jathy1125
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Hi Lily I am a CC survivor and part of my treatment was the 5FU Chemo pump. The pump was connected through my port. You have a bag with pump which is either shoulder or fanny pack. It was inconvient at first but really no big deal, you get use to it. I had it for 6 weeks and the nurse changed the bag once a week. I had it during holidays andit really never showed up in the pictiures.
Lots of prayers-CathyIke-I was told after my ERCP that my bioposy would come back negative and it would be a false negative, which it did. My bioposy was sent to the Mayo Clinic for a final diagnose, I had stage four inoperable CC, just as they had predictated. My doctor was very educated about CC and that saved my life.
Keep hanging around and asking as many questions as you can!
Lots of prayers-CathyPercy- thanks for the info. I took Xeloda (8 pills twice a day ) for 5 months, with no major side effects. The Xeloda nurse called once a week and all that was arranged by my oncologist. I also had a 5FU pump 24 hours seven days a week for 6 weeks and no major side effects. All of chemo and radiation treatment was manageable with lots of naps and 3 nausea meds so I always had something in my system.
Lots of prayers for all in the figh,t we can win-CathyYea Nancy-I am doing my 6 month scan in 3 days, so if you have any thing left to cross, cross it!! I do get a little “scanphobia” as Jim calls it, but I have blood draws every month, so I cheat a little on the fear factor!!
Lots of prayers-CathyMary-Lots of prayers for you and Tom. Prayers is the one thing we can give you, in this stressfull time.-Cathy
Ike,Welcome and sorry you had to find us. I am a CC survivor and like you my only sympton was being itchy! Please read my story at thetelegraph.com under christmas miracle, it will give you HOPE!! (I also have it posted on my FB page Catherine Sims-Dunnagan. There is also another CC survivor story posted on there)
I would be very cautios about any surgery because this can cause cancer to “seed” . I would post where you are located, so people on this site can give you directions to some of the best CC doctors and hospitals. This cancer is very rare and really needs a specialist.
My miracles and heroes were Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman and the Mayo-Clinic are on the same page about treatment options, so those are 2 good choices.
Lots of prayers-CathyCharlene-Sorry about your news. I am a CC survivor because of Dr. Chapman and a 2 liver transplants. I was very blessed to be put in Dr. Chapmans care, he believes it is an acceptable method of cure for CC. I know that if Dr. Chapman doesn’t think your Dad is a candidate, he will work on “PlanB”. The man is one of the most amazing doctors you will encounter, he has a heart. He is my hero.
Please read my story at thetelegraph.com under christmas miracle, there is HOPE!!!
Lots of prayers-CathyKathy-Love your name. I am sorry you didn’t qualify for transplant. I am kind of curious about you being disqualified because of size. I was told that they didn’t care if tumor grew (which they expected to happen) just that it didn’t metasize. I am not the doctor though and Mayo is one of our best options for CC.
Lots of prayers for you-CathyI have private insurance through Blue Cross/Blue Shield and I was approved for my care. I would start by calling the toll free number on insurance card for member benefits. I can’t believe they wouldn’t cover a doctor appointment, which is all you need now to know your options. When you are accepted into a trial/treatment your doctor office will make sure you are covered, that was one of my criteria to be accepted into transplant trial.
Lots of prayers-CathyLinda- Welcome. and sorry you had to find us. I am a CC survivor!! I was 52 when I was diagnosed. I have been cancer free 2 years as of May 24, 2009. I will celebrate my 2 year anniversay of my second liver transplant July 4th!!! YEA!
My hope was a transplant. I was treated by one ot the top doctors for CC, Dr. Wiilliam Chapman at Barnes -Jewish Hospital, St.Louis MO. Dr. Chapman helped develop the Mayo CC liver transplant protocol. You might want to think about contacting him he is the most amazing man and doctor.
Please contact me if I can help. You can also read my story at thetelegraph.com under christmas miracle. There is HOPE and I am proof!! Also there is a link posted in” general discussion” for another CC success story. Marion put it up today, so look under posts.
Lots of prayers-Cathy (618-567-3247)Charlene-Welcome and sorry you had to find us. I am a CC survivor. My CC was inoperable and involved my portal vein. My miracle happenned because of a transplant. Lainy’s advice on another opinion is a great idea. I was lucky to be put in the immediate care of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Barnes is considerd a CC center and Dr.Chapman is one (or I think the best) the best in the treatment of CC. Please google him and read my story at thetelegraph.com under christmas miracle. There is hope.
Your dad will qualify for disability but you can’t apply till 5 months after diagnose. (Check with SS office on exact time period). My battle with CC required a lot of rest, he needs to save his strength for treatments.
Lots of prayers-CathyMarion-That is the one! Thanks, for posting it. Another sucess story for CC and another kudo for Dr. Chapman. I recieved an email from Siteman asking me to share my story and she said when ever she talks to Dr. Chapman about his CC transplant patients his face just lights up! He is a real hero.
CathyLainy and Marion thanks for all the kudos but I am not sure if you read the right story. There was an article put out by Siteman Center about a gentleman survivng CC by having a transplant with Dr. Chapman.( I have been asked to share my story also.) I am not sure how to post article here, I tried to “share” with Cholangio Foundation FB page but couldn’t. If either of you are on FB or know someone “friend” me and I can share with you and then you can post on site. I am just way to computer iliterate!!
CathyPeter-I am a CC survivor. I was not a candidate for resection because mine was inoperable, but I was a candidate for transplant. My miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman is one of the leading doctors for treating CC. Please read my story at thetelegraph.com under christmas miracle, there is HOPE.
I would ask about transplant. The Mayo Clinic and Barnes are both big advocates of this trial as a cure.
Lots of prayers-CathyJohanna, Attiitude is what it is all about. I am a CC survivor, I am 2 years cancer free. I am alive because of a liver transplant. My clinical trial was developed at Mayo, I was not a candidate for resection because of location, this was my only hope. My doctor is Dr. William Chapman at Barnes-Jewish in St. Louis MO. Dr. Chapman helped develop this trial. Please discuss transplant as an option, because Mayo believes in this as a cure as most doctors don’t. I am a miracle and Dr. Chapman credits Gods work before his!I was diagnosed in July 31,2008, my first question to Dr. Chapman was would I see my daughter graduate from college and he said I would, on May 9,2010 I did!! Please read my story at thetelegraph.com under Christmas miracle, it is so full of HOPE. I was told 6-8months, 2an half years ago!!!
Lots of prayers-Cathy
