Everything has changed
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Hi Donna,
Welcome to the site. Sorry that you had to find us all but am glad that you’ve joined in here as I know that you will get a ton of support and help from everyone.
Yep, information overload. We’ve all been through that and it is tough trying to take so much in in such a short period of time. Especially as what we are hearing is new to us and is not what we want to be hearing. My head was spinning after my dads diagnosis trying to take all of this info in, but the more that you learn the better informed you will be and that will help you when it comes to making decisions.
I don’t know if you have seen this board, but we have a board on nutrition and you can find it here –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=12
I am sure that you will find a lot of good info posted there by our members, as you will on all of the boards! And if we can help in anyway at all then please just ask away and we will do what we can to help.
Best wishes,
Gavin
Hi Donna,
I just wanted to welcome you to this site. I do not have cc, but my 26 year old daughter, Lauren does. She was diagnosed last August. She has been on chemo since then, Gem/Cis and 5-FU. She has had a lot of shrinkage with her tumors and her large tumor is 50% necrotic. She just had a trial run for Theraspheres, which are tiny glass beads filled with radiation that are shot directly into the tumor. We will find out soon if she is a candidate for this procedure. If it works, she may be able to have a resection. At first, we were told her cancer was too far along and her chemo would only be palliative, so they are thrilled with her progress and we are hopeful for the future. She had never been sick before either. This just came out of the blue. Everyone always tells us we are so strong too, but what other way is there to be. You gotta go on living your life and face whatever comes your way. We are all here to help. Bless you.
Love, -Pam
Wow this is exciting to have people who totally understand what I am going through. I was diagnosed in March of this year. And went to Moffitt Cancer Center in Tampa Florida. I haven’t really asked for a prognosis just about treatment. The cancer was originally found in my esophagus and in some of my lymph nodes and then when the staining of the biopsies were done they told me it was cholangiocarcinoma. I am on two chemo medicines : Carboplatin and Gemcitabine. After the first treatment I had severe pain in abdomen that was under control after the first 24 hrs. Surgery and radiation was ruled out in the beginning since it had spread to other areas.
Everyone tells me that I am this strong person but I do not feel strong. I have never been sick and this is just so hard to wrap my head around and be tough. (I keep thinking, well if I felt good it would be easier). Anyway thank you for responding and encouraging.Donna:
Welcome to the site that no one really wants to join! Feel free to post questions, rant and rave, etc. That is why we are here. My husband Tom also had CC and just passed away 5 months aog.
I have a lot of knowledge about Insurance as I work for a major insurance company and also have ton’s of knowledge based on what my husband went through.
All you have to do is ask!
Hugs and a tidal wave of suport coming your way.
Margaret
Donna-Welcome and sorry you had to find us. I am a CC survivor, there is HOPE!! I will be 3 years cancer free on May 24, 2012!! I have an amazing story to share which you can find on my FB page (Catherine Sims Dunnagan) or at thetelegraph.com under christmas miracle.
I wa diagnosed July 31, 2008 and was 52 years old and just itchy, that was the day my new “normal” began.
I am alive because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Please make sure you have the best doctors, that is very important because our cancer is so rare that they are limited.
I wouldn’t worry about eating the “right foods” so much as making sure you eat and keep your strength up. I look forward to hearing more of your story.
Lots of prayers and HOPE-CathyHi,
I am only a patient of this disease for 35months.
Like our Lainy answered in another message for another member said.
some like to be open and discuss their cases here,seeking medical as well as emotional support;others prefer not to do so but just listening or comparing their cases to other members who have or had the similiar situation.
But if you would like more information ,you are welcome to ask questions and we will answer to the best that we know how.
Yes ,there are a lot of information;but one thing can help you HERE through this web site is asking questions specific to your needs.
Are yours intra or extra-hepatic cholangiocarcinoma?
When you were diagnosis(March of this year?) and what chemotherapy you are on?
do you have any specific questions about the scans or the stage of your disease?
did you also consult radiation oncologist to seek other options?
And where you have been treated?
47 years is too young to just concentrate on “cancer diet” as plan of treatment.
So, if when you are ready,we will too.
God bless.Hello Donna and welcome to our extraordinary family but sorry you had to join us.
I am a believer that you can eat what you want, within reason. My husband never had chemo but when he was not eating well I substituted Carnation Instant Breakfast as it has all the nutrients you need to replace a meal. I would blend a banana in the Vanilla one and Teddy loved that. The other thing is to just graze during the day and don’t try to sit down to a big meal. I know sometimes it is just overwhelming to look at a plate full of food. Do you mind telling us where you are being treated and where is the CC? You have a wonderful attitude and I hope your normal is right around the corner! Please keep us posted as we all really care.Hi, My name is Donna and I am 47. I recently was diagnosed with cc and have started my first cycle of chemo therapy. It is amazing how much information I have received in such a short period of time….information overload. Now I am trying to concentrate on nutrition which is difficult one because of all the different “Cancer Diets” and two because everything taste horrible if you’re hungry in the first place. I found out on March 23rd and haven’t felt or had a normal day since then. I have a strong faith and I know that God will carry me through this but I so can’t wait for normal again.
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