Thank you everyone!!! Merry Xmas!!!!
Merry Christmas everyone, My wife got a full body Pet and CT scan 2 weeks ago and it turn out all good and clean.
Dr. told her to do blood test and marker every 3 months from now on.
I understand that the chance of recurrence still high but at least we can take a little break for now...
Any advice on what I have to watch out
Thanks and Merry Christmas!!!!
Re: My personal case study & history of cholangiocarcinoma treatment (59 replies, posted in Members' Cafe)
Thanks Percy!!! seems like I will ask my wife do have more scan than what the Dr. ask her to do... the Dr. arranged her to do Pets every half year only, and blood test and marker every 3months from now on..
Hi all.. been little while... My wife Joe just finished her 2 cycles of Xeloda+oxaliplatin. there wont be 3 cycles as the Dr feels she got enough and don't have any data to back up the 3rd shot will do better than just 2. (plus my wife been crying about don't want the 3rd shot) so this is it and hope she don't need to do it again ever!!!
going to do the blood test tomorrow and Pets in Nov. (hope for the best)
during her treatment, I somehow I don't feel she's that sick and cannot handle the treatment, she didn't have weight loss.. nausea, vomiting... she only complain fatigue and the stomach pain due to that RT.
She tried some Chinese medicine (from the Dr. whos oncologist and licensed Chinese Dr.) with her 1st cycle and that's really made her feel better... my mom didn't notice shes doing chemo at that time. but somehow the AST ALT ad GGT went up 1.5times compare to the one before this treatment so we decided to stop the Chinese med for 2nd cycle.
Thinking she might keep trying the Chinese Med later on. coz she feel that's helps on her breathing, more energy, and her face not as pale.
in mean while for sure there are lots and lots of information about whats good and whats bad to eat and do..... and we pick out couple to try out...
1. Asparagus. suppose they said cook it and blend it then have 4 soup spoon day and night. but we only have it steam cook and eat it as its every other day.
2. Raw potato Juice. I even brought a new slow turn juicer for that. We put 1 apple with 2 medium size potato it juice out around 250ml it actually taste good, shes having it every morning before breakfast. she felt her digest better with easy poo poo everyday now.
3. Alkaline Water. got someone tying to sell me a 3.5K USD water filter system but somehow I found this Panasonic water filter system (500USD) can do the same job so I brought one to try out.
feel free to give me comments and ask me questions.
Got a friend who got colorectal cancer but cannot resection, he then got a Japanese Dr. telling him to try that Tian Xian Liquid which Lucian had mention here be4. anyone knows whats that and is that work for all cancer?? I know they selling in HK but seems like they just selling it at local drug store and those promoter sure say that's the best for cancer and u don't need to do any chemo or RT just use that u will be cure.....
Hi, my wife do get those red spots with Xeloda.. they will turn to black colour later on (I think that's around 2nd 14days cycle)... yes both hands and feet... Dr said those spots will fade out after treatment stop.
Hi Stan, My wife just finished 25 radiation treatments (IMRT) with Xeloda 2 14days on and 7 days off in between 3 weeks ago.
she had severe fatigue during the whole treatment,
After 5th shot of RT, her skin start getting dry and itch, but she was fine after using Radia Gel.
And at around 18th shot of RT she start having problem with stomach pain. so u better do as "wallsm1" suggest!!! my wife barely made it through... and now still taking medicine for that...
She will be doing another 2 or 3 set of Chemo (Xeloda+oxaliplatin) 3 weeks a set. DR. told us on last visit saying 2 set might be enough... anyone can tell me should I stick with 3 set or just do as Dr. said 2 set???
Thanks Lainy and Purcy, ill keep that in mind about those pre-med this time. we will go to see the Dr. tomorrow morning about her stomach problem, hope the Dr. can fix that problem and she can start eating again soon...
1 question is can this holiday before the next 3 cycles be a bit longer (its only 5 days in between)?? I really want her to get the stomach problem fixed before she start another set.
Hi everyone, just a little update about my wife.
She finally finished her 1 set of treatment: 25 shots of IMRT and two 14 days Xeloda.
