t*i
2 楼
10岁的小侄女一直长得就比较小,最近发现厌食,经常呕吐,视力减退。前天CT扫描发
现在脑干部有一30.6X30.2mm的肿瘤。医生说很确定是颅咽管瘤。需要手术切除。求问
大家什么样的手术方案最好,术后能不能恢复正常,发生术后并发症的可能性有多大?
美国或者国内哪里做这类手术是最好的?网上说十年存活率才有70%左右,是真的吗?
跪谢。
Update:
上周看了天坛医院的神经外科专家马振宇教授的特需门诊,马教授说80%的可能是生殖
细胞瘤或者星形细胞瘤。建议先放疗。网上查了一下,仅生殖细胞瘤就有好几种。孩子
的肿瘤标记物检测,大都还好,只有一项HCG指标超高。会不会是最恶性的绒毛膜癌啊
。如果是的话,应该怎样治疗啊,十年存活率是多少?
检查项目 含量 参考值
甲胎蛋白(AFP) 3.52 0.00-7.00
癌胚抗原(CEA) 1.43 0.000-4.7000
β-绒毛膜促性腺激素(HCG) 1036 0.00-5.00
丙氨酸氨及转移酶(ALT) 32 0.0-41.0
天门冬氨酸氨及转移酶(AFT) 43 0.0-42.0
总蛋白(TP) 69.9 60.0-80.0
白蛋白(ALP) 46.4 35.0-55.0
前白蛋白(PA) 127 170-420
血清催乳素(PRL) 79.4 1.90-25.00
凝血活酶时间(APTT)sec 38.7 23.0-35.0
纤维蛋白原 1.77 2.00-4.00
黄体生成素 2.39 软泡期1.1-11.6
生长激素 3.21 0.000-10.000
.........
现在脑干部有一30.6X30.2mm的肿瘤。医生说很确定是颅咽管瘤。需要手术切除。求问
大家什么样的手术方案最好,术后能不能恢复正常,发生术后并发症的可能性有多大?
美国或者国内哪里做这类手术是最好的?网上说十年存活率才有70%左右,是真的吗?
跪谢。
Update:
上周看了天坛医院的神经外科专家马振宇教授的特需门诊,马教授说80%的可能是生殖
细胞瘤或者星形细胞瘤。建议先放疗。网上查了一下,仅生殖细胞瘤就有好几种。孩子
的肿瘤标记物检测,大都还好,只有一项HCG指标超高。会不会是最恶性的绒毛膜癌啊
。如果是的话,应该怎样治疗啊,十年存活率是多少?
检查项目 含量 参考值
甲胎蛋白(AFP) 3.52 0.00-7.00
癌胚抗原(CEA) 1.43 0.000-4.7000
β-绒毛膜促性腺激素(HCG) 1036 0.00-5.00
丙氨酸氨及转移酶(ALT) 32 0.0-41.0
天门冬氨酸氨及转移酶(AFT) 43 0.0-42.0
总蛋白(TP) 69.9 60.0-80.0
白蛋白(ALP) 46.4 35.0-55.0
前白蛋白(PA) 127 170-420
血清催乳素(PRL) 79.4 1.90-25.00
凝血活酶时间(APTT)sec 38.7 23.0-35.0
纤维蛋白原 1.77 2.00-4.00
黄体生成素 2.39 软泡期1.1-11.6
生长激素 3.21 0.000-10.000
.........
n*g
3 楼
Shanghai. Anybody knows?Thanks.
O*s
4 楼
就这样,等你回来,听你的歌声。
w*m
5 楼
available fromSunSolve http://sunsolve.sun.com
127111-01, SUNWs9brandr, SUNWs9brandu, SUNWs9brandk
thanks
127111-01, SUNWs9brandr, SUNWs9brandu, SUNWs9brandk
thanks
f*e
6 楼
另,在北京买器材,有去处吗?
l*h
7 楼
I commented on your earlier message but oh man, this is killing me. When "医
生说很确定是颅咽管瘤", I thought they saw the typical presentations of it
because 颅咽管瘤 is so distinct on MRI scans. 颅咽管瘤 in children have
large cysts in >99% cases whereas infratentorial gliomas rarely show cystic
changes before radiation therapy. 颅咽管瘤 can encroach into the brainstem
but the epicenter is outside the brainstem.
Intracranial choriocarcinomas are very rare. But as HCG was significantly
elevated, it is a real possibility now. A germ cell tumor is highly
suspected. Now a differential should be made between germinoma and
choriocarcinoma. ~10% germinoma secrete HCG, 100% choriocarcinoma secrete
HCG. This doesn't necessarily mean the tumor is more likely choriocarcinoma,
because intracranial germinoma is much more common than primary
intracranial choriocarcinoma. Neither would benefit from surgery so the
general recommendation is as follows:
1. Take blood and CSF the same day and test for HCG. This can usually tell
if the tumor is primary intracranial or metastatic.
2. Frequent (say twice/week) blood HCG test. If rapidly increasing, then it'
s more likely choriocarcinoma.
3. Do a careful MRI reading. If there is evidence of intratumoral hemorrhage
, it is more likely choriocarcinoma. (From your previous message, apparently
the first read was not done properly.)
4. >90% germinoma can achieve long-term remission by radiation therapy alone.
5. The choice of treatment for primary intracranial choriocarcinoma is
chemotherapy (methotrexate) which, if done early, is often curative.
6. The treatment must be started as early as possible. If the two cannot be
properly differentiated and I had to make a bet, I would start methotrexate.
The majority of choriocarcinoma should respond in a few days. If after a
week of methotrexate no MRI improvement were seen, I would start radiation
therapy. Be sure to follow HCG level during treatment. if it drops fast,
then it is quite certain a choriocarcinoma.
I need to emphasize this is only some general opinion and is provided for
informational purposes only. The medical decision must be made by the
physician and the patient/family.
