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建议胶质瘤病友少打营养神经的针水。我们在成都时，医生和我们说营养神经的针水800一瓶，自费，心里想着只要能好，管他的，我们打到第三天，复发。我总怀疑营养脑瘤细胞去了。正常细胞没补多少，脑瘤细胞补了，一下子就复发 



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我是胶质瘤复发，原来12年开刀的，目前发现又长1.9*1.5cm，有人建议2种治疗方案①开刀+术后帕博利珠单抗，局部放疗+靶向药物治疗②质子疗法+术后帕博利珠单抗。哪种好？如果质子刀不错，是否有渠道推荐？


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我爸正要开始第三个疗程的化疗，药都开好了，可以他头疼的受不了，去住院了，外科觉得我爸是复发了，还找了肿瘤医院主任来会诊，他们各持己见，最终我们选择了肿瘤医院主任的意见保守治疗。到现在为止没人确定我爸是不是复发，应该只是胶质瘤放疗后假性进展


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请问下这里面的胶质瘤患者做完手术后做基因检测，然后做分子检测，分子检测特别贵还要自费，但是胶质瘤分子检测的意义是什么,现在不知道到底要不要做化疗，很纠结，做化疗会把身体摧残了


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1.68基因+脑6项这个组合，价钱是12800，包含危险等级评估检测内容，外加68个基因位点，29个化疗位点，满足基本的靶药匹配需求。

2.825基因(赠送脑六项)，价格18800，包含第一条的检测内容，同时因为这个基因数更多，所以提高了靶向药匹配概率和为免疫治疗提供了参考依据。涵盖了放化疗，靶向，免疫等现有的治疗方式。
3.全外显子检测（赠送脑六项）原价34800，这是把所有基因都测了，是反映最客观真实的基因情况，包含前面所有的需求，同时提供了遗传评估。由于胶质瘤复发概率很高，全外有科研项目，可以买一赠一，科研价三万元，到时候如果复发了可以再测一次。也就平均到单次15000元。 


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  我这有个病人小孩 ，星形胶质瘤8年又复发啦 ，能不能多挺久一点


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病友们想问下，胶质瘤手术后什么时候可以洗头

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【理论】

  近年来癌症是有增无减。很大的因素就是人的体温低下，当体温低至35度的时候，人体就很容易被癌细胞侵入，反之如果体温达到了39.6度以上癌细胞就会被杀死。

   早在十九世纪就有一位德国的医师记载了这样的案例，发表了很多例自然治愈的癌症。这些癌症都是一些肺炎和丹毒等疾病，它们都是持续发高烧一到两个星期然后就不治而愈了。

   癌症是可以生长在身体任何部位的，但是人们发现人体的心脏、脾脏、小肠是发病率最少的地方。这些正好是处于高温的器官，就证实了癌症不适合在高温的器官上存活和繁殖。而相反人体最容易的发病的地方就是肺、胃、大肠、食道、卵巢、子宫等器官，因为这些属干中间层空洞的器官，体温相对来说较低，所以也是肿瘤的好发部位。


【病友实践聊天记录】

昨天水都咽不下去，躺床上完全没意识了，还一直发高烧。今天早晨居然能睁开眼睛，腿能动，能吃东西，能讲话，能喝水。这种现象正常吗？

是不是发高烧烧死脑瘤细胞，还是回光返照？有病有家有过这种突然好的情况吗？

\"胶质瘤发烧是好现象吗聊天记录1\"

\"胶质瘤发烧是好现象吗聊天记录2\"

\"胶质瘤发烧是好现象吗聊天记录3\"


