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CLL Support Association
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A CLL conundrum

I recently had to stop my Ibrutinib for three weeks while I was in hospital having surgery in the form of a total hip operation. I was expecting, following the operation and three weeks off the drug to be back where I started two years ago or almost as I had heard that continuity in taking Ibrutinib was important. My levels prior to the operation were WBC 12 , platelets 150 and HG 160.. Following surgery these had fallen a little for two or three days but the WBC had gone down to 4.5 , the platelets have doubled to 350 and the haemoglobin is almost back to 160.. Can anyone offer an explanation for this apparent good news bringing all my levels within the normal range. The only downside to this is a DVT requiring a high dose of blood thinning but I am compensated by a successful operation long overdue as I had been on sticks for thirty years, I am now planning all the things I could not do including playing with the grandchildren and even a simple walk down the lane.

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Great to read your news and that you have had your op and will be more mobile again soon. Sorry to read of your DVT complication though. Have you spoken to your CLL specialist? I hope this clears up soon.

I recall conversations in the forum of platelet issues and that Ibrutinib may also lower platelets. Your clinicians will be monitoring this.

When living with an inflammatory issue our body's natural response causes WBC levels to remain higher than normal, could the hip op have removed some of this and allowed your WBC levels to settle back? Our bodies do respond to physical insult (operations etc) in many ways this I believe can also affect platelet levels?

I would talk to your doctor for an explanation , they will know all your history and specifics.

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Thank you Neil and Hairbear for your comments. I will talk to my GP. On Monday I had two appointments on the same day for an Orthopaedic check up and my trial check which is now every two months, this included bloods, X-rays and Ultrasound scans to deal with the DVT and then more discussions to decide what to do, a long day, eight in the morning to nine at night. Every one was very pleased except for the clot but in noting the blood levels I believe the Neutrophils were now three.

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The healthy range for neutrophils is from around 2 to 8, (depends on the laboratory), so you are in excellent health blood wise. I hope that after Monday you are even more reassured that your health is definitely on the improve. Also, I hope you have someone with you to help you take in all that is discussed; as you note, it's going to be a long day (but definitely one full of encouragement).

Neil

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Great news indeed! For some time you must have been wondering whether your CLL was going to dash your hopes of having that long needed hip operation, even with the Ibrutinib, so it really is fantastic that you are now able to plan on being much more mobile.

With regard to your apparent conundrum, I rather suspect that your lymphocytes haven't changed that much between your prior and post operation White Blood Cell (WBC) counts. As you've happily noted, your WBC is now in the normal range. In a healthy person, about 60% of the WBC is neutrophils (and I suspect that it is a significant fall in these that is responsible for your new low WBC).

Lymphocytes make up roughly 30% of a healthy WBC with the remaining 10% comprised of Basophils, Eosinophils and Monocytes. Of that 30% lymphocyte contribution to your WBC, about 15% are B - Lymphocytes, so in someone without CLL, B-Lymphocytes are only a small fraction of the total WBC. If you had been tracking your ALC, I don't think you'd having this conundrum :) .

This is why you so often see statements on this site about tracking your Absolute Lymphocyte Count (ALC) , not your (WBC) count!

Neil

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Dear Berrytog,

So pleased to learn that at last you have had your total hip replacement and also that being off Ibrutinib for 3 weeks does not appear to adversly affect your blood results. In fact things seem to be on the up, apart from the clot. I had been thinking of you and hoping the operation went well and that your wife was well cared for, as I know this was a worry to you.

Hopefully the team will get the clot sorted. When next I see you I expect you to be skipping up the ward! I am on 3 monthly visits and my next is n August so it will be a while before our appointment day coincides!

Best wishes. Take care from J.

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Thanks J for your kind words. I am skipping around the garden albeit on one stick, they tell me to use two to balance up but one gives me a spare hand to do things, in fact using two sticks is depressing as I have to rely on others but I am at least back to where I was before the Op and able to carry on my duties in the house, cooking etc and not having to wait for the gardener to turn up before the pots get watered. I am now making plans for all the things I have not been able to do and plan to cram the next few years into one to make up starting with major projects in the garden.

My visit last Monday was very encouraging with all my levels now normal and the hip X-rays showed promise, the only downside being the clot which is now being treated but it was rather frightening to to come in from a walk and see my foot and lower leg blown up like a balloon.

I hope you are still doing well on your ABT199 and looking forward to continued success.

Roger

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Dear Roger,

Just a note to say all is well with the ABT-199 trial. One small glitch - I was in Bournemouth Hospital recently for a few days. Great liason with Kings and I saw Prof D last week. It seems, I may need an operation to remove Gall Stones or the Gall Bladder but will know more soon. Not in pain now. Bournemouth Hospital very good. Luckily problems came up at the very end of a lovely holiday in the New Forest.

Best wishes. J.

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