【在 t*****i 的大作中提到】
: 10岁的小侄女一直长得就比较小,最近发现厌食,经常呕吐,视力减退。前天CT扫描发
: 现在脑干部有一30.6X30.2mm的肿瘤。医生说很确定是颅咽管瘤。需要手术切除。求问
: 大家什么样的手术方案最好,术后能不能恢复正常,发生术后并发症的可能性有多大?
: 美国或者国内哪里做这类手术是最好的?网上说十年存活率才有70%左右,是真的吗?
: 跪谢。
: Update:
: 上周看了天坛医院的神经外科专家马振宇教授的特需门诊,马教授说80%的可能是生殖
: 细胞瘤或者星形细胞瘤。建议先放疗。网上查了一下,仅生殖细胞瘤就有好几种。孩子
: 的肿瘤标记物检测,大都还好,只有一项HCG指标超高。会不会是最恶性的绒毛膜癌啊
: 。如果是的话,应该怎样治疗啊,十年存活率是多少?
生说很确定是颅咽管瘤", I thought they saw the typical presentations of it
because 颅咽管瘤 is so distinct on MRI scans. 颅咽管瘤 in children have
large cysts in >99% cases whereas infratentorial gliomas rarely show cystic
changes before radiation therapy. 颅咽管瘤 can encroach into the brainstem
but the epicenter is outside the brainstem.
Intracranial choriocarcinomas are very rare. But as HCG was significantly
elevated, it is a real possibility now. A germ cell tumor is highly
suspected. Now a differential should be made between germinoma and
choriocarcinoma. ~10% germinoma secrete HCG, 100% choriocarcinoma secrete
HCG. This doesn't necessarily mean the tumor is more likely choriocarcinoma,
because intracranial germinoma is much more common than primary
intracranial choriocarcinoma. Neither would benefit from surgery so the
general recommendation is as follows:
1. Take blood and CSF the same day and test for HCG. This can usually tell
if the tumor is primary intracranial or metastatic.
2. Frequent (say twice/week) blood HCG test. If rapidly increasing, then it'
s more likely choriocarcinoma.
3. Do a careful MRI reading. If there is evidence of intratumoral hemorrhage
, it is more likely choriocarcinoma. (From your previous message, apparently
the first read was not done properly.)
4. >90% germinoma can achieve long-term remission by radiation therapy alone.
5. The choice of treatment for primary intracranial choriocarcinoma is
chemotherapy (methotrexate) which, if done early, is often curative.
6. The treatment must be started as early as possible. If the two cannot be
properly differentiated and I had to make a bet, I would start methotrexate.
The majority of choriocarcinoma should respond in a few days. If after a
week of methotrexate no MRI improvement were seen, I would start radiation
therapy. Be sure to follow HCG level during treatment. if it drops fast,
then it is quite certain a choriocarcinoma.
I need to emphasize this is only some general opinion and is provided for
informational purposes only. The medical decision must be made by the
physician and the patient/family.
【在 t*****i 的大作中提到】
: 10岁的小侄女一直长得就比较小,最近发现厌食,经常呕吐,视力减退。前天CT扫描发
: 现在脑干部有一30.6X30.2mm的肿瘤。医生说很确定是颅咽管瘤。需要手术切除。求问
: 大家什么样的手术方案最好,术后能不能恢复正常,发生术后并发症的可能性有多大?
: 美国或者国内哪里做这类手术是最好的?网上说十年存活率才有70%左右,是真的吗?
: 跪谢。
: Update:
: 上周看了天坛医院的神经外科专家马振宇教授的特需门诊,马教授说80%的可能是生殖
: 细胞瘤或者星形细胞瘤。建议先放疗。网上查了一下,仅生殖细胞瘤就有好几种。孩子
: 的肿瘤标记物检测,大都还好,只有一项HCG指标超高。会不会是最恶性的绒毛膜癌啊
: 。如果是的话,应该怎样治疗啊,十年存活率是多少?
S*w
9 楼
高手不用别人补丁
自己补
【在 w*m 的大作中提到】
: available fromSunSolve http://sunsolve.sun.com
: 127111-01, SUNWs9brandr, SUNWs9brandu, SUNWs9brandk
: thanks
自己补
【在 w*m 的大作中提到】
: available fromSunSolve http://sunsolve.sun.com
: 127111-01, SUNWs9brandr, SUNWs9brandu, SUNWs9brandk
: thanks
l*l
10 楼
黑嗓,直接淘宝买,北京基本都是当天送
u*t
11 楼
I agree with the impression, most likely germ cell tumor. I would recommend
a CT for chest, abdomen and pelvis with contrast to look for possible
primaries. And if found, they may be able to do a CT guided biopsy.
I am not a pediatric oncologist, but BEP (bleomycin, etoposide, and
cisplatin) x 4 or VIP (etoposide, ifosfamide and cisplatin) x 4 works well
in adult patients. Armstrong had brain mets too and he got the VIP regimen
because he wanted to preserve his lung function. He is cured BTW.
It is bad to have brain mets for germ cell tumor but it is good she has
normal AFP level.
Also check serum LDH level.
Agree with radiotherapy and also recommend neurosurgery eval for tumor
resection. Tumor load reduction is always good.
FYI: www.nccn.org
Best wishes.
a CT for chest, abdomen and pelvis with contrast to look for possible
primaries. And if found, they may be able to do a CT guided biopsy.
I am not a pediatric oncologist, but BEP (bleomycin, etoposide, and
cisplatin) x 4 or VIP (etoposide, ifosfamide and cisplatin) x 4 works well
in adult patients. Armstrong had brain mets too and he got the VIP regimen
because he wanted to preserve his lung function. He is cured BTW.
It is bad to have brain mets for germ cell tumor but it is good she has
normal AFP level.
Also check serum LDH level.
Agree with radiotherapy and also recommend neurosurgery eval for tumor
resection. Tumor load reduction is always good.
