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CSSAMSU  April 2014

CSSAMSU April 2014

Subject:

Help this kid

From:

LiuYan <[log in to unmask]>

Reply-To:

LiuYan <[log in to unmask]>

Date:

Thu, 17 Apr 2014 01:52:48 -0400

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (1 lines)

转发下面这个为10岁土土签名求药的帖子,昨天已经搜集了2000多个, 可是离需要征集1万个签名还有点远。否则药厂不同意给他试用还在研制的药。他的病已经不能允许他有时间等待更久了,他现在已经不能吞咽进食了。都是为人父母,心存大爱,请大家帮忙转发给你们的朋友。希望我们可以为土土尽快征集到1万个签名,给这个孩子最后一点希望和机会http://www.change.org/petitions/bristol-myers-squibb-please-gra
附土土妈的说明:土土,男,10周岁,2013年3月份体检发现左肾肿瘤,4月份手术切除。但发现时肿瘤已经扩散到左侧颈部和胸部的淋巴。肿瘤至今没有完全确诊。基本上,肾癌的医生认为是xp11.2 基因易位型肾细胞癌(xp11.2 translocation RCC)。 也有别的肿瘤医生认为是血管周上皮样细胞瘤(PEComa)。之后,先后进行5个月靶向治疗(索坦:Sunitinib)和1个月(两个疗程)常规化疗(Doxorubicin 50 mg/m2 and Gemcitabine 1500 mg/m2 biweekly)。效果均不理想,肿瘤继续长大。2014年1月28日第二次手术,试图清扫全身淋巴肿瘤。但是腹腔打开后,淋巴结的肿瘤太多,靠近血管,无法切除;也没有进行原来预定的胸部和颈部的手术。继续靶向治疗8周,4月份CT显示肿瘤比1月份增大了 30%.目前肚子里的肿瘤太多,向上顶到胃部,吃不下东西,会吐。孩子的医生是cincinnati Children's Hospital的专家,在全美甚至全世界在这种肾癌是最有经验的医生。实在因为太为少见 (6年来64例),没有研究数据可参考。孩子的肿瘤一共在Cincinnati Children's, Harvard, Dana-farber, John Hopkins, NIH, Shands, Children's oncology group, MD Anderson 等8家医院进行过病理诊断。肿瘤送到四家实验室进行研究。目前最有希望的一种新药已经在成人中完成临床试验,效果很好,治愈率高。征对儿童的临床试验2014年3月推迟到10月。孩子的医生和Harvard 的免疫疗法专家一致认为这是孩子最后的希望。可是我们没有时间等到10月份了。医药公司不给药的理由,如果我给了你一个孩子,还会有很多孩子来申请,这样会打乱我们的生产进程。生产药的程序复杂,没有足够的供应量等。生产该药有五个公司,我们想向其中三家提出申请,他们是Bristol-Myers Squibb, Genentech 和 Merck。如果有朋友认识这三大公司的人,或参加 clinical trail的人,也希望可以籍此了解情况。谢谢大家!

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