Diagnosed 7 months ago. Age 65, still working, fully functioning. I understand my condition is a combination of increase in white blood cells and decrease in red blood cells (RBC). A reduction in RBC can cause anemia, tiredness, shortness of breath because less oxygen is transported through body. So, I want to fight back on my RBC loss with a variety of natural aids to increase RBC: iron supplements, vitamin B12, etc.
Has anyone else tried this?
My advice regarding the idea of iron supplements is: don't take one unless a blood test shows you are iron deficient. In most cases of people with CLL who develop anemia, it's not due to lack of iron but rather to lack of available space in bone marrow to manufacture red blood cells. To unnecessarily add iron to your body could result in iron overload because body does not have any easy way to eliminate iron. I was severally anemic for a long time due to CLL. I became transfusion dependent for 5 months before starting treatment (and for first month of treatment. Iron supplements would not have helped me.
B12 might not be a bad idea. I take it daily. But you might want to have your B12 level in blood checked first.
good luck!
kim
This was super helpful advice because we automatically want to add iron somehow. Thanks.
Adding iron is important BUT tests have to confirm its low
Yes, that's the only time iron should be added - if tests show low iron. Ideally have a full iron panel done, not just ferritin .
Bigarch,
I agree with Planetarykim, there is a lot more to CLL and any related RBC decrease/increase than B12 and iron. Your Dr. can keep you apprised of what you may need to keep or bring up levels. Some Drs. you have to ask the questions though.
Now, Welcome to the best forum to share and learn together with those going through CLL, though at different stages and with different profiles of CLL.
I hope you will read the following linked posts to help you on your new journey with CLL. And here's hoping you do pursue a regular healthy diet of just good foods,and exercise to keep your strength up and keep you fit. The watch and wait time is a blessing for us when we have time to live as full a life as we can and prepare for any treatment we may have. Best wishes to you
NCCN CLL PATIENT GUIDE
nccn.org/patients/guideline...
WHEN WILL I NEED TREATMENT
healthunlocked.com/cllsuppo...
COPING STRATEGIES
Like you, I had an increase in white lymphocytes and a decrease in red cells. However, I was diagnosed with autoimmune hemolytic anemia (AIHA) where my body attacked my red cells.
My CLL specialist advised taking folic acid supplement, to try and help hemoglobin level, which kept crawling down but was still within acceptable range until about January of this year--it seemed to slow down the rate it was dropping, but was not a solution to the overall problem.
My specialist had told me that if it got below 10 (USA) then we would need to consider treatment-and it was below 10 at my appointment in January. I felt, weak, very fatigued and had episodes of racing heart and breathlessness. I had Rituxan infusions beginning late January, which were supposed to help raise the hemoglobin and perhaps lower the lymphocyte count. However, although the infusions lowered my WBC from 225,000 to normal range, it did not nothing to help the RBC and in fact it went down further and was so low that I needed a blood transfusion and IVIG infusions to bring me out of the "critical" range. I am now taking Imbruvica which seems to be helping as I do not feel breathless, weak, or out of breath like I was feeling when I had the low hemoglobin.
I would advise looking at the hemoglobin level on your last blood test, and compare to previous ones. Consult with your doctor about whether folic acid would help you.
Hi Scottxxoo. I picked the name because I am a six foot tall architect.
Hello Bigarch
I go along with others on here, get tested before taking any supplements. Your bone marrow will struggle with having enough room to produce red blood cells. I was tested for low vitamin and minerals, which I take per my doctor. I also make sure I eat daily protein and fast walk 3+ miles a day. Your cells are made of protein. I feel the daily exercise has improved my oxygen supply and also tells my body that it needs more red blood cells. You will also have more peace of mind.
Good question. , you could take a iron supplement but watch your iron levels. IE get tested , Diet plays a key roll in keeping your blood healthy. I would. Take 1/2 of a daily recommended iron dose not a full dose and get it checked quarterly . Discuss with your Dr
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Blood Cell Crowding :
