Just about a year ago I was diagnosed with CLL. My self-definition suddenly included having cancer and owning a status as "13q unmutated." I was terrified. In the months that followed I spent a lot of time reading posts here on HealthUnlocked, and felt grateful beyond words that people were here sharing their experiences and advice. I was not alone.
At this point I'm in a wonderful CLL Society support group, I'm in an NIH clinical trial for untreated patients, I have a beautiful circle of supportive friends, I'm retired from a stressful job, and I made some major changes in my lifestyle... specifically: I eat in a healthy manner, I exercise more often and more vigorously, I drink lots of water, I sleep without an alarm, and I use mindfulness practices. Mind you, those changes were a dramatic departure from my previous lifestyle...
Since January 2018, I have had blood work done about every three months, and have watched an interesting progression of WBC, ALC, and %Lymphocytes. I'm considered Stage 0, and know that I'm early in the game... and I'm afraid to be falsely comforted. My question to those of you who are so much more knowledgeable than I am, should I be encouraged by my blood test results? Are my lifestyle changes possibly paying off?
In the last nine months I've seen fluctuation (which I understand is typical), but the progression has been as follows (noting that I started the heavy exercise in September 2018):
1/18: WBC 10.3 ALC 6.5 %L 63
3/18 10.6 7.3 69
6/18 13.0 8.6 66
9/18 12.2 9.8 80
12/18 14.4 9.0 63
3/19 11.6 8.6 74
6/19 13.7 8.1 59
Is it common to watch this "improvement" in the blood test numbers? I naturally plan to continue my healthy lifestyle, and I must admit I feel healthier than I ever have in my life. I seek honesty here, not any sugar-coating.
Thoughts on this picture would be greatly appreciated!
Lynn
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lynnsb6754
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Lynn it is usual that the blood levels wax and wane---as you rightly state, you are early to CLL and beyond the blood levels, how you feel is a major factor to be considered. You sound as though you feel fitter and more able to relax with your life than you were able to do when employed.
There is nothing here to sugarcoat as far as I can see. Keep up the good changes and enjoy your life, maybe get a new hobby, take an art class, just be.
Hi Lynn, I am thirty days into this diagnosis and my WBC on the same analyzer (numbers can vary between labs) went from 33k down to 17K yesterday. I have done nothing but drink green tea. But the pollen count went down and thus my numbers went down with it. I try not to get too excited because I know they will creep back up and I don’t want to feel hurt when they do.
I think you are doing great in that it’s not steadily increasing and if it stays around the same and even goes down....that’s great and you should be happy and proud of your accomplishments with your health no matter what.
I know that the LDT = “lymphocyte doubling time” can be used to “stage” someone and if you double your numbers in less than a year....that means you may be getting closer to needing treatment.
So what we see in your numbers is uplifting, in my opinion.
It is good to keep track of the numbers because it helps your doctor who may not have a spread sheet in his system that way he doesn’t miss anything . So you are therefore helping your doctor stay on track so beautifully.
But I think it is a bad idea to “feel only as good as the numbers.” Or to focus on them exclusively. A simple thing like a virus may change them. Or in my case the high pollen drives my numbers up, in my opinion. Anything can cause an immunologic trigger in your immune system.
With that said, I would remember that we have folks with numbers a lot higher who are living normal productive lives.
So I try not to worry and am happy when I wake and can go to work and don’t feel too tired to focus.
I am ready to retire. Did you get bored retired in the beginning or did you right away take to the new lifestyle?
That’s sounds great: you get to do what you want each and every day!
You are so right that ¨it is a bad idea to “feel only as good as the numbers.” Or to focus on them exclusively¨. Like you, I have seen my white blood cell count jump when I had a bad hay fever season, with my eosinophil white blood cell count spiking up. That’s why it is important to look at our lymphocyte count to get an indication of our CLL present in our blood.
Lynn,
Blood stream CLL cells are in their dormant phase and hence the blood lymphocyte count is a poor indicator of how well we are, plus they are only a part of our total CLL tumour burden. The proportion of CLL in our blood varies for each of us, from those of us with the SLL or 13q del presentations, where very little of the tumour burden is present in the blood and most in the nodes, to the other extreme, where we don’t have much in the way of node involvement.
Your specialist would classify you as stable - in fact, very stable. Your ALC changes are totally explainable by natural variation and the inherent accuracy of the test equipment. 13q del is the best prognostic deletion marker you can have.
Neil
PS Totally forget your lymphocyte percentage. When we have CLL it can be very misleading. Just concentrate on absolute numbers as that is what really matters.
Yup but we are trying to look on the bright side. But when they go backup then you feel awful. So it puts you on a kind of rollercoster of emotion. Maybe meditation is next for me. Where I let it all go ....living with each breath.
I am not going to deny we were all happy when my white went to 17k from 33k. But I know it doesn’t mean so much. I am thinking of it being normal and this all being a mistaken diagnosis. But I know I am just deluding myself.
