Carolyn’s transplant cancelled – 譚家宜移植骨髓夢碎

http://www.mingpaotor.com/htm/News/20081218/tfa1.htm

<明報專訊> 兩周前赴美國巴爾的摩Johns Hopkins醫院,準備接受骨髓移植手術的華裔血癌患者譚家宜(圖),出發前滿懷重拾健康的希望,不料檢查結果發現體內仍存在癌細胞,最終無法進行手術的她,於上周六返回多倫多的家中。

遭受沉重打擊的譚家宜難免感覺失望,她昨日透過電話表示,現階段她的身體狀態無法接受記者的訪問,但就會電郵一封聲明給《明報》,透露她此行由於(化療後)體內仍然存在癌細胞而無法進行手術,以及她希望對公眾透露的信息。

記者昨日聯絡到譚家宜﹐她的聲線聽來無比疲累,譚家宜表示,她和母親目前正身處醫院,不方便講話的同時,亦希望記者理解她目前身體狀況仍未有接受訪問的準備,亦表示「不知下一步該如何辦」,隨後譚家宜依約給記者電郵來一封個人簡短說明。

「對我來說最重要的不僅是向公眾報告我的近況,還要提醒大眾,亞裔骨髓捐贈者的樣本數量仍然相當有限,希望在這個聖誕期間,大家不僅是閱讀我的故事,同時亦能採取積極行動登記樣本,支持所有的亞裔血癌患者。」

「過去兩周,我們在Johns Hopkins醫院進行了各種骨髓移植的前期檢查,檢查發現體內仍然存在癌細胞,表明我不符合做骨髓移植手術的條件。」

「在這一刻,我們真的不知道下一步該如何做:我是否需要做進一步的化療?我愈來愈脆弱的心臟,是否還能承受在別的醫院做骨髓移植手術?假如美國別的醫院能做這個手術,安省OHIP能否仍舊資助我的手術費用?」

“It is important to me that the next report is not just an update on my situation, but to remind the public again, that marrow transplant is limited within one’s ethnic group, and I hope that people will not just read our story but support all Asian leukemia patients, now and in the future, by Taking Action and registering to be a marrow donor right away.
 
We spent the past 2 weeks at Johns Hopkins doing various pre-transplant testings, through which they found traces of leukemia cells in my marrow, plus my blood levels have been dropping consistently, which rendered me ineligible for the Non-myeloablative Haplo Transplant.
 
 
At this point, we really don’t know what the next steps are – Do I need more chemo? Has my heart become too weak for standard Myeloablative Haplo Transplant?  Will OHIP still cover me if another hospital in the States would take my case?

There are a lot of unknowns right now, although my family and I are very touched by all the well wishes we have received and will continue to draw strength from the support from the community.”

譚家宜於11月29日在母親和友人的陪同下赴美國巴爾的摩Johns Hopkins醫院,準備在明日接受弟弟的骨髓移植,雖然弟弟與她的骨髓配對率只有五成,但院方將配以藥物等技術來提高配對成功率,該院進行這類手術的平均成功率達八成半,去年更達97%。而Johns Hopkins醫學院及醫院在美國都是首屈一指的。

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

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

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■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。

胞弟救血癌姊 譚家宜赴美做幹細胞移植

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左起﹕王裕佳醫生﹑譚家宜和其母親劉慕平合照。(孔偉民攝)

http://www.mingpaotor.com/htm/News/20081129/tbc1.htm

【明報專訊】早前向加國華社和不同族裔呼籲捐出幹細胞 樣本﹐盼醫治血癌的多倫多華裔女子譚家宜﹐現獲得胞弟譚家強捐出幹細胞移植,並有50%合適機會﹐定於今日啟程前往美國馬利蘭州的Johns Hopkings Hospital進行Stem Cell Haplo Transplant幹細胞移植手術。

譚家宜本人和她母親﹐及長 期協助譚家宜尋找合適幹細胞的王裕佳醫生﹐3人均對今次手術成功深具信心。王裕佳昨日聯同譚家宜﹑其母親劉慕平會見傳媒。譚家宜表示經為她治療血癌的瑪嘉 烈醫院醫生建議﹐前往美國以進行Stem Cell Haplo Transplant幹細胞移植手術盛名的Johns Hopkings Hospital進行上述手術﹐她說捐出幹細胞給她的是在香港的胞弟﹐他會於稍後前往當地醫院與她會合﹐她會在當地停留約4個月。

