Hello all. It's been a long time since I popped in here, but do spend a lot of time on the Facebook group. I have a question and wonder whether any of you have any thoughts/experience/advice. My BCR-ABL is undetectable, and has been for over 18 months. My haemoglobin levels are normal at 126 (I've been aiming for 125 since I was diagnosed with a number of 77). At my last consultant appointment last week - I was told that my ferritin levels were really low: 23 rather than 100. No wonder I've been feeling tired! I have been told I might need an iron infusion - and if it's anything like the blood transfusion I had when I was first diagnosed, I know it will make a massive difference to my energy levels. I was told not to worry, so I'm not worrying. But I'm interested to hear if anyone else has experienced this? I do hope for some interesting, informative replies. Thank you very much. x
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CML - Nilotinib - Low Ferritin
I have been on Tasigna for 2 1/2 years and never had any below normal blood counts, so don't really have any advice. With you being undetectable for 18 months, have you been able to reduce your dose? I have been on 150 mg/day for 1 1/2 years now and have maintained PCR <.003%. This has made a big difference in reducing side effects.
I have mild anemia due to lower red blood cell count which led to lower hemoglobin and hematocrit levels. I supplemented with a heme based iron supplement in order to "fill up" as many of my few red blood cells with necessary iron and it worked. My hemoglobin/hematocrit levels rose and I felt more energetic.
In your case, you report normal levels of hemoglobin, but your iron is too low to make use of it. consider adding a heme based iron supplement. Heme based is important as it aids in absorption. Many iron deficient problems are metabolic due to poor absorption (low stomach acid is one cause). Typical iron supplements are a waste of money as most of it is never absorbed. Ask your doctor to test for iron absorption issues and see if you can correct the source of the problem.
If absorption is the issue - iron infusions may be the only way to get your iron stores increased. But I would try supplementation first.
Hmmm. Interesting. I am just menopausal now. And was a regular blood donor for many years before diagnosis 3 years ago. I have been taking over the counter supplements (Spatone liquid iron) for quite some time, but I actually don't know whether it's absorption. And maybe they don't want to waste any more time with me trying to do it myself - and that's why they are going for the infusion. Which I am quite excited about. Thank you for your input - informative and appreciated.