父亲诊疗日记
序： 父亲１０月１１日ＰＥＴ－ＣＴ诊断肺癌。 这几天一直记日记，希望记录父亲治疗的过程和思路。 算是给自己的鞭策，提醒自己不要偷懒。 如果真有那一天， 回顾来路也希望能有一丝慰籍—至少， 至少我努力了。 写了几天后决定贴到奇迹网上，希望能得到网友的支持与帮助， 也希望自己的一些体会可以帮到其他人。因为出国多年， 中文输入还停留在拼音上。不仅慢，而且错字百出。更重要的是想着拼音就忘了要写什么。 所以后面都用英文写的。 希望版主理解保留。 有时间的话我会把一些重要的体会翻成中文以供参考。
几条我认为有意义的信息：
1． 治疗EGFR TKI 抗药的BIBW现在III期临床已经接近尾声。 效果应该是有的。再者 从动物实验看，加大剂量可以对很多没有反应的EGFR突变产生效果 (尚未发表)。 再者ＢＩＢＷ和ＣＥＴＵＸＩＭＡＢ合用效果非常好。有易瑞沙Ｔ７９０Ｍ耐药的病友， 如果能拿到ＢＩＢＷ又负担得起cetuximab的，这个应该效果极好。
2． WZ4002， 我们去年发在《自然》杂志上的针对EGFR T790M 易瑞沙耐药突变的新药听国内的朋友说国内有公司偷着合成了很多， 并已经私下给病人用了。 这个要还没上人体实验， 但从我们实验结果看副作用应该非常小。它本身对EGFR WILD ＴＹＰＥ 没有作用。 所以应该不会有皮疹腹泻等负作用。有对症的病友可以打听一下详情。
3． 治疗ＥＭＬ４－ＡＬＫ腺癌的要已经ＩＩＩ期临床。从临床结果和动物实验看效果是有但不理想。据说ＮＯＲＶＡＲＴＩＳ的药ＴＡＥ684的改进型已经ＦＤＡ批准。这个可是仙丹。希望能早知道化学结构。
4． ＭＥＫ抑制剂ＡＺＤ联合ＴＡＸＯＴＥＲＥ（泰素帝？）临床ＩＩＩ期也接近尾声。从我们实验结果看应该比单一化疗有更广谱（针对突变类型）的治疗效果 (尚未发表)。
以下是日记。
10月十号很多人都说是个特别的日子。因为是2010年的缘故。 不想我也记住了这个日子， in an unpleasant way. 父亲PET-CT的诊断就在这特别的日子刚过出来了-肺癌IIIB。
2010/10/11 星期一是长周末， 本打算带儿子和全家去郊区摘苹果。 一早起来便有了这个消息。 于是整天在家思考治疗方向，上网搜寻相关信息。 至晚方有些头绪。 院方要求住院活检， 但父亲担心活检刺激扩散， 也有一定道理。最终倾向于中医保守治疗，先出去旅游去想去的地方，吃想吃的东西， 见想见的人。 等到病情进展了再活检。 只是不能最终下决心， 决定转天咨询组里的医生再说。最后一件事是打电话给曾经的同事， 现在北京研究单位。准备拿到组织请他从单位寄到我这里。
2010/10/12 星期二一早工作例会后咨询老板。被老板说服应该活检。最大理由是一要分清lung caner vs lymphoma; 二是分清小细胞， 鳞和非小。 至于转移，因为已经淋巴转移， 所以micro metastasis应该已经存在， 这一点风险也就认了。 然后找PAJ敲定拿到组织后测序及其他检测。 初步打算测， EGFR， KRAS， EML4-ALK， BRAF， P53 和LKB。白天基本研究了一天中医治疗类型和效果，加上对照自己对中医的理解。 基本倾向于针灸加自己按磨， 加上中药扶正。 具体找谁还没有头绪。于是开始查询病友论坛， 找到了51QIJI， 然后泡了很久。 很多故事都不忍卒读。 一时又想到父亲的点点滴滴。 晚上回家医院来电话催住院。要求母亲去确定活检方式以及保证拿到冰冻组织和蜡块。 11点左右母亲回电，结果如下， 1。 建议住院开胸手术。 2。 至少手术活检。3。本院与国际接轨，所有检测都能做。 立即晕掉---1。 78岁的人要开胸做肺也切除加纵隔和索骨下淋巴清扫。 我怎么看都只看到一个钱字。 2。 手术活检。有疑问但希望CT穿刺。3。 俺们这疙瘩病人都不测P53。 至于ALK检测才刚发出去。 合作公司的检测抗体还没开卖呢，咋接的轨呢。于是只能对老妈表示佩服，因为老妈说过，咱这儿看病办事不找人没门儿。马上决定退出肿瘤医院，转身给大学同学写信 （还好， 俺是医学院毕业的）。
2010/20/13 星期三 早晨在51QIJI注册。Both SHR and HXH replied, saying my email was wrongly encoded, ask me to resend it. Resend emails, and waiting to call in the evening. Post on 51qiji, asking for examination suggestions. Got replies from a couple of people. Posted a reply about squamous treatment (got argued against later on, and he was right, I forgot about EGFR VIII). Start to think about Chinese medicine, read about 陈玉琴。She might be wrong for quite a few of her interpretations, but I appreciate her i her interpretation about 经络。 Found another guy called 张明。 This guy got many blogs, and sounds like very confident about treating cancer with Chinese medicine. Yet, no hard truth or anything support that he is a good one. Read more, and then realize what he claimed in his blogs that he got all these recipes to treat cancer are mostly copied from Chinese academy of traditional medicine (Yu guiqing, maybe Piao bingkui as well). Starting to think about synthesize pre-clinical drugs as last resort. Evening, called SHR. He will be on business trip and be back on Monday. Will take my father to in-patient, and do CT