My Father's Journey

[Ti Lee]

Hello Everybody,I have been here reading some articles for a few days, this is my first post, let's start our story:

I am 30 years old from China, my father is 51 years old and last October, he felt very fatigue and caught cold very often, doctor suggested him to have regular blood test , the result indicated most of the blood counts are lower than normal, we were anxious about that, since he does not have the habit to have routine physical examination every year, we did not predict the situation would be this worse, we moved to the big hospital in the city very soon......

He had blood transfusion at the first day when we arrived in the hospital,we had some more inspection later, Bone marrow biospy, bone marrow aspiration, Fish...one month later, he was diagnosed as RAEB-1，pretty low WBC and RBC with 5.5% blast, we know leukemia but we had no idea about MDS at that time, we were crazy to search the information in internet, we were shocked when we know how serious this disease is……

In the coming two months, he had regular treatment and routine blood transfusion and we planned to do the BMT for him because we know this is the only one way to make him cure even it is very risky, after three months hard work, we are failed to find the donor……

10 days ago, we started the first cycle of Dacogen(5 days continuous infusion per cycle), actually, we use Cytarabine and Homobarringtonie at the same time, he felt very tired right now, blood counts become very low, I know he is in the bone marrow depression period, but still do not know how long it will be, I read some posts in the forum, I found most of the patients here are using Azacitidine , I do not know why they do not using Dacogen, do you have any suggestion? If we are not responding to Dacogen, what should we do? Azacitidine has not been approved in China yet.

Any suggestion would be greatly appreciated, one patient suggested Kirby Stone’s story in this forum to me and I translated, hopefully the wonderful story could inspire my father and all other patients, thank you !

[Birgitta-A]

Hi Ti Lee,
As far as I understand they have many very good researcher in MDS i China. Your father is probably in good hands.

If they can't find a donor they could perhaps do a BMT with umbilical stemcells.

It is not common that patients get 3 different drugs at the same time but combinations of drugs seem to give better results so we can only hope the best.

Azacitidine (Vidaza) has given better results in studies but that eventually depends on that initially Dacogen was administrated in a suboptimal way - now it is given in the same kind of cycles as azacitidine.

As you know Kirby Stone responded well to Thalidomide - in the last years combined with Dacogen. We are all different and still none of the methods that can help us to know who will respond to a treatment is available except Revlimid for patients with the chromosome aberration 5q-.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Positive results with Thalidomide + Prednisone since 2010.

[Neil Cuadra]

Ti Lee,

From your description they are taking good care of your father. Dacogen and azacitidine work similarly; they are both "hypomethylating agents". Since only Dacogen is available to your father, the choice between them was easy to make. It's too soon to know if the Dacogen treatment will be effective. While you wait for a positive response he may need transfusions to keep his counts out of danger.

Doctors classify MDS as having "excess blasts" (RAEB-1) when the blast count is over 5%, but that's a rather arbitrary cutoff. Having 5.5% blasts is only slightly high, very far from the blast counts (over 20%) that leukemia patients have. That's good news for your father's condition. Good luck with the continued treatment.

[Ti Lee]

Hello Birgitta! Thanks for your reply!

Looks like umbilical stemcells is another way to do the BMT. There are not many public umbilical blood in China, some of them are owned by the parants(when the baby was born,the parants paid the money and stored the umbilical blood in the hospital in case some day they could use). i do not know how you are doing,however, we need to do better to increase the public resources to save people's life.

I consulted the doctor about conbinations of drugs, he gave me the answer that the result was better than just using Dacogen in the hospital, piror to the age and health of the patients, some patients are 60-70 years old are just using Dacogen, i hope he is right.


Yes,Revlimid is responded very well to 5q- patients, we have very a few patients with 5q- in China.

Originally Posted by Birgitta-A

Hi Ti Lee,
As far as I understand they have many very good researcher in MDS i China. Your father is probably in good hands.

If they can't find a donor they could perhaps do a BMT with umbilical stemcells.

It is not common that patients get 3 different drugs at the same time but combinations of drugs seem to give better results so we can only hope the best.

Azacitidine (Vidaza) has given better results in studies but that eventually depends on that initially Dacogen was administrated in a suboptimal way - now it is given in the same kind of cycles as azacitidine.

As you know Kirby Stone responded well to Thalidomide - in the last years combined with Dacogen. We are all different and still none of the methods that can help us to know who will respond to a treatment is available except Revlimid for patients with the chromosome aberration 5q-.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Positive results with Thalidomide + Prednisone since 2010.

[Ti Lee]

Thanks Neil !

It has been 14 days after we used Dacogen, all blood counts are still very low, doctors are doing the blood transfusions right now, i have been told to wait at least 6 days.

Thank you for your best wishes ! i hope he will be responded well later !

Originally Posted by Neil Cuadra

Ti Lee,

From your description they are taking good care of your father. Dacogen and azacitidine work similarly; they are both "hypomethylating agents". Since only Dacogen is available to your father, the choice between them was easy to make. It's too soon to know if the Dacogen treatment will be effective. While you wait for a positive response he may need transfusions to keep his counts out of danger.

Doctors classify MDS as having "excess blasts" (RAEB-1) when the blast count is over 5%, but that's a rather arbitrary cutoff. Having 5.5% blasts is only slightly high, very far from the blast counts (over 20%) that leukemia patients have. That's good news for your father's condition. Good luck with the continued treatment.