone says that their vitamin D level is 45 without saying that the result is measured in nanograms per millilltre (ng/ml) or nanomoles per litre (nmol/l) is their vitamin D level good or low?
With respect to your counts, the relevant triggers for starting treatment are platelets dropping below 100 and continuing to fall, haemoglobin dropping below 100 and lymphocyte doubling time under 6 months when it climbs above 30, so you are good. That's why your consultant only wants to see you every 4 months. You can use a spreadsheet template to track your trends if you wish per this post: healthunlocked.com/cllsuppo...
Thanks very much Aussie Neil, this is all a foreign language to me mate, I cannot get my head round most of it, but enough to feel reassured.. Thanks again I really appreciate it. Ron.
I had to look twice to make sure it wasn't me that wrote your post.
My diagnosis date was February 18, 2018, and my white count (without looking it up) was around 15,000. It's growth rate into March 2021 saw numbers in the vicinity of 47,000. Then in October 2021 it balooned to 96,000, and by April 2022 it was back down to 57,000
I have had lumps on both sides of my neck for years now. They go up and down in size, depending on whether or not I am fighting something.
My fourth shot was about one month ago, and for the first time I had a big reaction. I never developed antibodies to the first three shots, nor did I have a big reaction to them. This time I had flu type symptoms, including fever that went to 103. I look at this big reaction to the fourth shot as a good thing, because it likely means I'm finally reacting to and getting a benefit from the vaccine.
I too have fatigue regularly during each day, with a bunch of aches and pains, but then again I just hit the three quarters of a century mark on March 30.
In essence you sound a lot like me, and I really think I'm doing great with this CLL. I consider the growth of the white cells, and the decrease in RBC and Platelets to be modest. Other than getting a little more tired than I used to, I am enjoying life. I hope it stays this way, and I hope I never see any treatment.
Thanks you so much for that info wizzard, I'm assuming you live in the USA, So the chance of us being twins is remote, though strangely enough we are both 75 years of age,
We also seem to be reacting similarly to this CLL of ours, and you do appear to have it under control and enjoying life.
You sound like you may also be a 'Bottle Half Full' person, like myself, another similarity if true.
Either way your post is somewhat reassuring to me,and I thank you for that. Do keep in touch by e mail if you wish, fine by me. All the best. Ron
Great post, great questions V … the CBC numbers and learning the critical ones can be daunting and take time. One of the best things I’ve gotten from this forum is a better understanding of those numbers, which ones to follow and what numbers (or more importantly doubling time of ones) that tends to indicate treatment time.
You’ve gotten great replies about your numbers V and hopefully those replies help.
Sounds to me (but I’m no doc) that your still doing pretty good in W&W… hopefully getting best out of life, like the “Wizzard166” is good at!
This CLL journey, I’ve learned entails patience and and an appreciation to live life best we can, while we can! Hang in there V. 😃
Thanks so much Pin57, yes you are right about the value of this Website, it really assists us in so many levels, the' Bloods' interpretation, being a case in point.
I suspect that you, and Wizard, Sofia Deo, and Aussie Neil, are all, 'Bottle Half Full', people, as I am (I like to think. Stay safe and well, Ron
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