FYI: www.nccn.org
Best wishes.
j*7
13 楼
不懂这些。如果是良性脑部肿瘤,在可以开刀的位置,开刀成功率高的位置的话,成活
率是大的不得了啊。我所知道的有几个,成功开刀后,都活了超过20多年了。现在也好
的不得了。
良性肿瘤,开刀后不就结束了吧,清除掉,开彻底的情况下。
率是大的不得了啊。我所知道的有几个,成功开刀后,都活了超过20多年了。现在也好
的不得了。
良性肿瘤,开刀后不就结束了吧,清除掉,开彻底的情况下。
b*y
15 楼
天坛医院的神外在国内就很好
l*h
18 楼
because of the location, it is unlikely a metastasis. however, to be safe,
some exams can be done if they don't delay the treatment.
i don't think the description of 脑干 is accurate, but rather in front of or
behind it, ie, pituitary/supersellar or pineal region.
there are numerous types of non-germinoma germ cell tumors. choriocarcinoma
is so special that it responds to methotrexate extremely well, with >90%
cure rate if treatment is done early.
primary intracranial germinoma has a long-term remission/cure rate of >90%
if radiation is done on time.
the regimens you mentioned are good for other types of germ cell tumors,
including testicular.
recommend
regimen
【在 u*****t 的大作中提到】
: I agree with the impression, most likely germ cell tumor. I would recommend
: a CT for chest, abdomen and pelvis with contrast to look for possible
: primaries. And if found, they may be able to do a CT guided biopsy.
: I am not a pediatric oncologist, but BEP (bleomycin, etoposide, and
: cisplatin) x 4 or VIP (etoposide, ifosfamide and cisplatin) x 4 works well
: in adult patients. Armstrong had brain mets too and he got the VIP regimen
: because he wanted to preserve his lung function. He is cured BTW.
: It is bad to have brain mets for germ cell tumor but it is good she has
: normal AFP level.
: Also check serum LDH level.
some exams can be done if they don't delay the treatment.
i don't think the description of 脑干 is accurate, but rather in front of or
behind it, ie, pituitary/supersellar or pineal region.
there are numerous types of non-germinoma germ cell tumors. choriocarcinoma
is so special that it responds to methotrexate extremely well, with >90%
cure rate if treatment is done early.
primary intracranial germinoma has a long-term remission/cure rate of >90%
if radiation is done on time.
the regimens you mentioned are good for other types of germ cell tumors,
including testicular.
recommend
regimen
【在 u*****t 的大作中提到】
: I agree with the impression, most likely germ cell tumor. I would recommend
: a CT for chest, abdomen and pelvis with contrast to look for possible
: primaries. And if found, they may be able to do a CT guided biopsy.
: I am not a pediatric oncologist, but BEP (bleomycin, etoposide, and
: cisplatin) x 4 or VIP (etoposide, ifosfamide and cisplatin) x 4 works well
: in adult patients. Armstrong had brain mets too and he got the VIP regimen
: because he wanted to preserve his lung function. He is cured BTW.
: It is bad to have brain mets for germ cell tumor but it is good she has
: normal AFP level.
: Also check serum LDH level.
c*e
19 楼
不懂 Bless!
版上懂得又好心的人真多!
版上懂得又好心的人真多!
k*y
20 楼
bless
y*3
21 楼
看医生
P*F
22 楼
Bless.
【在 t*****i 的大作中提到】
: 10岁的小侄女一直长得就比较小,最近发现厌食,经常呕吐,视力减退。前天CT扫描发
: 现在脑干部有一30.6X30.2mm的肿瘤。医生说很确定是颅咽管瘤。需要手术切除。求问
: 大家什么样的手术方案最好,术后能不能恢复正常,发生术后并发症的可能性有多大?
: 美国或者国内哪里做这类手术是最好的?网上说十年存活率才有70%左右,是真的吗?
: 跪谢。
: Update:
: 上周看了天坛医院的神经外科专家马振宇教授的特需门诊,马教授说80%的可能是生殖
: 细胞瘤或者星形细胞瘤。建议先放疗。网上查了一下,仅生殖细胞瘤就有好几种。孩子
: 的肿瘤标记物检测,大都还好,只有一项HCG指标超高。会不会是最恶性的绒毛膜癌啊
: 。如果是的话,应该怎样治疗啊,十年存活率是多少?
【在 t*****i 的大作中提到】
: 10岁的小侄女一直长得就比较小,最近发现厌食,经常呕吐,视力减退。前天CT扫描发
: 现在脑干部有一30.6X30.2mm的肿瘤。医生说很确定是颅咽管瘤。需要手术切除。求问
: 大家什么样的手术方案最好,术后能不能恢复正常,发生术后并发症的可能性有多大?
: 美国或者国内哪里做这类手术是最好的?网上说十年存活率才有70%左右,是真的吗?
: 跪谢。
: Update:
: 上周看了天坛医院的神经外科专家马振宇教授的特需门诊,马教授说80%的可能是生殖
: 细胞瘤或者星形细胞瘤。建议先放疗。网上查了一下,仅生殖细胞瘤就有好几种。孩子
: 的肿瘤标记物检测,大都还好,只有一项HCG指标超高。会不会是最恶性的绒毛膜癌啊
: 。如果是的话,应该怎样治疗啊,十年存活率是多少?
M*y
23 楼
bless
l*a
24 楼
Dr. Rajesh Bindal, Houston Texas, one of the best.
