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Nancy, Congrats to one 5 yearer from another 5 yearer!! We need a new category on this site for 5 plus CC members!! Your news is so exciting because you are battling one of the hardest forms of CC!
Keep inspiring and giving HOPE!!!
Julie, I post my story on every wall, page... not because I want to talk about me, but because I had a miracle surgeon!! Dr. William Chapman is beyond words,!! I am excited to say he has changed at least four of our CC's family diagnose from inoperable/pallative/hospice to operable! For me that is exciting because my donors saving my life with the gift of life, just added at least 4 more lives to there gift of one liver!!!
I have never seen Dr. Lombardo's name on here, but 6 years ago no one really knew who Dr. Chapman was or where Barnes was (Barnes is usually in top10 hopsitals!).!! Dr, Chapman and I have always talked about the fact transplants and resections need to be ruled out by doctors who believe it is an option for our cancer, way to many think it isn't!!
Thanks for putting a new name for HOPE out there!!
Joe, I can best answer your question by telling you about 4 CC members, who were diagnosed at major cancer centers and given a "no hope" prognosis and thanks to our site and being able to share my story they came to see my "HERO" and had there prognosis changed and were deemed operable, 3 had resections and one had a transplant. (Mayo Clinic told him he wasn't able to be transplanted).
Our cancer is so rare, and most doctors haven't heard of it and don't realize there is cutting edge research being done. It is so important to have a doctor who is at the top of his game in CC,. a GREAT oncologist will be that or a GREAT oncologist will know this is out of there league and find you that GREAT oncologist and team of doctors!!
Lots of prayers for HOPE-Cathy
Joe, Welcome and sorry you had to find us! I am excited to be the first to reply, because I am a CC survivor, 5 years cancer free, there is HOPE!!! First take comfort in the fact your doctor was so knowledgeable to not accept a negative report, CC often comes back negative and a less educated doctor would have accepted it!.
The next step after talking to your doctors, is think about getting a second opinion. Our cancer is so rare that you need a doctor that has treated CC and is open to all options and knows what trials are out there. A second opinion will validate what you already know or will have a better prognosis..
My hero is Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO., Dr. Javle at MD Anderson is another miracle worker you will read about on this site and another and the Cleveland Clinic in Ohio has a surgeon Dr. John Feng (Might have his name wrong). These are all great doctors that have really brought a lot of HOPE, care, and positive results to many of our CC family.
I have an amazing story to share and keep it posted at www.catherinedunnagan.com I was diagnosed 6 years ago and there wasn't a lot of positive post being written, but in that short time, so many people are posting amazing and positive options and treatments!!
Please feel free to email or call if I can help or you just want to talk. (618-567-3247)
Lots of prayers for healing and HOPE!! Cathy
Jim, Welcome and sorry you had to find us. I am excited to tell you I am 5 years cancer free form this "monster". I was considered inoperable and had 6-8 months to live, but my saving grace was being diagnosed immediately by a doctor very versed in CC and he knew right away that my only HOPE was a transplant, he immediately put me in the care of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I have an amazing story to share and keep it posted at www.catherinedunnagan.com
My best advice to you at this time is to make sure your doctor is very versed and educated in the treatment of CC, that he/she is open to transplants as an option, and even second opinions to validate his. I have shared my story enough that several have contacted Dr. Chapman and at least 4 have had there "inoperable" diagnose changed to him being able to resect and in one case even transplant (the Mayo told him he couldn't be transplanted), these fellow CC members all were at major cancer centers to begin. Read posting by "Daisy" and" Brenda on the farm" for second opinion stories I am alive today because Of God, 2 strangers and Dr. William Chapman and that is exactly how Dr. Chapman list it!!! Jim there are so many more positive stories and success stories than there was 6 years ago when I was diagnosed, there is HOPE!!!
Please contact me if I can help. (618-567-3247)
Lots of prayers for HOPE-Cathy
Hi Suzanne, Welcome and sorry you had to find us. I am excited to tell you I am 5 years cancer free!! There is HOPE!! I keep my story posted at www.catherinedunngan.com
I also did the chemo pump and side effects were minimal except major fatigue towards the end of my six week cycle (I did 7 days a week, 24 hours a day for 6 weeks, while doing radiation).
