[QQ]

It is actually doctor’s recommendation that we should do transplant very soon according to his many cases. The doctor is afraid of losing the best timing for the transplant (otherwise, I would not be back in a hurry). My sister’s condition is not good after the first stage chemo, according to the doctor. Her blast was back to 15% very quickly after the low-intensity chemo (It dropped to 5% from 17% during the chemo). My sister’s mental condition is good these days when I am back. We are also very concerned of the high risk of BMT, but the doctor looks confident of beating the side effects after transplant.

I did not know Immunosuppression therapy. I thought that it is an alternative. I will do more research on it.

[QQ]

Dear Patti,

I am glad that you are feeling better now. You are a great daughter-in-law and I get a lot of power from you. MDS is so unexpected that we need some time to accept something that we did not think that we could in the past. You have been doing so great all the time. I also want to thank you to share with us your valuable experience.

[QQ]

My eldest sister’s blood test results are normal before the end of 2003. The first time when abnormality was found is in November 2004. Following is some blood test results since then:

1. 11/26/2004: WBC (2.8), RBC (3.25), HGB (125), PLT (153).

WBC and RBC are less than normal, especially WBC. However, no reason was found at that time.

2. 12/20/2004: WBC (3.2), RBC (3.33), HGB (122), PLT (103).

Still the reason is not found and it looks a little better. No further treatment suggestion from the doctor.

3. 11/08/2005: WBC (2.0), RBC (2.73), HGB (106), PLT (123).

It is a serious issue since all WBC, RBC and HGB are less than normal.

4. 11/17/2005: WBC (2.2), RBC (2.49), HGB (101), PLT (178).

Some doctors suspect MDS, but no agreement. Some further tests were done.

5. 02/17/2006: WBC (1.54), RBC (1.64), HGB (70), PLT (137).

6. 02/20/2006: WBC (1.8), RBC (1.76), HGB (75), PLT (133).

7. 02/27/2006: WBC (1.9), RBC (1.52), HGB (67), PLT (146).

serious doubt of MDS.

8. 03/16/2006: WBC (2.0), RBC (1.01), HGB (44), PLT (105).

9. 03/28/2006: WBC (1.5), RBC (1.15), HGB (44), PLT (98).

Diagnosed as MDS.

Since early April, she moved to Beijing for treatment. She is currently undergoing 2-stage chemo. The doctor suggetsed SCT soon. Her blast dropped from 17% to 5% in the first stage. But she is very weak. These several days, she had a fever and recovered today. WBC is between 0.9 to 1.2.

We seriously doubt that it orginated in 2004 when her office building is decorated. She felt sick with the paint. Although she moved to another company after that, MDS perhaps already started.

[QQ]

Dear Frank,

I rent a one bedroom with my mom and elder sister. It is near the hospital. My phone number is 64076763. We can talk to each other when you are back and have time. Thanks.

[QQ]

Dear Jimbob,

Thanks for your post.

From my knowledge of MDS, I know that it would not hurt me and I am not afraid at all. Mom knows too little about MDS (we don’t want her to know all either) and for most old people in China, they would think that it is detrimental. Mom is worried about me and my sister as well.

But even if the SCT hurts me, I would still help my sister without hesitation if this will lengthen her life. She is too young. Her daughter needs her and we all love her.

What I am concerned is that mine actually is not a perfect match, but the doctor thought that it is acceptable and it is almost equivalent to a perfect match from an unrelated donor. I just hope that the side effects can still be controlled without the perfect match from me. I also wish to hear more from you on your experince after your SCT. Thanks a lot.

[QQ]

Dear Frank,

Thanks a lot. Let’s keep in touch.

[QQ]

Dear friends,

Thanks for all of you. I came back to China two days ago and had done the blood test in the morning of the next day. Finally I could access internet several hours ago.

My sister’s situation is not very good these several days. She had a fever and also had difficulty breathing in the evening. Her white cell is only 1.1 today and 0.9 yesterday. My brother-in-law and I will probably talk to the doctor on how should we go on the next step. I also got sister’s old medical records and probably ask for some suggestions later in this forum.

Mom did not realize the seriousness of MDS. I told Mom that I want my sister live longer even if I would live shorter. I will try my best. We could not lose my sister, especially her young daughter.

[QQ]

Thanks Judy.

I will go to China in three days and my sister is very excited these days. She believes in that she will be cured with SCT. I know that it is still a long-time difficult process and all of us will try our best.

I also learnt yesterday that mine actually is not a perfect match, but the doctor thought that it is acceptable and it is better to do SCT ASAP. We will discuss further after more tests.

[QQ]

Dear Theresa,

I am so sorry to hear this news. I wish all my friends here a healthy life in the future.

[QQ]

Hi Frank,

I have not got it. Maybe because when I registered in this forum, I chose to let the administrator to send me email, rather than send me directly. If you want to send me email, you can send to me at qianqiuliu@yahoo.com directly. Thank you very much.

[QQ]

Hi Patti,

Congratulations on the good news. I actually don’t know too much about Chinese medicine, but my mom believes that it is very helpful. I will let them know your MIL’s experience. Thanks a lot.

[QQ]

Thanks a lot, Patti. This info surely is very uesful for us. I also noticed that the server was down last night.

I will call my elder sister tonight and give her the tips I got from you. She and my brother-in-law will talk to the doctor today on what they will do next step.

[QQ]

Dear Jaggyone,

I am sorry to hear of this and I hope that your husband is feeling better now.

Since my sister is considering transplant, I have one question for you: Did the doctor tell you the reason of the relapse? Is it due to the blast is not killed to 0% level during the transplant or because of the HLA matching is not perfect?

I will pray for you and your husband.

[QQ]

Dear friends,

Both of my sisters did HLA test yesterday. My eldest sister is having the low-intensity chemo. Her blast level is about 5% now, much lower than before. However, her platelets counts are very low and the doctor is also concerned.

I guess that we should try Patti’s recommendation: fresh pineapple juice and black sesame seed. I also heard that peanut peel can help incerase platelets.

Thanks for all the help. My elder sister will send me more data in a couple of days.

[QQ]

Dear Frank,

Thank you. When I read some old posts here, I found the name of you, Martin and also Zan Li related to China. I have not found some recent emails from Martin. I hope that his wife is better now and I will pray for all the patient friends here.

My eldest sister told me before that her MDS belongs to RAEB-2. But I don’t find this category in the FAB system. Since there is a “transformation” in the chinese name of her MDS, I think that her MDS is RAEB-t.Also from the median survival rate that we were told, it looks like that her MDS is RAEB-t.

She lives in Guangzhou. She was treated in Southern (Nan fang) hospital before and the doctor there suggests CHEMO. One week ago, she moved to No. 1 hospital affiliated with Beijing University. The doctor there suggests SCT. They moved because they were told that the doctor in this hospital has a lot of experience of SCT with MDS patients.

We tend to treat with SCT before we know the low success rate and many side effects. Therefore, we have not decided yet. My elder sister arrived in Beijing five hours ago from Seattle. We should probably know by the end of the week whether there is a HLA match. I hope that both of us will be a match with my eldest sister. So far, my eldest sister believes that with SCT she will be cured and we also encourage her. BTW, Could you tell me the name of the two hospitals in China? Have you considered SCT or are you waiting for a donor? Sorry I ask this to try to know more cases with SCT before we make the final decision.

[Author]

Posts