Chinese-Canadians respond to stem-cell call

BY PAMELA FAYERMAN, VANCOUVER SUNMARCH 30, 2010
The number of Chinese-Canadians registered as potential stem cell donors has risen 75 per cent after simultaneous one-day events in Vancouver and Toronto this past weekend.

“We made history. It was the largest one-day stem cell drive event we’ve ever had,” said Sue Smith, executive director of the Canadian Blood Services’ OneMatch Stem Cell and Marrow Network.

The drive, held Saturday at Richmond’s Aberdeen Centre, and in Toronto, saw a total of 4,025 people lined up to get the inside of their cheeks swabbed so cells containing DNA could be collected, typed and entered into a national registry.

Stem cell transplants are used to treat — and even cure — those suffering from blood cancers and other disorders involving benign or malignant conditions.

Chinese-Canadians make up only two per cent of the Canadian registry of unrelated stem cell donors while Caucasians make up 82 per cent. That means that it could be almost impossible to find a donor when a Chinese patient needs one since the best chance of finding a match is within a patient’s own ethnic group. First nations, South Asian and Southeast Asians are also poorly represented in the national and international registries.

Smith credited media coverage and volunteers in community groups for the success of the one-day campaign, which boosted the registry of Chinese donors by 75 per cent. In Vancouver, 1,900 individuals were registered during the event and in Toronto, 2,100 people were added. Said Madellina Lau, co-chair of the Vancouver event and mother of a woman who died last year from leukemia (before a stem cell transplant): “It is so heartwarming to see how much our fellow Chinese-Canadians care for Chinese patients searching for stem cell donors.”

Smith said the Vancouver turnout far exceeded expectations. And now the blood service hopes other ethnic community groups will match the success of Chinese organizations. “We’re working on partnerships with other community groups like South Asians for Life, the Health Association of African Canadians, Aboriginal Nurses of Canada, Filipino and many other ethnocultures,” she said.

Dr. Clay Smith, director of the Leukemia/ Bone Marrow Transplant program of British Columbia and chair of the Tumour Group Council of the BC Cancer Agency, said all the efforts are critically important to patients.

“Frankly, there is a need for representation for all ethnic groups other than those who are descended from European background where donor representation is now pretty good.” There are more than 14 million registered adult volunteer donors in [about] 69 donor registries around the world.

pfayerman@vancouversun.com

© Copyright (c) The Vancouver Sun

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Fairchild TV interview of Mama

Watch Mama tell you why it is very urgent for us all to become a registered stem cell donor. (Cantonese)

New Year. New Home. New Hope.

New Year.

The original plan was for my Uncle Lawrence from Vancouver to spend a month in Baltimore to help Mom out before and after the transplant.  When things fell through and we had to return to Toronto, my dear Uncle insisted on spending the month in Toronto anyway to help out and spend Christmas and New Year’s with Mom and I.

It may be mundane at times – three adults with no particular daily schedule except to Princess Margaret Hospital for check ups every other day, but it was sweet and it was precious family time that I’ll always be able to look back at to marvel over the love they have for me. 

We had people over for Chinese hot-pot on Christmas night, and the three of us rung in 2009 with Maria and Tony (West Side Story) on TV.

In the first week of the New Year (a week or so before Uncle Lawrence’s scheduled return to Vancouver), there was still no concrete next step on the horizon – we were waiting for OHIP’s response to our re-application for funding a different procedure at a different hospital in the States.  Assuming that it would take more than a few weeks to hear back from OHIP, and with Chinese New Year around the corner on Jan 26th, we started wondering:  Is it realistic for Mom and I to fly to Vancouver to ring in the Year of the Ox?

New Home.

Very few hospitals in North America offer Haplo-transplant for patients in remission, and even fewer would do it for someone who is not.  Fred Hutchison in Seattle is one of the few who has a protocol for not-in-remission Haplo-transplant, but their program can only take a couple of patients at a time and could not take me right away.  City of Hope in L.A. is the other possible treatment centre, but my blast cells are up to 40% and are now in the peripheral blood, so there is a chance that I may not be eligible for the protocol.  There were a lot of unknowns.  It seemed that it would be mostly waiting for answers in the immediate months, and should I get lucky with either hospital, they are both out West anyway.

So we started wondering again:  If  Mom and I were to just go for regular check ups twice a week while we waited for “The Plan” to materialize, can we do that in Vancouver with family and relatives around to help out?

