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发表于 2013-5-10 02:38:56 | 显示全部楼层 |阅读模式 来自: 美国
本帖最后由 jaydad 于 2017-9-1 18:55 编辑

SIMON's LUNG CANCER Chronology 戴XX病程疗史 (001 636 527 3762)

INSPIRE.COM 联接:  https://www.inspire.com/hhhdai/

1-10-2005         Lung nodule, solid (nodule = tumor) 38岁怀疑肾结石,发现肺坚固囊肿(瘤)

8-26-2005        Growing lung nodule (growing tumor, likely malignant) 肿瘤增大,  恶性可能性很大.

9-9-2005                Needle biopsy, lung adenocarcinoma diagnosis  恶性肺腺癌确诊

9-19-2005         PET-CT, lung adenocarcinoma with positive lymph nodes 发现淋巴转

9-22-2005        VATS LLL lobectomy 左下肺切除(VATS 从腋下开)

12-8-2005        Carboplatin and Taxotere adjuvant chemotherapy (4x) 化疗,碳铂+泰素帝4次

8-3-2007                Recurrence confirmed by thoracentesis and cytology 胸积液细胞分析恶性,确诊复发


9-20-2007        Tarceva therapy without mutation test 盲试特罗凯

2-04-2008         limited progression

8-01-2008         Tarceva stopped due to liver mets 癌生长肝转移进展,停特

10-1-2008        Alimta single-agent chemo started 开始力比泰(=培美曲塞)单药化疗(拒绝顺铂,拒绝阿瓦斯丁=贝伐单抗)

6-30-2009        Cardiocentesis 心包膜穿刺

2-05-2010        Spine and pelvis metastatsis. Started Zometa 脊椎髋骨转移,开始打择泰

5-3-2010        Received last (16th) Alimta infusion, and 4th dose of Zometa 力比泰(=培美曲塞)第16次, 择泰第4次


5-6-2010        Tested positive for EML4-ALK gene/ chromosome re-arrangement 芝加哥大学医学院检测 EML4-ALK 融合基因阳性

7-2-2010        Brain metastasis, multiple 大面积脑转,几十个小病灶

7-7-2010        WBR, 10x total 全脑辐射放疗

8-12-2010        First dose of crizotinib (in phase 2 study at WashU St Louis) 在圣路易斯华大医院开试克唑替尼药试

9-11-2011        Brain CT and MRI: still stable 稳定"SD"


5-2-2012        Mild disease progression, in pericardial nodularity, and in left axillary lymph node.  Oncologist Govindan suggests buildup of clonal resistance to crizotinib 心膜结节,左腋淋巴肿. 怀疑肿瘤抗克唑替尼

6-21-2012        PET-CT scan confirms cancer (mets or new kind?) in lymph nodes, pleural surface, pericardium, gastric cardia, and ureter 检查建议淋巴,胸腔内壁,心包,胃贲门,及"尿管"有癌肿. [其实肾和尿管诊断是错误的)

6-28-2012         Biopsy, 3 left axillary lymph nodes removed. 左腋淋巴肿瘤活检

7-10-2012        Brain MRI, lesions grown from 9 mm to 18 mm 脑核磁共震,稍有增长(最大0.9->1.8cm)

7-18-2012        Stopped crizotinib to prepare for alternative anti-ALK clinical trial in Colorado 停克唑替尼

7-26-2012        Govindan says RET gene alteration and hinted Sutent maybe the treatment of choice.  Later turned out to be not true - he completely misunderstood report of genomics sequencing result (polymorphism) about G691S.  I would most likely have died had I listened to ill advice from an egomaniac.  

7-31-2012        Pre-trial scans & tests at UColorado Hospital in Aurora 选了丹佛,哈佛太远 Boston is nice but I can't drive that far, and we don't have any direct flight to Boston now. I miss the TWA era when we had everything in St Louis. I can still do 900 miles/ 14-hr nonstop drive to Denver.  

