49 year old Female 5 years into W&W trying hard to manage my fatigue. Just back from check up WBC stable however RBC dropped, more blood taken (still waiting for results) Question I have is.....Will having anemia mean the start of treatment? as I notice anemia impacts both sets of staging.
Thank you in advance Shelley 
Shelley, One trigger for starting treatment is haemoglobin dropping below 10, but your specialist will probably investigate other easier to treat causes of your anaemia before starting you on treatment for your CLL.
Neil
I had to start treatment because my Hb continued to drop over a year. Once under 100 the consultant is mildly concerned but I slowly went down to 94 and to help my progress through treatment the consultant wanted to start FCR. A shock because you go from Stage A to C. After 2 rounds of FCR my Hb was back to 110 the best it has been for nearly 2 years. Better to start treatment when bloods are a worry rather than severe, I think. However Hb can change slightly from test to test so the consultant looks at the trend.
I'm no expert, but I had treatment for CLL 4 years ago, and was not anaemic then. Around 9 months ago, I became anaemic and was put on an iron supplement (ferrous sulphate), which fixed it - there is no sign of the CLL returning. They also checked to make sure it wasn't caused by intestinal bleeding (bowel cancer is a higher risk in CLL) but bowels were fine.
So - I can't tell you if there is a connection in some cases, but in my case the conditions were unrelated. I should think that at least your doctor should be prescribing iron supplements, and possibly put you down for a colonoscopy.
10.0 is the generally accepted threshold for treatment. Consistently below that should trigger treatment but, as others have mentioned, your doc should rule out other causes first.
Dear Sheelley67,
I meant to reply to your post straightaway but then got overtaken by other things.
The answer to your question is yes, anaemia seems to have a very big impact on whether to treat or not. I have had CLL for about six years. My ALC, at 50k, is nowhere near as high as some others on this site and I don't have any visible swollen nodes. However, my Hb has slowly, but surely, been going down since the beginning. The haematologist warned me that once it hit below 10, I would have to have the tests needed to see what treatment would be best ; bone marrow aspiration (didn't hurt a bit !), scan and extra blood tests.
I have now started on 6 months of FCR, or the equivalent. All these drugs have different names depending on which country you are in ! The first week was difficult but I am now recuperating and will be ready for the next cycle at the beginning of July.
I think one of the things that makes me a little cross is the fact that many professionals seem to forget that drugs have different effects on different bodies. Obviously they don't want to scare patients with the negative aspects of the worst side-effects, but to allow them to enter into treatments with only a rosy view of the procedure is a mistake. I'm a firm believer in knowledge makes things less scary, but of course, since my haematologist and I don't really know each other very well, he is totally unaware of my pragmatic outlook on life!
My very best wishes to you,
Chinchilla
Dear friends
In about a week's time, it will be my 1 year anniversary with CLL!
Despite my ALC has inched upward from 47.8 to 52.7, Dr concluded that it remained stable. But my Hemoglobin has declined from 13 to 11.5.
Dr advised against taking iron supplements, ferritin was 58.6 (18.2-339ug/l) in January.
B12 was 471 (145-637pmol/l) then.
Just wondering if anyone has tried taking iron with similar conditions? Dosage?
Seok
Seok, a change from 47.8 to 52.7 in a year is pretty good! My ferritin results measured 18 months ago and recently were 19 and 23 and my B12 results were 184 and 148 respectively. The low B12 results triggered an alternative measure of serum active B12, which were 108 and greater than 128 respectively, with the summary comment 'Sufficient for clinical function'. My last haemoglobin result was 125, but the normal male range is about 1 higher than the female range, so we're a good match haemoglobin wise. I haven't been advised to take any supplements and given auto-immune tests were negative, I can only conclude that my drop is due to increasing bone marrow infiltration.
I only notice an impact when I exert myself and get easily winded. Are you finding your low haemoglobin interfering with your day to day activities? This is only considered mild anaemia by the way.
