Hi all, l have had cll for 2 years, on watch and wait, would like to know how high wbc goes before treatment 🤔
Feavers : Hi all, l have had cll for 2 years, on... - CLL Support
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AussieNeilPartnerFounder Admin
There isn't a number as explained in this post: healthunlocked.com/cllsuppo....
Neil
Thanks mate very helpful 👍
My blood count is over 200. All bloods within normal limits. Immunoglobulins quite low. Below normal . Been neutropenic but ok now. No treatment and feel fine. Lots of nodes everywhere not too large. No spleen or liver enlargement. Doc wants me to start Imbruvica because of waiting might cause kidney damage. Tumor lysis??? Do not know what to do. Have twiceturned down treatment. No symptoms.
Also, no doubling in a year.
Tumour Lysis is rare with Imbruvica, but kidney involvement can definitely occur with CLL, as MsLockYourPosts can attest. The risk of kidney damage should be reflected in worsening kidney function test results in your blood biochemistry tests. Have you asked for a second opinion?
You don't want to delay treatment too long if it is becoming necessary. You need sufficiently well functioning kidneys to protect your other organs from the impact of the treatment drug and the dying CLL cells.
Neil
Hi quick one, do sore throats last longer with cll
They can, as can recovery from illnesses, depending on how CLL (and treatments) specifically impact our immunity and degree of immune compromise. We tend to have different areas of immune compromise, respiratory, skin, UTI, bacterial, viral, fungal...
Thanks Neil
NewdawnAdministrator
Welcome to the site Feavers, I see this is your first post. As the helpful link explains, CLL isn’t just a numbers game and the more important lab result to track is your ALC (Absolute lymphocyte count) but not the percentage, the absolute number.
Doctors rarely get excited about an ALC under 30 and trends are important, particularly doubling rates within a 6 month period.
How you’re feeling, your haemoglobin/red blood count and platelet levels are important too as are troublesome swollen nodes and spleen should you develop them.
Best wishes,
Newdawn
Thanks newdawn very helpful
Hi Feavers
Hope your well , it really does vary from person to person and the reasons why treatment is needed . My last count before treatment was 283,000 I know one or two who were even higher , my other blood counts were always with in range , sometimes the white bloods cells can crowd out the other blood cells such as red blood cells or platelets and they decrease but its not always about how high the counts is your consultant will keep an eye on how quickly it increases and what the doubling rate is but you can need treatment when it's a lot lower , so it's not always about how high or low your WBC is , you may be experiencing other B symptoms or frequent infections
Hope this helps a bit but do check the link AussieNeil sent you
All the best and stay safe
Stewie
Thanks for the response, have seen the assie page, l would like to know some one near me to talk to face to face going through the same thing but have a feeling that won't work 🤔👍
What is your count and are you experiencing any symptoms at the moment ?
Stewie
Count is 15 wbc, and no action so low I think but was 8 when diegonesd
Well 8 is with in the normal range and if it's now 15 which is just over the range and you were diagnosed 2 years ago ? Are you sure that's correct , I know it's not always about numbers .
If it is correct and your not experiencing any other symptoms like infections , any enlarged lymph nodes etc don't worry about your WBC that's really low and with in the 2 years it increased to 15 . If you don't mind me asking what was reason behind any investigations before the diagnosis
But any concerns ask your consultant next time and have some questions written down before your appointment
Leave you in peace now 😃
Okay got the paper work out, latist is wbc 17.2 and lymphocyte 12.6 would love to know what that means, sorry new to this
After 2 yrs it means you’re doing exceptionally well with very low levels of WBC & ALC. Obviously higher than norm which would be max 11 for WBC and 4.8 for ALC but still ‘on the nursery slopes!’.
Newdawn
Hi Feavers, if you click on your profile, there is an option to ' find people near me'. This would be a way to find people local to you, to chat with. Hopefully you can find/ message someone that way. We all used to find the CLLSA conferences so useful for that, maybe the new vaccine will allow us all to meet face to face again soon 🙏🏼
There is also a number on the CLLSA website that you can use to phone and have a 'human' conversation with. Often our doctors don't have the time to spend explaining our individual results and it helps to speak to someone who has volunteered their time to do this. It looks like you are at very early stages, so you likely will have time to acclimatise to this, I didn't understand anything when I was diagnosed, as I had never had a blood test before. It's surprising how quickly we learn!!
Your not wrong, but thanks so much
You should be fine. My WBC has ranged from 50-90 for 15 years and have never had any treatment
Hi feavers I probably one of the last ones one this forum and me too been on W and S but recently i start Ibrutinib, 3 weeks on this treatment and my WBS is 400000 per sample, but what make me start this treatment was my lymph nodes that are very enlarge at neck under armpits and the spleen about 7cm bigger than normal, and if your numbers are at a bit above of the normal and no life tretning lymph nodes, then don't worried, best of health from Portugal.
Hi Feavers, I was diagnosed with cll 10 years ago, the count was 13000 WCC with marked leukocytosis. Started treatment 3 weeks ago with WCC 140 000, very enlarged spleen and dropping platelets (80 000). Decision for treatment depends on how you’re feeling ( sweats, tiredness, infections), time of doubling of WCC, presence of enlarged spleen and /or defanging of Haemoglobin and platelets count. Don’t worry and try to be happy and joyful. The stress is not good in our situation, xxx
Temida
I agree with the remarks made by others; there is no WBC threshold. My mom was on W&W for 3 years; the oncologist specialists look at many factors: decreasing RBC, Hemoglobin and platelet counts, etc. In my mom's case, the WBC climbed to over 250,000 before a decision was made to start Calquence. She responded very well and within 8 months her WBC decreased to 12,000 and her Hemoglobin has increased over 10%. Since this is a disease with no cure, it is a constant management of risks and rewards. Stay safe, avoid falls or bleeding wounds. If your platelet counts are decreasing, you will become more vulnerable to not healing as quickly as you used to.
Thanks for that, I definitely don't want to fall, I am a window cleaner 😆
That is the funniest reply I have seen! I always say enjoy your life and let the doctors sort you out.
It is likely to be a long time before you need treatment. Treatments will be even better when you need them. Anne uk
My WBC was over 300,000 when I started but the trigger was all about my low and continuing to fall hemoglobin.
Hello, I’ve been on watch and wait for 17 years. I’m aged 61. Lymphocyte count has bumbled along , generally slightly up and sometimes slightly down. Started at 11.7 , Last result was 21 ish. Highest 23.2 lowest9.7 . I wish you all the very best.
After 14 years, my WBC was 340,000 and ALC 291.20, I started IB, not because I felt bad and I have no palpable lymph nodes, but the last few months it started increasing faster. I quit it after 1 year in March from a-fib but have started nothing else. The number shouldn't matter, how you feel and other things all factor in.