8-06-2012        1st day of Ariad trial 开使AP26113药试

10-01-2012        Evaluation PET-CT scans - CR (complete response) Brain lesions mostly melted, NED on rest of body 身上肿瘤消失,脑中肿瘤大面积减少变小

5-07-2013       CEA 5.9 - lowest point

6-04-2013       CEA 6.3

7-02-2013.      肩骨下淋巴 subpectorial lymph node SUV 5.5. CEA 6.6

7-31-2013       CEA 7.9

8-26-2013       PET-CT confirms resistance in left subpectorial lymph node (左前胸肩下淋巴抗性肿瘤确定, SUV 6.4). 另一可疑热点在左气门SUV 3.7. CEA 8.8

9-14-2013.      PD-L1 抗原检测: 原初肿瘤(2005年手术)没有表达. PD-L1 antigen test negative, unqualified for BMS phase 2 anti-PD1 trial

9-24-2013       CEA 8.5

10-15-2013     第一次可疑 抗AP26113 淋巴切除 - 圣路易斯华大医院/ lymph node biopsy (excision) 1x subpectorial/ muscle at WUSTL

10-21-2013     新脑转出现3x4 mm/MRI confirms resistance in brain 3x4 mm new leasion.  治疗方案待定, AP26113 药暂时继续.  PET 最高SUV 3.5 左气门. CEA 8.2

10-29-2013     放疗医生建议暂时观望, 等六周后再扫描看是否有继续长大.  Rad onc suggests watch and see, no immediate treatment

11-19-2013     CEA 稳定 8.1 stable

12-18-2013      PET 最高SUV 3.3 左气门, MRl 显示脑部稳定无新病灶. CEA 10.7 No new brain lesion, hilum SUV 3.3 actually down

1-14-2014       CEA 12.6

2-11-2014       CEA 16.0 PET-CT 无见异样, MRI 说脑内无明显变化. Brain mets stable

3-11-2014       CEA 19.3

4-07-2014       MRI, PET-CT, Lab 结果: 脑部基本稳定, 胸部有明显进展, CEA 上升至 25.5 - 寻找方案, 找到前AP至少继续到六月份 Result: brain lesion stable, progression in chest, CEA 25.5

5-12-2014        第二次可疑 抗AP26113 淋巴 (3个, biggest 1.1 cm) 切除 - 波士顿麻省总医院/ lymph node biopsy subpectorial/ superficial at MGH (Harvard), for resistance analysis by single-cell sequencing, and also for raising permanent cell-line(s) 培养细胞株 in the Shaw laboratory.  

6-03-2014        PET-CT - 最近切除三个节以后, 仍见有活性淋巴节. brain MRI - 基本稳定. CEA 24.7 稍有下降.  AP26113 继续服用.  Stable in brain, residual subpectorial activity, continuing AP26113

7-01-2014        CEA 20.4, AP26113 继续服用 continues

7-28-2014        PET-CT, brain MRI 结果: 腋下新淋巴节 subpectorial node 1.3 cm, SUVmax 4.2; 脑转有增加增大 brain mets slightly bigger and more numerable. CEA 23.8;  重新联系3922药试. Contacted Dr Bauer re Pf-06463922 trial again

8-05-2014       脑肿瘤还较小, 放疗医生说等新药效果后再作计划 Rad onc still suggests watch and see

8-06-2014       因下背部不便和痛做了 脊椎 MRI, T8 左边等处有见"轻微活性" - 我也正好是这里痛让我站不直,有时候站不起来, 但老医生阿德不给我 择泰 discomfort in low back, had spine and pelvis MRI, saw some activity in T8

8-07-2014       Shaw 医生来电, 已发现我的新肿瘤 (耐AP26113) 测序有检到罕见或未见过的 [F1174L - 有待确证因为我还没有见到具体数据] 突变.  这种好象只在 ALK-阳性的 小儿神经母细胞瘤 (neuroblastoma) 和炎性肌纤维母细胞瘤 (inflammatory myofibroblastic tumor, IMT) 上有报道过.  Sasaki T 2010 年的报道指 克睉替尼对付不了这种突变引起的抗性神经母细胞瘤.  Dr Shaw's team found resistance-conferring ALK mutation in excised lymph tumor

8-15-2014       见3922药试医生 TODD BAUER, 4个试点总共已有11位参试, 10, 25, 75, 150毫克 每组 3 人, 下一组是 250毫克.  我于8-12-2014 获批AP26113 加剂量, 每天 240 毫克, 所以暂时延迟 换药计划.  Got approved for increased dose of AP26113 (now at 240 mg per day) thanks to Dr Ross Camidge.  同时了解到, NIVOLUMAB 单抗免疫疗法第3/4期药试正在大规模招肺癌病人, 不限PD-L1 抗原阳性, 但需递交组织/切片-新的旧的都行, 若都没有的话会被要求做活检.  带艾滋病毒和乙丙肝病毒者不可参加. 试点遍布全国. 说明一下: 只要你住在美国, 愿意负担其它医疗和检查费用, 药是免费的.  有兴趣病友, 请与我联系, 或直接找试点单位的联系人.  Visited Dr Todd Bauer in Nashville TN re eligibility for Pf-06463922 trial, also spoke to Nivolumab phase 3/4 trial office

