Highest white blood count: I have had Stage... - CLL Support

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Highest white blood count

HOSS10
HOSS10

I have had Stage 4 CLL at least 8.5 years. My white blood count was 658,000 has anyone else had this high of a white blood count?

34 Replies
oldestnewest

Wow..that is very high. Never had treatment? Any other symptoms...nodes, enlarged spleen?

Mine was 225k before treatment.

AussieNeil
AussieNeilAdministrator

The record as far as I know is 1,400 (thousand), reported by Dr Tom Kipps. See: healthunlocked.com/cllsuppo...

I think you may have the consolation prize of one of the highest in our community however :)

Neil

I had 697,000. Started imbruvica end of September 2018. Last blood test wbc 387,000.

J_88
J_88
in reply to Ginajetta

wow that drug works good. Any side effects?

Ginajetta
Ginajetta
in reply to J_88

So far so good. I have some petechaes on legs, bruise easily if not careful and heartburn especially in the beginning of starting imbruvica. Doctor started me on 280 mg because of my many drug sensitivities. My hemoglobin went from 6.5 to 10.1. I get blood work next week and hope counts continue to improve. I’ve had more energy and my spleen and lymph nodes shrunk within weeks. Wish you the best.

J_88
J_88
in reply to Ginajetta

What markers do you have?

Ginajetta
Ginajetta
in reply to J_88

I do not have good markers. CD38, unmutated IVGH, trisomy 12+ but was able to stay on watch and weight for over 11 years. I was fortunate enough to see dr kanti rai after 3 other doctors wanted me to start treatment when i had it only 3 years. Dr Rai was excellent said as long as I felt well just do watchful weighting because new drugs coming down the pipeline. He told me that in 2011. Only treatment imbruvica started end of september 2018.

J_88
J_88
in reply to Ginajetta

Good to hear.

J_88
J_88
in reply to J_88

Did you have any symptoms on watch and wait over the years?

Ginajetta
Ginajetta
in reply to J_88

Yes. I would get tired, sinus issues because turbinates in nose very swollen, enlarged spleen. Uncomfortable and painful at times when i bent down and sometimes when i laid on my left side, lymph nodes enlarged in neck, under arms, along sternum. No fevers or drenching night sweats.

J_88
J_88
in reply to Ginajetta

Could you feel the enlarged nodes?

Ginajetta
Ginajetta
in reply to J_88

Yes nodes very visible in my neck do 10 years and could feel underarms. Also spleen enlarged oover past few years. A few months before starting treatment I had some night sweats and would have a day here and there like I was getting flu, no appetite and lost about 15 Also extremely tired and barely felt like doing anything. I woukd say this was four months before starting treatment.

J_88
J_88
in reply to Ginajetta

What did your spleen feel like when enlarged?

Ginajetta
Ginajetta
in reply to J_88

When spleen enlarged it felt uncomfortable and sometimes would have pain even leaning forward while sitting. Would have pain lying in left side. Became full easily or just uncomfortable after eating especially uf I ate a little more. Riding in car going over bumps i would feel discomfort and sometimes pain.

Confused a little as to just how to define 'drenching night sweats'.I am newly diagnosed and so learning as I go. I do get warm at night and sweat around my neck and upper body but don't know if that could be described as 'drenching sweats' this I have done for years since my menopause. My only real symptoms are my enlarged lymph nodes in my neck which come up and go down. My next appointment is 14th January so I will check then.

Cllcanada
CllcanadaTop Poster CURE Hero
in reply to kitchengardener

If you need to change the bed linens and night attire then they are drenching.

Not very likely in early stage CLL

~chris 🇨🇦

What Cllcanada said describes drenching night sweats.

You will definitely know when you have one of those night sweats-nothing like menopause ones as you truly wake up suddenly feeling like someone dumped water on you. It was very weird!

Ginajetta
Ginajetta
in reply to J_88

Thanks. Praying it continues to go in good direction.

Kokobean
Kokobean
in reply to Ginajetta

This is really encouraging. Thank you.

Yes I did too had trisomy12 unmutated was in a clinical trial Ibrutinib Obinutuzumab when I was down to 60000 Venetoclax Im MRD negativ bone marrow clean no more medication just checkups

fell
fell
in reply to mickimauser11

Congratulations micki! How long were you on the trial before you got to Mrd-?

mickimauser11
mickimauser11
in reply to fell

from May17 until January10 2018

fell
fell
in reply to mickimauser11

Wow that’s awesome! I’m on an Ibrutinib /Venetoclax 15 months fixed trial and got to CR (1/1000 detectable cll via flow cytometry) after 8 months. I finish the trial in 3 months and hoping to be mrd- by the end of it 🙏

mickimauser11
mickimauser11
in reply to fell

Mine was supposed to be12 months Otters were scheduled for 15 keep me posted wishing you all the best iit is a good combination

fell
fell
in reply to mickimauser11

Thanks, will do 😊

What are your markers HOSS10?

Hi,

My oncologist once told me that he has had patients with white counts of two million.

Sushibruno
Sushibruno
in reply to Mos1

😕😬wow

mickimauser11
mickimauser11
in reply to Mos1

No red blood cells left

No Hoss, mine reached 250,000 and swollen lymph nodes, then had to get treatment with gazyva course which am now on. First treatment reduced me to below the low count scale and had to have 4 days booster injection, before the second dose of intravenous. No side effects so far and will be into stage 2 very soon. Check out Gazyva for CLL.

Hidden
Hidden
in reply to vulcan65

My husband got a little over 2 years after Gazyva-Chlorambucil treatment free but I think it could have been much longer. All the best.

I was in the 500K range with night sweats (I'd put down a towel to sleep on to soak it up), with fatigue in the daytime and sudden weight loss. Then i was checked into the hospital for a week and a half to start fludarabine and also given 6 bags blood transfusions for anemia, then 4 more bags of blood over the next two months. On imbruvica now.

I am wondering why my WBC always stayed normal or lowest was 2

On imbruvica since February 2016

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