p*y
25 楼
我表哥的女儿去年也发现这个情况,脑瘤,还是其他症状都太一样了,虽然不知道他的
经历有没有代表性,可参考下:
孩子6岁,11年初我回国还觉得很活泼,很能说,挺精灵的。下半年就有你家孩子的症
状,开始以为吃坏了肚子,后来检查,都傻了。医生说没什么希望,手术还遭罪。结果
表哥还是想尽量治。现在手术完了,恢复的还不错,我自己没见,但是打电话说还不错
。当时如果不手术,就没治了。孩子现在还在恢复,活动什么的都没问题,但听说没有
以前那么多话,脾气也比较不好,不过我觉得好在手术了,不然就没指望了。比较奇怪
的是,隔壁病房的有个孩子情况差不多,后来医生透漏,得这种病的孩子都喜欢吃膨化
零食,家人也比较依着孩子,这个我很同意,我回去看到这孩子基本不怎么吃饭,要什
么大人就去买,主要靠吃零食,国内的食品安全大家也都知道。
经历有没有代表性,可参考下:
孩子6岁,11年初我回国还觉得很活泼,很能说,挺精灵的。下半年就有你家孩子的症
状,开始以为吃坏了肚子,后来检查,都傻了。医生说没什么希望,手术还遭罪。结果
表哥还是想尽量治。现在手术完了,恢复的还不错,我自己没见,但是打电话说还不错
。当时如果不手术,就没治了。孩子现在还在恢复,活动什么的都没问题,但听说没有
以前那么多话,脾气也比较不好,不过我觉得好在手术了,不然就没指望了。比较奇怪
的是,隔壁病房的有个孩子情况差不多,后来医生透漏,得这种病的孩子都喜欢吃膨化
零食,家人也比较依着孩子,这个我很同意,我回去看到这孩子基本不怎么吃饭,要什
么大人就去买,主要靠吃零食,国内的食品安全大家也都知道。
s*1
26 楼
Bless
t*i
27 楼
跪谢大家。想起她我就止不住的泪流。 那么乖的孩子,在学校学习没出过前三名,在
家帮父母洗碗煮饭。前段时间精神状况还不错,看着无助的爸爸,说:“俺知道俺脑子
里长了个瘤”停了停,说:“爸,俺给你唱个歌吧。” 最近几天几乎吃不进任何东西
。一整天都在昏睡。我朋友去看她,说孩子瘦得可怜。不知道可不可以扛过去放化疗。
家帮父母洗碗煮饭。前段时间精神状况还不错,看着无助的爸爸,说:“俺知道俺脑子
里长了个瘤”停了停,说:“爸,俺给你唱个歌吧。” 最近几天几乎吃不进任何东西
。一整天都在昏睡。我朋友去看她,说孩子瘦得可怜。不知道可不可以扛过去放化疗。
t*i
28 楼
是不是恶性肿瘤能不做手术就不做?手术会加速肿瘤扩散吗?
美国这边有比国内更好的治疗这类病的技术吗?有没有希望把她带到美国这边看?
美国这边有比国内更好的治疗这类病的技术吗?有没有希望把她带到美国这边看?
u*t
29 楼
I read lmh's note carefully and agree with him/her.
Here is my thoughts:
Her Alpha fetoprotein is normal. it is often elevated in non-seminona germ
cell tumors.
I still recommend CT scan, serum LDH and biopsy to get path to stop the
guessing games. Is lumbar puncture safe?
Also consider dexamethasone because she might have brain edema.
best of luck.
Here is my thoughts:
Her Alpha fetoprotein is normal. it is often elevated in non-seminona germ
cell tumors.
I still recommend CT scan, serum LDH and biopsy to get path to stop the
guessing games. Is lumbar puncture safe?
Also consider dexamethasone because she might have brain edema.
best of luck.
s*e
30 楼
bless!!!
l*h
31 楼
AFP: yolk sac tumors, 100%.
biopsy can be done but is strongly discouraged because these tumors are
highly vascular and debulking doesn't improve outcome, ie, risk outweighs
potential benefit.
lumbar puncture: it depends on whether she has CSF blockage and if yes,
where the blockage is.
dexamethasone is routinely given if brain edema is suspected. it is also
routinely given during radiation and in some cases chemotherapy.
germ
【在 u*****t 的大作中提到】
: I read lmh's note carefully and agree with him/her.
: Here is my thoughts:
: Her Alpha fetoprotein is normal. it is often elevated in non-seminona germ
: cell tumors.
: I still recommend CT scan, serum LDH and biopsy to get path to stop the
: guessing games. Is lumbar puncture safe?
: Also consider dexamethasone because she might have brain edema.
: best of luck.
biopsy can be done but is strongly discouraged because these tumors are
highly vascular and debulking doesn't improve outcome, ie, risk outweighs
potential benefit.
lumbar puncture: it depends on whether she has CSF blockage and if yes,
where the blockage is.
dexamethasone is routinely given if brain edema is suspected. it is also
routinely given during radiation and in some cases chemotherapy.
germ
【在 u*****t 的大作中提到】
: I read lmh's note carefully and agree with him/her.
: Here is my thoughts:
: Her Alpha fetoprotein is normal. it is often elevated in non-seminona germ
: cell tumors.
: I still recommend CT scan, serum LDH and biopsy to get path to stop the
: guessing games. Is lumbar puncture safe?
: Also consider dexamethasone because she might have brain edema.
: best of luck.
l*h
32 楼
I want to emphasize the treatment must be started as early as possible, with
close HCG monitoring and MRI followup. In the US for such diseases, non-
surgical treatments are usually started the same day a probable diagnosis is
made, surgical the next day.
The specific treatment already produces over 90% cure rate if done early.
How easy is it to improve over this number?
From the information you have shown, no surgery for now. There may be a "
second-look" surgery in the future.
This won't benefit her: "有没有希望把她带到美国这边看?"
【在 t*****i 的大作中提到】
: 是不是恶性肿瘤能不做手术就不做?手术会加速肿瘤扩散吗?
: 美国这边有比国内更好的治疗这类病的技术吗?有没有希望把她带到美国这边看?
close HCG monitoring and MRI followup. In the US for such diseases, non-
surgical treatments are usually started the same day a probable diagnosis is
made, surgical the next day.
The specific treatment already produces over 90% cure rate if done early.
How easy is it to improve over this number?
From the information you have shown, no surgery for now. There may be a "
second-look" surgery in the future.
This won't benefit her: "有没有希望把她带到美国这边看?"
【在 t*****i 的大作中提到】
: 是不是恶性肿瘤能不做手术就不做?手术会加速肿瘤扩散吗?
