查看完整版本 : 末期淋巴癌

Pcghon 2015-12-25 08:51 AM

各位好!

我老公十月初被確診患有末期primary central nervous system lymphoma (原發性中樞神經系統淋巴癌), diffuse B cell. 醫生說這種癌較罕見及非常兇猛,因年紀問題不適合做化療,所以服用類固醇及電療作舒緩治療。即使能控制腫瘤的情況, 但一般來說好快復發.

十月尾電療後至今, 他身體很弱, 胃口亦不好,因為有腫瘤在左腦, 影響到右邊身的機能, 右手寫不到字, 右腳亦無力行路。十二月初因肺動脈栓塞及尿道炎入院, 自始我每天要幫他打薄血針, 壓力很大,因為自己很怕血和針,但我無得揀。

我覺得這條路很孤單,我明白要積極面對才有幫助, 但是看著他受苦我心如刀割, 寧願病的是我...

找到這個討論區, 感覺到有同路人。所以就發個帖, 想知道有無其他人同我老公有同一個病, 希望大家可以比啲正能量我.

我們結婚只有五年, 說過想做的事很多還沒有做, 我心裡萬般不捨, 卻又無可奈何, 我希望自己堅強些, 但不是常做到. 有時會想這樣的日子要到幾時才會完? 但有得過雖然艱難起碼他仍未離開我....

LwcI7439 2015-12-25 09:02 AM

加油吧,你可轉食薄血丸,唔使日日打針咁辛苦



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yinyin09 2015-12-25 09:27 AM

有冇食標靶藥丫



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MiniMiranda 2015-12-25 11:15 AM

家人也是患上血癌,並需在脊髓打化療 need to stay in hospital for 3-5 days every 3 week.,E生也說她那種非常Aggressive.但我不大清楚類別as Dr said there are lots of typies and different case treatment will be provided in accordance to patient's age, body health and the point of origin原發點)。她近來有點疲態,但keep住食療及exercise。Your husband case maybe a bit challenging. 試替他按摩及用緩毯放於肩頸舒緩肌肉疼痛。You may also seek advice from them. 加油!
心血會:協助病友深入了解血癌和淋巴癌的療程
電話 Tel:2603 6869

Pcghon 2015-12-25 01:02 PM

謝謝大家。

老公是在加拿大病發、確診及接受治療的,那邊的醫生說他年紀太大不適合化療,覺得他的身體承受不了,他們也說他們沒有標靶藥,而由於腫瘤在腦的較深位置,所以也不能做手術。

我們回香港,我希望可以揾中醫或其他療法,在加拿大人生路不熟,獨力照顧他我也應付不來。

已去了公立醫院求診,薄血藥醫生叫我繼續打住先,佢有寫紙比我地去就近政府診所打,但老公行動不便,不想他來回折騰,所以都係返我自己打。醫生有轉介我地去睇內科睇有無得轉藥,但排期到出年七月,真係唔知等唔等到嗰日....

Pcghon 2015-12-25 01:10 PM

MiniMiranda, 你好,謝謝你的回覆。

可以請教你多一點關於食療、運動及按摩的資料嗎?我希望在這幾方面努力啲,可令老公情況好啲,懇請你指點一下。暫時我只帶佢睇過一次中醫,但醫生講得唔多,有點失望,我諗可能要揾第二個。

Staystronger 2015-12-25 02:24 PM

我先生患的是肝癌,今年五月diagnosed !stage 3! The tumors were 11cm and 2cm. 我當時完全沮喪,我地結婚一年半,bb只有兩個月,一邊breastfeeding 一邊照顧老公!多謝呢個group有好多同路人既支持打氣同幫助,總算捱過最困難無助既時候!你要好好保重加油同stay stronger. 要相信醫療一天比一天進步,加油同路人💪💪💪



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wongsocow 2015-12-25 06:27 PM

樓主家中附近有政府診所嗎?可以輪椅推去.
我的親人我都係推佢去打針或洗傷口, 每次17元.綜援免費

又問過樓下的私家E生打針 每次35元, 扣醫療卷就 50元

765432 2015-12-25 07:28 PM

保重



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mac2009 2015-12-25 07:34 PM

我親友都有癌症,近排食冬蟲草好好多,不過真係好貴:smile_39:

[[i] 本帖最後由 mac2009 於 2015-12-25 10:57 PM 編輯 [/i]]

火神之子 2015-12-25 10:46 PM

我爸爸都係淋巴癌,第四期,現在做化療同標靶藥,情況時好時差,胃口差,有時有氣促,但我屋企人都唔會放棄,樓主你都要加油,屋企人既支持好重要架,



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mac2009 2015-12-25 11:09 PM

試下癌症粉粉,對化療期間有好處。

[quote]原帖由 [i]火神之子[/i] 於 2015-12-25 22:46 發表 [url=http://www.discuss.com.hk/redirect.php?goto=findpost&pid=432662839&ptid=25396992][img]http://www.discuss.com.hk/images/common/back.gif[/img][/url]
我爸爸都係淋巴癌,第四期,現在做化療同標靶藥,情況時好時差,胃口差,有時有氣促,但我屋企人都唔會放棄,樓主你都要加油,屋企人既支持好重要架,



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MiniMiranda 2015-12-26 12:08 AM

你去那一區?在香港血癌屬腫瘤科或內科。
香港X麗及沙田威X記都較專業,加上有大學支援resources較佳。你找一個E生推介,理應較快處理, Maybe they will call you after the holiday and rearrange an earlier appointment to you. I am not dare to say my sister's way of treatment suit you.I can only say it helps in her case.

