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