: 美国这边有比国内更好的治疗这类病的技术吗?有没有希望把她带到美国这边看?
l*y
33 楼
big bless!!!
j*8
34 楼
联系一下st jude children's research hospital试试?希望会有好的结果
b*t
35 楼
bless
z*8
37 楼
bless,
如是恶性脑瘤,完全治愈需要奇迹,现在的手段可以延长生命,
如是恶性脑瘤,完全治愈需要奇迹,现在的手段可以延长生命,
t*i
38 楼
CT片上说是鞍上第三脑室发现肿块。
x*n
39 楼
太可怕了。
我们做家长的要小心了。
【在 p********y 的大作中提到】
: 我表哥的女儿去年也发现这个情况,脑瘤,还是其他症状都太一样了,虽然不知道他的
: 经历有没有代表性,可参考下:
: 孩子6岁,11年初我回国还觉得很活泼,很能说,挺精灵的。下半年就有你家孩子的症
: 状,开始以为吃坏了肚子,后来检查,都傻了。医生说没什么希望,手术还遭罪。结果
: 表哥还是想尽量治。现在手术完了,恢复的还不错,我自己没见,但是打电话说还不错
: 。当时如果不手术,就没治了。孩子现在还在恢复,活动什么的都没问题,但听说没有
: 以前那么多话,脾气也比较不好,不过我觉得好在手术了,不然就没指望了。比较奇怪
: 的是,隔壁病房的有个孩子情况差不多,后来医生透漏,得这种病的孩子都喜欢吃膨化
: 零食,家人也比较依着孩子,这个我很同意,我回去看到这孩子基本不怎么吃饭,要什
: 么大人就去买,主要靠吃零食,国内的食品安全大家也都知道。
我们做家长的要小心了。
【在 p********y 的大作中提到】
: 我表哥的女儿去年也发现这个情况,脑瘤,还是其他症状都太一样了,虽然不知道他的
: 经历有没有代表性,可参考下:
: 孩子6岁,11年初我回国还觉得很活泼,很能说,挺精灵的。下半年就有你家孩子的症
: 状,开始以为吃坏了肚子,后来检查,都傻了。医生说没什么希望,手术还遭罪。结果
: 表哥还是想尽量治。现在手术完了,恢复的还不错,我自己没见,但是打电话说还不错
: 。当时如果不手术,就没治了。孩子现在还在恢复,活动什么的都没问题,但听说没有
: 以前那么多话,脾气也比较不好,不过我觉得好在手术了,不然就没指望了。比较奇怪
: 的是,隔壁病房的有个孩子情况差不多,后来医生透漏,得这种病的孩子都喜欢吃膨化
: 零食,家人也比较依着孩子,这个我很同意,我回去看到这孩子基本不怎么吃饭,要什
: 么大人就去买,主要靠吃零食,国内的食品安全大家也都知道。
S*n
41 楼
只有深深的祝福了!
n*1
42 楼
bless
t*i
43 楼
谢谢大家,尤其是lmh和urright.我侄女现在已经有脑积水了. 我会转达你们的建议给我
弟弟的.同时我也希望我弟弟能找到地方传给我孩子的MRI和CT片.到时候上传给大家.
天坛医院的邱晓光医生也说不能耽误了.明天要再约一下普仁医院的一个化疗医生,看能
不能化疗.孩子的身体状况实在是太差了. 如果不行的话,就直接上放疗了.
回jimmy16888: 我联系了st jude children's research hospital,他们也很快回信了.
但大致意思是该病已经有routine的治疗方案,对他们没啥研究价值.并且由于经费问题,
这种international的case接收的可能性不大.
弟弟的.同时我也希望我弟弟能找到地方传给我孩子的MRI和CT片.到时候上传给大家.
天坛医院的邱晓光医生也说不能耽误了.明天要再约一下普仁医院的一个化疗医生,看能
不能化疗.孩子的身体状况实在是太差了. 如果不行的话,就直接上放疗了.
回jimmy16888: 我联系了st jude children's research hospital,他们也很快回信了.
但大致意思是该病已经有routine的治疗方案,对他们没啥研究价值.并且由于经费问题,
这种international的case接收的可能性不大.
W*L
44 楼
不是很懂,但是Big Bless!!!
h*s
45 楼
其实意思是St Jude有比较好的治疗方法了,那样的话是好事啊,只要你准备好钱就能
得到比较好的治疗了。
PS:这样的case肯定是接收的---有钱不赚怎么可能?
了.
题,
【在 t*****i 的大作中提到】
: 谢谢大家,尤其是lmh和urright.我侄女现在已经有脑积水了. 我会转达你们的建议给我
: 弟弟的.同时我也希望我弟弟能找到地方传给我孩子的MRI和CT片.到时候上传给大家.
: 天坛医院的邱晓光医生也说不能耽误了.明天要再约一下普仁医院的一个化疗医生,看能
: 不能化疗.孩子的身体状况实在是太差了. 如果不行的话,就直接上放疗了.
: 回jimmy16888: 我联系了st jude children's research hospital,他们也很快回信了.
: 但大致意思是该病已经有routine的治疗方案,对他们没啥研究价值.并且由于经费问题,
: 这种international的case接收的可能性不大.
得到比较好的治疗了。
PS:这样的case肯定是接收的---有钱不赚怎么可能?
了.
题,
【在 t*****i 的大作中提到】
: 谢谢大家,尤其是lmh和urright.我侄女现在已经有脑积水了. 我会转达你们的建议给我
: 弟弟的.同时我也希望我弟弟能找到地方传给我孩子的MRI和CT片.到时候上传给大家.
: 天坛医院的邱晓光医生也说不能耽误了.明天要再约一下普仁医院的一个化疗医生,看能
: 不能化疗.孩子的身体状况实在是太差了. 如果不行的话,就直接上放疗了.
: 回jimmy16888: 我联系了st jude children's research hospital,他们也很快回信了.
: 但大致意思是该病已经有routine的治疗方案,对他们没啥研究价值.并且由于经费问题,
: 这种international的case接收的可能性不大.
t*i
46 楼
我申请的是free therapy.
C*e
47 楼
If it is cancer, 90% of cancer cells are visible as a tumor, and the rest of
them are distributed in the tissue around. The closer to the solid tumor,
the higher the cancer cell concentration is.
