Sing Tao Newspaper 譚家宜赴美將接受新療法.與胞弟進行骨髓移植

img200811290454540

■王裕佳醫生(左起)、譚家宜、劉慕平為家宜終於找到了希望而慶賀。本報記者攝

http://www.singtao.ca/tor/2008-11-29/1227952497d1461417.html

譚家宜赴美將接受新療法.與胞弟進行骨髓移植 配對率50% 醫院成功率達85%

[2008-11-29]
本報記者

多倫多華裔血癌患者譚家宜(Carolyn Kar Yee, Tam)的治療出現轉機,美國一間醫院進行一種骨髓移植的最新技術—Haplo-Transplant(單倍體-移植),使家宜可以和其親弟弟之間進行骨髓移植,雖然雙方的配對率只有50%,但美國這間醫院的成功率卻達到85%。家宜和母親昨日露出了久違的笑容,她們將即日赴美,相信等待家宜的將是一個健康的未來。
一直幫助譚家的王裕佳醫生解釋說,家宜之前一直希望找到100%配對的骨髓,所以在全球範圍的陌生人當中尋找,因為愈是配對成功率就愈高,但大半年的尋找沒有任何結果。譚家也曾考慮過讓家宜的弟弟提供骨髓,但兩者的配對程度只有50%,「加拿大醫院大都採用傳統的骨髓配對方式,在這種情況下,親屬之間如果配對率為50%,手術的成功率就很低,我估計不到四成。」王裕佳表示,正因為此,譚家人之前一直沒有讓家宜的親弟弟提供捐贈,因為覺得手術太過風險。
王裕佳醫生表示,但是上個月事情突然出現了轉機,家宜在多倫多瑪嘉烈公主醫院(Princess Margaret Hospital)的主治醫生向她們提供了一個新情況,位於美國馬里蘭州Baltimore市的Johns Hopkins Hospital醫院,近年採用了一項新的骨髓移植技術—Haplo-Transplant,主要是針對50%配對率的親屬骨髓捐贈者,手術效果顯著,去年該醫院共做了68例該手術,其中66例都存活下來。
絕望中看到希望
家宜的母親劉慕平表示,這個新的技術讓她們全家在絕望中看到了希望,因此決定立即動身前往美國,她們今日就將開車去美國,家宜的手術日期定在12月19日,在那之前,弟弟將從香港前來為姐姐提供骨髓。「她們姐弟感情很好,弟弟幾次從香港飛來,為姐姐的捐贈呼籲。」

她表示,因為Haplo-Transplant是世界上最先進的技術,因此手術費高達50萬美元,但非常幸運的是,安省醫療保險(OHIP)願意負擔所有的手術費。劉慕平對此表示非常幸運,她說,「家宜大概是第一個送到加國以外的地方進行骨髓移植手術的人,因為以前沒有類似的例子,而該手術又還在試驗階段,因此OHIP起初不願意承擔這筆費用,多虧了家宜的主治醫生一次又一次的與OHIP方面交涉,最終獲得了成功。」
劉慕平表示,除了手術費外,她們也得承擔藥品和住房飲食的費用,估計也要花費3至4萬元。因為這個手術不用住院,所以她們打算在外租一間房子,大概會在美國那家醫院呆3至4個月,然後會回溫哥華定居,因為那裡親友比較多。

Advertisements

This is why we need your help. Please watch.

Update: Three Times the Charm

Each time after being knocked out by chemo, the recovery really is like the Sun breaking through after a storm for me.  I know it’s cliche, but the least challenging physical ability that we completely take for granted suddenly become the most “ginormous” achievement.  Like the first time I feel awake enough to watch TV (instead of sleeping) in bed.  Eventually realizing that maybe it’s time to pull up the blinds during the day now that I am not in la-la land most of the time anymore.  Then feeling like my body might actually be strong enough to get me out of bed, onto the couch and sit up for an entire day.  Gradually, food starts to taste the way I remember them again.  Now I actually don’t grasp for air after a shower or from getting changed, and actually venture out of the house for a short, slow walk (but only when the Sun is not very strong).  Then as the Neutrophils rise (ie. immune system improves), there is that first meal out (but only when it’s not crowded since it is still important not to catch any bugs).  For me, the finishing line is when my Mom gave the stamp of approval for me to drive and go out on my own again – the sweet smell of Independence!