guided biopsy. SHR mentioned that the hospital president is number one in the country for lung cancer surgery. If it can be surgically removed, we should do surgery. Called Joy to organize sample shipment to the states. UPS and FEDEX may not work. Joy remind that I may need OCT embed frozen tissue. Also potential concern about biopsy induced metastasis. There might also be custom issues. Didn’t reach HXH. Father and Mother went to see 陈津生(Chinese medicine) today, plus another 游医。.
2010/10/14 Thurs.
Morning, HXH replied. Will call in the evening. Bump into LG, asked her whether there is any clinical evidence for biopsy induced mets. She said there were always concerns, but so far no evidence that this really happens. She was pretty caring and asked about the situation. One point I got from her is that if you are stage 3, particulary IIIa, and you can get surgery done, plus chemo, there is definitive data for 20% 5 year survival. She also recommended Chemo at least if it’s not suitable for surgery. Most importantly, she suggested small operation to take mediastinal nodes instead of CT guided primary biopsy, because it could tell you the situation of mets, therefore better diagnosis (for surgery). Agree with this point. Will discuss with SHR and HXH on Monday.
Day time: Start to research more on Chinese medicine treatment. Came across 倪海夏， and suddenly recalled the debate between 经方and 温病。Start to read more, and decide to look for 经方doctors. 黄煌in Nanjing, 冯佩纶in Beijing and 孔乐凯in Jinan become top candidates. Asked Alexis for the person who did ALK FISH, then emailed Masahiko asking for whether I need OCT frozen tissue for FISH, as PAJ said.
Night: Called ZY about technical detail to synthesize drugs by ourselves. The answer is positive. It is perfectly doable from technical point of view. Called HXH. He said that their president is very good, also mentioned a few people that I knew who got lung cancer and were operated by him are all doing well. Talked about which department should my father get in. Since we don’t know if SHR already organized it, we’ll see on Monday.Also confirmed with him that he has liquid nitrogen in the lab. He reminded about potential custom issues for biosample export. Called Joy, she said FEDEX can ship the sample, but not sure about custom issue. While calling, Masahiko replied email, saying that I only need parafine sections. This is great news. Much easier to prepare and transport the samples. Joy mentioned very important info on drug synthesis. She said that somebody in china already synthesized WZ4002 (at tens of kilos) and already started to give patient secretly.Start to read倪海夏’s 人纪针灸教程。
2010/10/15 Fri. Morning and daytime: busy with work. WKK called, saying that JE offered to work on my father’s samples if PAJ didn’t offer to help. Good to know another back up.