So basically there is no way to cut off all the cancer cells.
bless
【在 t*****i 的大作中提到】
: 是不是恶性肿瘤能不做手术就不做?手术会加速肿瘤扩散吗?
: 美国这边有比国内更好的治疗这类病的技术吗?有没有希望把她带到美国这边看?
them are distributed in the tissue around. The closer to the solid tumor,
the higher the cancer cell concentration is.
So basically there is no way to cut off all the cancer cells.
bless
【在 t*****i 的大作中提到】
: 是不是恶性肿瘤能不做手术就不做?手术会加速肿瘤扩散吗?
: 美国这边有比国内更好的治疗这类病的技术吗?有没有希望把她带到美国这边看?
i*4
48 楼
I am really sorry for you niece.
My cousin has the same type of tumor (颅咽管瘤 Craniopharyngiomas are
dysontogenic tumors with benign histology and malignant behavior). The
symptoms presented when she was 24 years old. The bad thing about the "
benign" tumor is the high rate of recurrence.
She had the operation by the best surgeon at Tiantan Hosptial in Beijing,
but it came back 4.5 years later. Now her situation is worse than the first
time.
My aunt worries about her a looot. She asked me to search if there is some
better treatment/therapy in US. As far as I know, I didn't find big
difference.
Please let me know if you have any luck in searching.
【在 t*****i 的大作中提到】
: 10岁的小侄女一直长得就比较小,最近发现厌食,经常呕吐,视力减退。前天CT扫描发
: 现在脑干部有一30.6X30.2mm的肿瘤。医生说很确定是颅咽管瘤。需要手术切除。求问
: 大家什么样的手术方案最好,术后能不能恢复正常,发生术后并发症的可能性有多大?
: 美国或者国内哪里做这类手术是最好的?网上说十年存活率才有70%左右,是真的吗?
: 跪谢。
: Update:
: 上周看了天坛医院的神经外科专家马振宇教授的特需门诊,马教授说80%的可能是生殖
: 细胞瘤或者星形细胞瘤。建议先放疗。网上查了一下,仅生殖细胞瘤就有好几种。孩子
: 的肿瘤标记物检测,大都还好,只有一项HCG指标超高。会不会是最恶性的绒毛膜癌啊
: 。如果是的话,应该怎样治疗啊,十年存活率是多少?
My cousin has the same type of tumor (颅咽管瘤 Craniopharyngiomas are
dysontogenic tumors with benign histology and malignant behavior). The
symptoms presented when she was 24 years old. The bad thing about the "
benign" tumor is the high rate of recurrence.
She had the operation by the best surgeon at Tiantan Hosptial in Beijing,
but it came back 4.5 years later. Now her situation is worse than the first
time.
My aunt worries about her a looot. She asked me to search if there is some
better treatment/therapy in US. As far as I know, I didn't find big
difference.
Please let me know if you have any luck in searching.
【在 t*****i 的大作中提到】
: 10岁的小侄女一直长得就比较小,最近发现厌食,经常呕吐,视力减退。前天CT扫描发
: 现在脑干部有一30.6X30.2mm的肿瘤。医生说很确定是颅咽管瘤。需要手术切除。求问
: 大家什么样的手术方案最好,术后能不能恢复正常,发生术后并发症的可能性有多大?
: 美国或者国内哪里做这类手术是最好的?网上说十年存活率才有70%左右,是真的吗?
: 跪谢。
: Update:
: 上周看了天坛医院的神经外科专家马振宇教授的特需门诊,马教授说80%的可能是生殖
: 细胞瘤或者星形细胞瘤。建议先放疗。网上查了一下,仅生殖细胞瘤就有好几种。孩子
: 的肿瘤标记物检测,大都还好,只有一项HCG指标超高。会不会是最恶性的绒毛膜癌啊
: 。如果是的话,应该怎样治疗啊,十年存活率是多少?
i*4
49 楼
I am really sorry for you niece.
My cousin has the same type of tumor (颅咽管瘤 Craniopharyngiomas are
dysontogenic tumors with benign histology and malignant behavior). The
symptoms presented when she was 24 years old. The bad thing about the "
benign" tumor is the high rate of recurrence.
She had the operation by the best surgeon at Tiantan Hosptial in Beijing,
but it came back 4.5 years later. Now her situation is worse than the first
time.
My aunt worries about her a looot. She asked me to search if there is some
better treatment/therapy in US. As far as I know, I didn't find big
difference.
Please let me know if you have any luck in searching.
cystic
【在 l*h 的大作中提到】
: I commented on your earlier message but oh man, this is killing me. When "医
: 生说很确定是颅咽管瘤", I thought they saw the typical presentations of it
: because 颅咽管瘤 is so distinct on MRI scans. 颅咽管瘤 in children have
: large cysts in >99% cases whereas infratentorial gliomas rarely show cystic
: changes before radiation therapy. 颅咽管瘤 can encroach into the brainstem
: but the epicenter is outside the brainstem.
: Intracranial choriocarcinomas are very rare. But as HCG was significantly
: elevated, it is a real possibility now. A germ cell tumor is highly
: suspected. Now a differential should be made between germinoma and
: choriocarcinoma. ~10% germinoma secrete HCG, 100% choriocarcinoma secrete
My cousin has the same type of tumor (颅咽管瘤 Craniopharyngiomas are
dysontogenic tumors with benign histology and malignant behavior). The
symptoms presented when she was 24 years old. The bad thing about the "
benign" tumor is the high rate of recurrence.
She had the operation by the best surgeon at Tiantan Hosptial in Beijing,
but it came back 4.5 years later. Now her situation is worse than the first
time.
My aunt worries about her a looot. She asked me to search if there is some
better treatment/therapy in US. As far as I know, I didn't find big
difference.