On Monday Jan 5, 2009, I shared our thoughts about Vancouver with my Hematologist.  By the following Monday, with the help of Uncle Lawrence, we packed up my entire apartment for storage.  And by Tuesday Jan 13, the three of us were on the plane West bound.

The day after our arrival I made my first visit to the Hemotology Daycare Unit at Vancouver General Hospital who was monitoring my blood levels and physical condition thewhile we waited in Vancouver.  Unfortunately for me, I soon developed a fever due to an infection at my Hickman line site, so the line was removed right away and I spent everyday of the first two weeks in Vancouver between the hospital for anti-biotics and home in bed.

On Jan 26th, with the help of a combination of painkillers and the strength of the Ox, I made it out to Chinese New Year/ my dear friend Susana’s B-day dinner with a huge smile and a bigger appetite!

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New Hope.

When we left Toronto on Jan 13,  I left believing that being closer to family and relatives both physically and mentally were what Mom and I really needed, in order to continue down this in this uncertain journey.  Even though I did not know when or whether things will turn out for the better or worse, I trusted that whatever is supposed to happen will happen.

On Wednesday Jan 28th, I went to my new Hematologist at VGH for a post-infection check up.  Afterwards, he told me that VGH has had considerable success with mismatched cord blood transplant.  ‘Mismatched’ means the donor’s stem cells does not match all of the recipient’s antigens, which you have to match 6 for cord blood transplant and 10 for unrelated donor transplant.

Then completely unexpectedly, he told me that they have identified a couple of 4 out of 6 antigen-matched cord blood units for me!!!!  Although first I have to go through a round of chemo to try and put my leukemia back in remission, and if all goes well, then we hope to proceed with a transplant this Spring!

Cord blood transplant, like haplo transplant, is relatively new compared to unrelated donor matched transplant.  There are certainly different opinions about about their long term success rate.  But I right now, I am starting to feel like there may be hope again (which trust me was hard to dig up after coming home from Johns Hopkins).  Not to mention of all places, Vancouver is The Ideal location I want to have the transplant being closer to family and relatives.

It’s been a week since I’ve been at the hospital for my re-induction chemo, and is expected to stay approximately 1 month.  Hopefully, it will successfully bring me into remission, so that I will be eligible for transplant in the Spring!

Miss you Toronto!

And thanks for taking me in Vancouver!

 

 

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

Support my friend Heather’s run with the Leukemia Society

Please Sponsor Heather Lloyd

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Event Date:

Carolyn returns to Toronto – 家宜暫返多倫多

mingpao-sat-supplement-dec2020081

 

採訪、攝影:陸君樂
圖片提供:譚家誼

原定於今天(12月20日)在美國巴爾的摩(Baltimore)John Hopkins醫院,接受弟弟骨髓的血癌患者譚家誼,因為身體狀況不適宜進行移植,最後需要折返多倫多,目前仍未知下一步有什麼選擇。

本刊曾嘗試聯絡家誼,但她表示現階段並未準備接受訪問,但亦多謝傳媒們的關心,並希望透過我們把以下信息傳遞開去:
……我希望這次報導不只是交代我的最新情況,但亦再次提醒公眾,骨髓移植只限於同一族群,希望大家不只是看我的故事,更會透過登記成為骨髓捐助人來支持亞裔血癌病患者。

過去兩周我們在John Hopkins做了數個移植前的檢查和測試,他們發現我的骨髓內仍然有癌細胞的跡象,加上我的Blood Level不斷下降,令我不能進行Non-myeloablative Haplo Transplant。

現時我們還未知道下一步應該怎樣走……我是否又要做化療?我的心臟是否太弱,連標準的骨髓移植都不能做?如果我需要再次落美國做移植或其他手術,OHIP又會否繼續負責其開支?

眼前雖然仍有很多不明確因素,但我們一家亦因大家的支持而十分感動,亦因此有力量繼續走下去。

 

………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. 

 

 

Thank you and Take care,
Carolyn

 

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

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.

