CLL diagnosed 10 Years ago!

[Candy1015]

Does anyone have a WBC over 200,000 and is still on w & w with no other symptoms...oh i did need 1 pt. Of blood 6 weeks ago.

[Feelsolow]

My wbc is around 230000, all my other blood is OK according to my doctor, who I had a phone consultation with yesterday...i still work 5 x12hr shifts on construction sites laying kerbs and using jack hammers, etc, proper physical job. I'm 50 yrs old in 10 weeks . Hope this helps. Im in the UK .

[Hcctherapy in reply to Feelsolow]

4 years and 200k plus.

[RobertCLL]

What was the reason for the pint of blood, low HB?

[Candy1015 in reply to RobertCLL]

HB 8...might have to get transfusions every 2 months?? Doctor says im losing blood because of my bone marrow....don't really understand all this..will be 82 this year. . Ty for responding...

[PlanetaryKim in reply to Candy1015]

Being transfusion-dependent due to CLL (which is what you are describing) is usually considered time to start treatment. The CLL cells are occupying so much of your bone marrow that there isn't enough marrow remaining to produce your normal amount of red blood cells, hence the need for periodic transfusions.

Are you seeing a CLL specialist Candy? If not, this would be the time to get one.

Good luck to you. and please keep us posted.

kim

[RobertCLL in reply to Candy1015]

I struggled to walk with a HB of 10, you must be exhausted.

[Hidden]

Lived quite happily with WBC at 265,000. Didn’t know I was tired until after treatment! No ills. Treated because my HB was trending down below 10 for over 6 months.

[Candy1015 in reply to Hidden]

Ty for responding...feel better knowing others have high wbc...

Doctor said i might need another blood transfusion in June..

Didnt want to go in anyway with this C-19 raging.

[LovelyLilyGirl]

My wbc was 250k in February (after 10 years). Hemoglobin, red blood cells, platelets were within normal range but continuing to trend down. CLL was starting to win.

So I started treatment in March. All is going well and my numbers are now within normal range. I was not experiencing any symptoms but with my WBC getting so high and the other numbers trending down, it was time to start. It was almost a relief to start treatment because I was tired of the mental strain of Watch and wait

I’ve done 5 Gazyva infusions (4 more to go) and am on week 2 of Venetroclax.

Best to you

Sally

[Lovely67 in reply to LovelyLilyGirl]

Hi Sally, all the best for your treatment and symptom/problem free CLL remission. Do you have mutated IGHV or unmutated and any other markets such as TP53 mutation?

[LovelyLilyGirl in reply to Lovely67]

I am 13q unmutated. No other markers. Dr said the unmutated status isn’t as important now with target therapies. I’m hoping so. I was symptom free for years except a rising WBC (got up to 250k). Best to you

Sally.

[Drayton1]

I get the prize here- over 300.000 and still on w and w. But now on monthly blood tests as HG is dropping. I have been very lucky to be symptom free for 8 years, but treatment is coming soon I suspect.