Her stomach pain seems to be a big problem now... she cannot eat much, and she throw up right after, her pain seems to be non stop for whole day.
she start losing faith and self confidence, she don't want to meet people, and scare to look at people into their eyes, she admit that she don't want people knows she got the sickness... she even cry to me and saying she don't want to do the next set of chemo.
Somehow I did have a thought of letting her to choose, but l calm her down and ask her to wait till the next Dr. meeting then we will decide by then
Hi Lainy, Thanks for your concern, im good, although I loss some weight and really tired, but still I think it worth it... new apt is good.. just need to spend almost 1 week for clean up and fixing things be4 I move in, the previous tenant really don't know whats called cleaning... the kitchen is really a mess... those grease on the cupboard and exhaust fan are dripping oil... the washroom is like walking in to dark room.. so I have to change those lighting as well... becoz the owner is my relative that's why I got a special discount rent and I willing to those cleaning and fixing. My wife is really happy with what I've done, and that's what matter.
Hi Susie, yes my wife start having the problem Monday, so today I ask the Dr. she said the dosage did gain a bid this week and that's why she got the problem, she ask my wife to take Gaviscon and Pantoloc 40mg, and my wife really did felt much better tonight.
hi everyone.. i'm back.. its been a real tired week for me as I need to move apartment all by myself, plus I need to take my wife to hospital for RT everyday. Really got no idea why we got some many things for 2 person, it took me 1 week to unpack everything.
Well, day 19 for IMRT (5 days a week) and day 16 for Xeloda (14days on and 9 day off due to blood report delay) She seems ok with the treatment.
RT: skin problem gone after using radiagel, pain problem is ok after she took Arcoxia, but she start having stomach pain the last 3 days, but after she ate something she felt better, but still should call the doctor tomorrow and ask.
Chemo: Fatigue.. need to sleep in the afternoon for 2 hours at least. Nausea... but didn't throw up after she took that ondansetron.
she did a blood test after 14days of chemo, the result seems pretty good, PLT drop from 235 to 156 but still ok to keep going with Chemo...
Dr. also expect she can go on with the adjuvant therapy after finish this set with 1 week holiday. Which planned on Aug 5. shes planning to use Oxaliplatin (Eloxatin) plus Xeloda, 3week for a set and total of 3 sets.
Hi Pam, Thanks for sharing your feeling, I know its hard for you and your family at this moment, but time will heal, consider that's a release for Lauren, and she went to a better place and a place that she don't have pain.
Love and Hugs
Yes since the 1st day my wife diagnosis, I already got the same feeling about money is not the point anymore.. but just to point out that there are people out there give no mercy, they will try to rip u off no matter what... some even will sell fake drugs or Vitamin saying it will cure cancer...
sorry for the late reply.. thanks Lainy and PCL for your advice.
we went to see the doctor on the 2nd July for check up and mainly due to lack of "ondansetron", the time we pick up the Xeloda Dr. gave her 6 tablets just in case, but then on the 30th June, she run out. and the 1st July is HK holiday and she really needs it, so I went to a local drug store and found 1 box of 10 tablets by gsk. anyone knows how much will that be??? (answer at the end)
Also she felt some pain around the surgery area, which she don't have be4 the treatment, and end up the Dr. said that's from the Liver, but that normal from the IMRT???
So this time the Dr. gave her 30 Tablets Apo-Dimenhydrinate and 10 tablets of Ondansetronfor the nausea, 60 tablets combizym for the lost of appetite, then 14 tablets Arcoxia for the pain, and with the consultation fee total $165 USD.
Seems like she felt much better for the passed 2 days....
now 1 box of GSK Ondansetron 10 tablets from local drug store... $205 USD!!!!
I feel like Im a stupid now...
sorry for late update, been busy with taking my wife to hospital everyday for the IMRT and start packing for moving... yes we moving next week to another apartment (that's becoz of Chinese thing called "Fung Shui") and hope that will help my wife recovery
well Day 6 today, no need the IMRT just Xeloda for today and tomorrow.
She felt nausea and headache from day 1 after taking the Xeloda.. so start from day 3 she took Zolman and that help a bid.
She usually have that IMRT around 5-6pm and seems like everytime she get on the car after that she fall asleep. other than that she felt pain again at where she did surgery. But the Dr. said that's normal and ask us to keep on going until the next Friday for reassessment.
