1

(0 replies, posted in Members' Cafe)

I tried to change my picture and it changed in my profile but not on my postings. Anyone have an idea why? Could Teddy be doing this because he likes the picture already on the posts!!!!  LOL

2

(4 replies, posted in General Discussion)

Dear Anne, yes, everyone has a chance and the fact they are doing First Line Chemo, Gem/Cis is a good thing as if they can shrink the tumor then surgery becomes a possibility. And First Line chemo is just that meaning if it does not work he can then try something else. He will get his energy back after chemo, takes a while but it will happen. I always say it is best to be realistically optimistic!
Organic foods or not we just do not know enough about this monster. We do know of a parasite in Asia in certain fish and how do we know it has not reached our shores. You can google it and it is called Live Flukes. Very interesting. I am sure that is what caused my husband's CC. He served in Korea and being a good Sicilian he would eat anything, especially fish! The parasite lives in the intestines for up to 45 years, leaves and leave behind Liver Flukes and all is totally undetected until almost too late. I actually asked my Grandchildren to stop eating Sushi and I will not eat any fish but home grown.
Looking forward to a good scan!

3

(4 replies, posted in General Discussion)

Dear Spedo, welcome to our remarkable family and I am sorry about your Husband's diagnosis.
I checked and while your profile shows 2 posts there is only this one so I assume you deleted it. It doesn't matter how long a post is, they are always long in the beginning as there is much to tell. Can you tell us your husbands age and where he is being treated? What kind of treatment is he having?  It is true that Surgeons cannot really tell what is going on inside until they see it. Have you thought about a 2nd opinion? We believe heavily in 2nd and 3rd opinions. Below is a site you may find helpful and please keep us informed as to how hubby is doing as we truly care.

http://cholangiocarcinoma.org/newly-dx/

Ah, now I understand more! Your Dad is young yet. We are here for you so no need to apologize for length of post. I don't believe we have ever kicked anyone off! lol
Also relieved to read that Dad has a good "team" around him as that is the only way to beat this CC down.
Teddy had tried quite a few Nutritional drinks and landed on Carnation Instant Breakfast in Vanilla flavor and I would blend in a banana. Carnation was the one Home Hospice recommended and he really liked it. Good luck to dad tomorrow and I hope he gets his new stent and in a few days you could see a good change for the better.

Hello, Monica and welcome to our remarkable family and the best place to be for CC support, as you have already seen.
I am wondering your Dad's age and where he is being treated.
I am not sure about the time frame that Chemo does not work but I do know it is time to get a 2nd opinion. Sometimes Diagnosis takes a while but NOT 10 months. We are big believers in 2nd and 3rd opinions and I do feel it is time. The infected port could also be playing a part in his discomfort.
There are things they can do to help Dad feel better. Meds for Nausea, not eating meds and Nutritional drinks and meds for pain. Sorry, I just don't get the feeling that where he is being treated is doing all they can so I hope they have a lot of experience with CC.
Below is a site that you may find helpful and please keep us informed of Dad's progress.


http://cholangiocarcinoma.org/newly-dx/

6

(6 replies, posted in Good News / What's Working)

Wow, keep the good news coming and tell hubby to keep on biking! Wonderfull to wake up to this kind of news. YIPPEE!

Hello, Steve and welcome to our remarkable family and the best place to be for CC support but also sorry you have to find us.
Sounds like the route my husband took. He was 73, had an aborted Whipple then the real deal again 3 weeks later. This was 10 years ago and it did buy us 5 years. At that time the Docs said they would not do Chemo and Teddy chose quality over quantity as well. When the CC returned he had Cyber Knife and then it retuned again always to the same place. To Chemo or not has become a very personal decision and all I can attest to is that we never regretted any of our decisions.
Teddy used to ask the ONC what he would advise if he was the ONC's father. He then always went with the ONC's decision. 
Dana Farber has treated CC patients so pretty experienced with CC and it would not hurt to also get another opinion from them as to what they would do.
Below is a site you may find helpful and please do keep us in your loop with news of Carol's progress.
BTW, friends and family mean well and perhaps they can do some things like shop for Carol, household things etc, Since I am somewhat of a control freak I rather do things myself but I did the following: Made a list of all family and friends emails and instead of numerous phone calls day and night I let them all know I would send an email almost daily so they would know what is happening. I told them I appreciated their calls but it was too much to handle and they really liked the emails which also lifted the calls for us.

