Hi Everyone, I had my 4 monthly check up last Thursday and was told I was slightly anaemic, I have just received a letter from my haemotologist confirming this, I am not iron, vitamin B12 or folate deficient, she says it is probably linked to my CLL. Anyone else had this problem.
June
It may be because of several reasons. It may be your HB is falling as your bone marrow becomes overcrowded with lympocytes. HB needs to be over 10/100 . My HB slowly dropped and after months of hovering around 94 i started treatment. Low HB for me meant an inability to walk up hills without breathlessness.
So do you know your HB?
Time to bring more iron into your diet. Liver and bacon casserole is perfect on an Autumn day in the UK.
But don't worry. When is your next appointment? If the haematologist is getting concerned they will see you more often.
After FCR my HB is 122 and i do feel so lively.
Thanks for that, my HB is 111, GP said it had previously been around 123 so that would be the reason I was feeling breathless. She said as I wasn't iron deficient no amount of supplements etc. would do anything to help. I was hoping to evade treatment for some time yet but maybe not.
June
You seem to on the same journey as me. 111 to below 100 took me nearly 2 years. My consultant told me not to bother with vitamins and supplements but the haematology nurse agreed that including some iron rich foods in my diet was good.
It is a shock that they initially can't do anything about the falling HB but when it goes to below 10 they can take action that is successful. We are lucky we are being monitored.
As devonrr mentioned, while your anaemia is probably due to your bone marrow becoming crowded with CLL cells, there may be other reasons, some of which are also CLL related, e.g. an enlarged spleen filtering out more red blood cells or a degree of auto-immune disease. Treatment for your CLL will shrink back the spleen and auto-immune complications can be managed if they begin to impact on your quality of life.
I started getting comments on my blood tests of 'Mild normocytic anaemia' and 'Mild macrocytic anaemia' over 2 years ago. (Normocytic and Macrocytic just means normal and larger than normal red blood cells.) My doctor checked I had sufficient iron, B12 and folate to make red blood cells and my haematologist did a Coombs/DAT (Direct Antigen Test) to check if the anaemia was caused by auto-immunity complications. Both tests came back negative, so it seems my mild anaemia is just due to bone marrow crowding and spleen enlargement. (My bone marrow was 54% infiltrated with CLL cells over 7 years ago and my spleen was also found to be enlarged at diagnosis.)
Take heart that you've been told you are slightly anaemic as a result of a blood test, not because you find you are running out of puff when exerting yourself. Try to maintain or improve your fitness so you can manage better with red blood cells you have. Ensuring your diet has good sources of iron, B12 and folate without overdoing would also be sensible. As devonrr has noted, haemoglobin/Hb falling below 10 is one of the triggers for starting treatment.
Neil
Eat lots of geens, put on a sailors hat and ask to be called Popeye! Seriously June, speaking as someone who's been on and off anaemic all my life, diet really does help. Unfortunately with me, willpower is the problem.
Best wishes
Peggy
The question and responses sound familiar. I saw a nutritionist at the cancer center who said she would ask the doc to order a test for iron absorption. She said it isn't always the amount of iron, but the way the body is able to process and use it that can be the culprit. This may be a simplistic way of saying what AussieNeil was saying, but I thought it might be helpful.
Look up the iron fish/lucky iron fish on Google. It is a good way to get iron. My daughter has significant iron deficiency and problems absorbing and keeping iron stores high due to other health issues. the iron fish is one thing she uses. It helps.
Yes. I have hemolytic anemia, which is caused by my CLL.
Keep current with colonoscopies, even a small polyp can cause a descent into anemia. Happened to me and values returned to normal following the removal.
I was just thinking of commenting on that issue myself - sometimes a slightly lowered hg may be a result of occult blood in our stools due to something going on in our colon. Even my hematologist asked if I had a colonoscopy in the recent past. Because we are more susceptible to secondary cancers due to our lowered immune system it may be advisable to ask your GP for a screening test for occult blood if you haven't had one recently, and/or a colonoscopy.
Even if the lowered hg is due to the CLL, eating a very nutritious diet will be beneficial to you.
One point I read by a hematologist, and think it has been discussed in the past, is to go to the same lab for your blood work each time, as machines are calibrated slightly differently in each lab, and can affect your results.
I hope your hemoglobin will return to a normal value on your next test and that your peace of mind will be restored.
Sandy, from West Coast Canada
As AussieNeil says, it could just be your bone marrow is being crowded out by CLL cells, so there is no room to make enough red cells - so a sign the CLL might be moving towards treatment
It is worth asking when you DAT/Coombes test is (positive / negative - positive indicated a possibility of Auto-Immune Anaemia) and if they can feel your spleen (is it larger that it should be? - if so, a sign it is setting about destroying red cells more than it should be).
Also ask for your reticulocyte (baby red blood cells) count (if up, you are compensating for increased destruction by making more - which at least shows your bone marrow is in good form).
Also are you on folic acid? It helps with red cell production, so ask about this.
In my experience, if HB dropping slowly, the body is incredibly good at compensating/covering it up and it is almost un-noticeable until levels get quite low. I only noticed HB problems when the drop was relatively fast, as the body could not re-adjust fat enough. So do keep an eye on it...
Hope this helps - good luck!
What is your ferritin level?
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