Anaemia can often develop with CLL, both during Watch and Wait (haemoglobin falling under 10/100 is one of the triggers for starting treatment), and during treatment, when blood transfusions may be required. However, given that 'According to the World Health Organisation, iron deficiency – a condition where your body doesn’t have enough of the mineral iron – is a global public health problem of “epidemic proportions”. It is the single most prevalent nutrient deficiency in developing and industrialised countries, and the most common cause of anaemia.
Anaemia occurs when our red blood cell count and/or haemoglobin levels are too low, resulting in an inability to transport sufficient oxygen throughout the body. Iron is required in order for haemoglobin to transport oxygen.' it can be well worth engaging with our GP to ensure that other common causes of anaemia are not responsible for our 'Symptoms of iron deficiency (which) include tiredness, neurobehavioural disorders like attention deficit hyperactivity disorder and restless leg syndrome (a nervous system disorder that creates an irresistible and sometimes unbearable urge to move the legs)...'
Natalie Parletta, Senior Research Fellow and Dietitian/Nutritionist, University of South Australia explains why iron in our diet is important, causes of iron deficiency, iron requirements and dietary sources of iron here: theconversation.com/why-iro...
Neil
Photo: Iron (laterite) in the Kangaroo Island soil is very apparent in this graded country road
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A diet to include liver adds the essential iron as well as many other good things..
Many other sources for iron of course, Butter Beans and Watercress are in my diet also.
Diet is an incredibly important part of looking after yourself while you are in Watch and Wait.
Dick
When I was on watch and wait I mentioned to the consultant about taking iron pills and he said "No point". However I told him that I would boost my diet with iron rich foods.
I suppose there was no point as my HB slowly fell but would it have been lower with out the input of iron rich foods, who knows!
During FCR treatment I again boosted my diet with iron rich foods and now such as liver and bacon casserole is a regular meal choice and in Summer watercress salad. Diet is part of keeping healthy what ever stage you are at.
Just be wary of boosting your iron intake with red meats and liver etc. if you suffer from gout. Whilst brilliant for boosting iron levels, a good plate of liver can activate a gout attack for my OH. Fortunately it's something I can eat without problems (and probably need to).
Unfortunately I detest the taste of liver! I had tried it "smothered in onions" and still spit it out. My father had CLL but loved liverwurst and liver. The sight of it sitting on the cutting board turned my stomach. But low and behold my turn came and before I even had the chance to become anemic I started taking a supplement made from liver so I didn't have to taste the liver but get the benefit. I was able to go without any aid for seven years until first treatment and am ready to take it again if my RBC and HGB start to go below normal. I eat as many foods as I can that have iron in them. Unfortunately my hematologist doesn't put much stock in foods as being able to help CLL. I disagree of course but don't waste time trying to convince him. If he sees statistically some positive thing in my lab work and I`m not in treatment he says keep doing it.
Hi Neil. Since starting Imbruvica my Ferritin levels have been consistently on the lower side by my Iron tests are all normal. This is perhaps a question to ask my doctor but what is the difference between Ferritin and Iron?
By the way, for those who suffer from anemia, Megafoods offers a product called Bloodbuilder that is amazing. I have used it and many of my friends wives swear by it.
Ferritin is a transport protein for iron but can also be an inflammatory marker (ncbi.nlm.nih.gov/pubmed/245.... Interpreting iron status in an individual is complex and a number of other test results may need to be taken into account.
Not sure what other iron tests you have had but there are several which give a better indication of iron status and iron utilisation in the body - transferrin (labtestsonline.org.uk/under... and haemosiderin (en.wikipedia.org/wiki/Hemos....
I just had my Hbg run an hour ago... 84g/L still above the transfusion range, but very noticeable in large muscle groups... like back and thighs... feel like I had my bell rung... 😜
Marrow collapse/overcrowding... not autoimmune...
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Speaking of transfusions, please ask your friends and family to give the gift of life this Holiday Season... give blood...
Thanks Paula... yes we trimmed the flaps today and are on the glide path for a soft landing... now if someone had ordered the Zydelig (idelalisib) it would have been great ... so we go with mouse juice... first... and a chaser of allopurinol, keep the TLS at bay... ✈️ and a handful of other drugs... ⛑⛑⛑
Not sure what happened... my doctor ordered it... but its isn't here yet... first patient woes... reminds me of the Imbruvica (ibrutinib) mess that I went through...
I have been assured it will be here before I start, but we are going to debulk with Rituxan for a few rounds... then introduce the idelalisib...
I have been rituxan refractory in the past, so it will be interesting to see if I have any CD20 left... otherwise it will be expensive pee... 💦💧💦
Chris, that happened to me also with ibrutinib. someone messed up with the order. I told the cancer center a week in advance I was to run out specifying the day. A couple months later I got a letter in mail from specialty pharmacy asking my experience with ibrutinib and I told them about mix up in ordering. I hope you were able to report it also. then maybe it won`t happen again to anyone.
Can I add a word of caution about adding iron to your diet with supplements. Most anaemia in CLL patients is not because of iron deficiency but is related to a degree of bone marrow failure because of the CLL crowding out the normal blood forming cells.
In the end stages of CLL, people often need blood transfusions and the additional iron from the transfusions then can result in iron overload which is another problem in itself. What I'm saying is check before you take iron, you don't want to store up problems for yourself for later on.
When I was feeling very tired in late pregnancy, I tried taking extra iron without results but my GP told me to try Folic Acid instead and the effect was instant. I felt like a plant that had been watered!
Good luck Chris, we're thinking of you, please keep us updated with your progress.
Folic acid is the synthetic version of folate. Make sure to take the natural folate form. Folic acid has been linked to colon and other cancers. See chriskresser.com/folate-vs-...
The Science based medicine site agrees with the need to be cautious with folic acid supplements:- 'Is fortification of our food supply harming and hurting? The benefits on NTD incidence have been demonstrated, while the harms haven’t been proven yet. Still, folic acid’s evolving story may become a cautionary tale about the consequences of fortification and supplementation with the hope of improved health outcomes. If we’re not in our childbearing years, we may be better off relying only on food sources for folate. So pass the spinach, and hold the multivitamins with folic acid.'
I always try to look for supplementation from foods before going on to supplements. unfortunately I can not eat spinach . every time I do my skin breaks out but only on my chin, go figure.
Just to show how we're all different - I never had anaemia either before treatment, or for 2 1/2 years afterwards - then it developed, for some reason. The doc gave me ferrous sulphate and a B12 replacement (cyanocobalamin) - that fixed it in short order, and it hasn't come back (I still take the tablets). So it doesn't seem as if the anaemia was linked to the CLL, as far as I can tell.
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Foods to have and avoid for lymph flow and CLL