These past few weeks have been an amazing break.  I got to catch up with friends I haven’t seen for weeks.  There were barbeques in their backyards, lunches, dinners, afternoons walks – I felt like myself again, and often forgot that I am sick, which was much needed both for the body and the mind.  However, reality will once again set in next Monday as I start my 3rd round of chemo.

It was always my oncologist’s hope that we would have identified a match in July.  Then both the donor and recipient would have a few weeks to go through their respective medical preparations for the transplant.  In which case, instead of a 3rd chemo, we would be proceeding with a transplant instead next week.

However, life does not always turn out the way we planned, but it doesn’t necessarily mean it’s not going to turn out at all.  So while I soldier on through my next chemo happy hour, please GET PEOPLE TO REGISTER – NOW

Our Spread the Word campaign has reached so far and wide that there are no words to describe my amazement, and I THANK YOU FOR ALL THAT YOU’VE DONE.

But before I ask you to spread the word and thankfully sign off, this time I am going to first ask you to take a minute and think about all the administration that has to happen from a donor getting registered, to samples taken, samples tested, data uploaded to the Registry, the match identified, the donor contacted and finally the donor going through and passing procedural check ups…….before a match can be confirmed. 

When you realize that from the moment you register to the moment someone gets that long awaited good news that they have a match, that it can actually take as much as a couple of months, and that there are MANY, MANY people like me all over the world who have to subject their bodies, and soul, through yet another round of chemo because a match has not been found – I urge you to please, not only spread the word, but GET PEOPLE TO REGISTER – NOW.

TOGETHER, WE CAN DO IT. Click here for your local Registry’s link.

DKMS (US) Bone Marrow Drives Calendar

DKMS has posted a page on their website about Carolyn.  You can read it here.

Come out and support us in helping find a match for Carolyn or others like her, who are in need of a stem cell match in their fight against leukemia!

Click here for DKMS’ drives calendar: http://www.dkmsamericas.org/category/marrow-donors/attend-donor-drive

You can also request a kit online from DKMS: http://www.dkmsamericas.org/category/donors/become-donor/request-kit-mail

Mama Urging For More New Registrant

Below is Mama, in Cantonese, pleading to Chinese from around the world to become a registered donor.

 

 

We are so so proud of her.

While she is no doubt enduring one of the toughest emotional and physical challenge of her life, she is also dealing with an unexpected PR challenge with poise and finesse.

Key points include:

  • We are getting all the media attention so far because we are lucky to have met very caring people in the past few months, not because we are anyone special.
  • Leukemia is not an incurable disease.  All we need is that ONE MATCH for Carolyn to survive.
  • I’m ashamed of myself to have known nothing about Leukemia before my daughter was diagnosed with it, and that I have missed the 18 to 60 years old window.
  • Chinese is under represented in the global database.
  • We have not yet found a match after searching the global database including China, Hong Kong,  Japan, Korea, Singapore, Taiwan.
  • We need more new registrant urgently.
  • I have never felt so helpless before, watching my daughter fighting with disappointments day-after-day and coping with deteriorating health.
  • I plead to you all to become a registered donor, to help Carolyn, and anyone else in need.
  • Ask yourself, your friends, your family, to become a registered donor, to insure yourself from what we are going through
  • Stem cells are extracted either from your pelvis or your peripheral blood.  Actual process is dependent on the condition of the donor.  Your bone marrow will grow back in less than a month after donation. (The risks for donating bone marrow are the same as those involved in any general anaesthetic.)
  • I have no control over finding a match for my daughter no matter how hard I work.  It will have to come from the generosity in all of you.  