8-26-2014        CEA 26.1 AP26113 240毫克 继续

9-22-2014        PET-CT, 脑 MRI 结果:脑转变小,但腋下和肺门肿瘤持续长大,至CEA增高 35.4  Higher dose AP26113 effective - brain lesion smaller, but hilar and subpectorial lymph continue to grow

10-21-2014        重测 CEA, 47.8 - 腋下小豆长成土豆了 under-arm nodes grown from pea to potato

10-22-2014      腋下肿瘤切除 surgery to remove 3 axillary lymph nodes (biggest 4.2 cm in size), 贡献给ARIAD 和科罗拉多大学医院做研究 for research at Ariad company and University of Colorado hospital, to raise ALK positive cancer cell line again.

11-18-2014        CEA 44. 脑扫描 brain MRI 基本稳定, full-body PET-CT 有好转. AP26113 240 mg 继续. Brain lesions still stable

12-02-2014        Severe dehydration due to diarrhea and vomiting. Creatinine 1.25, and no flu.  Used Loperamide

12.16-2014        CEA 36.5 still dropping 还在下降,AP26113 240mg continues 继续

12-24-2014        PD-L1 antigen IHC test on resistant lymph node sample by WU pathology Dr Novack ordered by Dr Denes my oncologist. Result negative. PD-L1 抗原检测: 后续抗性肿瘤(切除淋巴节)仍然没有表达.

1-12-2015       Scans result - no significant changes chest or brain.  扫描结果: 胸部稳定, 脑内有微小增大.  CEA 42.6  继续 AP26113, 新名字 Brigatinib, continues

2-10-2015      CEA 45.8   Asking for further dose increase, to 300 mg per day

3-09-2015      PET-CT, Brain MRI. CEA 49, two small mets in brain need radiation tx, chest/ab looks fine on PET

3-26-2015        radiation oncologist appointment, agreed on doing gamma knife for 7 spots

4-07-2015        CEA 64.3, axillary lymph nodes double in size

4-16-2015        Saw my local oncologist Dr Denes today, he recommends surgery then radiation for my underarm cancer nodes. Thanked him for help with last PD-L1 test. Sad to learn that he is retiring in June and will move to Portland OR soon. Hard to find good doctor with less words but more deeds.  

4-17-2015        MRI scan at Washington University /Barnes Jewish Hospital

4-20-2015        met neurosurgeon Dr. Joshua Dowling. One brain met disappeared on its own, but there is another new showing up. Radiologist is having hard time writing the report, and she easily blamed "differences in technique" between this scan at WashU and last scan at U of Colorado

4-27-2015        spoke with Dr Shaw - 3922 phase 2 trial will open in ~2 months in 80 sites world wide.  Shaw 医生来电, 告知 PF-06463922 药试第二期将在 夏天开始, 全球共有 ?? 个试点.  

4-29-2015        appointment with my surgeon Dr Rebecca Aft, regarding the removal of a number of growing cancer lymph nodes underarm

4-30-2015        Gamma knife, 4 tumors burned. Originally planned 5 (potentially with 2 more), but #5 disappeared on its own.  The pain was better than deep dental cleaning. The bad was no food for all day.  The good was, I got out of the place thanks to my old friend Lovell's help, and I drove home myself

5-04-2015        In Denver Colorado - Clinical trial visit again, PET-CT, and brain MRI. Still asking for dose increase from 240 to 300, but not very optimistic.  Camidge refused to increase my dose. Regarding Pfizer's 3922 phase II, he said final dose still not yet decided. CEA 88.1, axillary cancer nodes bigger and brighter on PET scan, brain MRI information reads bad, but is meaningless because most are dead cancer inside. They almost canceled my AP26113 but I insisted on more dosing.  

5-21-2015        Surgery in home town, St Louis. This was my 3rd operation by my 'breast' surgeon, Dr Rebecca Aft at WashU Brease Surgery center.  I received emails from washU FMH system - they automatically call me Dear Ms Dai, because I am going to have 'breast' surgery.  This time, I had to stay at hospital for one night due to excessive drainage (naturally wider and deeper surgical wounds) and wear JK wound suction for 10 days.  Pain is not too bad, but my left shoulder feels like carrying a thousand pound, sore to extreme because muscle was cut.

