Feeling sick with worry - ALC & Steriods

Hi all

So, after my last round of concern for my dear dad and the mention of a Bone Marrow Transport was unfounded - the poor ol' chap got confused with Transplant and biopsy it turns out! Here comes worry round 2 (2 hundred more like!)

After receving the results from the BMB which is severe infiltration of the BM from the CLL a course of chemo was scheduled in for this week. Bendamustine for 2 days for 6 cycles. Dad has had FC twice before and is not a candidate for Rituximab due to a severe reaction. The consultant said the aim was to get him in remission again which was all positive.

Unfortunately dad's platelet count was way low as were his red cells, so they popped him on a short course of high dosage steriods. He's just come back from a blood test this morning and has been scheduled in to receive two units of blood (platelets as well) tomorrow and chemo has been rescheduled for next week.

And here's the worry and I suppose my question to you lovely helpful people. His actual lymphocyte count has gone from 81 to 239 in one week and his WBC from 84 to 245 in a week. Now I know I'm not a medic, but even I know this isn't good. I'm waiting for one of his fantastic CNS to call me back after she's talked to the consultant today. Is this as bad as it sounds, or could it be due to the steroids - has anyone had experience in this field.

I must admit, I'm as scared as I've ever been and am struggling to hold it together. I need to be strong as I'm his 'PA' as he tells everyone and I coordinate all info between the medical professionals, mum dad and my siblings. He relies on me and I'm crumbling.

Please help if you have any info

Best wishes

2 Replies

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  • Hi

    If he is on high-dose steriods, the white blood cell counts go all over the place.

    I have just completed a high-dose course to tackle auto-immune haemolytic anaemia - my spleen was attacking my red blood cells and the steriods stopped it very effectively. However I have just completed coming off them and I fear the spleen has resumed its mass red cell destruction as unfortunately resumed - I find out later today....

    During the first weeks (I had 6 weeks full dose and then about 2 months coming off them), my white cells, neutrophyls and lymphocytes all nearly doubled from measurements I have - indeed I suspect the peak happened between the two measurements first measurements (the second results a month after starting, so they might well have been a lot higher than double in the first week)

    So I suspect steroids will be doing this, not the CLL

    UPDATE

    I got new blood results yesterday - now 2 weeks off steroids. All white cell counts have plummeted to levels I have never seen (and healthy) - lymphocyte counts included!

    Amazing how quickly the body changes. You can not compare any white/red cell count during and pre-steroids. The really do increase wildly with steroids and it really IS the steroids, not anything else.

    Unfortunately though, without the steroids, my spleen has now resumed destroying my red blood cells....so probably onto the next attempt to stop this....

  • Dear Quarry. Thanks very much for your reply. Just got back onto the site and saw your update post - blimey! What a difference in your levels and you are the 'proof' of what the steroids can do to the counts. Thank you for sharing your experience. I am sorry that your spleen is not behaving and has restarted destroying your red blood cells. I would be very interested to hear how the medical professionals will tackle this for you.

    My dad started his chemo yesterday and seems to have perked up that he is actually receiving treatment as I think he thought he was too unwell for treatment. The two units of blood products last week really helped too, thought it wasn't as instant a 'pick up' as his first transfusion a couple of years ago. Day two today so another 5 cycles to go.

    Best wishes

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