Neil
Thanks Neil for your prompt respond!
Wonder if your Dr advise treatment if your hemoglobin falls below 12?
Wouldn't you be tempted to sneak in an iron supplement every now & then?
Do you think it's prudent to add in B12 into my regime of polyphenol, turmeric, Vit D3, probiotics, quercetin, multivitamin & antioxidants?
Do you mean IgG, IgM & IgA when you mentioned autoimmune test? Would appreciate if you could help me understand how does this test result correlate with hemoglobin level.
Take care & rest well!!
Seok
One trigger for CLL treatment is haemoglobin falling below 10. There's not much point taking additional iron if your bone marrow isn't making red blood cells to use the iron! Remember too, that every supplement you take carries with it the risk of side-effects and interactions with other supplements and drugs. It's instructive to look at the side effect and interaction tabs on this WebMD web page on iron: webmd.com/vitamins-suppleme...
Your B12 levels are well into the healthy range and around 3 times my levels, so I wouldn't think you'd see any noticeable change in your health if you took a B12 supplement. That's something you should ask your doctor about in any case; I'm not medically trained. More of a good thing isn't necessarily better!
CLL can cause auto-immune complications where immunoglobulins attack blood cells. I was given the Coombs/DAT (Direct Antiglobulin Test) to check for Anti-IgG and Anti-C3d immunoglobulins and none were found. (These tests check to see if your red blood cells are coated with proteins (antibodies/complement) that target them for destruction by our immune system, thus causing anaemia.)
Neil
Thanks Neil again!
I'll increase my iron-rich food instead of taking supplements.
Also wonder what's the treatment for anemia that's cause by immunoglobulins attacking red blood cells?
Seok
I didn't notice any improvement in my haemoglobin when I increased my intake of iron rich food - again, if your bone marrow isn't able to make enough red blood cells to exhaust your body's supply of raw materials, increasing the raw material availability isn't going to help 
.
Corticosteroids, rituximab and if all else fails, a splenectomy are used to counter auto-immune disease: ncbi.nlm.nih.gov/pmc/articl...
Immunoglobulins don't attack cells; they just lock onto them, highlighting them for destruction in a process termed antibody-dependent cell-mediated cytotoxicity: en.wikipedia.org/wiki/Antib...
Neil
Thanks for clarifying!
The %age of lymphocytes increased from 88% a year ago to 92% about half a year ago, ALC remained stable & Hemoglobin gave way.... At the same time my B2M was 2.6. Wonder if you could shed some light on what's going on...?
I cut down on most meat since then, also stopped taking cordyceps a year ago since diagnosis. Maybe both strategies I adopted cause the decline in hemoglobin...😓😓😓
Seok
Percentages of white blood cells are only helpful for people without leukaemia, so totally ignore them and just look at your absolute counts. Importantly for you, your ALC has remained stable over the past 6 months.
MD Anderson developed B2M (Beta-2 microglobulin) as a prognostic indicator for life expectancy for blood cancer patients and it also been associated with the degree of tumour burden and kidney health. The normal level is around 2. Greater than 3.5 correlates with a poorer prognosis.
You should look at overall trends in your blood counts to determine what's happening - pick a spreadsheet at the bottom of this page if you want to do this:
cllsupport.org.uk/cll-sll/s...
There's not much I could find about cordyceps and CLL. This study showed it may have potential use in treating chronic kidney disease 'However, definitive conclusions could not be made because of the low quality of evidence.' : ncbi.nlm.nih.gov/pubmedheal...
Neil
Hi Neil. Interested to learn more about b2m. Mine rose to 4.4 last visit. Why does poor prognosis mean? Is Tht time to treatment? My platelets are 148 and hgb of 10.6 but largely feel fine. And the measures largely steady for last year...thanks..
I take poorer prognosis to mean shorter time to treatment and shorter remission periods. Just remember that prognostic indicators are indicative, not definitive. Steady is good!
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