【胶质瘤病友经验总结】

也许热敷有用，也不会造成什么损失。。。所以，大家可以用热毛巾，敷一下肿瘤部位，我不知道有没有用，我是这么给我老爸敷的，高烧过后 越来越好。今天走路很有力，很正常 




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目前，免疫检查点抑制剂（checkpoint inhibitors）对多种类型的肿瘤有很好的抗瘤疗效，但是对于胶质母细胞瘤（GBM）的治疗效果并不理想。因为其依赖于肿瘤的高频突变负荷和对新抗原表位的反应。在胶质母细胞瘤中，免疫细胞浸润有限，并且胶质母细胞瘤仅含有30-50个非同义突变。利用肿瘤的未突变抗原和新表位，或许可以为低频突变负荷的胶质母细胞瘤提供有效的免疫治疗。胶质瘤个性化疫苗联盟（GAPVAC）的Ⅰ期（GAPVAC-101）试验发现，在新诊断胶质母细胞瘤患者中，高度个体化的疫苗接种和整合两种类型肿瘤抗原治疗可以实现极强的免疫原性。德国图宾根Immatics生物技术股份有限公司的Norbert Hilf等撰文将相关结果发表在2018年12月《Nature》在线上。


在黑色素瘤的研究中，通过肿瘤疫苗选择的肿瘤新抗原已表现出强大的免疫原性和在临床应用中有效。但是，只有少部分突变能产生T细胞可识别的和由人类白细胞抗原（HLA）呈递的新抗原。对于较少突变的肿瘤，非抗原特异性免疫疗法，如免疫检查点抑制剂可能不完全起效。在胶质母细胞瘤内，T细胞对非突变、过表达抗原产生有效反应时，临床治疗效果很好；可以成为靶向新抗原和抗瘤治疗的重要组成部分。

 

研究方法

作者运用XPRESIDENT技术，在30例胶质母细胞瘤样本中检测非突变的、由HLA呈递的新抗原。最终，33个结合HLA-A*02:01和26个结合HLA-A*24:02的多肽收入制备文库。制备文库中的每个多肽肿瘤抗原和每个肿瘤转录组分别通过质谱和微阵列分析进行检测，以了解在每例GAPVAC-101患者的反应情况。根据分析结果，作者设计具有活性的个体化疫苗（APVAC1），包含7种最佳的HLA-Ⅰ多肽、2种结合HLA-Ⅱ类的多肽和1种病毒标志物多肽。

接着，观察APVAC1能否诱发免疫反应。离体多聚体分析显示，13例患者中，12例对APVAC1的HLA-I多肽疫苗诱导的CD8+T细胞，产生1次以上反应（92.3%；中位数3次反应）；此反应通常持续数月。接种疫苗后，APVAC1特异性T细胞转变为记忆型T细胞。16例患者疫苗接种后产生的PBMC（PTP T细胞）和由APVAC1诱导的PTP-013反应性CD8+T细胞可以高度结合，以杀死表达多肽的K562-A2靶细胞。这类T细胞还能裂解胶质母细胞瘤细胞系L2，而且内源性表达PTP-013（PTPRZ1）。由此证明APVAC1诱导的T细胞功能和PTP-013可通过HLA多肽呈递。13例患者中，9例（69.2%）表现为对APVAC1的1至2种未突变HLA-Ⅱ多肽抗原的CD4+T细胞产生应答，这些多肽的总免疫原性为50%。

 

研究结果

在应用APVAC1治疗时，通过影像学检查确定肿瘤的复发和消退情况。放化疗和辅助TMZ治疗后的几个月中，影像学检查经常发现肿瘤病灶的变化。GBM诊断成立后26.8个月，肿瘤复发的患者，给予再次切除肿瘤；检测结果证实肿瘤周围的CD8+T细胞与FOXP3+Treg细胞呈高浸润。含有CD4+T细胞的肿瘤可以直接对APVAC1的HLA-Ⅱ多肽PTP-010产生反应。

 

结论

综上所述，作者采用针对新抗原的肿瘤疫苗，有效地增加胶质母细胞瘤内的T细胞浸润和获得较好的临床效果。29个月临床试验中，患者的中位生存时间不比其它临床试验逊色。进一步研究应将降低疫苗制备过程的复杂性和制作时间、以及如何利用疫苗提高机体抗肿瘤免疫力作为重要内容。