6-01-2015        suture removed, JP drainage pulled

6-02-2015        CEA 67.3

6-03-2015       saw Dr Denes, ask help with IGF-1R testing. He is moving to Oregon HSU this month.  

6-29-2015        MRI: right parietal lesion no longer enhances; adjacent T2 signal resolved; dominant left parietal lesion also decreased in size. No new lesions.  脑部4月底GAMMA 刀后, 稳定。 PET-CT: one left retropectorial lymph node increased in size and uptake, SUV 8.2 (previously 3.8). CEA 有下降: 47.7.  2015.5.21 手术切除8个癌淋巴结, 但是剩下这个位置太深, 靠近肋骨, 没有被切, 现在非常‘明亮’。 回家商量放疗医生, 能否烧掉它。 AP26113 继续。 另外得到消息, Pfizer 3922 二期将在 八月份 正式开试, DENVER 这里有 30 个名额。

7-02-2015        saw Dr Robinson, my radiation oncologist, plan made to treat leftover disease in left axilla using focused radiation. 计划七月份肩部残余肿瘤放疗十次.  

7-08-2015        Starting left axilla radiation at Barnes West hospital.  腋下放疗今天做模

7-16-2015        今天第一剂射线 first dose of radiation to my left axilla

7-28-2015        CEA 39.4   The 1700 miles (2700 km) journey: 2:30 pm 7-27-2015 departed St Louis, 9:30 am 7-28-2015 arrived UCH Denver; 3 pm 7-28-2015 drove out of Denver, 11:55 am 7-29-2015 arrived home.  Received early morning call from Barnes West hospital while still on Kansas Turnpike that my late morning radiation appointment was canceled due to system failure. Praise the Lord I needed the nap so so badly.  Then just before I arrived home, got call again saying system is back working and my treatment appointment is 1:00 pm.  So not only I arrived alive but did not even miss my radiation appointment!

7-31-2015        Last dose of radiation. 最后一剂射线

8-25-2015       PET-CT, no result; Brain MRI, tumors increase in size and number. CEA, down further to 33.1.   脑内肿瘤增大增多。 医生建议换药, 用3922.  我还没决定, 暂时继续AP。  CEA 下降可能与最近肩部放疗有关, 也有可能是 葡萄糖胺 (GLUCOSAMINE) 的抗癌效果有关。 一个月前, 我开始加了3000 毫克 GLUCOSAMINE, 主要用来对付手腕关节韧带痛, 但GLUCOSAMINE 是有不少防癌抗癌报道的。  后天见放疗医生及神经外科医生讨论非药物治疗, 若无法, 我有这两个药试可选:

NCT01970865, PF-06463922 BY PFIZER, PHASE 2,  DOSE: 100 MG.  SITE: DENVER, NASHVILLE, BOSTON

NCT02271139,   ALECTINIB EXPANDED ACCESS BY ROCHE /GENENTECH, PHASE 3, DOSE 600 MG, SITE: ST LOUIS (MY HOME CITY)

8/27/2015     saw neurosurgeon Dr Joshua Dowling. He recommends gamma-knife again. 神经外科医生建议再次伽码刀, 放肿科待查待确定.  10 years ago, cancer diagnosed by CT scan. CT 扫描发现肺癌 (初诊), 十周年.

9/02/2015     见放肿医生. see radiation oncologist re gamma-knife 2nd round in 5 months.  月底再做伽码刀.

9/09/2015     biopsy confirmation of malignant lung adenocarcinoma, 10 years anniversary.  2005 年九月九日 活检, 确诊恶性肺腺癌, 十周年了.  诊断时儿子才五岁, 现在他已上高中, 小儿子是诊断后五年才出世, 现在也快五岁了.  赞美神,感谢造物救主.

9/22/2015     CEA 27.5 - still going down, to my surprise. My reasoning is because daily 3x1000 mg glucosamine is the only change since two month ago, this must have made an impact in tumor control.  Glucosamine is a well known cancer prevention agent, and recently a report on BMC Central described its effect in negating the tumor promoting signal transduction originating from IGFR and through downstream kinase Akt. This is relevant, because I have suspected for long time that my tumors possess IGFR activation characteristics and are sensitive to IGFR inhibition. Also discussed plan with Dr P, he agrees that I can give Alectinib a try, though in his opinion (Camidge's as well), Brigatinib is a better drug.  Alectinib compassionate use trial is going to open soon in St Louis through SLU Hospital, and may also be approved by the time I quit out, or am kicked out, of the AP phase 1 trial.  