Please let me know if you have any luck in searching.
cystic
【在 l*h 的大作中提到】
: I commented on your earlier message but oh man, this is killing me. When "医
: 生说很确定是颅咽管瘤", I thought they saw the typical presentations of it
: because 颅咽管瘤 is so distinct on MRI scans. 颅咽管瘤 in children have
: large cysts in >99% cases whereas infratentorial gliomas rarely show cystic
: changes before radiation therapy. 颅咽管瘤 can encroach into the brainstem
: but the epicenter is outside the brainstem.
: Intracranial choriocarcinomas are very rare. But as HCG was significantly
: elevated, it is a real possibility now. A germ cell tumor is highly
: suspected. Now a differential should be made between germinoma and
: choriocarcinoma. ~10% germinoma secrete HCG, 100% choriocarcinoma secrete
S*3
50 楼
bless
s*f
51 楼
:( bless!!!
Y*n
52 楼
视频安全应该不会这么快导致肿瘤。。住宅附近的辐射吧。。。bless!
m*u
53 楼
Bless
j*r
54 楼
bless!!!! 希望孩子平安!!!!!!
p*d
55 楼
bless the child!!!
j*n
56 楼
bless
c*4
57 楼
bless
u*l
58 楼
big big bless!
u*l
59 楼
big big bless!
u*l
60 楼
big big bless!
c*a
61 楼
不懂医,只能送上bless了
希望快好起来,小姑娘太可怜了
希望快好起来,小姑娘太可怜了
y*b
62 楼
bless!!!!
l*z
63 楼
big bless!!!!!!
z*o
65 楼
如果真的是脑干附近的肿瘤,一般都不能手术的。连做活检或者放疗都不好做。因为脑
干功能太重要了也没有太多代偿的余地。另外,你问St Jude时应该把肿瘤的具体位置
和相关信息准确的传达。因为他们的研究只对特定分型感兴趣,希望准确的信息有所帮
助。前几年他们还在做脑干肿瘤相关的研究,要不你再问问?bless
干功能太重要了也没有太多代偿的余地。另外,你问St Jude时应该把肿瘤的具体位置
和相关信息准确的传达。因为他们的研究只对特定分型感兴趣,希望准确的信息有所帮
助。前几年他们还在做脑干肿瘤相关的研究,要不你再问问?bless
t*i
66 楼
谢谢.我跟St Jude联系的时候确实没说肿瘤的具体位置,只说可能是生殖细胞瘤或者星
形细胞瘤.我现在想通了,孩子的病在哪儿看已经不重要了.重要的是要马上采取治疗.孩
子现在整天都在昏睡,吃啥都吐.前天吃了6,7个虾,我弟弟都非常高兴.国内的医疗效率
真是慢啊.托人找了关系还每天这儿一下,那儿一下的,来北京都两个多星期了,连院都还
住不上,虽然医生自己也说了,孩子的病不能再拖了.
在老家看了一两个月,查这个查那个的,那些医生竟没一个人想到可能是头上有病,还是
我弟弟说不会是脑子有啥问题吧,才给做了个CT,发现问题.
形细胞瘤.我现在想通了,孩子的病在哪儿看已经不重要了.重要的是要马上采取治疗.孩
子现在整天都在昏睡,吃啥都吐.前天吃了6,7个虾,我弟弟都非常高兴.国内的医疗效率
真是慢啊.托人找了关系还每天这儿一下,那儿一下的,来北京都两个多星期了,连院都还
住不上,虽然医生自己也说了,孩子的病不能再拖了.
在老家看了一两个月,查这个查那个的,那些医生竟没一个人想到可能是头上有病,还是
我弟弟说不会是脑子有啥问题吧,才给做了个CT,发现问题.
x*l
67 楼
衷心为孩子祷告! 祝愿能够恢复健康!
l*h
68 楼
a few more words:
1. Intracranial germ cell tumors are much more common in east Asian
population. Some groups' data show for certain types, incidence in east
Asian population is 10 times of that in Caucasian.
2. Formal training cannot be overemphasized. In the US, rare diseases are an
essential part of residency training and board certification. Residents are
taught about these rare diseases including some of those that are so rare
that the whole department doesn't see one for the length of 3 - 7 years of
the programs. In China, there is still no official postgraduate medical
training. There is the so-called 执业资格考试 and 技术职称资格考试, but they
are jokes. I got the full score in 主治医师技术职称资格考试 by cramming
with a 2-page 复习提纲 in a specialty I had no experience just 3 months
after being forcibly re-asigned to it by political officials. So only a very
small number of doctors in China have the systematic approach to diagnosis
and treatment.
3. Most of these tumors are so sensitive to chemotherapy or radiation, you
can even achieve a cure in many patients who come in on the brink of dying.
In these patients coming in late, the key is good support treatment to tide
the patient over the chemotherapy or radiation.
【在 t*****i 的大作中提到】
: 谢谢.我跟St Jude联系的时候确实没说肿瘤的具体位置,只说可能是生殖细胞瘤或者星
: 形细胞瘤.我现在想通了,孩子的病在哪儿看已经不重要了.重要的是要马上采取治疗.孩
: 子现在整天都在昏睡,吃啥都吐.前天吃了6,7个虾,我弟弟都非常高兴.国内的医疗效率
: 真是慢啊.托人找了关系还每天这儿一下,那儿一下的,来北京都两个多星期了,连院都还
: 住不上,虽然医生自己也说了,孩子的病不能再拖了.
: 在老家看了一两个月,查这个查那个的,那些医生竟没一个人想到可能是头上有病,还是
: 我弟弟说不会是脑子有啥问题吧,才给做了个CT,发现问题.
1. Intracranial germ cell tumors are much more common in east Asian
population. Some groups' data show for certain types, incidence in east
Asian population is 10 times of that in Caucasian.
2. Formal training cannot be overemphasized. In the US, rare diseases are an
essential part of residency training and board certification. Residents are
taught about these rare diseases including some of those that are so rare
that the whole department doesn't see one for the length of 3 - 7 years of
the programs. In China, there is still no official postgraduate medical
training. There is the so-called 执业资格考试 and 技术职称资格考试, but they
are jokes. I got the full score in 主治医师技术职称资格考试 by cramming
with a 2-page 复习提纲 in a specialty I had no experience just 3 months
after being forcibly re-asigned to it by political officials. So only a very
small number of doctors in China have the systematic approach to diagnosis
and treatment.
