Two things. White blood count creeping up. And waiting for results from spike protein test.

[elm1]

I just went for my regular hematologist appointment. My white blood count hovered between 18 and 20. Today it was 23. My doctor isn't worried but is having me come back in 3 months instead of 4. She said not to worry but I see a slight upward trend. Any advice? Also I'm waiting for my results from the spike protein test and am scared. If we don't have any antibodies then what? Oy! I need some support here. I was diagnosed 3 1/2 years ago and may have had it for 8 years or so. 13 Q deleted. On watch and wait.

[AussieNeil Partner Administrator]

The advice you received a year ago still holds. That small change in your relatively low WBC is nothing to be concerned about:

healthunlocked.com/cllsuppo...

Besides, it may not be your CLL lymphocytes which have changed! Track your lymphocyte count, not your WBC, as the changes you are seeing are likely to be due to changes in your neutrophil or other white blood cell types. See: healthunlocked.com/cllsuppo...

13q del CLL is the most favourable FISH test result. That's why you've probably had CLL for 8 years and are still in watch and wait.

As to your spike test result, the standard advice is to carry on with the usual preventative measures irrespective of the effectiveness of your vaccinations. If you have a low result, you have lots of company, but quite a few are seeing great responses after their third or subsequent vaccinations.

Neil

[elm1 in reply to AussieNeil]

Thanks soooo much Neil!! I just got my spike protein results and it showed I have immunities. I'm relieved for now. Thanks again for the support.

[elm1 in reply to AussieNeil]

I just looked at my spike protein test. Anything above 1.0 is considered positive. My number was 83.22. I did have the 3rd vaccine as soon as it was available. I will continue to be very careful but I'm hoping that was an effective number.

[LeoPa]

It is better to have some antibodies than none. In case a few viruses slip through your defenses you have a good chance of liquidating them before they make you very sick. Here the keyword is "a few". Viral load is very important. Social distancing and N95 or N99 mask wearing at all times is the best way to reduce the chance of infection and to lessen the viral load. The mask has to be tight fitting.

[Big_Dee]

Hello elm1

Congratulations on your slow moving CLL. Mine was very aggressive and my W&W only lasted 14 months to treatment after diagnose. As to your "spike protein test" results, that is only one of many hurdles you will face as an immune compromised CLLer. We are all susceptible to flu and pneumonia to various degrees in spit of vaccines. Develop "work-a-rounds" to deal with your CLL and enjoy life. Blessings.

[Pin57]

Elm1 - I’m on early W&W (1 year+ but probably longer like your case) and 13q mutated (like you) and I also saw a jump in WBC from 14s to 23 and my absolute lymphocytes count went from the 8s to 12 per one early visit after my CLL dx. But then my next 6 CBCs, per doc visits, indicated those counts back to 14s and 8s or so. Doc wasn’t alarmed at any of this and as AussieNeil noted these counts we have are not really a big deal.

In my case maybe stress of learning the CLL dx had something to do with the small jump? Who knows? Hoping your CLL situation stays well and congrats on antibodies test score!

[elm1 in reply to Pin57]

Thanks sooo much. My lyphocytes were 16 at the last visit which was in line. It was that 20 to 23 that kind of freaked me. It was always 18 to 20. I'll see how it is at the next appointment. You never know if you have an increase of disease or its part of the continuum. Im thrilled I have antibodies so I'll try and focus on that. Good luck to you as well. Sounds like you're doing great

[Pin57 in reply to elm1]

Was a funny story the visit with my doc after that “slightly high CBC counts”, when new counts came in and had “dropped” back to what I had been seeing. I blurted “magically I’m getting cured doc!”… my doc laughed n said no your not getting cured but it’s normal to see counts go up or down some, we CLL docs get concerned when absolute Lymphs counts accelerate largely over a short period of time.

I’m lucky to have a doc that only sees CLL patients, adds confidence that they know when to be concerned.

Good you are monitoring CLL along with your doc … we need to stay on top of this but I think not over-worry ourselves especially when we are in W&W mode.

Take care Elm1 and happy holidays too!

[elm1 in reply to Pin57]

You are right! Thanks so much for the pep talk.

[Pin57 in reply to elm1]

Funny you note pep talk, guess it’s from coaching youth sports for decades.

Your doc probably told you also that it’s not just the CBC numbers they look at, how your overall feeling is key, are nodes getting larger and are a problem? any bad symptoms? etc. One might have what we may think are huge CBC numbers but are feeling ok and are not in treatment. Every CLL person/case is unique.

Take care!

[elm1 in reply to Pin57]

Xo