Carolyn off to US for transplant – 家宜赴美求醫

mingpao-sat-supplement-dec062008-001

mingpao-sat-supplement-dec062008-0021

採訪、攝影:陸君樂
圖片提供:明報資料室

當你閱讀這篇訪問時,多倫多血癌患者譚家宜(Carolyn)已經和家人身在美國巴爾的摩(Baltimore),準備12月20日,在John Hopkins醫院接受弟弟的骨髓移植。去年這種移植手術在同一所醫院的成功率達97%,但家宜仍需留院觀察3個月,最壞的情況便是出現排斥,家宜便會內臟衰竭。
但在John Hopkins醫院進行移植前,家宜亦要再做五日化療和一日電療,確保體內沒有癌細胞。「所以這幾個月『有得食好食』,因為做完(化療及電療)多數會發燒、感染,一定有段時間無胃口。」
 

她坦承害怕死亡,不過亦沒有去想太多,而且在這大半年,她已經經歷過不少人的關心,特別是自4月以來,多倫多、溫哥華及香港等社區不少人都為她奔走呼籲,這是很多人亦沒有機會經歷的。如果過了這一關,她亦計劃成立基金及參與癌症知識宣傳工作回饋社會。

在記者前的家宜看來精神奕奕,但其實由今年4月至今,她又已做了3次化療,最輕時5呎6吋的她只剩105磅。

血癌有如計時炸彈
「對上一次(化療)是九月中,現在精神好了些,但感覺到身體比以前弱了。如果一天找不到合適的骨髓作移植,根據醫生的意見,血癌是永遠有機會復發,就如計時炸彈,所以美國此行是冇得選擇的。但我在Princess Margaret醫院的主診醫生幫我爭取到OHIP的資助,因為在加拿大做不到同類型手術。不過其實這不算手術,因為毋須開刀。」

John Hopkins醫院自2003年開始為血癌病人做這種幹細胞或骨髓移植,平均成功率達八成半,去年更達97%。「弟弟的和我的骨髓配對率雖然只有五成,但院方會配以藥物等技術來提高成功率。不過移植後三個月都需要留院觀察,因為如果有排斥通常會很快便出現,最壞的情況是我的內臟器官不接受弟弟的幹細胞,那時我便可能因腎或肝衰竭而死。」

超市職員亦問候
家宜亦坦言會驚最壞的情況出現,「但不會去想,亦沒有計劃這些『如果』出現怎麼辦,因為有太多可能的情況,如果去諗這些事情是諗不完的。」雖然目前仍未找到與自己配合的骨髓,移植後亦有一定風險,但家宜從沒有怨天尤人,「這樣說可能很老土,但這幾個月我覺得很感恩(blessed),因為唔出事唔知咁多人關心自己。

「例如早前落John Hopkins做檢查,有個好朋友,Susanna專程從溫哥華飛過來陪我和媽咪一起駕車落去,驚我駕車太久太累。當然最多謝我的媽媽和弟弟,但亦有很多auntie、uncle,甚至我媽咪早前去超市買肉,都有職員向她問起我的情況。另外,One Match(加拿大的幹細胞及骨髓資料庫)現在終於有中文版,亦多得王裕佳醫生的據理力爭,這將不止幫助我一個,亦會幫助到更多其他有需要的病人。」

雖然這次南下有OHIP保險,但只包醫唔包藥,「其實就如在加拿大做手術一般,只要是醫生寫紙開的藥都要另外購買,當然不會包其他開支如住宿或弟弟的機票。」由如現時經濟環境不佳,在香港工作的弟弟亦沒有申請假期,只是連續兩個周末飛往巴爾的摩,第一次(這個周末)為了驗身,19日的周末則是為了做幹細胞移植。記者即時想到的是合共近$3000的兩張港美來回機票,但家宜的反應卻是體貼弟弟的健康,「咁飛法,很傷身。」

短期柏文坐地起價
原來巴爾的摩因為有John Hopkins這所名醫院,不少人前來求診,所以短期租屋的市場亦坐地起價,完全無價講,家宜她們在那裏租一個已裝修的柏文四個月便需要$16000(加幣)。

「如果發燒或感染,需要買藥物,例如抗生素,OHIP亦唔包,而我每次做完化療都會有這些情況出現,因為白血球會降到零,抵抗力全無,所以難以估計這方面的開支。如果在多倫多買那些藥,大約每個月$7000。說實話,現在我張張信用卡已『碌爆』。」由於治病所費不輕,所以www.savecarolyn.com 網頁最近都增加了一個捐款欄。

「可能不少人都會覺得我好慘,但我經歷過這麼多別人的關心,相信很多人亦沒有機會經歷,我已經覺得很幸福。而且在4月之後,不少教會亦致電給我們,說會為我們祈禱,亦有朋友帶我們去佛堂。6月的募捐亦籌得25萬,One Match亦多了3000多個樣本,這些事情都令我十分感動。」

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