lisa
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Sue, I am so very sorry for your loss of Ray. Thank you for taking the time to share your story with us. I am glad that you had quality time with Ray before he passed on to Heaven.
I also have painless cc, so your words are encouraging.
My love and prayers are with you as well.
God bless,
LisaI’ve only been to the South once, but I loved that sweet tea! YUM!
I hope you enjoy your time in SC. Get a tan for me, eh?
Hi Michelle,
I’m another one like a few of us here who have this cancer and have children still living at home with us. It helps to be totally honest with the kids, as I’m sure you know. I don’t know any ideas about the fatigue – I’ve been struggling with it myself for over a year now. I guess you just get used to it and go to be early. At least that’s what I do.As Lainy likes to say, welcome to the club that no one wants to be a part of. This is the best site on the Internet for support and information about cholangiocarcinoma. I know, I’ve looked.
Use the search function at the top to get information and experiences about this disease.
I’m so sorry about your grandmother. You will find a lot of people here who care.
Lissa,
I will add your husband to my prayers. I’m so sorry that you both have to confront this monster cancer. Thank God you have each other and your wonderful family! Everyday I pray for all of us who post on this board.2Co 4:16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.
2Co 4:17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison,
2Co 4:18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.I am also on Gemzar/Xeloda with a two week on, one week off schedule. My tumor shrunk 50% in the first few months, but now things have stablized over the past year. It’s hard to say what the most effective treatment is, as people vary in their response to the chemo. There is a lot of trial and error involved, which is hard to accept when you’re fighting for your life.
I think it’s critical to make the connection with Vietnam & Korea vets and cc. Then they can be screened for this deadly disease, and hopefully catch it before it’s too late.
Lissa,
I was in excellent shape before cc, and fell out of the habit of excercising after I got sick. Well, the fact that I was very sick might have had something to do with that!I’m feeling well now, and am starting to excercise again – just short walks to get my body moving and into the fresh air. I’m still working, so I go at lunch while I still have a little energy left.
My doctors all say – keep moving!
God bless,
LisaHi Kerry,
My story is very much like Suzanne’s, except my failed resection was in March 08.I had a Power Picc line in for a year. Be careful with that – mine became the source of infections after a few months until it landed me in the hospital for a week with sepsis.
I just had a port-a-cath inserted last week, and they say this will be much safer.
Like Lainy says, there are so many different reactions to cc and the drugs and chemo. Just keep hanging in there until you find one that works for you!
God bless,
LisaHi Judy,
I am also working full time 15 months past diagnosis. I have to work due to single parenthood and insurance issues, but am feeling pretty good except for fatigue (of course).
I’m back on Gemzar/Xeloda after a month off. My treatment is two weeks on and one week off. I had sepsis in early September do to a power picc line becoming infected. We got the power picc out and a portacath in, so I’m looking forward to fewer infections.
My daughter and I went to Lourdes, France for 10 days last summer. It was fantastic. I’d also like to go back to Europe someday, particularly Rome.Welcome, Barb. There are a lot of caretakers here that are in your situation that can give you excellent advice.
I’m a patient, so I am not the best person to advise you.
off subject:
Say, you aren’t too far from where I live. I’ve been to Kelowna. What a beautiful area. I’m a big hockey fan (Everett Silvertips) and love Kyle Beach.This is such a strange cancer. My CA19-9 levels were normal when I was at my sickest last year.
However, my bilirubin counts were off the charts.
Go figure.