She sure loss appetite since the surgery, and now even worst. she only can eat 1/3 of what she can be4 surgery, and her weight drop to 100lbs, ive already force her to drink "Supportan" between meals so that her weight can hold above 100lbs.
I really worry that can she make it through this 5 weeks treatment.
Hi Terri and Dylan, welcome to the group.. I'm new here as well.. sorry we have to meet here.. I don't have much information can share since I'm still learning as well... but I can share my personal feeling as a patient's husband.
Somehow I think that's our destiny that my wife got this type of cancer.. (that's totally change our point of view in life and life style) and we cannot do anything to change that.. so we decided to do whatever the doctor said; surgery, chemo, RT... try our best to cure, to lower the chance of recurrence, and to make her life last as long as she could....
And on the other hand, we live everyday as the last day. tell her jokes.. make her meals (I never walk into the kitchen be4 she got this cancer)... take her for walks.. comfort her in anyway...
I still think that we are luckier than those who got in accident and never get the chance to did say or do what they want to their love ones be4 they gone... we do have the time and chance! Although it might be tough on this journey...
BTW whats Y90??
Hi everyone, (is this the right place to post?? if not please let me know)
just to give a little update on my wife treatment.
She took 3 Xeloda (500mg) right after breakfast... seems everything find.
Then 6pm (due to full booking, might change to noon next week) we went to hospital and she did the IMRT. only took like 10min for her to walk in and out of that huge door.
we arrived home around 7pm and she said shes tired and went to took a nap.
8:30pm she woke up and we have dinner.. she ate only half of normally did..
After dinner around 9pm she start feeling nausea and vomit. but she said she felt much better and took the night pills 2 (500mg) and went to bed at 10pm.
conclusion for day1 : Xeloda seems ok for her.. she didn't feel weird, but after IMRT she looks tired and felt nausea.
lets see what happen on day 2.
Im so sorry to hear the update about your sister in law and the change in her condition. But as Bonnie said "make the best of everyday" is the most important now.
Hi Andra, I totally understand how u feel.... your government Hospital situation almost same as what happened to my wife...
She 1st diagnosed with CC at Government hospital... they did CT scan and ERCP to place stent to relieve symptoms in 3 days then 2 days later, they ask her to go home and wait 1week to see specialist.
1 week later when we see the specialist, he said they need to have the PET scan (which we need to pay for) before they can do anything, so he ask us to do that and come back next week.
So I ask him let say if we have the Scan and most likely what will you do.. then he said surgery if the scan is clear and only CC and did not metastasized... (but if scan shows the cancer has metastasized then they just give her the time frame and they might not to do the surgery)
then I ask how long do I have to wait for surgery if the scan is good... he said 5-6 weeks. So that means total of 8 weeks since the day she diagnosed CC to the day she can do the surgery...??? I really don't want to wait and cannot take the chance to let it metastasize.. so I went to private and have the surgery done in 3 days after that meeting with government specialist.
Yes it cost more than a year of my salary for that surgery, but somehow I think it worth it... she cut out half of her liver and she can leave hospital in 5 days... (I read some local forum ppl said usually half liver surgery at least 2-3weeks stay at hospital)
PCL1029: so u can read and write Chinese?? try this http://www.discuss.com.hk/forumdisplay.php?fid=855
eli: thanks for your advise.. I asked Dr. Chow and the Government Dr.the same question (do RT private and Chemo at government), but they both rejected and said who will be responsible if anything happen...
about those Dr. that involved im not sure should I put their full name up here.. but Ill just leave their last name here...
Dr Chow is the oncologist that suggest the IMRT+Xeloda , she was saying if GEM/CIS can lower the recurrence chance by 10-30%, then IMRT+Xeloda should be around 40-60%.
I understand those numbers is kind of BS, but at least we don't need to be regret if its recurrence when we did try our best.
also why we chose Dr Chow is becoz she refer by the Dr. we really trust, a private Dr. in HK that don't have the $ in her eyes!!! she treat her patient as a friend, she did this HUGE surgery to my wife and my wife can leave hospital in 5days!!! she so amazing!!! Dr. B Chik!!!
well the worst part about HK government hospital Dr. is everything they need to go by the book and policy, they wont tell u more than what they can do there.. so they will kind of give u hint about there "might be" something better out there... that's means they think out there might be better if u can effort, or they will say there are no different compare to private. then u know u don't need to waste your time and money.( that's what a relative whos a Dr. works at Government Hospital said)
well yes its really tough to start a forum like this in China. but other than China I think should be easy for u to do so. Hong Kong, Taiwan and Singapore should be good to start with. people from these country should be able to speak or read simply English.
