Perspective

[CountryHarbour]

Could someone give me insight on my numbers at time of diagnosis ALC 8.3 x 10(9)

B cell 3% Kappa

93% lambda

Positive cd 5 cd 19 cd20

Cd22 cd23 cd81

Negative cd10 cd38 cd79b

[AussieNeil Partner Administrator]

The kappa/lambda information is a reflection of the presence of the CLL clone. B cells can have a kappa or lambda light chain in their B cell receptor, but when you have a clone, all the lymphocytes will be either kappa or lambda, so the ratio of what is tested is skewed by the CLL clone.

The remaining information is your flow cytometry markers, which are consistent with CLL, rather than another blood cancer. The important marker with respect to prognosis is the CD38 result. CD38 negative correlates with a long period in watch and wait.

Neil

[CountryHarbour in reply to AussieNeil]

Like 5 years 10 years ? I know can't say for sure ..

[HelloCLL in reply to CountryHarbour]

Hello Country Harbour. My doctors estimated that I would need treatment at four years from the date of my diagnosis. Thankfully, I made it to ten. Some folks, enjoy decades before needing treatment. Your FISH test result and mutation status might give you more clues. There are several pinned posts discussing what we can do while in watch and wait to get as healthy as we can. The best ones are written by "Paula." Consulting with a CLL Specialist is key. Best wishes to you.

[PaulaS Volunteer in reply to HelloCLL]

HelloCll, thanks for the recommendation, though I wouldn't say the best pinned posts are written by me. Have to admit that l don't understand Kappas and Lambdas, and cd numbers. Good to know that other folk do though.

Only five few pinned posts are shown at the side of the screen. If you click on "See all" (next to the title for "Pinned post", a lot more will appear. 😀

CountryHarbour , detailed science isn't my thing, but my post discussing "Things we can do" , giving 30 simple tips to help us on our CLL journey, has been helpful to many folk. healthunlocked.com/cllsuppo...

Wishing you all the best

Paula (in Sheffield, UK)

[HelloCLL in reply to PaulaS]

Dear Paula. Your wonderful lists helped me more than you know. I felt like there was something that I could do when getting the diagnosis was out of control. I hope that you are happy and well. ❤️🧡

[PaulaS Volunteer in reply to HelloCLL]

Thanks again HelloCLL , for saying how my lists helped you. As you say, it helps to have some practical things we CAN do, when a CLL diagnosis has made us feel "out of control".

Yes I am happy and well,thanks, though I have my sad moments and am slowing down as the years go by. Fatigue is overwhelming at times - both mentally and physically. But hubby and I still enjoy our regular country walks, which does us good in many ways. 🥰

I hope you too are happy and continuing to do well on Zanubrutinib. ❤️❤️

Paula

On our walk earlier this week - English Peak District

[LeoPa in reply to CountryHarbour]

Or 20+. Are you IGHV mutated? If so, that's favorable.

[CountryHarbour in reply to LeoPa]

I'm not sure to be honest

[Eagles1 in reply to AussieNeil]

Neil,

As a follow up to CountryHarbour, my Kappa and Lambda are similar. Do the results have any indications about disease progression or time to treat, as I’m still in watch and wait?

Thanks so much,

Lee

Test results

[AussieNeil Partner Administrator in reply to Eagles1]

Seems the prognostic value of serum free light chains as a prognostic marker were studied about 10 years ago, such as in this paper:

Prognostic Significance of Serum Free Light Chains in Chronic Lymphocytic Leukemia

ncbi.nlm.nih.gov/pmc/articl...

Neil

[Eagles1 in reply to AussieNeil]

Thanks Neil.

[Skyshark in reply to Eagles1]

Although serum free light chains remain a prognostic for time to treatment no one knows if it has any relevance for prognosis of survival with novel drug treatments. Many of the reports precede FC-R.

Unlike CountryHarbour and Eagles1 my bone marrow report says "Lambda without restriction". The slightly elevated Kappa went unnoticed as it was was swamped by the Lambda. I'm Atypical CD5-ve but the Kappa source may not be Atypical (it may not even be CLL).

I've had great difficulty trying to get consultants to test sFLC. It takes 5 days to do the test, results aren't available until the next cycle or the blood draw has to be a week before and it has little bearing on treatment. There was an initial test on diagnosis, I've had to assume it was at that level at start of treatment, 5 months later. The two tests during treatment at cycles 4 and 7 were ordered by doctors I only saw once, one was a locum. After treatment I was sent back to the hospital that did the initial diagnosis and got a post treatment sFLC test.

Being Atypical makes it neigh on impossible to do a MRD test other than ClonoSEQ (UK NICE say there's no need for this). This report details an attempt to use sFLC instead.

nature.com/articles/s41598-...

FLC response to treatment with V+O

[Eagles1 in reply to Skyshark]

I was told they were checking for abnormal proteins as my kidney function is elevated. They also ran SPEP that resulted as normal.