I feel great on prednisone too and the 500 lesions in various stages on my skin clear up. Those lesions been around for years. All the battle scars of this disease.
I always learn from reading your replies! Thank you so much.
Could you explain the percentage thing a little more? My doctor said the ALC was only a reflection of the % of the WBC. So naturally as the WBC went down (for me in 3/19), the ALC was lower, though I had 74% occupying my blood... Isn't the space taken up by the lymphocytes an eventual problem as it crowds out the good guys?
In the standard blood test report, all the counts of the different white blood cell types are split out by type in what's termed the differential. Sometimes only the total WBC and a percentage breakdown are given, in which case the absolute numbers of each type can be derived by multiplying the relevant percentage by the total WBC. Your doctor is right in what he says. R
When percentages are used, the total must be 100. So with CLL, where the lymphocyte count climbs and hence their percentage of the WBC increases, the percentages of all other white blood cells drop, even when there is no change in the absolute number of other white blood cells. That is why percentages can be confusing and misleading.
Red blood cells are about one thousand times as common as white blood cells in a healthy human. CLL cells are just a tiny bit larger than red blood cells. So it's possible (and has been observed) for some people with CLL to have lymphocyte counts of over a thousand (or over a million in most USA lab results), without a problem. In other blood cancers, the larger lymphocytes can cause circulation problems through 'sludging'. That's rarely a problem with CLL.
Retirement has been a wonderful new adventure. In the last 10 years of my career I was a high school principal in a city school, so the stress was constant though the reward was great. It was a roller coaster and I didn't take care of myself.
When I retired, it was like a dream come true of no alarm clock and relief of pressure haunting my sleepless nights. After about a year and a half, I got a bit bored, however, and I took a part time job with great flexibility and high satisfaction, and I love it. I set my own times and can work largely from my home. I have taken painting classes and adopted a rescue dog... have done much more exercise and meditation which I never had energy or time for... It's wonderful and I wish you a lovely transition when the time comes.
Thanks for your reply. I like your perspective. I'm very grateful...
Just based on what you provided it appears that you have a stable progression consistent within the mode for a 13q prognostic. The card that lies face down on the table is the unmutated status, and hopefully research will overcome this challenge by the time you require treatment.
If you look at statistics, it is probable that you can live well without the anxiety for the expectation of aggressive disease.
With a reasonable effort, it is still a better strategy to continue to gain knowledge about your markers, interpreting lab reports, keeping up on the latest breakthroughs in research, who the top oncologist's are and where they practice, available clinical trials, etc.. rather than just wait and miss an opportunity when it presents itself.
First of all I'm Dutch and therefore genetically not sugarcoating anything So forgive me if I sound too much direct.
I think you're both lucky and unlucky that you found out about your CLL so early on.
Lucky because the earlier you know, the earlier you can take some form of action. And I think you do exactly that. Try to live more healthy and also try to enjoy the things you want to do.
But also unlucky, because it's true that ignorance is a bliss.. when you don't know you have cancer, you can make choices based on how you want your life to go, without that little voice in your head that says that some choices are better now you have cancer.
Same with the numbers.. don't let them fool you. They do go up and down on a daily basis. Your numbers are pretty stable. Nothing to worry about, I would think (note, I'm not a medical professional).. and hopefully nothing to worry about for a long time. Enjoy life. Don't let the disease control it all. Do what you like and the way you like it. ☺️
Go to your scheduled appointments and don't worry about a thing. Life is good also with CLL.
And hopefully they find a cure in the near future and we will be lucky to benefit from it.
Yes, "Cheers to life!" And thanks for your good advice.
I too have wondered about what would be different if I hadn't found out about the diagnosis (rather accidentally) a year ago. We can't turn the clock back obviously, but overall I'm glad I know. I think it's actually created a good improvement for me for two reasons: 1) I have taken healthy eating and exercise seriously, and I feel better for it, and 2) I am much, much more grateful for the small things.
I'm not extreme with my diet, and enjoy a glass of wine or a drink from time to time... I still love desserts, I just don't eat as much as I used to... and I enjoy all of it more. I live more intentionally, and it feels very good...
After my diagnosis I went back for a session with a therapist who had been very helpful to me earlier in my life. The main message I took away from the session was to spend time with people who promoted my health, and steer clear of emotionally unhealthy people. Good advice!
Interesting post-script is that my blood work in July went up to about 12 for the ALC... the highest ever when only one month earlier it was around 8... but I was reassured that the fluctuations at this point are typical...
I don't take supplements except vitamin D because I live in a sun-deprived Buffalo, NY, and my measure was significantly low.
I did enjoy reading "N of 1" by Glenn Sabin, and was just recommended to read "Life Over Cancer" and "Anti-Cancer: A New Way of Life", which are all about integrative medicine and a holistic approach, not rejecting western medicine but supplementing it... Makes sense to me to try to encourage my general health and hope for the best.
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