MiniMiranda 2015-12-26 12:42 AM

[url=http://www.discuss.com.hk/viewthread.php?tid=23440520&extra=&page=1]http://www.discuss.com.hk/viewthread.php?tid=23440520&extra=&page=1[/url]
這是之前覆的部份內容你可參考。
1. 家人較幸運每次打化療及脊髓化療都撐到。她住院期間的確遇上不少血科病人,年紀較大的人,剤量減,不少上年紀的人根本第二,三次化療已發高熱要停打,E生便治療患者的不同side-effect instead of having chemo.
2.家人在治療時不敢看中E,後到廣華X院的腫瘤科中E較實惠。
3. 要治療單靠吃不夠,運動很重要。令身體排毒及增免疫力,但冬天期間,想病人舒服點,頸後必須保緩不可着涼,否則易有疼症,家人曾因頸肌肉太緊,全身痛得嚴重.現在任何天氣也帶頸巾或頭巾保護,同時睡前浸腳至膝. ...夜了,可能要明午才說。

[[i] 本帖最後由 MiniMiranda 於 2015-12-26 12:47 AM 編輯 [/i]]

火神之子 2015-12-26 06:38 AM

都有丫,有飲營養奶同營養果汁



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multinumbers123 2015-12-26 09:42 AM

又系果句囉,曾在生之年做自己想做嘅嘢。



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sandycky 2015-12-26 12:55 PM

樓主,我爸爸都係患左淋巴癌,佢76歲.唔煙唔酒.但有高血壓同冠心病,
今年初是成日頭痛.仲流青鼻涕.去睇醫生.話佢鼻竇炎.後來年中佢頸果度生左個好大個的瘤.又肺積水引起突然心臟病入院.
之後抽左組織話佢係B型淋巴癌,照左PET CT話佢第4期.癌細胞擴散到全身.骨骼都有,後來做左化療同電療(安排份量好輕微的治療).頸上的瘤已漸收細好多.依家要KEEP住食粉粉同覆診.

祝樓主家人早日康復.其實政府醫院有好多關於癌病的支援.可以問下姑娘,同埋留意下你去果間醫院腫瘤科的海報.

mac2009 2015-12-26 02:46 PM

咁效果點?

我親友食埋冬蟲草,每日三條,效果唔錯,當然係病人狀態黎講,醫生話佢唔錯。

[quote]原帖由 [i]火神之子[/i] 於 2015-12-26 06:38 發表 [url=http://www.discuss.com.hk/redirect.php?goto=findpost&pid=432672848&ptid=25396992][img]http://www.discuss.com.hk/images/common/back.gif[/img][/url]
都有丫,有飲營養奶同營養果汁



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wongsocow 2015-12-26 03:13 PM

[quote]原帖由 [i]sandycky[/i] 於 2015-12-26 12:55 PM 發表 [url=http://www.discuss.com.hk/redirect.php?goto=findpost&pid=432683987&ptid=25396992][img]http://www.discuss.com.hk/images/common/back.gif[/img][/url]
樓主,我爸爸都係患左淋巴癌,佢76歲.唔煙唔酒.但有高血壓同冠心病,
今年初是成日頭痛.仲流青鼻涕.去睇醫生.話佢鼻竇炎.後來年中佢頸果度生左個好大個的瘤.又肺積水引起突然心臟病入院.
之後抽左組織話佢係B型淋巴癌 ... [/quote]乜野係粉粉?

sandycky 2015-12-26 05:09 PM

[quote]原帖由 [i]wongsocow[/i] 於 2015-12-26 03:13 PM 發表 [url=http://www.discuss.com.hk/redirect.php?goto=findpost&pid=432690944&ptid=25396992][img]http://www.discuss.com.hk/images/common/back.gif[/img][/url]
乜野係粉粉? [/quote]

打錯字.係奶粉.有需要可以向姑娘或社工查詢或介紹.

khykhykhy 2015-12-26 06:30 PM

中樞淋巴瘤應全腦放療+鞘注MTX方案

如要第二意見,可找養X梁教授,佢應該係本港血液科權威



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khykhykhy 2015-12-26 06:50 PM

[quote]原帖由 [i]MiniMiranda[/i] 於 2015-12-25 11:15 AM 發表 [url=http://www.discuss.com.hk/redirect.php?goto=findpost&pid=432637390&ptid=25396992][img]http://www.discuss.com.hk/images/common/back.gif[/img][/url]
家人也是患上血癌,並需在脊髓打化療 need to stay in hospital for 3-5 days every 3 week.,E生也說她那種非常Aggressive.但我不大清楚類別as Dr said there are lots of typies and different case treatmen ... [/quote]

I remember your sister has already been cured, or she has further progression recently?



