new patient from china/help

[martin]

my wife was only 30 years old,and she was confirmed got RAEB-T on March.and with treatment of 1 round chemo.and the results were not goods.and white cell is 1000,and not increase,the platelets is 8.5,and the red cell is only 4.8,and I didn’t how to do for further treatment.anyone can help me?
I knew tablet of AZACYTININE approved by FDA.How about this tablet.and how can I got it?
I am a chinese,and I don’t want lose my wife.shi is only 30 years!

[DonUK]

Hi Martin – you’ll need to find out a bit more regarding your wife’s condition.

The absolute key thing here (rest of board please correct me if I’m wrong) is to get someone experienced with treating MDS.

How long is it since she had her chemo ? The counts may well still rise. Have they done any bone marrow biopsies (BMB’s) ? I would have expected them to have done at least one before and one after the chemotherapy to find out if the diseased cells had been eliminated.

I’m no expert on the drug side of things, but certainly the rest of the guys on the board are.

[DonUK]

Aha – just done some research and I believe this is Vidaza – have a search through the posts as there a few people on the board who are taking it.

Have they mentioned the possibility of a Bone Marrow Transplant (BMT) ?

[Terri]

Aza is not a tablet, It is Administered by Injections.
Hope things start getting better for your wife

[Suzanne]

Martin. Was she in the hospital for 30 days for the chemo she had? Did she get 2 or three different drugs. Did they talk about her having a second round of chemo(another 30 day stay in the hospital after a 30 day rest period?) Are you saying the chemo did not have good results because her counts are still low or because she still has blasts that show in a Bone Marrow test?
It takes about 30 days for the counts to start coming back up if she had what we call “induction chemo” She is so young that she would normally be a good candidate for a bone Marrow transplantand maybe a cure.Does she have brothers and/or sisters that can be tested for a match. At her age she could use the international bone marrow pool. I suspect we need , but there are a lot of treatments for RAEB-t and AML now and more discoveries all the time so don’t give up hope!

[martin]

Thanks a lot with Donuk,Terri,Suzanne,I don’t expect so quick reply for my reqeust.
Now I understand Vidaza is the injection of AZACYTININE supplied by PHARMION company.How can got it aboard from USA?
My wife got 1st CHEMO on Mar.23.and now 40days passed,Her counts(white cell,red cell,platelets)is low due to CHEMO,and now they can’t rise after so long time.Dr.make the bone marrow test on Apr.27.and found that there still has blasts.although it’s a little lower.it means that the 1st CHEMO DIDN’T take good results with her disease.so how can I do for further treament?

[martin]

1)BMT
Dr.told me when the deseased cell were eliminated to low level.then BMT is more successfully.but now the deseased cell were still more.so it’s dangerous to BMT now,is it right?
She have one brother and when her white cell rise up.The dr.will make the test of match for BMT.
2)Chemo
Generally 30 days passed from the 1st round Chemo,the counts will rise up,then continue with 2nd round Chemo,but the most difficult problem for my wife is her counts can’t rise up till now(40days passed),and Dr.want to 2nd round Chemo.I am worried about her body can’t bearing because she is now very weak.but if we don’t take 2nd round Chemo.I am afraid of the deseased cell will increase.
How can I do?are there any treament beside Chemo for RAEB-T?
thanks a lot

[Suzanne]

Martin, Sometimes they use a different drug or drug combination when the first one does not work. Ask if they are changing drugs. What percent is her blast level? I don’t know the answer about whether there is any other treatment to try if the “induction” chemo does not work. Most are used to keep the blast level down so the heavy chemo is not needed. You might try asking about Zarnestra. It is a new chemo that is supposed to be easier on the patient. It has been submitted for approval here but is not approved yet. My understanding is that it has had about a 30% improvement result and some complete remissions. My guess is that you might have to come here to get it.
Check with Jackie Greer study nurse at Johns Hopkins.
Jgreer6@jhmi.edu

[frank]

martin,

where are you in china? basically i am chinese, but i knew there are several good place you may want to try. after the chemo, you have to wait…

try the following link, i didn’t have service with them, but it is good to get some knowledge.

http://www.cn-blood.com/

i think what you can do is to get more knowledge right now, and looking for the option. MDS is a terriable disease, and you have to find a good doctor to deal with it. I don’t you can get the Az5 or not, but Az5 is not like a curable drug either…

Frank

[martin]

To:Suzanne
Many thanks for your good suggestion about my wife diseases.
The drugs of 1st round chemo is very good for Lekumia,I didn’t know English name of this drugs.tomorrwo I will ask Dr.about this drugs.you are right,Dr.now is considering change with another drugs to reduce blast level in recent days.before chemo,the blast level is 27%.and now is 20%.generally Dr.think the level is below 5% means good reaction of chemo.
For the new drug of Zarnestra,Later I will contact with Jackie.thanks a lot for your help! and Hope you will be better in future!

[martin]

Frank,
Nice to meet you in this forum.I am in Hangzhou,and my wife is now stayed in zhejiang 1st hop.
I knew the best hop.in China are ruijing hop.in Shanghai and renming hop.in Beijing.I am worried about my wife situation,but what I can do?after 1st Chemo,I found it’s not very good,so I am now considering chinese herb treament.if you need this information,Later I can help you.
Many thanks for your supply of website in china.
Keep in touch later!!

[Suzanne]

Martin, Above 20% blasts is now considered AML here. 5% is normal provided they are healthy cells that will develop into mature cells. A bone marrow test shows whether they are healthy cells or MDS or Leukemia cells. With that % I am sure she still has some cancer cells there. My bad cells were at 75%and I had definitely progressed to AML when the chemo worked for me so don’t give up! If the doctor & the hospital you have is very experienced with MDS and AML his advice is probably good. The problem may be that you won’t have access to the experimental drugs unless she is in a hospital or clinic that does medical reasarch for MDS and Leukemia.

[martin]

suzanne,You are right,there still exist cancer cell in my wife bone marrow,today Dr.consider to change new drugs against them although they have no 100% confidence.but if we give up,then we will no hope to live.anyway we have to try again and again.
thank you very much!

[Suzanne]

I will be hoping for good luck and good results for your wife and for you. You are right. She is too young. Are they talking about a bone marrow transplant if they can get her into remission?

[martin]

Suzanne,my wife will start 2nd chemo in this week with another drugs.I hope it can work with her diseases.
For BMT.we will consider after the blast reduce to low level.and can you give me some information about BMT?
thank you!

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