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[HSon]

Hi, I have some question I wonder if someone could help me?

Basically for the past 2 years my mum has been visiting the haematologist every 3 months, on her last visit (this week) her WBC went up from 59 to 83. The doctor advised that there is nothing to worry about until she has any symptoms (night sweat, fever that won't go, unexplained weight loss, fatigue). The doctor hasn't mentioned CLL but has given her a booklet about CLL so she's aware of the symptoms.

I wanted to know has she definitely got CLL?

I've read on this site that 33% of cases don't need treatment - so Im assuming they have no symptoms. Do these people have CLL or do they just have an abnormally high WBC. Can they carry on with their life as normal and live to an old age.

If treatment is required, does it cure the problem, or will treatment be required for the rest of their life. Does CLL with treatment reduce the individuals life expectancy.

I do apologise for the stupid questions. Im extremely worried for my mum, as any child would be on hearing cancer, Im extremely close to her and don't know what I do without her. Hope someone can help.

[Estate1]

Welcome HSon

I'm sorry to hear about your concern for your mum. I'm new here also but I think a visit to a hematologist specializing in CLL would be in order to get a second opinion. As I understand most CLL is quite manageable. There others here who will answer your concerns better than I. God Bless you and your Mum.

[HSon in reply to Estate1]

Thanks for your advise and prayers Estate1

[Cllcanada Top Poster CURE Hero]

CLL is a rare and very complex lymphoma and/or blood cancer. New treatments are making a normal life span a reality for many patients. There is never a good time to be diagnosed with CLL, but with advances in knowledge and new treatments, there has never been a better time...

Here is an accurate and current patient guide that will answer many of your questions, I hope you will download it and take some time to read it.

nccn.org/patients/guideline...

I was diagnosed 21 years ago, at age 51, and I'm doing fine. Come back here with any questions you may have, and be careful of cures and potions and quacks on the internet... 🦆🦆🦆

A few more websites are

CLL SOCIETY

cllsociety.org

CLLPAG

cllpag.ca

~chris 🇨🇦

[HSon in reply to Cllcanada]

Hi Chris, thanks for your response!

What treatment have you had if you don't mind me asking, and were they successful. Does the treatment completely get rid of the faulty WBC.

Any diet changes or supplements you would recommend?

[Cllcanada Top Poster CURE Hero in reply to HSon]

Treatment can get rid of maligant B cells but unfortunately, they also kill healthy B cells... so we remain immunocompromised for life...

However, CLL can be pushed back to normal levels of lymphocytes which can remain that way for many years, this is called a remission, and there are a number of them...

I started cooking from scratch, and reduced my salt, sugar and fat, finally went on a low glycemtic index diet for type 2 diabetes... The goal should be overall health improvement, but exercises twice daily brisk walks, had a direct impact on my CLL by reducing inflamation, as I lost a great deal of excess weight... but it takes a long time.. no quick fixes in CLL.

I have had most treatments they all worked to some extent, unlike many patients ...for me ....Imbruvica (ibrutinib) was the poorest, but many patients do well on it...

This simply shows how variable this cancer is, one size does not fit everyone, and overall health and age are very important factors as well as genetics, in treatment choice.

CLL seems to effect VitD levels, as well as B12 and folate, these should be checked by a GP and supplemented as needed...and anything else that is out of line... blind supplementation without a road map and testing is just dumb... in my view. Get a Prevnar 13 pneumonia vaccination, usually used on children, and annual flu shots.

They other vaccination to ask a hemetologist about is the new two shot shingles vaccine called Shingrix. ONLY this vaccine, for CLL, there is another, but it is not recommended because it is a live chickenpox vaccination.

~chris 🇨🇦

[MsLockYourPosts Passed Volunteer]

I would insist on a Flow Cytometry test ( can be done as a blood test) to pin down the exact diagnosis, if she hasn't had one done. No hematologist should be guessing about the diagnosis for a patient he /she has been seeing for two years!

[HSon]

Thanks for your advice, I will enquire about this