10/07/2015      今天去做伽马刀, 护士要先给钉头盔, 我说要不先扫MRI吧, 居然他欣然同意了. 扫了10 来分钟, 然后两位主刀 (无形的刀radiation oncologist 和有形的刀 neurosurgeon) 一起查了新影像, 进来说, 没必要做了, 两个可疑点, 一个象伤疤, 一个虽然貌似新转移, 但几个月内无任何动静, 加上, 我又无任何明显脑死脑残症状. ‘两个月后再来扫’. MRI碟片拿回来了, 还没工夫打开仔细看. Gamma knife canceled today, MRI failed to detect real worthy brain mets that need immediate intervention. Perhaps Glucosamine is helping, I’ll see for myself if the suspected left parietal lesion from last scan on 8-24-2015 has changed (reduced) in size once I have compare the images of 8-24 with 10-07.  

10-19-2015         PET-CT: no FDG-avid disease!  头以下无明显FDG吸收, 也就是不见癌肿.  Brain MRI: 1)  Dominant hemorrhagic enhancing left parietal lesion is unchanged to minimally increased in size since 8/25/2015, however the intrinsic T1 hyperintense signal has mostly resolved.  Surrounding T2 hyperintensity has increased. Overall this may be a reaction to recent radiation therapy.  2)  Numerous other small and punctate enhancing lesions throughout both cerebral hemispheres are either unchanged or less conspicuous than the prior exam.  No definite new metastatic lesions.  

10/20/2015    CEA slightly up to 30, from 27.  Acute liver problem, AST 208, ALT 57, AlkP 148. Repeat test, AS 209, ALT 56, AlkP 142. Stop AP26113 until liver functions back to normal

10/222015     tests done at Barnes Jewish hospital, AST 169, ALT 53, AlkP 150.  Still too high

10/26/2015    tests done at Barnes Jewish hospital, AST 67, ALT 36, AlkP 135, CEA 16.6 - Good, AP26113 restarted.

11/17/2015    CEA 23.3, AST42, ALT 24, AlkP 113. All back to normal. Praise The Creator.

12/15/2015    MRI: no new mets, stable old ones.  PET-CT: two new hot spots on axilla and chest/rib lymph. CEA 37. Started "longevity pill" metformin, based on elevated A1C, 6.3 two weeks ago at MoBap, and 6.2 today at UCH

01/12/2016    CEA 41, discussed radiation on 8th rib and 6th surgery on axilla. 决定第八肋骨放射, 和腋下肿瘤第六次手术. 十一年前发现的肿瘤, 当年 38, 今天 49 岁.

02/09/2016    MRI BRAIN W/WO CONTRAST, 02/09/2016 - Details: Comments from the Doctor's Office: Good news! IMPRESSION: Since 12/14/2015, enhancement involving the intracranial metastases has slightly decreased and no new lesions have developed.  Overall lesions are stable to slightly decreased in size.  PET-CT, 02/09/2016 - IMPRESSION: Mild increase in size and FDG uptake within a subcutaneous nodule of the left lateral chest wall;
Increased FDG uptake within an aortocaval lymph node metastasis; Mildly decreased FDG uptake within the posterior left eighth rib metastasis; Mildly decreased FDG uptake within left upper lobe consolidation, likely reflecting maturing radiation treatment related change; No significant change in mildly FDG-avid right hilar lymph node; New small focus of FDG uptake in the peribronchial right lower lobe likely reflects a lymph node which may be reactive although metastasis cannot be excluded. 脑内稳定有缩小, 除了将要切除的腋下淋巴,  有这些另外问题, peribronchial right lower lobe lymph node, aortocaval lymph node metastasis 主动脉腔静脉淋巴转移. CEA 49.9

02/11/2016    Surgery at Barnes Jewish in St Louis, axilla lymph nodes, 5th time. 腋下第六次手术, 第五次收土豆切淋巴. 全麻醒来后, 朋友夫妇帮助把我从看护室领出来, 然后我自己开车回家. 我能忍痛, 只用泰诺(TYLENOL), 不吃羟考酮 (OXYCODON). As usual, Joanne and Lovell received me from the holding area after I waked up, dropped me off at the parking garage and I drove back home myself.  I got script for Percocet, but no need for narcotics as I have high pain tolerance, regular tylenol is good enough.  Excised tumor about 2.5 cm in size

