Multi-Vitamin??

[Nancy D]

I've now had 3 transfusions of irradiated blood, 2 units each time. Currently, my counts have been relatively high for me after the last transfusions about a month ago (red 10.2, white 2.4, and platelets have always been normal). I'm not on any drugs other than procrit and neupogen. My MDS has been classified as Int. 1, and to date no damaged chromosomes. I'm on this wait and see for a transplant, and guess I'm still at the point where the risks of a BMT outweigh the risks of my disease in its current state.

But all of the sudden, I realized that iron overload may ultimately be a problem. I've been taking a multi vitamin, which of course contains iron. Does anyone else take these, or has anyone been told not to?

Thanks, Nancy

[Neil Cuadra]

Nancy,

Do you know how many units of blood you have received so far, altogether? It's worth keeping track since that is a good indicator for when iron overload becomes a concern and testing becomes advisable. It's not the number of transfusions, it's the number of units, since you might get more than one unit at a time.

People at risk for iron overload (those with a history of blood transfusions) should avoid iron supplements and multivitamins with iron. Doctors might want you to avoid iron-rich foods or iron-fortified cereal too. Even Vitamin C can be an issue since it affects iron absorption.

The starting point is to ask your doctor about these issues: the sensible steps to take now with changes in diet or vitamins, and when to get tested for iron overload.

[Vera W]

It has been so hard with this vitamin/supplement thing . It seems that the first thing all the friends and family want to do is set you up with the supplement program and they really believe that they can cure you. My chiropractor wants me to take all kinds of things... I took these things for years, I still got MDS. I told some one recently that it is not that I am unhealthy it is just that my body is making unhealthy cells.I have moderately increased iron (according to my bmb) and I still take vitamin with minerals. My "iron box" regular blood test was normal. Anyway..My doctor told me vitamins were OK but to avoid everything. No green tea, no herbal remedies, no glucosamine condroitin, fish oils, shark oils etc etc I guess it hasn't hurt me, my counts are good.
Nancy, I have RAEB II. I have no chromosome abnormalities and I have needed no transfusions or blood products.My counts are beautiful at the moment (I am on Vidaza injections) and the doctors can't get me in fast enough for a transplant. I had to literally say slow down and let me figure this out. They told me Do not wait. I think finding a perfect match changed my mind since my only brother was a bad match. I don't want to take chances with this thing getting worse. I have also said that it's the devil you know and the devil you don't know. It gets confusing but I have to keep a mind set or I will go crazy! I appreciate everyone's input.

[Birgitta-A]

Hi Nancy,
When I was dx May 2006 and was transfusion dependent from start because my Hb was 7.0 I stopped eating red meat (with much iron) and vitamin C rich juices that will improve the absorption of iron. Tannins (in tea), calcium in milkproducts, polyphenols, and phytates (found in legumes and whole grains) can decrease absorption of iron.

http://ods.od.nih.gov/factsheets/iron.asp

I take folic acid since I have hemolysis (my red blood cells break much too soon and never live 120 days as they should), B12, B6 and multivitamins without iron (but they do contain vitamin C).

I have now received 80 units of packed red blood cells and get Desferal for iron overload iv in my port 4 days with transfusions. Then I take Neupogen 2 injection/week for low white blood cells.

After 6 units of red blood cells there is no risk for iron overload but as Ruth wrote you could ask about your ferritin value. New research shows that the results of stem cell transplantations are better when the ferritin value is low.
Kind regards
Birgitta-A