10/07/2009

骨髓捐贈登記--請大家告訴大家

以下的這封信是來自我們的教會. 我非常能體會這家人現在的心境. 我和先生在好幾年前就已登記為骨髓捐贈者. 我在這裡呼籲大家去登記, 即使您人在台灣, 也是可以成為捐贈者. 因為現在的骨髓捐贈已跨越國際, 我知道的一個美國小朋友, 他的骨髓捐贈者就是來自歐洲某個國家. 骨髓捐贈就像捐血一樣, 雖然程序上會複雜一些, 但是不會影響捐贈者的健康. 在台灣有慈濟, 請踴躍登記. 即使您沒能成為Kevin的配對, 也許在將來您可以幫助其他的生命. 願上帝賜福給您.
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亲爱的弟兄姊妹們:

我的一个基督徒朋友的儿子,14岁的KevinShen去年八月得了白血病,经过8个半月的化疗,基本康复。可最近突然病情复发。医生正施行化疗,并建议化疗后做骨髓移植(Bone Mallow Transplant)。但是他的哥哥,父母的骨髓检测结果与病人都不符合。由于病人在美国,亚裔人种骨髓捐献者不多,至今还没有找到匹配的骨髓。而这孩子的生命就依赖于骨髓移植了。 Kevin Shen是个初中生,他非常爱学习,爱读书,热爱生活。可他现在只能再次住院接受化疗, 然后等待骨髓移植。

在此我恳求大家伸出援助之手,帮助Kevin 找到匹配的骨髓。您是否能考虑登记捐献骨髓?Dr. Yiping Guo 负责为Kevin 寻找骨髓,如有问题或详细资料可以与她联系 (yipingg@hotmail.com 电话:201-887-6776)。您也可从以下地址查找详细步骤。

Dana-Farber Cancer Institute
44 Binney Street

Boston, MA 02115-6013
(617) 632-2561
(866) 875-3324
http://www.dfci.org


Cammy Lee Leukemia Foundation Inc.
16 W. 32 Street, Suite 10D
New York, NY 10001

(212) 290-2757
(212) 290-2768
http://www.cllf.org

衷心的谢谢您!求上帝的怜悯,慈爱与您永远同在。

唐德宏弟兄


请看下页的注册网址和有关资料





www.aadp.org/pages/register/php


Information on Register as a Bone Marrow Donor
Why is it important to register as a donor?
Every year, thousands of Asians and minorities are diagnosed with fatal blood diseases such as leukemia, non-Hodgkin’s lymphoma, and aplastic anemia. Many will unfortunately need a marrow or stem cell transplant for a cure. They will need people who have similar or identical tissue type as theirs to receive a transplant for a second chance at life. Without this procedure, they will not survive.
Because minority donors represent only 30% registered in the National Marrow Donor Program, the chances for a minority patient, looking for a match, are against them.
By registering as potential marrow donors, you can help thousands of patients who are searching for that miracle match. You will also be one of more than 10 million volunteer donors worldwide who are willing to donate marrow to a stranger in need.
What is HLA?
HLA stands for Human Leukocyte Antigen. By getting HLA testing, you will find out your tissue type that can determine if it matches a patient’s.
HLA antigens are found on most of your cells in your body. They also recognize which cells belong to yours and which do not.
HLA tissue types are also inherited, which means that a patient is more likely to find a match within their own race or ethnicity.
Who should join the registry?
Anyone between age of 18-60 and in good health.
What exactly I need to do to join the registry?
Fill out a donor registration form with contact information, health history questions, and a signed agreement to join the registry.
Give a sample of your cheek cells by swabbing the four corners of your mouth to test for your tissue type.
Update any changes: name, new phone number, address, or any major health changes.
Stay committed as a potential marrow donor.
Be ready to donate your marrow or stem cells if you are a match.
You can register online through websites of organizations authorized by the National Marrow Donor Program (NMDP), such as Asian American Donor Program (AADP in west coast, ) and Cammy Lee Leukemia Foundation Inc. (CCLI in east coast, ),
or
You can go to the bone marrow drive sponsor by these organizations or your local blood center to register and get tested.
When will I donate my marrow or stem cells?
A representative from the National Marrow Donor Program will contact if you are a match for a patient. Before making your decision to donate your marrow or stem cells, you will have an informational session of the donation procedures, possible side effects, and risks. You will also have a physical exam to ensure that donating will not pose any risk for you and the patient.
What are the donation procedures?
There are two:
Marrow donation
This is an out-patient surgical procedure.
Donors will receive anesthesia. The doctor/s will use needles to withdraw liquid marrow from the back of the pelvic bone, called harvesting. After the donation, the donor will probably feel some soreness/discomfort in his/her lower back for a few days or longer. Some doctors may have the donor stay overnight at the hospital. The patient’s insurance will cover any costs if that occurs. The donor’s marrow completely replaces itself within four to six weeks.
PBSC donation
Peripheral Blood Stem Cell donation is also an out-patient but not non-surgical.
Five days before donating their stem cells, the donor will receive daily injection of a drug called filgrastim, to increase the number of blood-forming cells in the bloodstream.
The donor then goes through a process called apheresis, where their blood is removed through a needle in one arm and passes through a machine that separates out the blood forming cells. The remaining blood is returned to the donor through the other arm.
Donors may experience headache or bone or muscle aches for several days before collection. These are the side effects of the filgrastim injections and disappear shortly after donation.
Do I have a choice of which procedure to donate?
When you joined the registry, you agreed to donate whichever method is needed.
The patient’s doctor asks for either marrow or PBSC, depending on which is best for the patient.
Will I receive any information on the patient I donated to?
Some recipient’s transplant center may provide you updates within the first year after the transplant.
There could be anonymous communication between you and your recipient after the first year.
There can also be direct contact between donors and recipients after one or two years, if both you and your recipient agree.

