16 months and WCC at 58

[Larkfield-UK]

Hi all, recent counts Hb 133; WCC 58; Platelets 188; Lymphocytes 55. did anyone go on treatment at this stage as doctor said possibly in 6 month’s time for me. Your info would be appreciated. Regards

[MsLockYourPosts Passed Volunteer]

Those numbers don’t seem extreme, but you didn’t mention other factors like lymph nodes, spleen, deletions (from a recent FISH test) or related symptoms. It’s always good to get a second opinion when treatment is on the table. In your position I would ask the doctor for his reasoning. There might be a good one that we would miss, not knowing your case or being medically trained.

[Larkfield-UK in reply to MsLockYourPosts]

Thank you for your reply. It would be nice to see the same consultant each time but we don’t and it’s hard to get a full picture. Kind regards

[JB656]

I could be due to start treatment but my Hb 111 and total WCC of 72.5, but my specialist said its not really about the blood results its more about how you are feeling ,like your energy levels and if its affecting what you capable of doing or if your lymph glands are getting large and becoming uncomfortable. I hope this helps and understand that some doctors are really poor at any type of explanation, I changed hospital and it was the best thing I did as I got explanations and could ask questions and now I am quite relaxed about the whole CLL thing but this Coronavirus is a bit of a worry

[Larkfield-UK in reply to JB656]

Hi There we didn’t know that thanks. My hubby feels well and has one small enlarged node which is hardly noticeable and it’s been like that 18 months. He gets tired by end of the day but he’s a builder so works on his feet all day. Best wishes to you and your struggles .

[Smakwater]

Larkfield-UK,

I was treated with blood levels being relatively low in comparison to many, however as JB656 mentioned, there is more to be considered. One of the prominent measures in rai staging is doubling time.

Although my lymphocytes were around 60, my doubling increased significantly over a three month period compared to my three year trend. In addition, I developed fatigue so severely that I was almost debilitated, and unable to walk 3/4 of a mile with great effort.

JM

[JB656 in reply to Smakwater]

Exactly what has happened to me a near doubling over 3 months and a trebling over 10 months and I now I feel fine but my energy levels have a limit, I can still do most things but then when I start to tire its like hitting a brick wall and thats it I need to stop for the rest of the day and go and sleep, and I can do that easily. I am okay again the next day but if I have really over done it my energy levels are not upto normal but okay after a couple of days taking it easy

[Larkfield-UK in reply to Smakwater]

Thanks Smakwater my hubby is Stage A still and like you gets tired quickly. Onwards and upwards he just keeps going. Best wishes

[Smakwater]

We are all a bit different, and we need to work closely with a doctor while listening to our bodies.

With the newer treatments in contrast to FCR, I am almost persuaded to say that earlier involvement may be an advantage for some with regard to quality of life. I actually expect to see the medical community giving consideration to it as well.