~ CLICK HERE TODAY TO BECOME A DONOR ~

 

再一次呼籲 我的女兒譚家宜,最近血癌復發,需要造血幹細胞移植,才可以保全生命。最近家宜與我經常見報上電視。我們並不是特殊人物,我們是得到各方媒界的支持,制造機會,讓我們可以代表家宜及全球的華人血癌病患者,向各位華裔朋友作一個呼籲,希望能令你們明白,血癌並不是絕對的絕症。血癌病患者是可以籍你們捐贈的造血幹細胞來延續生命。 

我自已感到十分慚愧,在家宜病發之前,對於造血幹細胞一無所知,更加錯過 18-60歲的可捐贈年齡。原來紅血球,白血球,血小板是造血幹細胞所造。慶幸健康的造血幹細胞是可以移植,經這途徑,血癌病患者是可以得救,生命是可以延續。 

統計數字顯示,十個白人中九個能夠找到吻合幹細胞移植而得以生存,因為白人登記為捐贈者數目是以百萬計。可惜,十個華人裡面九個死亡,更被視為死於絕症。因為華人登記為捐贈者數目只係代表全球幹細胞資料庫總數的8%譚家宜的主治醫生,經過三個多月的資料搜索,到目前為止,找遍全球幹細胞資料庫,包括中國大陸、香港、台灣、新加坡,日本及韓國,仍未能為譚家宜找到吻合的幹細胞。我們正在急切期望的捐贈者。

各位朋友,我現時感受到,臨急抱佛腳的旁惶與無耐。眼見女兒每日爭分奪秒地與時間搏斗,剩下的日子在希望失望中一日一日渡過。我再借此機會,向大家呼籲,為家宜,為全球的血癌病患者,為我地華人的將來,伸出援手一齊在這方面作出未雨籌謀,請響應我的呼籲,支持我的呼籲,登記成為幹細胞捐贈者。鼓勵你的兒女,你的親戚,你周圍的朋友登記成為幹細胞捐贈者,救救在死亡邊緣爭扎的華人血癌病患者。地點可瀏覽 www.SaveCarolyn.com內的 be a donor索引。 

登記後,初步只是抽取血樣辦化驗白血球類型HLA,而你的HLA資料會儲存在國際造血幹細胞資料庫直至65歲。全球血癌病患者都可以向國際造血幹細胞資料庫申請配對。你不單止可以幫助家宜,實際你也正在為每一個華人先作壞的準備。 

捐贈造血幹細胞有兩個方法,其一,幹細胞從週邊血分解出來,程序如同捐血一樣。其二,幹細胞從骨髓分解出來,而骨髓是從盤骨抽取出來。選用方法以個別情況而定。在正常情況下,你的身體會很快填補捐出的部份。

作為一個母親,眼見家宜每日身受的痛苦,精神的折磨,我的心在絞在痛。而我雙手好像被綁一樣,毫無辦法去拯救她,因為幹細胞不是用勞力可以摶取,因為幹細胞更加不是用金錢可以買得到,因為幹細胞是一個捐贈,是發自你們的善心,你們的博愛。我請求大家,為家宜,為全球的華人血癌病患者,為未雨籌謀作出準備,湧躍登記為幹細胞捐贈者,給他們多一個生存機會。我代表家宜及家人先向你們多謝。madellinalau@gmail.com

The African Caribbean Leukaemia Trust (ACLT) in UK

Thanks to Beverley De-Gale, co-founder of the UK charity ACLT, Carolyn’s story has been added to the Appeals Page on ACLT’s website.  Check out the link below

http://www.aclt.org/index.php/appeals/

~ CLICK HERE TODAY TO BECOME A DONOR ~

 

A Message from Charlie Young (楊采妮)

楊采妮呼籲市民去香港紅十字會登記為骨髓捐贈者, 以幫助譚家宜戰勝白血病。

Charlie Young (star of “Bangkok Dangerous” with Nicholas Cage) urges people to help save Carolyn Tam.

 

~ CLICK HERE TODAY TO BECOME A DONOR ~