http://cholangiocarcinoma.org/newly-dx/

Dear Allan, welcome to our remarkable family along with your fantastic attitude! WOW! You are a brightly shining star. I know we have had one or two members from NZ and if you go to the top of page to our search engine and type in New Zealand posts from them will pop up. I think one could say "Life is for the living" no matter how it is done. What a Miracle that your tumors have stabilized, you just never know which is why we don't listen to statistics either. So, you go on filling your bucket full of good things and please do keep us informed of your progress.

Dear Steph, I am very sorry about your Daughter's problems and I know it can drain your strength physically and mentally! I know what you mean about other health problems as well as I am right behind you in age at a young 75! Another thing in common is that my Sister, when she was 16 was DX with  scoliosis and went to Mayo in Minn. where they broke her back bones and reset them using shin bones. They put her in a body cast for 9 months. She is now 67 and has never had a problem with her back since. They always felt she got the S from when she had polio virus at the age of 2.
I am sure the Doctors will figure out something. The only advice I can offer is to try very hard to take it one day at a time. Feel free to let it all out here, that is what we are here for and I know you will hear from others soon but weekends are a little slow.
You never know how strong you are until "strong" is the only choice you have!

P.S. Please let all your Doctors know about the supplements you are on.

10

(8 replies, posted in Introductions!)

Hello. Karen and welcome to the best place to be for CC support which includes our remarkable  family.
YES, we have quiet a few members from Australia. Try using our search button at the top and type in Australia and see if posts pop up. They do watch this Board so  hopefully some will be coming along with more information for you.
Below is a site you might find helpful and please keep us updated on your husband as we really care! Below is a site you may find helpful:

http://cholangiocarcinoma.org/newly-dx/

Dear Aiminy, welcome to our remarkable family and the best place to be for CC support. There are some fine Doctors in China but you really don't want to hear that they are giving up without telling you why. My husband was 73 when DX and he not only had an aborted Whipped but 3 weeks later he had the real deal. I would ask why they are not considering treatment, you have a right to know.
As for the Boston area both Mass. General and Dana Farber have treated CC and we have some members who have gone there. If you use our search button above and type in either hospital  posts will appear from members who were treated there.
Below is a site you may find helpful and please do keep us posted on your Father's progress as we are a curious and caring family.

http://cholangiocarcinoma.org/newly-dx/

Dear Stephany, welcome to our remarkable family and the best place to be for CC support. My husband was 73 when first DX and he in fact did have a Whipple. I know that it is very scary right now but when a treatment begins your fright will turn to fight. You do have good Hospital right in your area. One is Dana Farber and they had treated some of our members.
If you go to our search engine at the top of the page and type in Dana Farber many posts should appear on the subject.
You are so right to search out the best "Team" as many have still not heard of this CC.
Also my husband's was in the same area, Distal, but did not enter the Pancreas .  Below is a site you may find helpful and please do let us know how you are getting along as we truly care.

http://cholangiocarcinoma.org/newly-dx/

13

(15 replies, posted in Introductions!)

Hi, Daisy. So good to see you and thanks for the information. Hope everything is good in your neck of the woods. I love it when I see "old" members visit the Board,

Diego, Gem/Cis is usually the first line of treatment. You are at a good hospital and I Pray and hope this chemo cocktail helps. When I hear of anyone say, under 50 it always blows me away and one has to wonder HOW???? When my husband had CC it was 10 years ago and I can honestly say things have improved as far as treatment. I know that others will be coming along to welcome you and you are now part of our remarkable family.