3/08/2016        CEA 61.7, rising even after lymph node removal, suspecting aortocaval lymph growing 仍有肿瘤生长

3/17/2016        plan radiation treatment 主动脉腔静脉淋巴病灶放疗

3/28/2016        met Dr Alice Shaw in Boston

4/04/2016         PET-CT, brain MRI. Brain MRI: stable; PET-CT: progress on 10 locations with high SVU. CEA 89

4/26/2016        meet Dr Todd Bauer, preregistered for Pfizer/Merck KGaA combo trial 3922+avelumab

5/03/2016        CEA = 127.9

5/31/2016         brain MRI + body PET-CT. 影像结果不明确, 肿瘤指标倍增. CEA 283.3; CREATININE, 1.58; ALP, 166; AST 61

6/29/2016        NCT02584634 Study to Evaluate Safety, Efficacy, Pharmacokinetics And Pharmacodynamics Of Avelumab In Combination With Either Crizotinib Or PF-06463922 In Patients With NSCLC. (Javelin Lung 101) 终止AP26113/ brigatinib, 开始辉瑞新药试 3922 + aPDL-1

6/30/2016        1st infusion of Avelumab; 1st dose of 100 mg lorlatinib/ 3922

7/07/2016        study visit - PK, CEA 352.0

7/11/2016         CEA 197.3, CREATININE, 1.20; ALP, 103; AST 30 [WASH U/ BARNES Jewish hospital]

7/14/2016        2nd infusion Avelumab

7/21/2016        study visit - PK

7/28/2016        3rd infusion Avelumab. CEA 96

8/11/2016        4th infusion Avelumab. CEA 45

8/25/2016        CT, PET, MRI. 5th infusion of anti-PDL1 drug Avelumab. Scan results - Chest wall / axilla tumor dissolved, para-aorta tumor shrunk, from 31x19 mm to 22x21 mm; Brain 7x7 mm to 2x2 mm. CEA 19.6
9/08/2016        severe skin rash requiring medical intervention. Prescribed oral steroid pills for a week.  The skin rash is presumably from sensitivity to Avelumab, thus 6th infusion of Avelumab postponed!
9/22/2016        6th avelumab infusion, daily low-dose steroid, CEA down further to 8.4, thanks to lorlatinib
10/20/2016      8th avelumab infusion.  CT: para-aorta lymph node no longer visible, 腹部主动脉旁淋巴节不再显现; CEA 5.3 PRAISE THE LORD 赞美主
...
1/09/2016          last phototherapy, now I am african
2/09/2016          16th avelumab. CEA rose to  50.3 - frustration, only month #8!   Chest/ abdomen CT not too bad, brain MRI no emergency. Side effects on MMS: memory very poor, mood fluctuates, and speech - too dumbo to notice/ be noticed of any changes
================

CARCINOEMBRYONIC ANTIGEN (CEA)
Standard Range        0.0-3.0 ng/mL
7/3/2012                596.0
8/21/2012        526.4
9/4/2012                319.4
10/2/2012        142.6
10/30/2012        63.5
11/27/2012        31.1
12/18/2012        16.9
1/15/2013        11.8
2/12/2013        8.0
3/12/2013        6.9
4/9/2013                6.5
5/7/2013                5.9
6/4/2013                6.3
7/2/2013                6.6
7/30/2013        7.9
8/27/2013        8.8
9/24/2013        8.5
10/22/2013        8.2
11/19/2013        8.1
12/18/2013        10.7
1/14/2014        12.6
2/11/2014        16.0
3/11/2014        19.3
4/08/2014        25.5
5/06/2014        28.1
6/03/2014        24.7
7/01/2014        20.4
7/29/2014        23.8
8/26/2014        26.1
9/23/2014        35.4
10/21/2014        47.8
11/18/2014      44
12/16/2014     36.5
1/13/2015        42.6
2/10/2015       45.8
3/10/2015        49.0
4/07/2015       64.3
5/05/2015        88.2
6/02/2015        67.3
6/30/2015        47.7
7/28/2015        39.4
8/25/2015        33.1
9/22/2015        27.5
10/20/2015       30.1
10/26/2015       16.6 (Barnes Jewish Hospital)
11/17/2015       23.3
12/15/2015       36.9
1/12/2016         41
2/09/2016         50
3/08/2016          62
4/05/2015          89
5/03/2016         127.9
5/31/2016        283.3 [Denver, CO]
7/07/2016         352.0 [Nashville, TN]
7/11/2016         CEA 197.3 [st Louis, MO]
7/28/2016         96.4 [Nashville, TN]

8/11/2016          45.0 [Nashville, TN]
8/25/2016          19.6 [Nashville, TN]

9/22/2016            8.4 [Nashville, TN]
10/20/2016          5.3 破纪录了......

