Anaemic: Hello all, Just had my 6 monthly W&W... - CLL Support

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Anaemic

Suzanne1970 profile image
Suzanne1970

Hello all,

Just had my 6 monthly W&W appointment. My WBC has gone down from 180 to 148 and haemoglobin has gone down from 116 to 97 making me anaemic.

I am to have more in-depth bloods done and see specialist again in 6 weeks.

Should I be worried? Does anyone else have experience of white cells going down as well as haemoglobin dipping?

Thanks,

Suzanne (UK)

14 Replies
JigFettler profile image
JigFettlerVolunteer

Hi Suzanne,

I try to practice worrying about certainties - for so often things turn out other than my dark machinations would tell me.

That said this blood result has focused your attention - it would me too.

The drop in Wbc does not allow us to know if that is a Lymphocyte drop - although its likely. During WnW my counts leapt about a bit.

The Hb is important. It can mean that the marrow is losing space to make new red cells - as the CLL cells occupy more space. It can suggest that CLL treatment is needed.

My Hb was static thru 3 years of CLL at 13.5. I assumed my marrow was spared as the L count rose. All in the nodes. BUT after FCR my Hb rose to 15.5 - clearly I had marrow involvement. Saying this to illustrate how CLL is very variable.

Further - there are OTHER causes for Hb drops. Your Drs will know this. And you should have that checked out. Basics - B12 Folate Iron levels needed and check no blood loss is occurring by other means.

My take is that CLL may drop Hb but I would expect - possibly - the Lymphocyte to go up.

Have I muddied the picture? Hope not. Its straight forward medical assessment thats required. As I have been taught - try worry about what you know. Easier said than done.

Do say how you get on.

Take care

Jig

Thanks for prompt reply Jig, I had wondered about bone marrow.

I will let you know outcome.

Best wishes,

Suzanne

Hi Jig,

Just to let you know update re anaemia, have started treatment today after 10 years w&w. Ibrutinib. Feeling nervous but hopeful!

Best wishes,

Suzanne

JigFettler profile image
JigFettlerVolunteer in reply to Suzanne1970

Hi!Good news. I feel you may justifiably be optimistic, anticipate a good result, link in with those also on Ibrutinib too.

Remain hopeful.

Jig

cllady01 profile image
cllady01Volunteer

Your blood levels will fluctuate with each blood draw. It appears from your Dr. setting a new blood draw for 6 weeks that your Dr. is on top of your situation and wants to get information sooner than the last time. Usually the Drs. like to see your Hgb no lower than 100, however there are other reasons for Hgb being low and if your Dr. most likely wants to explore to be sure CLL is the cause of the lowered level.

The Actual Lymphocyte Count (ALC) number is the one you want to keep track of. Our WBC are made up of 5 different named blood cells--Lymphocytes are one of those and are the cancer bad guys. WBC can increase with infections and viruses because the Neutrophils (another WBC) are first line fighters of diseases.

I have found if the Dr. does not tell me there is a problem, he has not decided there is one. All Drs. are different, but it is your right to ask any questions you have and most Drs. worth their salt will be glad to know you want to learn and will answer you and perhaps will begin to talk with you about the specifics of your situation at each appt. If not, do ask the questions--even if the question arises after you leave the office, it doesn't hurt anything (and will help you) to call and ask the nurse to call you back with any answer you need.

Suzanne1970 profile image
Suzanne1970 in reply to cllady01

Thank you cllady, great advice

Suzanne

Has your consultant told you what s/he is looking at? Your HB is low and that is quite a drop. Are they checking LDH, billi (both products of red destruction and will be high if you are overdoing red destruction) and reticulocytes (baby reds, which are high if you are overdoing red production to compensate for red over-destruction)?

Signs of red destruction/anaemia are also yellowing of eye whites, dark urine and pale/grey complexion. Do you have these?

If most of above, they might be looking for AIHA, which can be caused by CLL and is treatable.

Suzanne1970 profile image
Suzanne1970 in reply to Quarry

Hi Quarry,

My consultant did not tell me what he was looking for, just said he wanted more bloods (which were taken same day) and said he would see me again in six weeks. I do not have yellow eyes, grey skin or dark urine.

Thanks for reply.

Regards,

Suzanne

Fant1924 profile image
Fant1924 in reply to Suzanne1970

What about platelets?

Dennis, 74, Venetoclax

Suzanne1970 profile image
Suzanne1970 in reply to Fant1924

He never mentioned platelets

JigFettler profile image
JigFettlerVolunteer in reply to Suzanne1970

Platelets are important. Clotting. Important of course if too low. And levels may vary in a fickle manner and for a number of reasons unrelated to CLL, as well as due to CLL occupying bone marrow space. It still figures as a result we need to monitor, absolute levels, and trends.

Jig

Thanks Jig

Hi Suzanne,It sounds like I might be in a similar situation ... at my last blood test in Nov 2020, Haemoglobin had dropped from 128 to 114, WBC up from 47 to 72 and also flagged up that all my immunoglobulins were v low with mention of Hypogammaglobulinanaemia! I didn’t spot this at my last consultation so I’ll talk this through along with latest bloods with my consultant at my next review in 2 weeks time.

Also my consultant said due to my bloods and increase in number of swollen lymph nodes, we’d talk about looking to start treatment soon.

I always get a copy of the full set of blood results from the clinical nurse support at each appointment, that way I can keep track of how my bloods are changing which helps a bit to get my head around what’s going on.

Very best wishes, Angela

Suzanne1970 profile image
Suzanne1970 in reply to Smiley60

Hi Angela,

Thanks for you reply. Wow! That’s a long word type of anaemia!! Let me know how you get on

Best wishes

Suzanne

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