Night: read more Chinese medicine books. Start to form working flow about how to treat my father using Chinese medicine. 针灸按摩以通经络，中药扶正祛邪以安脏腑。Tell my father that he needs to work out. Reason, cancer needs lots of nutrition, and blood flow is providing that. If one move around, blood will go to arms and legs, and if you sit right there or lie down, blood will go where needs it—the tumor.
2010/10/16 Sat. Daytime: went to outlet to buy gifts for back to country trip in a week or so.
Night: Saw the post about DCA treatment. Searched google and found wiki description. Seems to be a paper on cancer cell in 2007. Talking about mitochondria induced apoptosis can be restored by DCA in cancer. Haven’t read the paper, don’t know if it’s restore MT priming or help with MT integrity or something else. Also don’t know if it works with P53 loss or LKB loss, particularly if MT priming proteins are missing. Got陈津生’s recipe, seems to be focusing on lung and stomach plus some liver， together with半枝蓮。
2010/10/17 Sun. Daytime: work and sleep.
Night: called SHR just now, parents are going to see him first. Thought about chineses medicine and cancer, and comes up an analogy for it. In case of flooding, we should try to find the cause for it. It could be that we don’t enough forest upstream, or it rained too much upstream. We also have concern about downstream so that it won’t overflow and gets everywhere flooded. Chinese medicine is good at finding causes and planting trees upstream, is good at building damps downstream to fight flooding. Yet, the already formed flood is still there, and we need to find a way to get rid of it. No matter targeting therapy, chemotherapy or surgery are all fast ways of remove the “flood”. There are also ways in chinese medicine to dispose the “flood”, but few doctors are good at using it. Let’s imagine in ancient times, people usually don’t live that long (because there were not so many doctors around and there were no high quality public hygiene), plus pollution was much much less than today, therefore few cancer patients were there for doctors to practice and find best ways to deal with them. Anyway, if use small cell lung cancer as example. We all know that Chinese medicine is not very good at treating small cell. Why? Because small cell generally has p53 loss and progress really fast. This is like a huge flood coming along, and the damp built by Chinese medicine is not enough to stop the flooding. Even you already stop the sources, the flood is already there, and it’s too late. There should be a way that Chinese medicine can also deal with the flood itself. Along with these notions, we shouldn’t disregard western medicine as 倪海夏are doing, because we can take western medicine into Chinese medicine, just consider them as 甘草or 半枝莲. Let’s say chemo drugs have certain symptoms on patients (side effects and so on). We should be able to have some idea about its 药性, and use that in conjunction with Chinese medicine for best results.
Parents called back, SHR said it looks like adeno. He said the mediastinal nodes are too small to do biopsy, and it’s not advanced enough to use Mediastinoscopy for that in China. So, we have to go for the primary. Called HXH, got voicemail. Emailed him to confirm about tissue fixation and embedding. Plan to go back next week. Need to get ticket tomorrow. Start to read DCA cancer cell paper. Thought: try DCA plus AZD and chemo for kras/LKB
They came back from hospital. Have to wait for bed. Sounds like it is still surgery suitable. Well, we’ll see how it goes. Found short msg in qiji system. Got a QQ number. Register and ask to join. Got response for the mod. 一点都看不懂，现在后悔当时没好好学英语了 一点都看不懂，现在后悔当时没好好学英语了 同感啊 :L Hi,
u've talked a lot about chinese medicine, it seemed that u r focusing on it. Is that because ur father's age? what's ur opinion of western medicine?
best wishes.
S. P.S. could u explain the abbreviations of the sepcialized terms? I got some difficulties in understanding them. “One point I got from her is that if you are stage 3, particulary IIIa, and you can get surgery done, plus chemo, there is definitive data for 20% 5 year survival. ”
这个数据可靠吗？期待中。 Just wonder why your diary was stated both in English and "中文"
I found a very good forum
http://www.inspire.com/groups/lung-cancer-survivors
You may find many inspire story here.
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