I am W&W for two years not nearing treatment. Just had 6 mth blood test results and have telephone call on Monday. A few ‘things’ are at top or bottom of ranges. But I don’t know what any of them mean. My main symptom which triggered the initial diagnosis is fatigue which I still struggle with.
Anything in test results nonCLL which gives any insight? Any questions I should ask?
TIA
Your levels are pretty good overall with the slight exception of your Hb (haemoglobin) and RBC (red blood count) which are trending down a bit. This could be contributing to your fatigue if you’re slightly anaemic. However, your levels are not at alarming levels or those requiring treatment at the moment.
Obviously this is just my observation. The medical advice needs to come from your doctor.
Regards,
Newdawn
Hi Saiju21,
I agree with Newdawn your test results are as expected for someone early in their CLL journey. Your lymphocytes rising trend over several tests will give a general indication of the tempo of your disease. Over time when they rise about 10x from the current 8.43 the doctors may want to test and examine you every 3 months vs. your current 6 months.
Fatigue is one of the 5 symptoms that can lead to needing treatment, but it would be prudent to get your medical team to start looking for more common causes for your fatigue using a process called differential diagnosis. en.wikipedia.org/wiki/Diffe...
Most doctors dislike searching for the causes of fatigue since it is difficult and time consuming to check off all the possibilities. Low levels of iron & ferritin, low Vitamin D3 or B12 could be contributing. I hope you can get help from you medical team to help diagnose yours.
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Here is a link to a list of 1821 past postings that discusses fatigue with many great suggestions. healthunlocked.com/cllsuppo...
Regular moderate exercise like walking daily is usually suggested.
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I know it is exasperating, since fatigue was my cause for restarting treatment many times over my 16 years with CLL.
Len
Thank you Len. I have been taking magnesium, multi vit and B complex supplements. Need to look at vit D, I will read your links. Walking the dogs is my go to but somewhat disrupted by weather and winter hours over last month. Apple health is telling me I am ‘down’ 200 active calories this month. It’s good to have your personal bag even if it’s just technology!
Being a meat eater it hasn’t been something I worried about- the only time I was anaemic was when I was a poor vegetarian student,
For after two years I'd say you look pretty good, aside from the RBC trend, your platelets are marvelous. I'm sitting at 82K. 🙂
Yes two years in I am grateful for the slow progression and thanks to info on here I know anything below ‘30’ is pretty much ignored
When I see labs like this where most counts are normal, lymphocyte counts are not very high, but hgb, hct, RBC are trending low and the patient has fatigue I might suspect autoimmune hemolytic anemia in the early stages. This can be diagnosed with a few simple blood tests like DAT Coombs, reticulocyte count, etc. I had this in July 2023 and it came on suddenly. Luckily it can be treated with steroids, sometimes with rituximab, and in my case because my CLL was progressing we treated the CLL and that took care of it. Hope you get some answers soon!
I also have autoimmune hemolytic anemia, twice, approx. 3 years apart. My CLL is still W&W, not meeting iwCLL treatment criteria. The hemolytic anemia comes on very quickly with hgb dropping in 1-3 weeks vs a slow downward trend typically seen with bone marrow infiltration of CLL cells. My hemolytic anemia does not resolve with steroids. Both times, 6 cycles of obinutuzumab worked and gave me 32 months before the anemia returned and I repeated the treatment which was completed Sept 2024.
Very interesting to read your recent blood results as there are many similarities to mine. Will reach my 10 year W & W anniversary next March . I won't presume to comment in any detail on your actual results as there are those far better qualified to do so ( and whose comments I greatly value on here) other than to briefly comment from my own perspective .Following a slight deterioration in some of my readings last August, I was called in to see the consultant who advised that I was coming close to needing treatment and we discussed the options.
But they decided to review again and I went back to a monthly and now three monthly blood tests. One of the first things discovered was low levels of iron and ferritin ( prescribed ferrous sulphate for 3 months ) and the possibility of bowel or stomach cancer was raised.
Have had extensive tests including colonoscopy and endoscopy and although still awaiting biopsy reports , nothing untoward was discovered .In the meantime, several of the blood results ,like WBC HG, Platelets, have all improved. I do suffer slightly from fatigue but still exercise regularly and try and take each day as it comes.
Hope this might help and wish you well in your journey.
Regards
Richard
Thx Richard- did you do anything different eg take supplements to see blood improvements? My W&W doesn’t even involve a telephone call and nurse has just booked in for August (so more than 6 mths) with no commentary or observation at all. I will try my gp for next steps.
Pre CLL in 2018/19 I had a Nuffield health check and stool sample said blood in stool so I had a colonoscopy which came back all clear so not anticipating anything like that. Just frustrated with the ‘no contact’ approach of W&W at my local hospital.
I did nothing at that time ( I already take various supplements) - the only thing prescribed was the ferrous sulphate. Hence the suspicion that the " spiking" of the various readings arose through an infection . My W & W ( here in Berkshire) has gone through various stages. First 2 years ,3 monthly then six monthly blood tests ( 2 years) and last 6 years yearly blood tests. For the first three years I actually saw the consultant who reviewed the readings. Then I went onto a new system whereby the Haematology Department review the blood readings and at some stage - anytime up to 4/5 weeks later I get a letter commenting on the readings. I feel that is too long to wait for actual readings and last couple of times, I have had telephone consultations which is marginally better .Just received letter saying next telephone consultation is in March which is disappointing as they had promised that I would actually see the Consultant next time.
One part of me says I must be doing OK if they don't want to see me and must be able to devote more time to those who need it, but another part says I would actually like to have a face to face meeting , now and again! The dilemma of " W & W".
Seems OK with early stage CLL and not needing treatment soon.
Absolute Lymphocyte Count (termed Lymphocytes on that list) is the main one to keep track of. It will likely gradually climb over time. Once it's a little higher (>30), if its doubling rate starts to speed up, that is an indicator of nearing treatment. The number by itself does not tell you too much. They used to consider 100 as a marker for treatment consideration but that's out of date.
RBC being a little low would match the fatigue symptom. My oncologist recommended B12 supplements, and they were helpful, but you should talk to your docs and see if that makes sense for you.
Hello, my fellow CLL warriors. I've been on a wait and watch for about 5 years so far. So good. Just fatigue loss of aupdate and now I think depression is kicking in that is good. Merry Christmas, everyone God bless.♥️🙏🏽⚘️
Thank you. Due to sleep problems I have been taking a multi vit, magnesium, and a B complex since the summer but will look at adding folate/ iron/ vit d and ask GP for a ‘what’s next’ discussion’ The irony is my CLL dx came from asking for a blood test for b12 (which 3 years ago was fine).
My hemoglobin and rbc went down slightly below normal four months ago. I upped my intake of eggs to two a day, added a tsp of spirulina every day, added chicken livers once a month and a dropper full of turkey tail mushroom extract each day. Three months later my RBC and hemoglobin went back up into the normal range. My total wbc is 27k and no talk of treatment yet.
I like eggs but two every day maybe too much and livers - yuck. But point taken to look at diet. I will try that with supplements then ask for new blood test in 3/4mths.
No commentary from nurse in letter to GP- disappointed.
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