dad diagnosed with cc
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PCL, actually my favorite of course was Teddy’s Sicilian self turning it into an Italian man: Angelo Carcinoma!!!! Funny thing was he thought it was correct. I never changed it, I liked his version better.
Hi,Lainy,
Thanks for you complement.It just happened that I know that reigon very well and I think my imput will be of some help to her.You never know,some day one of our member may actually provide the cure for all of us if we all keep looking and researching.
I promise I will not holdback on your guys ok Mama Lainy.Oh,I like that term,Mama Lainy very much.
Thanks again,your guys imput on this site are much valuable than you think,Esp.when we first heard about cholangiocarcinoma what?? noma?
God bless you ,Lainy.PCL, don’t you dare holdback on us! You jump in anytime you want and that’s an order from Mama, here! You are such a wealth of information and so helpful to everyone.
Wendy: Please hang in for Dr. Gore’s answer as he is excellent according to many on our Board. I would also follow up on some of PCL’s suggestions but hopefully you will also hear from Dr. Gore as to a procedure as surgery is the best alternative if it is operable. It must be so terribly hard to be so far away at a time like this. Stay strong and please keep us posted.
Hi,Wen888,
Normally I will not join in the discussion if you have been taken care already by
our more experience members.But I think I can give you some insights on the treatment of that part of region.
1Type in mares0311 in the Goggle box on the top right hand corner of this CC web site. She is from philippines and her brother has CC and are currently in touch with me via e mails. she may give insights of finding treatment locally or aboard.
2.Hong Kong ,China was a British colony until 1997;and the Hong kong University (a government hospital)is very active in liver cancer research. I saw at least 5 posters while I attended The ASCO,2011 in June; and the filipino population there is large enough that you can ask for more details about anything who speak your language. It may be cheaper for you to get treatment than in Guangzhou ,china as most of the hospital in China are “profit oriented” and I have no comment on their treatment results. Ask the local Filipino what they will do when they get sick in Hong kong? In this way you will get more info. Of other hospitals in treating CC in Hong Kong(there are lots of hospitals there,for the rich as well as for the middle class if you wanted to.( Dr.T.Yau, RC. Leung etc are from Centre for Cancer Research,University of Hong Kong,I don’t know them and you may have to google their phone number or address to start from there.)There are clinical trials for liver and/or cholangiocarcinoma in Hong kong because,as you know,from Japan to Taiwan to Hong Kong to Philippines and Thailand and India,there are lots of CC and liver cancers occur there.( I believe the cause is environmental such as diets,ie: raw seafood, the habit of eating unclean shellfish,and not up to current standard of water hygiene in general).
3.For Stage 2 ductal CC , there are a lot of treatment options even the CC is unresectable;systemic chemo therapy such as 5FU or Gemzar .In Asia they like to ise Gemzar+S1 oral formulations to treat CC ;intrabiliary radiation and therapy such as PDT or brachytherpy;SBRT and clinical trials are the current
approach.
I hope the info. helps
God bless.@Hi Lainey, im actually in US; but my dad is in Philippines.. so i talk to my sis daily.. they went to visit a local satellite office of modern cancer hospital guangzhou (from china) and they said its stage 2 and extrahepatic and my sis also mentioned its in common bile duct….I am not sure if i got the whole picture on diagnosis…The doctor recommended local chemo (which they say wont affect other organs) and bio immunization and we have to go to Guangzhou, China for 30days.. We also sent his results to Fuda cancer hospital also in guangzhou but still awaiting for their recommended treatment.. Do you have members who are in Asia and any place they went to have their treatment?
On my end here, I saw Dr Gregory Gores from Mayo-Rochester from the web and sent my dad’s result just to inquire about treatment options so I am waiting what they say…
Right now, we havent decided or know what is the best option.. I also know we couldnt wait too long as the earlier we treat, the better..
@Gavin, Thank you for sharing… you are right, it just freaks you out not knowing what is happening..Take care/Wendy
Hi Wendy,
My dad used to get the chills and rigors as well quite frequently. They would just come on out of nowhere and last for a short amount of time, 15-30 minutes and when he got them he never had a temperature either. At first they sort of freaked us out quite a bit as we didn’t know what caused them, but he got used to them as he knew that when they came on they would pass just as quickly as they started.
Best wishes,
Gavin
Hello Wendy and welcome to our wonderful family but sorry you had to join us.
Sorry I am a tad late here, just got back from a road trip with my Grandson.
When my husband got the chills along with a high fever it meant an infection and we always ended up at the Hospital for a strong anti biotic. I would cover him with blankets and a heating pad but nothing helped much until they started the anti biotic.
May I ask what his actual diagnosis is and where is he being treated?
You are in the right place here and will meet many amazing people.Wendy….yes, if temperature is accompanied by chills then you would want to contact the physician.
All my best wishes,
MarionThanks Marion — noted…
I have also searched on “chills” and from what i understood, if it involves elevated temperature then it means infection ??So thankful for this site..
Regards/WendyThanks Maria and Gavin for sharing your information… My dad was asked to do additional bloodworks from one of the hospital we inquired..
My dad had chills last night but is ok now.. Is that a normal symptom?Take care/Wendy
Hi Wendy,
The stent will allow the bile to start flowing again so should help in relieving the jaundice and the yellowing of the skin and eyes etc. A plastic stent can be removed if it starts to clog up with bile and sludge again, whereas a metal stent is seen as permanent. Plastic stents clog up easier than metal ones do and tend to do this after 3 months or so and metal ones seem to last longer, around 12 months onwards before they start to clog. A sign that the stent could be clogging up could be a fever or temperature or pain in the area of the stent and should that happen then I would recommend that you get your dad seen by his GP as soon as possible.
PDT (Photodynaimic Therapy) is basically a procedure that involves using a laser and a light-sensitive drug to attempt to destroy cancerous cells and the tumour. My dad had that procedure done but it is not commonly used, and I wrote quite a bit about his experiences with it here on the site and you can search for my posts on this if you like. Here is a link that goes into more detail on PDT.
Hope some of that helps. Any more questions then just ask away.
My best wishes to you and your dad,
Gavin
@Maria – thank you, i will check that out.. Its difficult and confusing on what to do.. what is your treatment plan?
@Gavin – from the report, its a 10cm french 10 stent inserted (plastic).. which is better- plastic or metal? We dont know yet what treatment option.. How is PDT?I hope both of you are well.. Take care and I will keep in touch, thanks again…
Hi Wendy,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad. But I am glad that you have joined us all and you have come to the right place, and you will get a ton of support from all of us here. The yellowiong of the skin was the first symptom that my dad showed as well, along with the yellowing of the eyes and the dreaded itching. His GP saw this and sent my dad to the hospital where they then did all the tests and scans etc, then over 3 weeks later they diagnosed him with inoperable CC. He too had a stent inserted, a metal one and he had PDT as his treatment. What type of stent did your dad have inserted, a plastic one or a metal one?
Here are some links regarding food and nutrition that may be of use to you. I just posted this one –
http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Eatingwell/Eatingwell.aspx
And we have a great section here on the site all about nutrition here –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=12
Please feel free to ask any questions that you have and we will all do what we can to help in answering them. We are not doctors but we know what you are going through and we care. Please let us know how your dad gets on.
My best wishes to you and your dad,
Gavin
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