these are my numbers on 05/09/2020
I diagnosed B-CLL almost 7 months ago. I'm on W&W. my oncologist said I should be in this stage until my platelets and hemoglobin come under 100 and 10 then using drugs. Nodes under my arms have not become extremely large yet. no other symptoms.
Question: is there anyone who has my signs and is similar to me? please comments and tell me what should I do now?
Hi Mazaheri,
Your labs look to be not too much to worry about. We are all a bit different when it comes to our cll and our symptoms might be a little different also. That's great you are not suffering with fatigue and night sweating.
Anxiety is something most of us have to live with. My advice is for you to eat healthy and do some form of exercise daily. If you ever need treatment some day, there are some good choices to choose from. 😀
Win
you are at the early stage of CLL. Numbers look great, no worry at all. While waiting, please follow these tips and learn CLL as much as you can.
Hi Mazaheri,
As others have replied, your blood test results are not a concern for someone with CLL. As expected, your lymphocyte count is elevated and it is not unusual to have a lower than normal platelet count.
With CLL, we learn that it's the trends that are important, not levels that are high or low on a blood test report. CLL specialists reinforce that by saying that " We treat the patient, not the numbers". This post contains references to some spreadsheet templates you can use to monitor your trends.
healthunlocked.com/cllsuppo...
Neil
Further to Neils point, you can compare your labs today to when you were diagnosed. If your wbc has doubled since then, that could be a sign you are nearing treatment.
But if your wbc, platelets and hemoglobin have not changed much, that might be an indication you have slow moving Cll and could be many yrs from treatment. Even so, I might not read too much into labs over 7 months. Trends are more easily discovered if you have a couple yrs of data.
If you have had FISH test, those results might also help predict how your Cll will move.
Just as a snapshot in time, your labs look good for someone with Cll.
Hi Mazaheri, I've been on W&W for nearly 8 years now, my readings were similar to yours at the start. I have regular blood tests every 3 - 4 months, my readings initially gradually increased, then dropped slightly, then increased again going up and down over the years to double the initial at present. I tend to get on with living and don't worry or think about it the majority of the time. I eat and drink well, exercise by playing golf 2 or 3 times a week or did before this pandemic hit us. What I am trying to say is enjoy life and take each day as it comes. Good luck hope all goes well for you.
My understanding of Btk inhibitors is that the therapy should begin earlier because it prevents you from getting sick. and different from chemotherapy you don’t have just three shots and then you’re out
Hi Mazaheri, my numbers are similar but my wbc was about 42 two mo ago. Like you I have a lot of anxiety about this. I am followed by a hematologist in SC. I have some skin issues I feel certain because of the cll and wrote a note to the doctor at MD Anderson where I was diagnosed and now shw wants to see me to do the scans and blood work. It's a long travel and ordinarily I wouldn't mind it but have fear due to the pandemic. I would have to stay overnight at the hotel and will be exposed to a lot of people. I don't know what to do. Any suggestions anyone? Thanks
Hi G man thanks for replying. I am followed by an oncologist in Iran. My country is in sanctions & we have a lot of trouble in this country for drugs & insurance. Your numbers isn't very high. In my opinion you can delay your trip for pandemic but consult with experts.
God bless you
I have been on W&W since 2001 just waiting for my blood results,nearly 82 now, as long as readings are within range,don’t think I want to have any treatment in these trying health times
I would say try not to think too much about symptoms, Take care of your diet you can reverse it with a strict diet and exercise.
Plenty of info on this site,too much sometimes!
Good luck
thanks carole very useful massage. pls explain what exercise can l do?and explain about diet please.
good luck
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