Source: Cammy Lee Leukemia Foundation Inc.,

6 comments:

  1. 胖猫,
    听到这样的消息我都会觉得很难过,因为我的一位亲属也患了白血病。我们家人的骨髓也是不能吻合。一般这样的情况,亚裔的骨髓只有台湾的资料最齐全了,但是我们没有人能帮忙和台湾的组织联系。还有千辛万苦的如果找到了,就算是100%吻合,移植后的感染风险很高。很多成功移植的病患都是后来的感染又离开了。还好老天有眼,帮我们了一个忙。。就是以药物医疗,但也有缺点。价钱非常昂贵(印度的会便宜很多),而且一吃也不能断然停止。医生朋友都说骨髓移植的风险比吃药高。。我的亲属也吃了6年的药,每一年就是一大笔费用,但人看来真得很正常,很健康。
    这是那药物的资料,白血病有好几种,这是属于CML的。
    Kinase inhibitors. For most people with CML, the drug imatinib mesylate (Gleevec) is the first line of therapy. Imatinib mesylate is a type of cancer drug called a kinase inhibitor. It was specifically developed to inhibit the BCR-ABL protein, and it has proved effective in treating the early stages of chronic myelogenous leukemia. The Food and Drug Administration has approved two other kinase inhibitors, dasatinib (Sprycel) and nilotinib (Tasigna), which may help people who can't take or who've become resistant to imatinib.
    dd

    ReplyDelete
  2. To dd:
    我不知道Kevin得的是哪一種leukemia,不過很多小孩得的是急性的AML或ALL。當在化療當中或治療結束後又復發,表示化療無效,只能做BMT。而Kevin現在復發後所作得化療,依我對leukemia治療的認識,應該是暫時壓抑癌細胞得作用,好讓醫療團隊有多一些時間找可配對的骨髓。沒有錯,BMT的危險性很高,除了你提到的感染,還有排斥也是一大問題。我參加過一個小小孩的喪禮,他就是嚴重排斥而沒能made it。有時候新的骨髓也不見得能cure,我文中提到的小男孩的donor是10 of 10 match (一般只要是5 of 6 match就算是配對成功),但新的骨髓也沒能killed所有的癌細胞,在與癌症奮鬥五年之後,他還是走了。雖說成功率不是百分之百,但當沒有其他的治療方式可使用時,任何可能的治療都是一線希望。若不能成為Kevin的donor,但我相信一定還有其他人在等待適合的骨髓的。

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  3. To 大姊:
    沒有親屬關係的捐贈者,我記得沒錯的話,有年齡的限制。所以不用convince C去登記或當donor。

    在這裡謝謝您的熱心響應,真希望大家都能像您一樣。

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  4. 如果是这样的情况,只有BMT了。
    这可是个艰苦的寻找。。希望美国的白血病组织是积极有效的。有望早日找到适合的骨髓。
    当时我们这里。。真的很无助,很想哭。
    不要说是去当一位骨髓捐贈者,沒有親屬關係的不能,只是检查骨髓的吻合就要几百元了。这样的情况。。贫困的親屬连检查也不去了,还有迷思的人认为不能捐贈骨髓。。很多生命就是这样走了。

    希望台湾的朋友能去献一份力量!!

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  5. 因為我有海洋性貧血基因,無法去捐贈,但我會將此訊息傳給朋友。
    由於醫學的發達,我家族在十多年前驗出有海洋性貧血,我相對也面臨到兒子找對象時千萬不能和有海洋性貧血的女孩交往。
    願全能的上帝保守受難的生命!

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  6. To Judy:
    多謝您的熱心幫忙. 雖說bone marrow drive不見得找的到配對, 但也可能幫助到其他的人. (有一位BMT coordinator告訴我, 他工作15年, 只有一次靠BM drive找到配對成功的.)

    真的. 任何一個生命都是很寶貴的, 特別是年輕的生命. 不像老年人, 年輕人應該還有一段很長的生命要enjoy. 所以我們能幫忙, 就盡可能幫忙.

    現在科技這麼發達, 相信你的兒子到時候要結婚時, 搞不好還是可以有健康的下一代.

    ReplyDelete