WBC

[Suzer1553er]

I think you’re the gold medalist. I once asked my oncologist and he said the highest WBC he had ever seen was 350,000. So good luck with everything! Happy New Year.

[Jm954 Administrator]

Hi

Are you repling to HOSS10 suzer1553er?

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[moty3012 in reply to Jm954]

this is not the highest.

i was hospitalized on Dec 2nd with 750,000. and this was the highest any of the doctors saw.

Don't go this high. it contains real risk to your life.

it was part of Imb. side effects to take the cells from the nodes to the blood stream.

now, i am on 160,000 and my doctor say that i am on track with the pills.

BTW, he reduced dose to 2 pills a day.

[AussieNeil Partner Administrator in reply to moty3012]

CLL cells are small, so counts higher than yours are seldom dangerous. That's not the case with other leukaemias/lymphomas.

Neil

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[Suzer1553er in reply to Jm954]

I’m replying to all. Thanks.

[cajunjeff]

I would think most Cll specialists who see lots of Cll patients would see many patients with counts over 350k.

Some doctors might not see people over 350k wbc because they are using wbc as an indication to treat and their patient’s wbc do not get that high. Some general oncologists might not see all that many Cll patients in their practice.

I remember freaking out at diagnosis when told my wbc was 55k. The oncologist’s assistant I saw that day told me, trying to reassure me I am sure, that they had people with 500k wbc still not treating. I started treatment at 220k, but my wbc was not what triggered treatment.

[Justasheet1 in reply to cajunjeff]

With SLL, you also might see lower numbers and still need treatment though. I know CLL and SLL are essentially the same disease but just a different presentation.

It’s hard to ignore the elephant in the room when your CBC comes back but as long as I feel good, it’s just a number for the white coats (Thanks for your term, Scott).

Jeff

[Suzer1553er]

Thanks all. I’m the tech deficient with CLL for 11 years and also with an 11Q deletion. After a few years of watchful waiting I was treated with the FCR protocol. It was successful for a few years until disease progression required Imbruvica for a few years. This was supposed to be a lifetime maintenance treatment but after a few years was no longer effective. Four months ago my oncologist started me on Venclexta. Those that are on this drug know there’s a 5 week ramp up leading to a daily dosage of 400 mg. After reaching this dose I had to be taken off it because my WBC went down to 1 and hemoglobin was down to 8. So after serious fatigue and anemia they restarted the Venclexta at 200 mg daily. I’ve also had 3 of 6 scheduled Rituxin infusions. Now my WBC is slightly below normal and platelets are at 73. Also for the 1st time ever I’ve developed large swollen neck lymph nodes. So last week I had 4 CT scans-neck,chest,abdomen and pelvis. I’m still awaiting those results. Well thanks for reading and I hope everyone feels better in 2019.

[Suzer1553er in reply to Suzer1553er]

I am Suzer1553er