I am caretaking of my wife as she is a CLL patient and she was diagnosed in November 2020. In the beginning, I was totally lost in this CLL journey as I was not familiar with this disease so searching for information and I found this site which is excellent to discuss as well as to share experiences. We live in Ontario, Canada and we have not been able to meet a Hematologist personally and discuss. We got only telephone appointments so this forum is becoming, my Guru! Today I would like to share the CBC result of my wife and ask specialists, CLL fellow, experienced fellows as well Hematologists to comments and share their experiences. I am not aware I can share this here?
date
2020-08-25 WBC 17.9 Lymphocyte 12.8
2020-9-16 WBC 18.3 Lymphocyte 12.1
2021-02-20 WBC 22.9 Lymphocyte 19.0
2021-09-04 WBC 31.4 Lymphocyte 24.7
2021-10-30 WBC 30.4 Lymphocyte 23.7
2021-10-30 WBC 30.4 Lymphocyte 23.7
2022.01.18 WBC 36.3 Lymphocyte 30.1
Until now RBC, hematocrit, MCV, RBC distribution, platelet count, mean platelet volume, Monocyte, Eosinophil, Basophil, Hemoglobin are normal. Similarly, smear platelets and smear RBC are normal. She is physically active but says her left arms getting pain. Our hematologist said 0 stage and W&W stage. we are wondering why she is feeling pain even physiotherapy did not help her. We are expecting feedback upon the CBC as WBC and Lymphocyte are increasing? Can we estimate whether it is fast or slow progression? To get a second opinion from a CLL specialist we have booked for March 21, 2022, only.
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Sagarcanada
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Your wife has just reached the absolute lymphocyte count (ALC) threshold (30), when specialists become more interested in monitoring lymphocyte doubling time. It's when that doubling time becomes less than 6 months that specialists look for other confirming factors that treatment should be started. Currently her lymphocyte doubling time is around a year. That's a moderate degree of progression, but it could slow over time and her ALC stabilise. We do have members in our community in watch and wait with ALC results in the several hundreds.
That her other blood counts* are normal is encouraging. This and a difference of around 6 between her WBC and ALC means that her other white blood cells, primarily her neutrophil count, are providing her with good protection against infections. This and other factors, such as whether she has developed enlarged nodes, spleen and/or liver influence whether she is still in stage 0.
* With respect to protection against infection, it's helpful to know her immunoglobulin counts (IgA, IgG and IgM). Just bear in mind that even with normal WBC and immunoglobulin counts, CLL affects how well our immune system functions, so there is always a degree of immune compromise.
So that leaves us with the unexplained, recalcitrant arm pain, which is unlikely to be CLL related, but I'm sure you'll follow that up at her CLL specialist appointment in March. You'll most likely come away with reassurance that your wife will remain in watch and wait for the foreseeable future.
Dear Neil,Thank you very much for your informative response. I appreciate your response. I look forward to seeing you with more feedback in the future.
The reply from AussieNeil is excellent. If you want to dig deeper and take time to learn lots about CLL, he has written an extensive posting that I believe is the equivalent of a freshman science university "101" course. Take a look at this, and use it as a syllabus for a few weeks or months of study: healthunlocked.com/cllsuppo...
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For lighter reading when the science gets overwhelming try these:
Note that since you are posting specific data on your wife, you may want to lock this post to be restricted to our community only. see #12b on the 12 Tips post above:
b) Posting securely - the following link describes the process. support.healthunlocked.com/... When creating a post, remember that the default setting for privacy is "everyone" - which includes the whole internet community. To “lock” your post and restrict it to this CLL community, choose “Only community members” in answer to the question “Who can see my post?”
All replies to a post are controlled by the privacy set by the person who wrote the original post. So if you leave your post “unlocked”, every reply you get in that thread will be accessible to internet searches. This will deter many people from joining the conversation, and you will get fewer responses. When replying to someone else, check that their original post is locked before you say anything too personal. Remember that a reply to an unlocked post may be found in Google searches and may even turn up in social media.
c) Changing privacy status on your existing post. If you accepted the default “unlocked” setting for your original post, you might later decide to change it, so more people will feel free to respond. To do that: (i) Go to the end of your post— select "More v" then "edit" from the dropdown menu. (ii) Scroll down to "Who can see my post" and select "Only community members" (iii) Close post by selecting "Post" at bottom left (iv) Check privacy symbol has appeared (little grey padlock)
I was diagnosed with CLL Dec 24th 2018. This journey can be very overwhelming for some if they go down the Google rabbit hole. My Wife does a lot of the research on me to see if there is something more she can be doing for me. But with this for the most all you do is live there is no magical site that will make it all go away(right now).
I want to give you and your wife a little different way of trying to navigate your way through this. I am a person that believes in controlling what you can and what you cannot do not let it control you. I have had a Cousin back in the late 70's early 80's that passed from CLL. BUT back then they did not have the tools they have now for treating this. My cousins Son has had CLL for about 12 years now and taking medicine and is doing just fine.
Now when I first met my Specialist Dr. Anthony Mato at MSKCC in NYC my WBC was at 54.2. Some visits it would go up few thousand some times little more. Without boring you with a lot of the other numbers I went into a W&W. In the summer 2021 I will still filling pretty good was having bed sweats(had those for longer then 2018) spleen was a little enlarged and 1 or 2 lymph nodes grew a little. In August of 2021 I entered into a trail at MSKCC at this point my WBC was 271.9. I am still going through the trail but my WBC is currently at 8.
Now as my WBC always went up I really did not have a lot of other issues with the rest of my counts. Where some may have more issues. Point being there are guidelines that will tell you so much and then there is you personal body. Depending on how your body reacts will be the other guiding force to how you are treated. Each case will have its own diagnosis and treatment.
The studies they are doing today will change the way things are done in the years to come. See what your Speaclist has to say and remember if not satisfied you can always find another one.
Till then don't stress stay out of the rabbit hole control what you can, do not let it control you and take your wife on a date.
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Input requested re: high lymphocyte, low ANC experience?
Bands cell count has been added to my CBC blood tests - Why?
Why we need to track the absolute lymphocyte count (ALC), not white blood cell count (WBC) to monitor CLL