3. Most of these tumors are so sensitive to chemotherapy or radiation, you
can even achieve a cure in many patients who come in on the brink of dying.
In these patients coming in late, the key is good support treatment to tide
the patient over the chemotherapy or radiation.
【在 t*****i 的大作中提到】
: 谢谢.我跟St Jude联系的时候确实没说肿瘤的具体位置,只说可能是生殖细胞瘤或者星
: 形细胞瘤.我现在想通了,孩子的病在哪儿看已经不重要了.重要的是要马上采取治疗.孩
: 子现在整天都在昏睡,吃啥都吐.前天吃了6,7个虾,我弟弟都非常高兴.国内的医疗效率
: 真是慢啊.托人找了关系还每天这儿一下,那儿一下的,来北京都两个多星期了,连院都还
: 住不上,虽然医生自己也说了,孩子的病不能再拖了.
: 在老家看了一两个月,查这个查那个的,那些医生竟没一个人想到可能是头上有病,还是
: 我弟弟说不会是脑子有啥问题吧,才给做了个CT,发现问题.
t*i
69 楼
今天医生给开了甘露醇和地塞米松,弟弟说见效挺快的,晚饭吃的还可以。但医生只给
开了两瓶(2X250ml), 说是尽快下周一给安排化疗。想问问化疗前需要使颅内压恢复
正常吗?看有些说要做脑积水分流术。我侄女现在有脑积水。
开了两瓶(2X250ml), 说是尽快下周一给安排化疗。想问问化疗前需要使颅内压恢复
正常吗?看有些说要做脑积水分流术。我侄女现在有脑积水。
d*1
70 楼
Bless!!
l*h
71 楼
1. 甘露醇和地塞米松 are used to control edema and intracranial pressure (ICP
). as long as edema is reasonably controlled, you don't want to have too
much of the drugs.
2. the arrangement is very slow. in the US, such fast-growing tumors are
treated as emergency, initial non-surgical treatment is usually started on
the same day a probable diagnosis is reached, which can be in the weekend.
3. ICP needs to be at a safe level, not necessarily in the normal range.
4. because it is expected the chemotherapy to be very effective in such
patients, usually only a temporary CSF drainage is used if dexamethasone is
not sufficient, instead of more permanent CSF diversion (VP shunt etc).
5. it is ironic that 集体主义 is emphasized so much in propaganda but in
reality there is so little coordination. i am just giving an example how we
coordinate care for fast-growing brain tumors. say a neurooncologist see a
patient in the clinic suspected of medulloblastoma, he orders an MRI to be
done immediately, in an hour or two, you are pretty sure if it is actually
is a medullo. if it is, the patient is to be seen by neurosurgeon as soon as
MRI results are out (the same day), the surgeon will in fact see the
patient the same day, even if he is in the OR, the patient and family will
be sent to a room waiting for the surgeon. if the surgeon determines a
surgery can be done, the patient is sent to the medical team to be prepared
for surgery (even if it's already off hours). the next day, the patient is
already being operated on. some non-urgent patients previously scheduled for
surgery may be re-scheduled to make room for these urgent tumor patients.
the oncology team immediately takes over the daily care after surgery with
all relevant specialties involved.
for non-urgent cases, we have weekly conference with neurosurgeons,
neurooncologists, radiation oncologists, neuroradiologists,
neuropathologists and sometimes critical care staff going through the cases.
【在 t*****i 的大作中提到】
: 今天医生给开了甘露醇和地塞米松,弟弟说见效挺快的,晚饭吃的还可以。但医生只给
: 开了两瓶(2X250ml), 说是尽快下周一给安排化疗。想问问化疗前需要使颅内压恢复
: 正常吗?看有些说要做脑积水分流术。我侄女现在有脑积水。
). as long as edema is reasonably controlled, you don't want to have too
much of the drugs.
2. the arrangement is very slow. in the US, such fast-growing tumors are
treated as emergency, initial non-surgical treatment is usually started on
the same day a probable diagnosis is reached, which can be in the weekend.
3. ICP needs to be at a safe level, not necessarily in the normal range.
4. because it is expected the chemotherapy to be very effective in such
patients, usually only a temporary CSF drainage is used if dexamethasone is
not sufficient, instead of more permanent CSF diversion (VP shunt etc).
5. it is ironic that 集体主义 is emphasized so much in propaganda but in
reality there is so little coordination. i am just giving an example how we
coordinate care for fast-growing brain tumors. say a neurooncologist see a
patient in the clinic suspected of medulloblastoma, he orders an MRI to be
done immediately, in an hour or two, you are pretty sure if it is actually
is a medullo. if it is, the patient is to be seen by neurosurgeon as soon as
MRI results are out (the same day), the surgeon will in fact see the
patient the same day, even if he is in the OR, the patient and family will
be sent to a room waiting for the surgeon. if the surgeon determines a
surgery can be done, the patient is sent to the medical team to be prepared
for surgery (even if it's already off hours). the next day, the patient is
already being operated on. some non-urgent patients previously scheduled for
surgery may be re-scheduled to make room for these urgent tumor patients.
the oncology team immediately takes over the daily care after surgery with
all relevant specialties involved.
for non-urgent cases, we have weekly conference with neurosurgeons,
neurooncologists, radiation oncologists, neuroradiologists,
neuropathologists and sometimes critical care staff going through the cases.
【在 t*****i 的大作中提到】
: 今天医生给开了甘露醇和地塞米松,弟弟说见效挺快的,晚饭吃的还可以。但医生只给
: 开了两瓶(2X250ml), 说是尽快下周一给安排化疗。想问问化疗前需要使颅内压恢复
: 正常吗?看有些说要做脑积水分流术。我侄女现在有脑积水。
t*i
72 楼
谢谢lmh. 我侄女终于住上院了。说下周一开始化疗。
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