11/17/2016         7.0
12/29/2016          21.6
2/09/2017            50.3  

3/09/2017           70.2

4/06/2017          131

4/19/2017         93

5/05/2017         156
5/19/2017        180

6/16/2017         231
8/02/2017      294

8/21/2017      372

9/27/2017      tbd













点评

祝戴先生3922 奇效。  发表于 2016-7-4 20:58
10年了,老兄真不愧是ALK方向的一面旗帜啊!  发表于 2015-12-26 13:55
看您的病历记录,让我对爸爸有了很大的信心。您也加油  发表于 2014-11-14 12:54
戴先生,祝您治疗顺利,平安健康!我想请问腋下肿瘤切除术后愈合好吗?我爸爸三年前肺鳞癌三期(纵隔有转移),今年复发(右颈部见多枚淋巴结)。医生不推荐手术摘除,说这里血管多,手术风险很大易转移,您觉得呢?  发表于 2014-10-8 06:15
有爱,就有奇迹!
发表于 2015-2-22 21:06:02 | 显示全部楼层 来自: 中国江苏南通

您好,我爸爸也在美国参加pd-1抑制剂的临床试验。有需要讨教的保持联络啊!

点评

you are very good  发表于 2015-2-25 09:50
我家电话号码 636 527 3762, 我微信 simond2582  发表于 2015-2-23 03:34
有爱,就有奇迹!
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 楼主| 发表于 2013-5-17 02:32:52 | 显示全部楼层 来自: 美国
有爱,就有奇迹!
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发表于 2015-6-30 10:14:32 | 显示全部楼层 来自: 中国福建福州
戴先生,你好!向你请教一个问题,这次2015 ACSO部分内容有网友分享,得知卡博替尼可以治疗ROS1阳性克唑替尼耐药患者,但没有看见临床数据,不知此消息是否属实?希望能从你这儿得到一些可靠的信息!这次的会议还有什么亮点和惊喜,戴先生是否能和我们分享一下,十分感谢!祝你一切顺利!
有爱,就有奇迹!
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 楼主| 发表于 2013-5-16 22:04:09 | 显示全部楼层 来自: 美国
有关这"根"字, 向大家说明一下.  
易瑞沙攻EGFR
克磋替尼杀ALK
可有谁的病根治断了呢? 好象有, 但罕见啊.
原因: 根在DNA上, 打霸打在激酶蛋白上.  中学生物课有讲DNA->RNA->PROTEIN中心定律吗?  要能把身上所有的癌变DNA都灭了, 就根治了.  
双管齐下或多管齐下说法早就有, 目前就有人热烈议论 ALKi + HSP90i 来斩草除根. EGFR-TKi + HSP90i 也同理啊.  当然也只是杀两个蛋白靶.  
目前, 杀DNA靶的药还没有发明.  对DNA格杀勿论的药/治有的是 - 那叫化疗放疗: 可以杀死所有的正在分裂的DNA, 包括癌,血,髓,皮,发...细胞的DNA.  

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 楼主| 发表于 2013-5-12 03:23:46 | 显示全部楼层 来自: 美国
南竹 发表于 2013-5-11 19:03
谢谢戴先生的分享,八年的抗癌路,给我们都带来了一丝希望。但有几个问题想了解一下:
1- 手术后的分期是什 ...