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MiniMiranda 2015-12-26 08:50 PM

Her blood tests are not really good recently. She needs to recheck and revisit the hopsiptal more frequently. She does not talk much about her progress. Maybe she works too hard and worry too much. She told me she has to do more exercise again as once she stops her health seems not so good. At the moment, I am busy to take care of other family member whose cancer spread to liver.

MiniMiranda 2015-12-26 08:52 PM

Yes, agree. He is a good one though a bit expensive, a kind-hearted experienced dr.

khykhykhy 2015-12-26 09:06 PM

[quote]原帖由 [i]MiniMiranda[/i] 於 2015-12-26 08:50 PM 發表 [url=http://www.discuss.com.hk/redirect.php?goto=findpost&pid=432707903&ptid=25396992][img]http://www.discuss.com.hk/images/common/back.gif[/img][/url]
Her blood tests are not really good recently. She needs to recheck and revisit the hopsiptal more frequently. She does not talk much about her progress. Maybe she works too hard and worry too much. Sh ... [/quote]

Hope she is fine.

I believe stress is one of the cause for lymphoma progression. Probably the best way is to ask her to relax. If possible, take one or two year off from work.



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MiniMiranda 2015-12-26 09:51 PM

Thanks a lot! It is not easy considering our family's situation. Both my sister and I need to work. But her work is much more demanding and I will do  my best to help. But luckily she has tough mind and keeps a healthy diet. The only thing I notice, after she does less exercise, her health is not as good as before.

eddie4267226 2015-12-28 05:13 AM

試下睇中醫啦,我太太係四期胸線癌,做完個大手術切細左個瘤,但可用既化療藥唔多,所以醫生叫緊急時先再化療,現在一直食緊中藥,一日去兩三次廁所排毒,我初初都好沮喪,這條路真的好難行,現在我都係希望中醫可以醫好佢,我有個親人的朋友個女係淋巴四期,都係俾中醫醫好,係醫好,無哂事,樓主唔好放棄,加油



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Pcghon 2015-12-28 08:35 AM

非常多謝大家既鼓勵同埋提供既資訊,我真係有好多野要去學。

我地已經去QE睇左一次,基本上係了解病情同叫繼續食住加拿大開既藥,一月頭去照pet scan, 跟住再覆診。本來我地都有預約去養x睇梁教授,後因嗰日要去醫院吊抗生素老公太攰所以放棄左無去睇,遲啲會再去預約。

我剛開始打果汁比老公飲,大家可唔可以分享下打啲咩果汁好呀?我浄係橙同萍果,奇異果咁。

昨晚整左南瓜濃湯,佢好鐘意飲左一大碗,見到佢食多少少食得開懷我已不知幾開心,好多野以前認為理所當然,而家就會為一件小事感恩珍惜。

上星期第一次睇中醫,只係沖劑老公已頗抗拒,我諗㷛藥的話佢一定飲唔落,我好想佢好但又唔知點可以令佢飲藥.....

刨文見大家討論顧小培的四寶,諗緊好唔好試....

Pcghon 2015-12-28 08:48 AM

[quote]原帖由 [i]eddie4267226[/i] 於 2015-12-28 05:13 AM 發表 [url=http://www.discuss.com.hk/redirect.php?goto=findpost&pid=432791676&ptid=25396992][img]http://www.discuss.com.hk/images/common/back.gif[/img][/url]
試下睇中醫啦,我太太係四期胸線癌,做完個大手術切細左個瘤,但可用既化療藥唔多,所以醫生叫緊急時先再化療,現在一直食緊中藥,一日去兩三次廁所排毒,我初初都好沮喪,這條路真的好難行,現在我都係希望中醫可以 ... [/quote]


謝謝你的分享和鼓勵,希望你太太好快康復!

我好希望老公可以好返,但明白是奢望,我只望佢可以好似我從網上睇到既例子咁,同個腫瘤並存。加拿大幫佢做biopsy 既䐉外科醫生係至今唯一一個比一點希望我既醫生,佢話佢有一個同我老公情況相約既病人,治療後至今活了兩年,但當然這是萬中無一的例子,我怕希望變失望,而家只係有一日過一日。

yeemeif 2015-12-28 04:04 PM

四小寶其實係食物提純,就算食都唔會有咩副作用,最多都係無效,呢個關頭值得一試!



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查看完整版本: 末期淋巴癌