譚家宜指是次手術費用獲得「小麗莎基金」資助和安省OHIP承包費用﹐但其他費用包括食住交通費及醫院外以藥單購買的藥物﹐則需自行支付。

她說手術後會返回多倫多瑪嘉烈醫院繼續由專科醫生跟進病情﹐而她則會分別在半年和一年後再到Johns Hopkings Hospital覆診。她特別感謝王裕佳醫生過去多月對她病情的關懷﹐和社區人士對她的支持。

王 裕佳表示﹐Stem Cell Haplo Transplant幹細胞移植手術是可醫治血癌﹐但進行此種手術條件是捐出幹細胞人士必須是進行手術者至親﹐他指過去多年在Johns Hopkings Hospital進行Stem Cell Haplo Transplant幹細胞移樹手術﹐成功率高達85%﹐加上譚家宜年青相信康復會更快﹐故此他們對是次手術十分具信心。

他說雖然加國魁省有醫院亦可進行上述手術﹐但輪候時間極長﹐而譚家宜現在的健康狀態是最佳時候進行手術﹐加上又獲悉其胞弟捐出的幹細胞有逾50%合適機會﹐因此譚家宜到美國進行手術是合適時候。

譚家宜母親劉慕平感謝各界人士尤其是華社﹐過去長時間協助女兒尋找合適移植幹細胞﹐她呼籲華人繼續捐獻幹細胞樣本﹐好讓一些需要幹細胞移植的血癌病患者﹐獲得合適幹細胞而可重獲新生。

市民欲進一步了解有關血癌患者譚家宜資料﹐可瀏覽網頁www.savecaroly.com。

Update: It’s time for Plan B

Before I give you my update, I want to send our love to the family and friends of Emru Townsend and Hector Arenas.  These guys were amazing individuals and fought an incredible fight and they will forever be in my heart.

I want to congratulate Graham Barnell and his family on returning home to Melbourne after months in Seattle for a double cord blood transplant.  Graham and his wife, Samantha, are paying for the treatment ($500,000+ USD) out of their own pockets and I appeal to all of you to pleeeeease help support this family’s brave journey to save Graham’s life by donating towards their medical fund.

I want to cheer on Michelle Maykin and her husband Van, who are away from home for a double-cord transplant in Seattle’s Fred Hutchison. Michelle’s incredible strength and positive attitude have been always been a source of inspiration and reminder for me to stay strong each time I feel like I couldn’t handle this anymore.  I wish for nothing but all of Michelle’s “I want’s” to come true as soon as possible!

Also a cheer to Dr.Guha and his family who are also away from home for an unrelated match transplant in California’s City of Hope.

As for me….

Me, my Mom and my childhood friend, Susana, from Vancouver just spent all last week in Baltimore, Maryland to meet with the transplant team at Johns Hopkins Hospital.

One appointment with one doctor, ended up being multiple appointments throughout the week with 2 different doctors, various coordinators, blood tests for me and Mom and having to find an apartment for when we go back Dec 1 to stay.

Aside from information overload, having to find an apartment within a few days, and notwithstanding the circumstance…..I am really glad I got to take this road trip with Susana and Mom – we also took a side trip to Washington DC.

Me and my whole family will be going back to Baltimore on Dec 1. My brother Patrick will be traveling back and forth between HK and Baltimore during the whole month of Dec, and my Mom and I will be staying there for 3 months.

The goal now is to have a Non-myeloablative Haplo-transplant before the Holidays – this is a transplant of Patrick’s stem cells since we did not find an unrelated donor match and Patrick is a confirmed 50% match.

Johns Hopkins has been doing this since 2003, and the chances of developing severe Graft-vs-Host-Disease is around 6% and the survival rate is 85%, although with my age I was told the odds are even better.

The flip side of this protocol is that the relapse rate is higher than traditional Myeloablative haplo-transplant.  However, they say as long as I don’t completely clash with Pat’s cells, we can do a Donor Lymphocyte Infusion (DLI) which is sort of a mini transplant if I relapsed and they have proven results that this subsequent infusion will get the job done

Although we didn’t end up finding a match for me, I still feel really lucky and blessed to have received the amount of support I did, and to have made a lot of new friends along the way.  I hope what we accomplished this past Summer is only the beginning, that you will join me and many others in continuing to spread the word about the dire need for new marrow donors within all ethnic communities, and I hope all our efforts will become that much needed silver lining for other leukemia patients in the future.

TOGETHER, WE CAN DO IT.

Click here for your local Registry’s link.

I will have internet access at the apartment in Baltimore, so do feel free to drop me a line via email, Facebook or this website, and I will post updates whenever possible.

Thank you all, and don’t worry, because I’m confident I will be home before you know it!