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Myelodysplastic Syndrome (MDS): how to increase red blood cells?
is there a natural alternative that has shown success in promoting more red blood cells. Currently I am receiving shots of Vidaza but not helping at all. I did better when I had a port but my body rejected it, so now I gt the shots in the back of my arm in the muscle. Strong dosed of vitamin b12 don't help either. With the port I was holding 11 12 easy in red blood cell counts. Normal range in males is 13 to 18. But anything over 10 is great. With the shots I can't break 9 and just had to have a transfusion when my blood counts dropped to 7.2 I don't have cancer but there is risk at that low of having it set in. I was just looking to see if anyone that has this have other suggestions to try. I've bought and tried Prohemia which promises increases of red blood cells but I've tried it for a couple of months with no improvement in counts.
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I will and thank you for the info you've given me. She's 3 years in and apparently the Procrit isn't working any more. Hopefully other treatment options are available
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2 Reactions@pathilt
Hello! I am an MDS patient and would like to echo, add some more information. Is your sister having weekly blood tests (CBCs) to check her blood values? Is your sister sleeping a lot and/or is she short of breath? Low Hemoglobin (HB) and red blood cells are a problem which can affect other organs in your body, like your heart.
You might be surprised to know that not all oncologists are experts on MDS. I do not know where sis lives, but you might try to find an MDS Center of excellence if possible.
MDS changes over time. It is the nature of the disease. Patients are placed on palliative care. Treatment plans are based upon the type (karyotype) of the disease. Presumably her oncologist did genetic testing in Bone Marrow Biopsy (BMB) # 1? She should have been told what karyotype/s she had at that time. Some types of MDS are shown to progress to Acute Myeloid Leukemia (AML) very quickly. Other low risk types like Del 5Q which I have are thought to have a good chance not to progress to AML, but it is not a guarantee. Depending upon the source you read, MDS patients progress to AML in 30-50% of cases. In my case, I have elevated levels of Myeloblasts, which are pre-leukemic cells. I have had 4 BMBs since last July. My CBCs changed drastically in January. All my values dropped. HB dropped from near normal down to 8.7. The Oncologist set my transfusion point at 8.0. I also started Revlimid which is best for Del 5Q. I avoided transfusions and CBC values came into normal ranges. I may be having a setback and am returning to weekly CBCs.
You and your sibs should arm yourself with information. The best site I have found is MDS-foundation.org. You can view their information online, or you can ask them to send you literature. From the homepage, select Visitors and Patients and you will see all the information available which includes literature, IPSS calculators, and MDS Centers for excellence.
I am guessing sis has a low risk form of MDS since it has been 3 years since her condition worsened. Keep us posted and watch your sister. HB at 7-8 requires a transfusion. Some DRs set the level at 7. I don't know if that is the case with your sister's DR?
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1 ReactionI'm so glad I posted here! She has no idea what type she has. She does get a weekly blood draw and procrit injection. She does shortness of breath but is also a smoker who refuses to quit. Without knowing the type & so much else I'm lost. That is why I insisted on going to the next oncology appointment. She goes to the Siteman Cancer Center in St Louis
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2 Reactions@pathilt - Siteman is an MDS Center of Excellence. Keep us posted on progress.
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1 ReactionWill do!
When Procrit stopped working for me, I switched to Aranesp. That worked.
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2 ReactionsMy sis is getting a transfusion today. Numbers took a drop again this week. See the oncologist next week.
WBC 1.8 was 2.2
HGB 7.6 was 8.4
PLT 143 was 154
RBC 1.75 was 1.92
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1 ReactionHi @pathilt! Thank you for the update! I was wondering how your sister was doing. It’s great news that she’s finally getting a transfusion! That will help her feel a little more energized but it is troubling that all her blood numbers are continuing to drop.
Will next week be the first meeting with the new oncologist?
It's not a new oncologist. Just moved her appointment up a month. They mentioned starting her on Luspatercept next week so we'll see.
I expect your sister is feeling a little more perky tonight after her transfusion today. I’m really relieved for her because I know how debilitating it feels to have hemoglobin that low.
Luspatercept is one of the newer meds available for anemia with lower risk MDS so hope this makes a positive difference in your sister’s health. She deserves to start feeling better after all she’s been through! Keep me updated, ok? Sending her a hug.