 


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吃了三个月的德巴金，不敢停啊,病友们德巴金吃多长时间

","barId":"1337","topicTypeId":"2","topicThemeId":"1032","readLevel":0,"files":"","clickNoLikeCount":0,"clickLikeCount":0,"clickCount":1429,"score":0,"partCount":0,"replayCount":4,"publishStatus":1,"publishTime":1549027496372,"isCream":0,"canReply":0,"shareUrl":null,"foodCouponVal":1,"emailNotice":0,"permission":0,"zlyShare":0,"status":0,"sort":0,"highlight":0,"highlightEffectTime":0,"digest":1,"digestEffectTime":1556717106091,"top":0,"topEffectTime":0,"closed":0,"stamp":0,"icon":0,"bgcolor":null,"fontcolor":null,"favtimes":0,"isAdopt":0,"adoptId":null,"sortDate":1549027615946,"metaSearch":null,"rn":0,"barTitle":null,"checkcode":null,"forumUser":{"id":"84404015eff611e6a61c00163e04584d","isDel":0,"createAt":1486775274108,"createBy":null,"createName":null,"updateAt":0,"updateBy":null,"updateName":null,"username":"13911686944","password":"000000","level":0,"nickName":"赵金亮","realName":null,"signName":"c","head":null,"phone":"13911686944","mobile":null,"wechat":null,"qq":null,"email":null,"address":null,"identityType":6,"userType":2,"isPhoneBind":1,"status":0,"accountSource":0,"isStrangerMsg":0,"departmentId":null,"departmentName":null,"sex":1,"provinceId":"110000","cityId":"","userLevel":0,"modifyNameCount":1},"lyTopicReply":null,"createAtStr":null,"lyBar":null,"lyTopic":null},{"id":"24623","isDel":0,"createAt":1548213332801,"createBy":"84404015eff611e6a61c00163e04584d","createName":"13911686944","updateAt":0,"updateBy":null,"updateName":null,"userId":"84404015eff611e6a61c00163e04584d","title":"胶质瘤怎么能活的久一点","content":"

我现在穿梭于各群，就想了解胶质瘤怎么能活的久一点，放化疗是不是真的对肿瘤有作用，毕竟肿瘤怕刺激 


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临床上大部分有脑胶质瘤都会复发，即使是手术切除后，复发几率还是很大，这是为什么呢? 那么，如何预防胶质瘤手术后复发？

因为医生在手术过程中，会把可见的肿瘤切除，但是胶质瘤具有浸润性生长的特点，有些肿瘤细胞正常脑组织生长在一起，很难分辨，即使知道也无法切除。因为脑组织也是有功能的，它的切除范围终究很有限，所以没切除的部分还是很有可能再长出来。所以，患者进行正规治疗后，一定要继续进行抗复发治疗。

1.术后巩固治疗。常用的巩固手段包括：放疗、化疗、靶向药物，这几方面一定要做；

2.保持良好的心态：有良好的心态应对压力，劳逸结合，不要过度疲劳。还需要保持心情愉快，避免过度紧张，这些也是防复发的关键。

3.合理运动：加强体育锻炼，增强体质，多在阳光下运动，多出汗可将体内酸性物质随汗液排出体外，避免形成酸性体质。

4.养成良好的生活习惯：预防脑胶质瘤要养成良好的生活习惯，戒烟限酒。烟和酒是极酸的酸性物质，长期吸烟喝酒的人，极易导致酸性体质从而引发脑胶质瘤。

5.不要吃刺激类的食物：不要吃辛辣刺激过期的食物，这也可以预防肿瘤，同时年老体弱或有肿瘤家族史者酌情吃一些防癌食品和含碱量高的碱性食品。

 

