Blood test every 3 month, 6 month, or 1 year?

[Miee]

I was diagnosed 10 month ago, and WBC was 21000 when diagnosed (stage A). I was checked blood every 3 months, and found increasing WBC 1000 for a month. Three month ago, my WBC was 27000, Hb and platelets number was normal, and presumably 30000 next blood test. In my case, WBC can be expected to increase 3000 in every blood test, so the blood test seems to be OK every 6 months or 1 year. Do people with stage A check blood every 3 months, or 6 months?

[Cllcanada Top Poster CURE Hero]

Follow your absolute lymphocyte count (ALC) , Miee, better indication of CLL progression... when that gets above 30K and doubles in a period of 6 months or less, then that is an indication for a pretreatment discussion... and other factors called B cell symptoms enter the assessment...

Don't assume your ALC will increase... mine plateaued at 46K for nearly 2 years...

There is no 'standard' for bloodtests... it is up to your doctor, but generally in early stage CLL 6 months seems common... as the ALC starts to increase, this may be shortened to 3 months, but it varies...it is your doctor's call...

~chris

[Quarry]

My consultations vary. depending upon what is going on. It is a judgement of my Consultant, who I have great faith in. I had a complication of AIHA (eventually having spleen removed) and at times I was down to 2 week tests (with results and advice by email). Mercifully, the splenectomy has worked, though at sometime AIHA will come back. So I am now CLL Stage A

If I am told at the end of a consultation (next one is next week), 'come back in 6 months' ... I am more than very happy...a sign that things are stable!

Given my history of AIHA, I suspect I won't reach the dizzy heights of 'come back in a year', but if I had CLL Stage A alone and heard that, I would be ecstatic!

[Quarry in reply to Quarry]

Another thought.

My consultant says 'listen to your body'....she has given me a spare blood test envelope, so if I do feel bad (AIHA takes out haemoglobin, so it means I would struggle to bike up the hill on way back from work, eye whites are not white and urine is very yellow etc....all definite symptoms), I can just go and get a test at the drop-in-test lab at my local hospital. I would then email her and get results.

It is I guess harder to know if CLL progressing quickly, but in principle I have the spare envelope as a prop. Might be worth asking about this

Andy

[AussieNeil Administrator]

Chris has provided excellent advice. My haematologist has changed my test frequency from monthly initially, to get a feel for how stable my CLL was, then changed the testing frequency (up and down) depending on how active it appeared to be.

I have the same arrangement as Andy. I'm given up to several forms prefilled at each consultation with my haematologist. The CBE, blood biochemistry (and a recent addition, immunoglobulins because they've fallen quite low), is set for multiple use every x months as determined by my haematologist, plus I can use it any time if I'm ill. I ask the pathology lab to provide me with copies for later use when I first use that one. The other forms are for less frequently done tests, like vitamin D serum level or other prognostic tests that check what's happening with the CLL. A copy of the test results goes to my GP and I pick up a copy from the surgery a couple of days after having the test done.

Neil

[ThreeWs]

Hi Miee,

Combine Chris's very good advice with Quarry's consultant advice of "listen to your body" and you will do as much as you can to be on top of what happens. Just be aware that CLL is if anything an unpredictable disease characterized by the chaos it produces in varying measure to the immune complex. Your ALC might plateau or it might continue to progress at a rate you have experienced or it could even take off. By mindful of other conditions such as anemia, frequency of infections and check for skin cancers once yearly.

WWW

[Miee]

Chris, Andy, Neil, WWW:

Thank you for replies. I have learned that we can not assume to continue to increase ALC. Thank you for Chris’s experience. Andy, Neil and WWW, Thank you for your experiences and good comments.

Miee

[Alana397]

Hi

My heamatologist at the hospital has discharged me with the requirement for annual blood tests as I am (he says) in Stage A, although I have all the symptoms of Stage B. I always understood that the 'kick off' for chemo was if your lymphocyte count doubled within 6 months. Therefore, how can it be estiamted a doubling time if the blood tests are only annually? Consequently, I visit my GP for blood tests with this explanation as above and have 6 monthly blood tests.

I have very slow growing CLL (which would be described as "stable" with lymphocytes increasing since the year 2002 (now 13 years on), but I have the 6 monthly blood tests to ensure that the count has not doubled in that time and in case it is not spotted until 1 year later (instead of 6 months). Hope this makes sense!

My WBC is 39.64 (normal is 4.0 - 11.0). Your WBC seems extremely high and if I was in your shoes I would be wanting fairly regular blood tests until things settled down (as mine have).

[AussieNeil Administrator in reply to Alana397]

Alana, your WBC and Miee's are actually not much different at 39.64 and 27 respectively. Confusingly, most of the world reports WBC as billions of cells per litre, whereas much of the USA and a few other places report the number of cells per microlitre (or a millionth of a litre). So the 4.0 to 11 range you mention is actually 4 to 11 billion (but we drop the billion) and in the USA and Miee's Japanese laboratory, that works out to 4,000 to 11,000 cells per microlitre (and we keep the thousand).

As Chris points out above, you should both be monitoring just your lymphocyte count (ALC). Your WBC includes neutrophils (normal range 1.5 to 8 (or 1,500 to 8,000 for Miee) as well as eosinophils. basophils and monocytes. So by using your WBC, you are inflating your count and unnecessarily worrying yourselves. Both of your counts could be around 10 lower, depending on the counts of those other white blood cells. Further, your ALC includes T lymphocytes and when in normal balance (when your ALC should lie between 1 and 4), most of that count would be T lymphocytes.

So your ALC could be still be under 30 if you take out all the other white blood cells. Haematologists monitoring CLL don't even bother calculating the doubling time until your ALC climbs above 30. Your ALC could climb to 120 in a year (doubling every 6 months) and still be half that of some on this site that have not had treatment. Doubling time is the least important consideration for starting treatment and if you are otherwise feeling well and your other blood counts are normal, I doubt a top notch CLL specialist would treat you. They'd no doubt ask you to have far more frequent blood tests to see if it stabilises and it could very well do so. That said, you are wise to arrange with your GP to have half yearly blood tests. I reckon your haematologists considers you have a very boring CLL and that's why the annual check came about. Long may that continue!

I've covered why a high ALC isn't that critical for CLL here: How high can you go? (And what does it matter?)

healthunlocked.com/cllsuppo...

Neil

[alexmcg48]

The Dr I originally saw suggested after an initial 6 mth check they would probably put me on an annual watch, however, the Dr I saw 2nd time around went for 9 months, so I suspect there is no set period & it really depends on what they find from review to review. I hope that if my bloods haven't moved much next time around they'll agree to a year for my next review.