W + W for 17 yrs - levels up recently

[gardener58]

Since 12/2021

Lymphocytes - 77 to 81

Lymphocytes absolute - 44,000 to 58,000

Monocytes absolute - 3900 to 9000

White Blood Count - 57 to 71

I'm seeing my Hemo-Onc on Thursday to go over things and am looking for advice on what to ask.

[seelel]

Hello gardener58 from another gardener on the other side of the world. I'm just a few years older and have been in W&W for 16 years.

I know we don't like to see our numbers rise, but often they have no clinical significance. You have just been through a northern hemisphere winter - that may be a factor. There may be other factors as well, but until the rise is a consistent trend, there's probably nothing to be concerned about.

Discuss the rise with your haematologist, especially the rise in monocytes, but you may find him/her to provide a very generalised answer. In the absence of symptoms, it's just some numbers on paper for the moment. If you have another consultation in 3 months, your numbers may have levelled off or dropped a bit. Its all about consistent upward trends. (or downward trends with some blood counts).

Some of the other members here with better medical knowledge will probably have something more useful to add.

[Claybuster]

Wow, 17 years! If you don't mind. What are your markers and mutation status? The best to you.

[gardener58 in reply to Claybuster]

When I was diagnosed I was told not to worry, so I didn't. Now, I'm trying to learn whatever I can about the disease so that's how I ended up on this site.

The only diagnostic testing I've had is blood work, so I don't know about markers or mutation status.

Thanks for the reply.

[cllady01 Former Volunteer]

Gardener58, When you see your Dr. next, ask if you have had a Flow Cytometry Test run. I it has been run, ask for a hard copy of the results for your records.

Also ask about your IGHV mutation status and a copy of that report also.

Most Drs. do not provide patients with those copies unless they are asked to do so.

Those tests were done to definitively diagnose your CLL.

Getting those reports will help you to ask any questions of members here and begin your learning of how to be a partner with your Dr. for your CLL.

Best wishes for jumping in with both feet now and getting acclimated to the CLL lingo.

[gardener58 in reply to cllady01]

Much appreciated. It's nice to be able to communicate with people who are experiencing similar things.

[may04cll in reply to cllady01]

Does the mutation show up on the Flow Cytometry Test or is it a separate test all together ?

[AussieNeil Administrator in reply to may04cll]

There are a number of prognostic marker tests available when you have CLL:-

1) The CD marker percentages in the immunophenotype flow cytometry CLL diagnostic test. CD38 and perhaps ZAP-70 may be listed, (ZAP-70 is not always reported). A low expression of these (or a negative report for their presence) are good markers. Everyone should have this test report if they have a CLL diagnosis.

2) FISH (Fluorescent In-Situ Hybrization) test, which reports common CLL chromosomal abnormalities. 13q del is surprisingly better than 'Normal Karyotype', i.e. no common CLL chromosomal abnormalities found. Then Trisomy 12, 11q del (associated with a bulky node presentation), then 17p del. FISH testing is not commonly done at diagnosis, particularly in countries with universal health care, because the results can change over time. It really should be done prior to starting treatment, as older chemo drugs don't work well when you are 17p del. TP53 mutation status should also be checked prior to starting treatment as older chemo treatments don't work well when we have mutated TP53.

3) IGHV mutation status. Confusingly, being IGHV mutated is the best marker to have. With a 10 year W & W, I'd be very surprised if you are IGHV unmutated. Being IGHV mutated also gives you around a 2% chance of spontaneous remission, which is extremely rare if you are IGHV unmutated. It's fairly commonly checked in the USA, particularly if you see a CLL specialist, but typically hard to get done elsewhere.

4) Beta2-Microglobulin (B2M) with a lower result better.

Neil