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Nixor
Sat Jun 14, 2008, 06:37 PM
Hi all,

this is my first post. My father was diagnosed with MDS (still don't know exactly which type RAEB I or II). This was last month (May 2008). He is 77 y old. Received 4 dose of blood in hospital - fatigue ceased. Up to last year he was in excellent health (last year 4 types of antibiotics; guess it all started then).

Since we live in Croatia (Europe) I don't know if we have an option of Revlimid here (I doubt it, but will ask our doctor). My concern would be (he is only on B12 shot so far) is to what can we do in terms of supplements? I have founded Pomeratrol (http://www.nutritiongeeks.com/pomeratrol-60/pomeratrol.html) which sounds good. Does any one have experience with this supplement?

Thank you for your reply.

Birgitta-A
Sun Jun 15, 2008, 06:05 AM
Hi Nixor,
I live in Europe too (Sweden). Since I got my dx May 2006 I avoid alternative treatment - I have read that different drugs can increase antibodies against red blood cells and I had antibodies from dx (perhaps from taking Echinacea for infections).

I take B12, folic acid (some people say that folic acid feeds leukemia cells but I donīt believe that), B6 and mulitivitamines without iron. Then I never eat red meat since I have been transfusion dependent since dx and realized that I should get iron overload sooner or later.

Revlimid is not yet approved for MDS in Europe but for other diseases so your father could perhaps get it "off record". Then there are clinical trials for MDS in Croatia with Dacogen (decitabine) if your father would like to participate in a trial http://tinyurl.com/5c4ffy. Vidaza (azacitidine) will hopefully soon be approved in Europe because the drug company har shown good results for all types of MDS.
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen injections 2/week

Nixor
Sun Jun 15, 2008, 06:41 AM
Hi Nixor,
I live in Europe too (Sweden). Since I got my dx May 2006 I avoid alternative treatment - I have read that different drugs can increase antibodies against red blood cells and I had antibodies from dx (perhaps from taking Echinacea for infections).

I take B12, folic acid (some people say that folic acid feeds leukemia cells but I donīt believe that), B6 and mulitivitamines without iron. Then I never eat red meat since I have been transfusion dependent since dx and realized that I should get iron overload sooner or later.

Revlimid is not yet approved for MDS in Europe but for other diseases so your father could perhaps get it "off record". Then there are clinical trials for MDS in Croatia with Dacogen (decitabine) if your father would like to participate in a trial http://tinyurl.com/5c4ffy. Vidaza (azacitidine) will hopefully soon be approved in Europe because the drug company har shown good results for all types of MDS.
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen injections 2/week

Hi Brigitta,

thank you kindly for your replay. Finger cross for you and anyone else out there with this disease. I don't know how to approach this. Do we straighten the immune system or not (and if so, what can we take)? As far as for our doctor, a lot of "wait and see" is around, and "we'll deal with things as they happen".

I know that people who answer these post are not doctors but they have expiriance which can help, so my questions are more in line of searching advice in what to ask our doctore and maybe direct her to treatments which she can understand and apply to my father. So don't hesitate to answer.


Thank you again.

Birgitta-A
Sun Jun 15, 2008, 07:36 AM
Hi Nixor,
You know many patients with MDS - like me - are waiting for better drugs for MDS and we only accept treatment for symptoms "as they happen" as your doctor put it.

I donīt think it is a good idea to try to stimulate the immune systeme with an alternative drug - leukemia is one of the complications to MDS.

You need to follow your fathers HGB, white blood cell count and platelets. Write the figures down every time they do blood work. If he gets many transfusions you should follow his ferritin (iron) value and liver tests too.
Kind regards
Birgitta-A
waiting for Eltrombopag/Promacta/Revolade for low platelets to be approved in US, so I can get it on license for my low platelets (last count 43), asymptomatic

Marlene
Sun Jun 15, 2008, 02:49 PM
Take a look at this link and see if you think it would be beneficial to explore.

http://seandennis.com/nac4mds/index.html

I too don't think you want to "stimulate" the immune systems, instead you are looking to restore balance to it by reducing inflammation which can overstimulate some aspects of your system. The way I see it, mainstream & alternative medicine focuses on two approaches to blood/BM disorders. One is on inflammatory process and trying to regulate it. The other is on gene expression. Turning on or off the gene's that are responsible for the condition. I know I'm not expressing myself very well here because it is so complex and I haven't been able to fully understand and articulate all that I've been reading lately. But antioxidants play a big role in reducing inflammation and B vitamins play a big role in proper gene expression as well as keeping DNA/RNA healthy. On gene therapy, they feel that it's not the gene but the environment that it's in which is turning a bad gene on or turning a good gene off. This is my current thinking right now...don't know if it's right or not but I think its directionally correct.

We have focused on correcting nutritional deficiencies for John and are seeing positive improvements in his counts. He does not have MDS though but these diseases are so closely related.

Hope this helps....keep reading all you can.

Joan
Sun Jun 15, 2008, 08:40 PM
Nexor;

My husband gets EPO shots every two weeks for his MDS_RCMD. The EPO is either Aranesp, what doctor prefers or when Medicare didn't pay for that he got epogen or procrit. I don't know what they would be called in Croatia. Incidentally, he is going to be 77. Diagnosed when he was 75. I agree with previous post to keep track of blood counts. Don's dr. is most focused on his HGB.

Good luck.

Joan

Anne-Marie
Sun Jul 20, 2008, 03:35 PM
Has anyone tried nettle tea and yarrow tea? Apparetly these teas are good for stimulating production of blood cells

Nixor
Mon Jul 21, 2008, 05:51 PM
Has anyone tried nettle tea and yarrow tea? Apparetly these teas are good for stimulating production of blood cells

Hi Anne-Marie,

for what I could read nettle is rich on potassium and also contains iron. Since transfusion is adding iron to your count, if you are transfusion dependent, that doesn't sound good. Also my father now has increased potassium. Since he also has a low blood pressure diuretics are not good option to lower potassium. So to us it is not a good option to take.

Again yarrow has diuretic abilities so again because of a lower blood pressure is not an option for us.

Well that’s just my opinion. Hope I was helpful :) .