Cll diagnosis

Hi Everyone,

Dx in Jan.2016 . Wbc 21 has now gone to 25 and 31 as of June. What can I expect . Am starting to worry?

[AussieNeil Administrator]

You are about to pass the threshold when CLL specialists actually start to measure your lymphocyte doubling time - 30. (You need to ignore the other white blood cells and only track your absolute lymphocyte count (ALC), which is typically 3 to 10 or so less than your WBC, so your ALC was probably around 25 last check.)

Read these reassuring pinned posts, which you'll find to the right (click on 'view 25 more' :

When to Treat: healthunlocked.com/cllsuppo...

When do white count numbers trigger treatment? : healthunlocked.com/cllsuppo...

Why we need to track the absolute lymphocyte count (ALC) not white blood cell count (WBC) healthunlocked.com/cllsuppo...

If you are otherwise well - no B symptoms, not anaemic, no large or problematic nodes, platelets satisfactory, etc, your ALC could climb 10 times or more and you could still be on watch and wait.

Neil

[Newdawn Administrator]

Joffre, it seems to be your WBC (white blood count) that you're describing and to be honest that small increase isn't massively significant because it could relate to an infection. The WBC can rise and fall dependent on a number of factors.

Do you know what your ALC (absolute lymphocyte count) is because that's a much more significant indicator of progression. How are you generally apart from feeling concerned about things?

Newdawn

[Hidden in reply to Newdawn]

Thanks Newdawn,

I have an appointment with my Oncologist today. Will ask that question.

Thanks for your reply. I live in Aussie.

[Hidden in reply to Hidden]

Hi Newdawn,

My oncolo said that my ALC was 28? Down from 31 in a month.

Does this sound right. I will have more blood tests in 6 weeks

[AussieNeil Administrator in reply to Hidden]

Ask for a copy of all your blood test results then we all won't be guessing. Your ALC of 28 is close to my estimate of 25 and importantly your oncologist says it has gone down, so your CLL seems to be stable.

Let us know about your latest results in six weeks.

( By the way, I was on monthly blood tests for ~18 months after my diagnosis over seven years ago, so take comfort that you've alreadygraduated to six weeks between tests. )

Neil

[Raoul]

Dont be fixated on wbc. Mine is 70000 and i am fine. Hemoglobin and platelet coint is much more important what type of chromosone abnormality do you have

I am 4 yrs in

[Cindy1462]

Sorry to butt in on this post but I've never seen ALC mentioned on any of my blood results. Is it normal to find this on your results? Thanks.

[Newdawn Administrator in reply to Cindy1462]

Yes it's represented on the lab sheet as 'Lymph' and normal range is between 1.0 - 3.0

The ALC is a key figure to watch in terms of progression but doesn't get doctors excited in terms of doubling until it's over 30. It's not the full picture however and certainly not the only reason for starting treatment.

Newdawn

[Ajkeli73 in reply to Newdawn]

Wow 30 that's reassuring!! Good information to know.😇

[Ajkeli73 in reply to Cindy1462]

ALC look for "absolute lymphocyte count" Took me awhile to find it too. 😊

[Cindy1462]

Thanks Dawn. Only thing I can see that might be 'lymph' is lymphocytes which is 4.0. So hopefully that's not too bad. X

[Newdawn Administrator in reply to Cindy1462]

That's a brilliant number Cindy, barely over the norm!

Panic not!

Newdawn

[kitcat49]

Sweety...NEVER,EVER worry ! Totally leave that up to the doctors. I've had cll and thrombocytosis (and fibromyalgia) now for 17 yrs, just this week starting oral chemo. I have never waisted one nano second on worrying...it does absolutely no good. Get your blood done when the doctor says,eat right ,get a little exercise and be happy and never stop praising the Lord Jesus.

[tekusa]

Below is response by a respected Doctor in New York. It is a question I had regarding what the future holds for me........ Best Wishes to you!

“Rick Furman Jun 3 2016

View This Message (#23359): groups.io/g/CLLSLL/message/...

The future for CLL patients is currently being written. Almost all of the patients who received ibrutinib as their first line treatment have continued to respond. While many investigators comment on the lack of CRs with ibrutinib, I like to point out that being progression free is probably the most important thing. These patients are having continued reduction in their disease, and several have achieved CRs after 3-4 years. There is no advantage to obtaining a CR quickly, just as long as you get there.”

IF YOU CONNECT TO THE ABOVE LINK, I URGE YOU TO REGISTER. It is another great community like this one.

Don't have a Groups.io account? Register it is free and easy.

[Hidden in reply to tekusa]

Hi Tekusa,

Sorry for my ignorance, but what is CR?

Joffre

[tekusa]

Hi Joffre,

CR = Complete Remission.... That is better than PR = Partial Remission.

The best however is MRD- = Minimal Residual Disease (negative).

Just MRD means = some Minimal Residual Disease is detected.

en.wikipedia.org/wiki/Cure#...

en.wikipedia.org/wiki/Minim...

Dr. Furman in his statement above is informing that the history of CLL and treatment is being rewritten now...by the new small molecule drugs being made available and in the pipeline. We have a lot to be hopeful for as our CLL disease control is far better than it has been just two years ago. The first small molecule drug is Ibrutinib (and Idelalisib {note- avoid this one unless other one doesn't work} was FDA approved early in 2014. Some Docs still advocate chemotherapy for some patients, but chemo is strong medicine with potentially long lasting ill affects in other parts of your body. Ibrutinib has side effects as well, but much less for the most part (can give you heart flutter called Atrial Fibrillation) . You however are lucky.... by the time you need treatment (if you ever do) you will have access to medicines that are much lesser in side effects than anything out now. Best Wishes and keep your ear to the ground for the future. It is bright for CLL and you will be around for a long time (my opinion).

[Hidden in reply to tekusa]

Thanks tekusa

[tekusa in reply to Hidden]

Your Welcome... More Power to You!