Will I Be Treated for My CLL - CLL Support Assoc...

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Will I Be Treated for My CLL

I was diagnosed with CLL 30 days ago, the VA oncologist told me I was level 0 and since my Lymphocytosis has yet to reach >5K, I would not be treated. I also belong to Kaiser and just went there last week for a second opinion, the blood test there shows my LYMPHOCYTES MANUAL COUNT is 7.25 x1000/mcL with normal 1.00 - 3.60 x1000/mcl. Are these two results the same. Should I be more worried than I am now?

Thank You For The Support

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7 is 7K so it is more than 5k. You are likely to see some fluctuation in levels. And this maybe in part due to differences in labs. Even if this change is genuine they will want to see progress over time. And many people don’t need treatment with levels a lot longer than that.

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Long, long way to go yet... white blood cell count [WBC] bounce around all the time, as your body fights bugs...

In CLL things are not really progressing until the absolute lymphocyte count [ALC] , crosses the 30,000 or 30K mark... this could take 5-8-10 years...

Then you will be followed more closely...

~chris

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This pinned post might be useful information:

healthunlocked.com/cllsuppo...

Len

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Thank you AdrianUK, lankisterguy, and Cllcanada. this info makes me feel better.

Test Tech

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I just thought I'd add in that when you eventually do get treated, it probably won't be too bad and certainly not like those scary, nasty cancer treatments where you lose your hair and turn into a walking skeleton. I've just finished a 15 month treatment program that's involved me taking 2 types of high-tech pills each day and going for regular check ups. I've felt fine throughout and kept up full-time work along with gym most days, cycling, skiing - whatever I want really. Last check showed no detectable CLL cells. If it comes back, there's options to treat again.

It's really important to look after yourself now and if you do that, you should expect to live a pretty normal life. Exercise, eat well, get enough sleep, laugh, drink good reds (South Australian preferably :) and get on with it! You do need to keep up with vaccinations, have regular skin checks (we're more susceptible to skin cancer) and regular check ups but that's no big deal.

PS - don't stress about your lymphocytes count too much. The count isn't the main factor for when to treat but most wait until well over 100K. If you keep reading this forum, you'll know plenty to make the best treatment decision at the time too.

Graham

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See this post from Aussie Neil about your results and at the very bottom is a link to a downloadable spreadsheet to track your results.

healthunlocked.com/cllsuppo...

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I’m similar to your diagnosis with no treatment at this time. My specialist will monitor with blood draws every six months to determine any new patterns or trends in my blood chemistry. I couldn’t agree more to live a healthy lifestyle, enjoy every day, and red wine is on my list. I prefer the California reds though, a wink to our Aussie friends that make some darn good reds as well.

My doctor mentioned taking turmeric and green tea and there are several good posts about their anti inflammatory benefits. I am taking 500mg of turmeric but encourage you to find what is best for you.

All the best to you!

Mike

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I'm kinda confused by the labs I just got back. I don't understand how I can have severe lymphocytosis and neutrophilia but have low lymph (17.2 %, or 3.4 #) and low eos (.3% or .1 #). And my platelets jumped to 443.

I thought % [for tracking] is disregarded so I'm not sure why the # were not used - only (the # of lymph actually fall in the normal range).

Neut# 15.2, or 77.4 %. And WBC 19.7.

I thought platelets are supposed to go down as the wbc and neuts go up. Or does that only happen after treatment begins?

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I'm not sure why you were ever given the label "severe lymphocytosis" with an absolute lymphocyte count (ALC) just outside the normal range. Nearly all of us have far higher ALC's - in some cases into the 300's without needing treatment. Your platelets are unusually good for someone with CLL.

As Len notes, Neutrophilia is generally a sign of infection and your case is what is driving up your white blood cell count. While we are all different in how our CLL progresses, generally over time our bone marrow becomes more and more infiltrated with CLL cells. That reduces the bone marrow's capacity to make other blood cell types. There are different blood stem cell lines involved, so what happens varies from person to person, but generally eventually we see our platelet and red blood cell counts dropping and perhaps also neutrophil, eosinophil, basophil and monocyte blood cell counts.

Treatment reverses this (eventually). Bone marrow is well protected, so it takes some time to clear of CLL. Also, all treatments have side effects that suppress to some extent other blood cell lines, so blood counts don't always fully recover after treatment.

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Please ignore the % except to calculate your Neut# or Lymph#.

Any one test can be strange. It seems your Neut# has driven your WBC abnormally high, so you may have an infection or this video may explain:

patientpower.info/video/und...

and

patientpower.info/video/the...

And I suggest using a spread sheet to track your history over many tests,

healthunlocked.com/cllsuppo...

Your RBC and platelets likely will be stable until your disease is fairly advanced and your lymph# is much higher - indicating that over 90% of your marrow is occupied by lymphs that crowd out the cells that make red blood cells.

Len

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Test_Tech - This may be a little off topic, but did the VA attribute CLL to anything in your military service? The reason I ask, is that I'm getting ready to retire in a couple months and I firmly believe that the burn pits in Iraq and Afghanistan contributed to my CLL. Is there are rating for CLL in the Wait and See stage?

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