jathy1125
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I am so sorry for your loss, my heart and prayers go out for you and your family. Thanks for sharing your Dad’s story.
CathyEileen-I am sorry about your son, I am not familiar with your son’s story. I am a CC survivor due to a liver transplant, so I am really interested in what is happenning. I would appreciate knowing more if you have time to share.
I hope Dr. Javle is a help, people post great things about him. My hero is Dr. William Chapman at Barnes-Jewish Hospital.
Lots of prayers for your family and son-CathyPercy-what exactly is the “false hope” I could only read the intro page and it seemed to say what we all know that transplant with chemo and radiation, if a possibility is our best chance to be considerd cure. I am curious what it said.
Thanks-CathyI also tried to read it, and it ended right when it was going to tell me my chances!!! LOL! I guess I will just leave it to God!!
Lots of prayers for our CC family-CathyWOW-still have a hard time believing that all this was/is a part of my life and then to read you are one of 287 people in this study!!
Thanks for the post Marion and thank God for dropping me in Dr. Chapmans hands!
Lots of prayers and HOPE for our CC family-CathyPercy-Great positive story!! Malcom-many congrats, keep posting and giving our CC family HOPE!! I love the quote about “I can’t wait till they lose interest”, such a simple goal!!!
CathyMymom-I am a CC survivor due to a transplant. I did not have twice a day radiation and my clinical trial was the Mayo trial, in fact my doctor (Dr. William Chapman) helped develop it. I am so excited your mom qualifies for this trial. I will repeat, be prepared to be pretty fatigued at the end, during the six weeks of radiation it was OK, but a few days after it hit me like a ton of bricks!!
Lots of prayers-CathyMymom-I took XELODA for 5 months while waiting for transplant, I had no side effects. I did receive a weekly phone call from the Xeloda company nurse.
I also had radiation with a 5FU pump prior, for 6 weeks with no major side effects. I did become extremely tired at the end of treatments, just competely wiped out, I just climbed in my recliner and stayed there for a while.
Lots of prayers and HOPE-CathyWOW-waiting is something we shouldn’t have to add to our stress level, but…
The first thing my doctor told us was “It will come back a false negative, but i know what I saw” and he was right it took almost 3 weeks to get a positive diagnosois. I am a CC survivor due to a transplant and while I did chemo and radiation I had 9 ERCP’s (about a 9 month period), they always clog, dislodge…
Lots of prayers-CathyYEA-Susie! We need more long term postings on here, keep posting the great news!
Lots of prayers for all-CathyPam-You just proved why this site is so important!! I was so excited to see Dr. Sonneday’s post, and it was so down to earth. I only knew he was a doctor because of you posting about him. He proved what a great doctor he is when he said Dr. Chapman was his hero!!! LOL!!!
Lori-so glad you are getting more opinions.
Lots of prayers for all of you-CathyWelcome-and sorry you had to find us. I am a CC survivor and I was considered terminal and inoperable, but I was lucky to be diagnosed and put in the care of one of the top doctors and that saved my life! CC is so rare and so many new treatments are developing at limited cancer facilities that doctor and hospital can make a major difference in your outcome. My miracle was at Barnes-Jewish Hospital in St. Louis MO. under the care of Dr. William Chapman. More top doctors and hospitals are Dr. Javle at MdAnderson, or our new board member Dr. Chris Sonneday. The one common thread on this site (other than CC) is being pro-active and getting second, third opinions till you find one that you are comfortable with.
Please read my story and one other CC success on my FB page (Catherine Sims Dunnagan) for HOPE!
Lots of prayers for you-CathyWelcome-Dr. Sonneday, your name has been mendtioned many times as a ray of HOPE, on this board many times! I am a CC survivor thanks to Dr. William Chapman at Barnes-Jewish in St. Louis MO. (I am sure his name is very familiar to you!!). Dr. Chapman saved my life twice, I had 2 transplants a month a part because of my hepatic artey ruputuring due to radiation damage!
Thanks for all your positive thoughts about CC and transplant as an option.
Keep posting and giving HOPE!!!
Lots o prayers and HOPE for all our CC family and Dr. Sonneday for all his great work and compassion!!-Cathy
