Increase in WBC: I was diagnosed with CLL in... - CLL Support

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Increase in WBC

tyke3poppy4 profile image
5 Replies

I was diagnosed with CLL in 2010 and have been on Watch & Wait since. My WBC has regularly been 30+. I also have rheumatoid and osteoarthritis and in 2017/18 had 3 courses of Rituximab which put my CLL in remission. Blood test July 2017 WBC 9,3 . LY 63,9 and PLT 141. November 2019 WBC 16,0. Ly 71,5 and PLT 166. Blood test this week WBC 32,5. Ly 83,2 & PLT 127. Should I be worried? I don't want to go to the hospital to see my Haematologist because of COVID. I also have an additional slightly enlarged Lymph node in my neck. Does anyone have any advice please?

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tyke3poppy4
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cajunjeff profile image
cajunjeff

One possible trigger for treatment for Cll is if lymphocytes have doubled in six months, which yours have roughly done so. Another possible trigger is platelets falling below 100, and yours appear to be trending that way, although okay now.

So if it were me with these results, I would want to see my doctor. Your results are not dramatically different, so it’s quite possible your doctor might want to monitor you longer or perhaps do labs more frequently to stay on top of things.

I am continuing to go to my doctor appointments as where I am, despite many in the general public not being safe, doctors offices and hospitals here have very strict protocols to protect patients, doctors and their staff. I do not know if telemedicine is on option for you to visit your doctor. But for the doctor feeling for nodes, there is nothing about your appt that needs to be in person.

Another option, which I don’t know is available to you or not, is to simply call your doctors office and asked if he has reviewed your results and would want to review them with you. Your wbc is still relatively low and he might just want to wait to see what happens with your next labs.

tyke3poppy4 profile image
tyke3poppy4 in reply tocajunjeff

Thank you so much for your reply. I am British but live permanently in Greece and although the Government moved very quickly in March when we had the first Covid case, the figures are now rising dramatically. I have been so careful since March and really do not want to risk anything at the moment, so, I think I will ask my doctor for another blood test which I can have done locally and keep an eye on things. The only time my WBC has been over 50 is when I have infections - which I have quite regularly.

lankisterguy profile image
lankisterguyVolunteer

Hi tyke3poppy4,

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Your experience sounds very like mine from 2008 to 2012. I had 7 Rituxan infusions in 2010 that put me in remission (my WBC started at 255 and ALC at 247 and droped to WBC of 2.2 with ALC of 0.8). (I suspect you are in the UK and I'm in the USA, since we have the opposite use of commas and periods in numbers and you have one more A in Hematologist than we use).

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You may want to arrange for a telephone consult with your Haematologist to review your blood test results (I suspect the blood was drawn at your local GP surgery?). From the numbers you posted it does not sound like there is anything urgent, but having the doctor confirm that might help you feel more comfortable.

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I suggest you track your ALC / Lymph# and ANC / Neut# instead of using the Lymph% - as your WBC moves around it is important to see the ANC / Neut# stay above 1.0 The Lymph# / ALC will climb as your CLL returns. But from your history that may be a long steady climb over months and years.

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Your Haematologist will likely keep an eye on your platelet number as it dips towards 100, and look for your Haemaglobin number to go below normal. He/She will ask you about any other "B" symptoms in addition to tracking the sizes of your neck nodes.

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Please reply to this if you have addtional questions. One of our Admins and one other volunteer know the UK lab systems and medical proceedures much better than I do.

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Len

tyke3poppy4 profile image
tyke3poppy4 in reply tolankisterguy

Thank you Len. I am from the UK but live permanently in Greece, so things are not easy for me at times. Thank you so much for the advice. I will certainly look at all my numbers. The problem is that my blood tests are in Greek but I'm sure if I scanned them and sent them to Admin, someone could look at them. There are times when I feel very isolated as we live in a rural part of Greece. I have a good haematologist at a hospital about 30 miles from me but all the specialists are in Athens, which is a journey I do not want to make with Covid numbers increasing like crazy since they lifted lock down, opened the borders and started letting tourist in!!

roszika profile image
roszika

I suggest you contact your haematologist. Here in Melbourne we are doing telehealth consultations. Perhaps the doctor will want to do that instead of going in physically to see him. You asked about Rituximab. I had 6 monthly infusions from May to November 2019. I had very mild side effects first time then I was fine for the other 5. By November I was in complete remission, MRD zero and have remained so as I had a blood test 2 weeks back and am on my Veneteclax for another 9 months having commenced early april 2019. Cannot suggest anything else but do not let the worry of covid stop you from consulting your doctor over your last results- your priority is not to get worse with the CLL because if you neglect this and you were unlucky to contract covid you would be a lot worse off than if you kept your cll in check. Good luck

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