1

(15 replies, posted in General Discussion)

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!!
Cathy

2

(15 replies, posted in General Discussion)

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.
Cathy

3

(15 replies, posted in General Discussion)

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!!
Cathy

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
Cathy

Willow, sending prayers for peace and comfort for your sister and your family during this time.
Cathy

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!!!
Cathy

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!!
Cathy,

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.
Cathy

15

(0 replies, posted in General Discussion)

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.
Cathy

16

(13 replies, posted in General Discussion)

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.
Cathy

I just want to thank all that made this forum and keep it running!! I am excited to tell you it works, on Friday Dr. Chapman (my hero) had 2 patients on the transplant floor at Barnes for CC!! One came for a resection and the other was having a transplant!! The common link was both found Dr. Chapman through our site and both had "no HOPE" diagnosis by major cancer centers, both were not from St. Louis, MO. and both have great prognosis and are doing GREAT!!
CC Survivors, CC fighters and caregivers keep posting and sharing because you will give HOPE to someone!!
Lots of prayers-Cathy

Today is the day that a cancer fighter aims for, and I am excited to say I have reached it!!!. May 24, 2009 a family in the midst of there trajedy gave me the gift of life, making me cancer FREE.
I post this moment not because of my milestone but to give my CC family HOPE. When I was first diagnosed, I tended  to stay away from this site, because it seemed mostly caretakers, not great odds..., now in that 5 years this site is full of fighters surviving,cutting edge treatments with words that were never in our vocabulary, doctors who are getting more educated about CC and not just giving "hospice" diagnoses. I am in awe how this site has evolved, it is exciting to know that we as CC fighters have shared our expierences  and changed each others lives!!
I am so excited to say that my personal journey to hell and back has not been in vain. My donor family not only saved my life but four more by giving me one liver!! I have posted my HEROE, Dr. William Chapman name on any place I could and thanks to our site, 4 families (that I know) have had there diagnose changed for the better and given HOPE!!
Thank you God, 2 stranger and Dr. William Chapman and team for this moment!! There is HOPE!!
Cathy

19

(28 replies, posted in Introductions!)

Kelly, I am sorry for you and your family on Mary's passing. She was a great inspiration to all in our CC family, she gave many new members so much HOPE.
Lots of prayers for peace  comfort, and strength at this time.
Cathy

20

(3 replies, posted in Introductions!)

Jim, I am excited to see Dr. Chapman on your list!! He is my hero and saved my life twice. When he told my husband he had 12-14 hours to find me another liver, Jeff (my husband) says " I knew he would, I never thought you wouldn't make it"!!
Lots of prayers for HOPE-Cathy

21

(6 replies, posted in Introductions!)

Diana Welcome and sorry you had to find us. I am excited to say I am 16 days away from 5 years cancer free!! I was inoperable and had 6-8 months to live. I believe my story is in the loose note leaf section of this site under the foundation site. I did a video for Barnes Hospital with my hero Dr. William Chapman.
I can not tell you how important second and third opions are, I am excited to say my story has led 4 CC patients to my doctor who was able to change there diagnose for the better. Dr. Chapman is the most kind and amazing doctor, with so much heart and soul, and internationally recognized doctor. Dr. Chapman is ALSO phone friendly!!! Please contact me if I can help or you would like to talk. (618-567-3247)
Lots of prayers for HOPE-Cathy

22

(7 replies, posted in Good News / What's Working)

Ms. Daisy, about time you posted your GREAT news!! Your mom is one amazing women, I don't know how you keep up!!
Keep inspiring and posting her good news  to give others HOPE!!
Cathy

23

(23 replies, posted in General Discussion)

I always credit a new neighbor/friend for saving my life, she asked if I had been in a car accident because I had so many sores from scratching. I look back and realize there was a lot of signs I also ignored. I own a lawn care company and work outdoors, just thought it was heat, allergies....that made crazy itchy (no bristles left on my hairbrush, forks, knives...) I was also over weight (even though, I had been excersicing eating better and being healthier and losing weight the last 8 months) so I chalked all the nausea, heartburn, shoulder pain abdominal pain to being over weight. Her comment is what made me go to doctor. I was very blessed that since my regular doctor was on vacation I ended up with a very knowledgable doctor who did one ERCP and came out and said "I know what I saw, I know it will come back a false negative and her only HOPE is a liver transplant"! I had my diagnose and cure in 5 minutes very very rare for our cancer! More interesting is  my tumor was only 2cm.!!
I am excited to say I am 22 days away from the 5 year cancer free day!!!
There is HOPE!!!
Thank you God, 2 strangers and Dr. Chapman for giving me this post!!!

24

(7 replies, posted in Introductions!)

Welcome Owen and sorry you to have find us. I am excited to tell you I am almost 5 years cancer free from CC. I am also excited to tell you I live in southern Illinois and my miracles  and miracle worker, Dr.Wiiliam Chapman are at Barnes-Jewish Hospital in St. Louis MO. Barnes is one of the top advanced places who are very knowledgable  about CC.
I can't wait to hear more of your story and would love to share mine, so please contact me (618-567-3247) or email me.
There is HOPE!!
Lots of prayers-Cathy

25

(12 replies, posted in General Discussion)

Ruali, I am sorry about your mom, but am excited to tell you I am almost 5 years cancer free and I had hilar cholangiocarcinoma. I have an amazing story to share and our Foot loose Notebook has a video I made with my Hero Dr. William Chapman. Having hilar with no mets could make your mom a candidate for a transplant if she has the right doctors. I am alive because of a transplant. (I had 2). When I was first diagnosed my doctors exact words were "I know it will come back a false negative but I know it is CC", he was right it took 2 weeks to get a positive reading.
Please email me jrdunnagan@gmail.com and I will be happy to share more info. I know Dr. Chapman is known internationally and I am sure he would be a well of info for you.
There is HOPE!!
Lots of prayers-Cathy