Dear Diego and Carmen, welcome to the best place to be for CC support although I am truly sorry you had to find us.
Did the ONC tell you what stage Carmen is at and what here his suggestions for treatment. We have had many members in the same situation and at Stage IV and with Chemo they were able to bring the tumor down and have a successful surgery.
We do not listen to statistics as everyone is different  and reacts different to treatments.
What is Carmen's age and where is she being treated. Please know that knowledge is extremely important in treating CC and the best way to attack it. The other important thing is to try real hard to have a positive attitude and a sense of humor does not hurt a thing. I understand that right now you have been hit in the gut with a baseball bat but I promise you that once treatment  begins the fright will turn to fight.
We are also big believers in 2nd and 3rd opinions as different eyes see different things.
Below is a site that may be of value to you and please do keep us informed of Carmen's progress.
You never know how strong you are until "strong" is the only choice you have!

http://cholangiocarcinoma.org/newly-dx/

16

(6 replies, posted in General Discussion)

Dear HOPE, your name says it all! Got to keep hoping or like I say must remain optimistically realistic! We have had members who were Diagnosed at Stage IV with no hope for surgery and then the right team of Doctors got the tumor reduced in size enough to have surgery. If you feel like the Doctors are giving up ASK them and see if you can switch to another team. 2nd and 3rd opinions are very important! Below is a site you may find helpful and please keep us updated on your Father's progress. Be very strong!

http://cholangiocarcinoma.org/newly-dx/

Ah, gee, thanks Susie. SO good to see your smiling face, how are you?????? You all think I am not selfish?? Being pretty much home bound for 4 years from Colitis this site really saved me from house arrest! Getting along pretty good as I am in my 3rd month colon free! It seems I may have developed a Hernia under the incision and the Urologist has ordered a CT Scan and I may also have what they call a dropped floor!!!! Never heard that expression before. My answer was "well at least the roof has not caved in yet!"
Interesting....went to an Ostomate meeting Sunday and apparently 50% of Colectomy patients get hernias!! I remember Teddy had 2 golf ball sized ones after his Whipple but they didn't want to do more surgery on him.
BTW any of you know how much an Colon weighs? Of course I asked as I wanted to know how much weight I lost was Colon. Ready for it?'''''''''''''''''''''''''''''''''''''''''''''''''''2 LBS. Boy, the stuff we have all learned!

18

(15 replies, posted in Introductions!)

Michael the very best RX is being positive and throwing in a sense of humor, I know it gets one far.
BTW, I want you to know that we have quite a few members who were DX at Stage IV and after various treatments (everyone is different) were able to have surgery, which is the best news we can get. Hang in, hang on and be strong.

19

(15 replies, posted in Introductions!)

Dear Michael and son Gavin, welcome to our remarkable family and the best place to be for CC support. It sounds like you have been dealt a double whammy! As if one is not enough! Please do not forget that we believe very heavily on 2nd and 3rd even 4th opinions. So do not be shy about it.
Read up as much as you can as knowledge is our best tool for fighting this CC. Below are some sites that you may find helpful. Please keep us updated on your progress as we truly care.

http://cholangiocarcinoma.org/newly-dx/

Yeh, well, you have not visited here yet!!!!!!

Dear Michael, I wish I didn't have to welcome you here but am glad you found us. Welcome to the best place to be for CC support and sorry for your Mother's roller coaster ride that no one wishes to take. You have done all the right things and especially in getting other opinions. To chemo or not is one of the biggest questions we have and it is a very personal decision but sounds like the 'TEAM" wants to get the drainage under control first. My husband also had biliary drainage after his Whipple surgery and wore an external drainage bag.
CC is very stubborn and unfortunately very smart and many times returns to the same place which is what happened to Teddy. May I ask how old your Mother is?   
Below is a site you may find helpful and please do keep us informed of Mom's progress as we truly care.

http://cholangiocarcinoma.org/newly-dx/

Katia, it is so good to read that your Dad is such a GOOD RESPONDER! He has a ton of fight and spunk in his, Bless him! Also glad to read about the Hospital as I am sure that will help others in the surrounding areas. Praying for the treatment to work and of course for your Family!

I say keep the record climbing until you find the right treatment and when you find that magic potent it will bring hope to everyone! Good luck on this one!

24

(6 replies, posted in Members' Cafe)

Oh, Duke what beautifully romantic event and with lots of family members. I can't wait to see the pictures. That is just wonderful. Congratulations to you that Aimee said YES again!!!!

25

(15 replies, posted in General Discussion)

Hey, Cuz, so excellent to see you on here tonight! You made my day!!!