About my wife's tumor, after the resection the report like this:
Moderately differentiated adenocarcinoma of common bile duct, with maximal tumor dimension 25mm
Gallbladder with features of chronic cholecystitis
upper end of common bile duct involved by tumor
tumor invading the periductal soft tissue and liver parenchyma
5 out of 7 hilar lymph nodes with metastases
lymphovascular permeation identified
clear resection margins
o Hi PCL1029: so u also from HK!!! nice meeting u!! well u know we cannot choose Dr. at Government Hospital.. isn't it???
Thanks everyone for the warm welcome... i'm back with my 3rd opinion..
This Dr. seems kind of soft and not really aggressive.. he just prefer to use Gemcitabine and oxaliplatin for Chemo.. then after 10-15min talks about it and I finally raise up about RT then he start saying its better with RT only if u can effort.... he even said Gemcitabine and Cisplatin is good option other than the side effect is a bid more than Gemcitabine and oxaliplatin...
so we decided to use the 2nd opinion... IMRT with Xeloda.... although nobody can tell is that the best idea.. but what we felt is we rather try the aggressive way instead of just seat and wait.
Thanks PCL1029: yes Queen Mary is the best Government Hospital in HK and that's where I got my 1st opinion. but the problem is they also didn't got enough statistics information that prove other medicine/treatment will work on CC, so they cannot give anything other than Gemcitabine and Cisplatin, that's why the professor kind of suggested us to go get 2nd opinion from private (she said im not saying the Gemcitabine and Cisplatin are useless or outdated, but there might be something better or newer out there). some other cancer like bowel cancer, Breast Cancer they will let u choose either pay on your own to buy better medicine/treatment or free for the standard.
Thanks Randi and Lainy,
the 1st opinion is from HK government hospital. due to the lack of statistics information that prove other medicine will work on CC, they will only provide this GP treatment to those who want to try using it as adjuvant.
the 2nd opinion is from private Dr. who think we should be more aggressive, which should try IMRT to those lymph nodes around the liver area, the Dr. thinks that's the most likely place those cells still hiding.. then Xeloda should be a much better Chemo with lower side effects...
Dr said if the GP can give u 10-30% chance to clear the cancer cells, the aggressive treatment can give u up to 50-60% chance. but the price will be around 40K USD.
Ill be seeing another Dr. tomorrow to get 3rd opinion, lets see what will he say, and Ill keep you guys update.
My name is Hugh, im really happy to see there is such group here which really helps and can see some positive things other than those Ive been searching..
My wife Joe age 43 diagnosis CC on the 25th April 2013, due to stomach pain (for almost a month) and on that day her face and eyes turns yellow so we rush her to hospital and the out come for sure everyone here should knows...
lucky thing is she did surgery on 10th May, which took out half of her liver, bile duct and some lymph nodes around that area... result seems to been pretty fine and she came out of hospital in 5 days after the surgery..
now she still resting at home, her body weight seems to go up and down after her surgery.. the day arrived home at 102lbs.. then up to 112lbs in 10 days... but for the last 5 days she drops back to 104lbs... I know she need to keep her weight up for the next battle.. but somehow she didn't keep up and the Dr said that's normal after surgery...
she did a Pet scan 2 days ago.. it also seems pretty good that no other place got infected other than those place which did surgery got some kind of signal and that the Dr. already told me it will happen be4 the scan
My question is there are 2 ways of adjuvant treatment from 2 different Dr. I consult. which one should I choose...
1. GP which is Gemcitabine and Cisplatin for 3 weeks treatment total of 6 treatments (which is totally free through government hospital)
2. IMRT with Xeloda for 5 days a week total of 5 weeks treatment and then if possible 3 more 3weeks treatment of Xeloda and Oxaliplatin for preventive.
this sounds more aggressive and for sure this I have to pay massive amount which is not cover by government nor insurance.