I love that you are counting your blessings, that is the key to your sanity during this time, appreciating that no matter how bad there is still light and HOPE!!
I am alive today because of God, 2 strangers, and Dr. William Chapman and the most amazing part that is exactly how Dr. Chapman would list it!!
Lots of prayers-Cathy
Pat, Congrats on 9 years, you are my role model!! I am 5 years and am excited to hear about 9 years.
I try to tell everyone that when I awoke from my 3 week coma and was told what had happened my first thought was "thank God Jeff and Cates had memories". I didn't go first to "who did payroll, did they know to pay, did they call.... I was so happy to know that if I hadn't made it they would have great memories of enjoying life. We have more memories in the bank than money!!!
Lots of prayers for you to stay 4 years older than me in the cancer free birthday!!
Hi Christine, Welcome and sorry to meet under such negative circumstances, I have been to hell and back thanks to CC, and am excited to tell you I am 5 years cancer free, there is HOPE!! I have an amazing story to share and keep it posted on www.catherinedunnagan.com. I am alive today because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis, MO.
Dr. Chapman is a world renown doctor and the kindest soul you will meet. I know of at least 4 CC patients that have contacted him after sharing my story, have all had there prognosis changed for the better. Dr. Chapman is phone friendly and knows time is not our friend and will act with in days if he can help.
Please call 618-567-3247 or email if you would like to talk or if I can help you
Lots of prayers-Cathy
I am 5 years cancer free and still have chemo brain or at least that is my excuse and I am sticking with it!! I did some form of chemo for 9 months while waiting for transplant and my oncologist was very adamant about me taking a low dose anti-depressant as a preventive, since this is such an overwhelming time. I followed her advice and had no side effects from doing that. I also always took 3 anti-nausea meds so something was in my system at all times. My doctors also put me on megace as appetite stimulant. One doctor told our daughter, who was in college that if she wanted to provide marijuana at this time, she wouldn't object LOL!!!!
Lots of prayers for HOPE, peace and cancer free for your husband!
Samuel, Gone but not forgotten, is how your dad will always be. I know Percy did not find the cause or cure for this awful word, but he did everything possible to raise awareness and information of it and passed on so much HOPE to so many he never me,t all while dealing with terrible cancer.
Amazing and inspiring man.
Prayers of peace and comfort for you and your family.
Julie, I think your analogy about cupcakes stores is great. I think the FB pages are a "watered down " version of the forum. I think in doesn't have the structure we do, so to give information or names of people who have amazing stories to share like Lisa Craine, Patty from Illiniois, Kris ,Daisy, my self.... will not grow because there won't be the connect or depth we share here.
Our goal here and on FB is to give HOPE, information and the names of doctors and hopsitals that give HOPE.
I told my HERO,(Dr. Chapman) I would post him name on every wall I could find so now it will be just a little harder! LOL!!
Lots of prayers for HOPE!!
Gavin, there are two new FB pages- bile duct cancer awareness and the other is CHONGIOCARCINOMIA SUPPORTERS. The FB pages both post stories, info and questions but there is something so different, maybe because there are no categories or no way to continue threads... I know I have posted a few times about my HERO and expierences but I don't know they have gotten as far or had the impact that this site has when I share them. I am afraid that to many support sites derails us, cause our cancer is still rare and not enough knowledge about it so taking the little there is and dividing it up doesn't help those looking for all they can find about it or those having information sharing it.
Lainy this site is mentioned but more as a clinical/technical site.
Just curious if anyone else has noticed our site is not as busy with personal journeys, struggles, expierences and all there info, as it had been? I know there are 2 new FB pages groups and have 1500 members plus and I can't help but wonder if that has made it a little more quieter on our site. As much as this site could really scare you when battling CC it was so much help in treatment options and the kind of understanding you have only when you "walk a mile in someones shoes"
Just wondered what anyone else thought.
Lots of prayers
Cathy- 5 years cancer free/6years since they said I had 6-8 months!!!
Sis- HOPE you hear soon!! Dr. Doyle is GREAT and like I said a great shoe collection too!!
Dr. Chapman and team know time is not our friend, so I am sure you hear soon!
Lots of prayers for good news-Cathy
Mark/Sis- as long as Barnes covers it, that's all you need!! LOL!!
