Early Intervention in Asymptomatic Chronic Lymphocytic Leukemia

[whmk]

hematologyandoncology.net/a...

[cllady01 Former Volunteer]

As one who has been untreated for 21 years, I sometimes start to second guess that situation.

Aging with unsymptomatic CLL still has the iffy factor of each blood draw showing it may be nearing time for treatment with all the adjustments in living arrangements, having some assistance, and the dread of side effects on top of aches and pains and weakening physical strength that aging has already provided me.

However, this one statement from the article, keeps cropping up and encouraging me to hold the line as long as I am not having symptoms.

..."no evidence available to date indicates that early intervention to treat CLL will reverse many of these immune deficits or genomic aberrations and lead to improved outcomes."

[whmk in reply to cllady01]

thanks for your insight

[Superdad3 in reply to cllady01]

Cllady01,Being diagnosed close to 4 years ago and watching and waiting over this period as my bloodwork continues at a crawl but still increases with every follow up I wonder what is the tipping point where earlier intervention of treatments would be beneficial to avoid secondary cancers and maintain a stronger immune system. Can you share with me what you experienced with your wbc and changes? There are times I just feel off and trying to interpret if it’s just me getting older, maybe a little stress and anxiety, if it’s my body fighting this or combination of all three.

Thanks

[cllady01 Former Volunteer in reply to Superdad3]

Superdad, my blood changes have been very minor as far as dips and rises.

My last blood draw, in March:

WBC— 97.13

ALC— 91.05

RBC— 3.60

HgB— 11.5

Platelets 111

To compare, in July, 2020:

WBC—99.90

ALC— 92.81

RBC— 3.71

HGB— 11.7

Platelets 118

So there is a downward trend that may possibly be occurring--and my next appt. in early June may be a time to talk about treatment--or not, because any of those levels may jump back up a bit to stay within a safety zone.

What I am aware of is my need to keep free of infections of any kind and to get as much exercise as I can---walking is my preference and I have a nice neighborhood in which to walk which is a blessing. So watch and wait it is, until that is a harmful stance.

I also need to get my act together in regard to wanting sweets. I went for years abstaining from desserts or candy and find that I am now wanting those unnecessary delights---I have pre-diabetes levels that I have staved off for many years. So, I am trying to let fresh fruit be my sweet daily. Age has broken down my strong will somewhat, I guess.

My motto: Stay as healthy in all areas as you can and keep all vaccinations up-to-date to be ready if and when treatment is called for.

[Superdad3 in reply to cllady01]

That’s a great motto and agree with walking as a great exercise was up to 7 to 10 miles a day last year this time with lockdown and all but with so much going on fell out of it looking fwd to getting back into routine and sweets are my downfall also. My wbc when diagnosed was around 18 four years ago an is now 38 so it’s been a slow crawl which I am grateful but dread the 6 mth follow ups. I hope for continued w&w and years of enjoying life. Thank you for sharing your history really appreciate it!

[cllady01 Former Volunteer in reply to Superdad3]

I don't know what your CLL is in regard to mutation or deletions. My WBC was 20 at diagnosis. I am 13q14.3 deleted and IgHv mutated.

I hope you have a copy of all diagnostic tests and keep a sheet showing all you levels for each visit. It can help you become aware of what the ranges for each level are and it helps me to not be unduly worried--gives me some sense of control, though I know I am not in control.

[Superdad3 in reply to cllady01]

Mine is also 13q14.3 mutated and based on tracking my bloodwork prior to my diagnosis my wbc began moving up about 3 years prior. My only cll symptoms is some tiredness at times and feeling out of it. Again it may be more stress related as I have 5 kids and run a business so a lot always going on. Tomorrow I am participating in the study to see if my Pfizer vaccine hopefully created antibodies. Fingers crossed🤞

[cllady01 Former Volunteer in reply to Superdad3]

I worked for 5 years after my diagnosis and was pretty well dragging when I retired. The stress level was visibly lifted from me and I did not have near the stressors you have in your life.

Getting back to the walking routine might help you with that stress. However, you also need to be certain that your thyroid levels are in range as well as your iron/ferritin levels. Both of those (as well as diabetes) can cause fatigue/exhaustion.

So, along with your CLL Dr. I hope you are getting annual checkup CBCs and other blood tests from your PC/GP.

I hope your test shows some immunity!

[Phil4-13 in reply to cllady01]

cllady01, I ditto your response! Sandra, 72 years young! 😊