High RISK MDS

[Momhope]

My mom was diagnose today with high Risk MDS, does this mean that she will get AML?

They want her to start chemo vidaza, is this a good treatment?

[Birgitta-A]

Hi Momhope,
We still don't know if our disease will transform to AML - it is true that more patients with high risk MDS will get AML but most patients will have problems with infections due to low white blood cells or bleeding due to low platelets.

Vidaza is the first drug for MDS patients. A little more than 50% of the patients will respond. There are several other drugs that your mother can try if she isn't responding.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006 with severe myelofibrosis. Tx dependent from dx. Supportive therapy with txs, drugs for iron overload and Neupogen for low WBC until 2010. Started Thalidomide´+ Prednisone 2010 with positive results.

[Neil Cuadra]

Vidaza became available as a treatment for MDS only in the last decade, and we're lucky it was developed. You may also here mention of the drugs Dacogen and Revlimid.

Vidaza kills cancer cells by targeting them based on their DNA, and I hope it will work for your mom. The goal of the treatment is to prevent transformation to AML.

[Momhope]

thank you for the update. I'm so Sad and so afraid with this new. and My Mom is so depress too..
Hope all of your treatments work too.

[Neil Cuadra]

Momhope,

I think you'll find the free educational materials from the Aplastic Anemia & MDS International Foundation to be very useful, possibly reassuring, and definitely informative. If you didn't already get them, request them and select "MDS" from the drop-down list.

[Momhope]

thank you I requested the package. I have my Mom with me this week , she look so good and does not look sick only very depress but the more I read about MDS the more depress, I get. the survival rate is very low and what I don;t undestand why can she be a bone marrow trasplant candidate. she is 65years old and has diabetes, is very hard to wait and know that she could be good in less than 2year, (that is what I'm reading in the internet).

[Neil Cuadra]

Momhope,

We were scared to death when we first read statistics about MDS after my wife's diagnosis, but then we had two realizations. First, treatment for MDS has gotten better and better each year, so the statistics gathered from past cases (before the latest treatments were developed) painted a pessimistic picture that no longer applied. Second, statistics apply to a broad range of patients, from children to octogenarians, and that doesn't tell you the prognosis for one individual patient. We all have the hope that we're in the better-than-average group and will respond well to treatment. That optimism is what drives many of us to work with the doctors, seek the best treatment, and take care of ourselves.

Transplants used to be limited to younger and healthier patients, but two things changed that. First, doctors developed less rigorous pre-transplant regimens that are suitable for older patients. Second, transplant techniques have improved so that the age limit for transplants has increased year after year.

I know things look grim to you, but I think the best way to help your mom is to keep asking questions, learning more, and talking regularly to her doctor. If you accompany your mom to her next doctor's appointment armed with a list of questions, and make sure you get answers to each one, your mom's spirits may be boosted just by seeing the active role you are taking and knowing that you are fighting back against this disease.

[Momhope]

Thank you Neil, for those words..I really need it, yes, I'm not close to Mom she is in NY and I'm in FL but thru a cousing I'm in each of her doctor visit.
next time I see the doctor I going to ask if my Mom could be a candidate for transplant and if so, I'm going to start looking for match.

she has a 2.5 scored, yesterday I try to talk to the Dr but the nurse was the one available and she just gave me bad new but I will have faith and we will come out from this with a victory, I can not just seat and wait.

[ececim]

Hi everyone,
My mom has mds raeb 2. She diagnoed Feb 2011. She didn't take any treatment till now. Now she is taking blood transfusions every week. But she couldn't take platelet becaouse of antibodies. Her plt 4000-5000 now. I dont now what should I do? I'm so sad . ı need your advises. Thanks

[Birgitta-A]

Hi ececim,
As far as I understand they have quite advanced MDS research in Istanbul. Has your mother had contact with a MDS specialist?

There are no drugs for low platelets approved for MDS patients but a patient with RAEB-2 ought to have more active treatment than blood transfusions like for example Vidaza.
Kind regards
Birgitta-A
73 yo dx MDS Interm-1 2006. Positive results with Thalidomide + Prednisone.

[ececim]

Hi Birgitta,
My mom doctor is the best hemo doc in Istanbul. He is working in American hospital which works together with MD Cancer Center in Turkey. He recommended Dacogen or Vidaza in january 2012. But we didn't accept bec of side effects. First year after she diagnosed, was perfect. She was healty only bmb showed %10 blasts. But this year she is getting weak day by day. The doc says she is really powerfull bec. she didn't take any drug she takes just blood transfusion. I belive that if i find right way for her she can live more. But we dont want chemo drugs. She is really powerfull buy i dont know what should i do for her. I'm very confused.

[Birgitta-A]

Hi ececim,
You know I was thinking like your mother during four years after dx and told my doctor that quality of life is more important to me than a long life. I understand that your mother doesn't want chemo with risk for severe adverse effects.

Now you can only try to avoid all kinds of infections - they can decrease all counts. Then you can avoid everything that can decrease platelets - many drugs like pain killers decrease platelets.

She knows that you support her and is grateful for that.
Kind regards
Birgitta-A

[ececim]

Thanks for your advise.

I am looking for herbal things. I wish good and healty life to you. Thanks