1- 手术后的分期是什么?分化程度如何?
IIB, T1N1M0.  中高 moderate to well differentiated adenocarcinoma
2- 特罗凯用了将近一年的时间,耐药的依据是什么?哪里进展了?
肝转, 胸壁长, 淋巴活跃
3- 骨转是什么性质?溶骨还是成骨转移?10年2月发现骨转,到5月了为什么还继续用力比泰化疗?
没有溶骨吧 - 还真没有查问过. 腰/下背部痛, ZOMETA (择泰)一打就不痛可以回球场玩了.  力比泰化疗对我几乎没副作用, 还是能延缓肿瘤生长. 其实现在给我再打也没问题, 只是药试公司肯定不肯啦
4- 全脑放疗后,肿瘤是否缩小或者消失?
没有. 只是暂时不长了.  因为克替尼紧接着用,就不知谁的控脑转功劳大.
5- 开始吃克时,除了脑转,骨转外,是否还有别的实体瘤?吃克后是否都有缩小?
有右肺结节,左胸壁增厚,淋巴肿大,肝阴影,骨病变等等. 没有任何缩小,只是稳定(SD, stable disease)
6- 现在还在吃AP吗?
是的.  快十个月了, 没有副作用.

八年抗癌, 每日感恩.  我本尘土, 短暂经过.  蒙恩罪人, 荣耀归主.  GOD BLESS YOU AND FAMILY

点评

您是一个虔诚的信徒 愿妈妈的主耶稣和我们同在 我的妈妈信主耶稣 她是七十五岁信耶稣 九十七岁离世  发表于 2015-3-11 16:14
另外想咨询一下戴先生,AP的副作用和LDK378相比有些什么不同呢?谢谢了。  发表于 2013-5-14 00:53
有爱,就有奇迹!
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 楼主| 发表于 2013-5-11 10:45:38 | 显示全部楼层 来自: 美国
本帖最后由 jaydad 于 2014-11-22 20:34 编辑
安安康康 发表于 2013-5-11 00:32
内容戴先生培美用了这么久,克药也是,真是羡慕


要和X铂一起用,肯定早不行了.  害多益少(应是益无,就有一点效, 如缩小30%, 也无法持久), 毒性特大的X/Y/Z铂,为啥还那么畅销?
第一, 病人家属的心理需要啊
第二, 药厂药房的利润有关啊
第三, 医生得有万能药可开啊
我05年打过4次碳铂,害处至今还有继续. 当时迫于朋友压力. 本来决定术后不要化疗

点评

请问,您的意思是化疗不好,那我爸爸基因没有突变的怎么办  发表于 2014-12-18 17:15
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发表于 2014-8-2 22:26:27 | 显示全部楼层 来自: 中国湖北武汉
二师兄1 发表于 2014-8-2 21:12
实验组吃到了第3组剂量一天75mg,效果在25mg的时候有人就体现出来了

都是在二代耐药后吗,25mg就有效果了很让人激动啊
有爱,就有奇迹!
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发表于 2013-5-10 03:26:55 | 显示全部楼层 来自: 美国
LZ很坚强啊,很厉害。

能否讲一下当初为什么怀疑肾结石呢?
有爱,就有奇迹!
发表于 2013-5-10 03:37:29 | 显示全部楼层 来自: 美国
戴先生八年“抗战”,真不容易,希望有更多的八年!

你是个专业人士,又有许多实战经验,希望在方便时,多上来帮帮我们论坛的战友,特别是在新药试验方面的信息,相信你有很专业的见解和建议。

祝你治疗顺利、平安!
有爱,就有奇迹!
 楼主| 发表于 2013-5-10 04:12:14 | 显示全部楼层 来自: 美国
肺坚固囊肿(瘤, 1.2厘米)位于左肺最低下 - 我因背左侧剧痛进急诊室, 检查完毕无结石被打发回家.  剧痛得趴下爬不起来, 又去别的医院, 肾CT 稍扫上了一点, 最后发现源在肺不在肾. 多年前得过结石, 位置也在同处, 没这斑要痛昏过去的痛.  
有爱,就有奇迹!
发表于 2013-5-10 07:06:57 | 显示全部楼层 来自: 中国辽宁营口
谢谢戴先生分享8年抗癌经历,你的经历可以鼓舞所有病友。祝福你走过下一个8年!
有爱,就有奇迹!
发表于 2013-5-10 07:26:18 | 显示全部楼层 来自: 中国北京
不服不行,美国的治疗技术很先进。你选择的对。
有爱,就有奇迹!
发表于 2013-5-10 14:22:18 | 显示全部楼层 来自: 中国辽宁大连
又一个振奋人心的病例,热烈欢迎戴先生提供治疗经验。
有爱,就有奇迹!
发表于 2013-5-10 20:55:59 | 显示全部楼层 来自: 中国广西南宁
克唑替尼耐药后上AP26113的效果这么好,真是奇迹啊!请问上AP26113在基因检测分析上有什么特别的解释吗?
有爱,就有奇迹!
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