所以胶质瘤术后注意这几方面会减少胶质瘤的复发率，另外要定期复查。在脑胶质瘤术后，时刻监控脑胶质瘤进展，及时注意到各项指标变化，可以帮助患者发现潜伏期的肿瘤，扼杀癌细胞于萌芽期。一般建议至少每隔半年要进行一次复查，期间不可忽略细微的症状，若是出现不明原因的疼痛、肿胀、消瘦乏力等不适症状，要及时到医院确诊。最后，祝患者们早日康复！

\"如何预防胶质瘤手术后复发\"

欢迎扫描二维码加入QQ群，听听病友们怎么说，听听医生怎么说





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我妈妈复发了，做完手术马上到一年，手术时是左颞叶，左颞叶胶质瘤复发症状？现在是右侧。现在人爱嗜睡，小便失禁。


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请问一下，胶质瘤化疗方案，长化方案有两个：一是替莫唑胺吃五天+安罗替尼吃两周。二是替莫唑胺吃五天+阿帕替尼每天吃。这两个方案哪个好？四级术后，手术未切除干净。我们用的第二个方案，吃药第十天滴水不进，白细胞2.1，不得已停了。等身体恢复一点能否继续吃第二个方案的药？还有没有更好的方案？


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问一下各位病友及家属，放疗期间连续吃替莫唑胺，替莫唑胺需要长期吃吗？药怎么开？我想在外地放疗，本省开药，这种可以吗


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请问打贝伐，您一点没出现副作用吗？医生说有脑出血的风险。用了贝伐会掩盖肿瘤的，核磁不准？贝伐单抗副作用有哪些？贝伐也是治疗胶质瘤的化疗药吗?前些年我都没有听说

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 群里有没有，胶质瘤晚期不吃不喝，那种状态的病人啊，我家爸爸就是不吃，我爸爸几乎都到了后面了，吃东西都不行，就是喉咙有痰，医生说吞咽功能也有问题，关键是他自己又不配合我们，我还爸爸我感觉好特殊，不知道轻重，听不懂他说话还打人，嘴巴吃东西也不利索，感觉就像是他自己不能支配自己的言行一样


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请问一下，大家有听医生说放疗要结束一个月以后再拍核磁共振片子再看的吗？核磁共振有必要做吗？说放疗期间水肿，看也看不清


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吃的癫痫药，现在都吃出副作用了，抗癫药物有什么副作用？我也吃了很久的癫痫药，现在停了，有时候会手抖。


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各位朋友，胶质瘤可以保守治疗吗？有没有完全采用保守治疗的吗？就是核磁共振出来，怀疑是，但没有开刀，水肿引起的疼痛，现在已经控制住，用的是甘露醇和微量激素，现在和正常人一样了


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其实，放疗水平差不多的，化疗看你经济实力了，看你吃什么了，替莫作胺不一样的价格，手术后需要放疗吗？第一次手术后你做放化疗了吗？如果不能手术是否考虑射波刀


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我的朋友是弥漫性的，估计全切不现实，病灶可能全切，弥漫性胶质瘤切不干净，切了人就废了，我感觉切不完，切完就得半边头打开了，我朋友的离运动神经还有一点点安全距离，但是打开不好说了。有些主任医生说最少直径7公分，两个月以后用假体缝上，缝不缝看你能不能挺到那个时候，需不需要


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群里有人去质子治疗的么？质子治疗胶质瘤怎么样？我哥4级刚在301做完手术，做完后做病理才知道4级。


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胶质瘤和手机辐射有关系吗？怀疑患胶质瘤与使用手机有关联，我患病前睡觉时都是把手机放在枕头边，也就是右脑边，胶质瘤也长在右边，不知是巧合还是必然，我在广州珠江医院手术时张教授也怀疑与手机辐射有关


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有一个情况，我表哥，胶质瘤术后左边不能动，而且摸着比较凉，是怎么回事啊？左边胳膊比较凉，刀口在右边，医生当时也说会影响左边


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