Prayers for positive answers to being a candidate for transplant/resection-Cathy
Daisy, Brenda on the farm, and Jathy1125 all Dr. Chapman's success stories, he is keeping the
"good news, what's working" section full!!!
Congrats Daisy's mom!!
Sis, So excited that you are going to see our HERO Dr. Chapman!! Brenda and I are life time members of the Dr. Chapman fan club!! LOL!!
I sent you an email but there was conflicting messages when sent so please contact me if you don't receive it and would like to talk or if I can help I live in St. Louis area ! 618-567-3247
Lots of prayers-Cathy
Crazy to read Brenda's original post because less than a year later Kenny got his liver!!!
Apparently Medicare pays!!
Lots of prayers for all the battles our CC family faces
Willow, sending prayers for peace and comfort for your sister and your family during this time.
WOOHOO!! May 24,2014, 5 years cancer free and July 5th 2014 my second liver is 5 years old!! I am proof that transplants work wonders!!!
Willow, you are an amazing sister, your sister is so blessed to have you as one of her caregivers!!
Lots of prayers for HOPE and miracles-Cathy
Maggie-CONGRATS!!! CONGRATS MOM!! Everyone knows I post all the time because I want to give HOPE!! I think in my 6 years of being a CC family member, the tide is slowly changing and there is more long term survivors, which is partly because of the sharing of symptoms, trials, and doctors that happens in this forum.
I know for me I share my story because for every exciting moment and milestone I have had, there are two families not making the memories and milestones. I share, to honor my donors and give HOPE!!
Maggie and family keep popping in and giving HOPE, you are an inspiration.
Thank you God, 2 strangers, and Dr. Chapman for this post!!
Matt-I am not sure if only the "most healthy" is correct. I was 40 plus pounds overweight and had cancer!! The gentleman who was just transplanted is diabetic.
I think the key to our treatment and success is to have all info presented and ruled out by a doctor who believes there is options.
Matt I think your case is a great example of exploring options.
Lots of prayers for continued success-Cathy
Duke I am a 5 year cancer free CC survivor thanks to God, 2 strangers and Dr. Chapman. Dr. Chapman saved my life twice. I was blessed by my first miracle, that the doctor who diagnosed me knew my only HOPE was a transplant trial with Dr. Chapman. I skipped all the nonsense that most CC patients must go through looking for HOPE and answers, because I had a gastronoligst who was educated in CC and all the options out there.
I have shared my story so many times as Wayne has that at least 4 families have had contacted Dr. Chapman and have had there whole prognosois changed. I also know of women in Texas who was told by her doctor, who one HOPE was to contact Dr. Chapman and see if saw something he didn't, that is a sign of of a great doctor, the patient before his ego. Dr. Chapman couldn't help her. Last week Dr. Chapman had 2 CC patients on the transplant floor (one for a resection and one for a transplant) because I could share my story on our site. The transplant patient was told he wasn't a candidate for transplantation by the Mayo Clinic. I am sure Brenda will add more of her journey to save her husband later.
Duke I use this forum to let people know there is HOPE, I am not medically savey, I just know there is an educated kind and caring man out there who knows CC. I agree with Wayne, doctors should be helping us find educated doctors who have had success with curing CC, Thanks to Dr. Chapman I am not only a cancer survivor, I can say I am cured. The one thing my hero, Dr. Chapman, Wayne and I always want people to know have your options for a transplant or resection ruled out by someone who believes they are an option.
I HOPE more CC patients can run marathons 6 months later like Daisy's mom, I HOPE more CC survivors hit the 5 year cancer free mark to say they are cured......
Thank you Wayne for being such an advocate for CC and all you do to let people know about our HERO even after your story didn't have the perfect ending.
Hi, Brenda also know as "Brenda on the farm" asked me to tell our CC family that 2 weeks ago Friday her husband received the gift of life, a new liver!! Kenny is cancer FREE!!!
Kenny is doing great and is out of hospital and staying local for the next week to be monitored, till he can be discharged and return home.
I was so excited Brenda asked me post this because you all know how passionate I am about transplant being an option for more of our CC family!!
Lots of prayers for Kenny, his donor family and Dr. Chapman to be able to bring HOPE to mor of our CC family.
Posts found: 1 to 25 of 610