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Jason, sorry about your mom I keep praying that Dr. Chapman will be able to help.
I am obviously very biased on transplants as an options and like you wonder why more CC patients aren't candidate. I am sure one is there is a major shortage of organs, and for a long time most doctors wouldn't consider it for reasons of reaccurance, no immune system to fight off reaccurance and to quote Sloan Kettering "it is illegal to give a perfectly healthy organ to some one with cancer"!! That was told to Wayne Parson when he brought his wife to them, he then contacted Dr. Chapman, unfortunaley his wife didn't make it but she did make it to the transplant list, Wayne Parson always says if he found Dr. Chapman sooner his wife would still be here. Wayne Parsons post can be found on this site.
Please contact me if you would like to contact Wayne, he is very knowledgable and helpful.
Jenny, Sorry to meet under these conditions. I live in southern IL and am excited to tell you I am 6 years cancer free from this awful disease. There is HOPE!
I worry when they say your mom is inoperable, that is a reason to get a second opinion. My miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman is very phone friendly and knows time is not our friend, he will do a phone consult quickly to see if he is able to change things. The Mayo Clinic and MDAnderson are probably the most mentioned on this site for cutting edge CC care, but there is a little more time involved in getting an appointment.
I keep my story posted at www.catherinedunnagan.com
Please contact me if I you would like to talk or if can share any info. (618-567-3247)
Lots of prayers for your mom and her family for HOPE
Jason, I had 10 ERCP's (all stents) in the 9 months I waited for transplant. The ERCP's usually brought relief from nausea, vomiting... I had a couple almost back to back right after diagnose. I had amazing doctors, all I had to say "my feet itch" and they knew to change them.
My diet or food choices wasn't a "healthy cancer free diet", but I was doing radiation and chemo and my radiation oncologist said "We don't like skinny people, so eat and eat whatever it takes"!!
Lots of prayers for HOPE and comfort,
Randi-CONGRATS, and AMEN!!! So excited for you!
I relate completely with I only think of it daily and not by the minute! When I was first diagnosed the person I reached out to say she didn't want this to define her, and I never and still don't understand that. Cancer shook my world and I came out of this earthquake alive, so for a moment and memory, there is a underlying greatfulness! I may not breathe it every moment but I am always aware how life changes in a moment and never want to lose that knowledge!!
Congrats and keep inspiring!!
I am excited to say on May24, 2015 I was 6 years cancer FREE!!
The best way to celebrate is to keep posting "I am alive because of God, 2 strangers and Dr. William Chapman", if my story bring another person HOPE, I am honoring my donors and Dr. Chapman who gave me a story!!
Please share with anyone looking for answers and HOPE!!
Brenda, thank you for the kind words, you are making me cry!!
I am so excited about Kenny, one he is such a kind man and because now he is a face of HOPE!!!
I love to share my story, and cannot say enough the reason I have story is because of God, 2 strangers and Dr. William Chapman!!
Love you Brenda and can't wait to visit again!!
Jason, RUN don't walk to a second opinion!! Your mom's diagnose and treatment so far is subpar. Our cancer is very rare but not as rare as 7 years ago when I was diagnosed.
I am excited to tell you I just did 6 years cancer free!! I have an amazing story to share and keep it posted at www.catherinedunnagan.com
I am proof there is HOPE!!
My hero is Dr. Chapman at Barnes-Jewish in St. Louis MO. I have posted his name as many times as I can and several of our CC family have consulted with him and have had there dire prognosis changed for the better!! Dr. Chapman is not only a great a great doctor but a kind compassionate man with a heart. Dr. Chapman is also phone friendly an will take your call and decide quickly if he can help, he knows time is not our friend. , and will not bring you to St. Louis if he didn't think he could help. Brenda on the farm just posted her husbands1 year good news story and Dr. Chapman was there second opinion!!
MD Anderson and Mayo Clinic are cutting edge places for CC and I am sure you will here great stories from our CC family quickly.
Please contact me if I can help 618-568-3247
Lots of prayers for your mom
Lola, my daughter was a junior in college 31/2 hours away when I was diagnosed, not only did we insist she go back to school, so did my doctor . I know it was difficult for her but it was the best decision at the time. She is an amazing child, she always made sure on chemo day there was some gift for me, a book, mixed tape..... I was a transplant candidate and during my wait for the call we even made her go on spring break, of course she went with a Southwest voucher to get home quickly if the call came!
When things went real bad for me and was on life support, she called our priest twice to give me last rites and when things got better and I was able to go home, she did take a semester off. I came home in a whee lchair, drains, feeding tube.... and there was no way she was going back for the semester. That semester was the semester she was suppose to study abroad too.
I am excited to tell you she graduated a semester late.
There is no yes/no answer, I really believe you will know when the time is right to take a break and for how long.
Lots of prayers for healing, comfort and peace.
Hi you can email me with the email link or email me at email@example.com or FB me Catherine Sims Dunnagan or call me 618-567-3247. If you want to call you might wait a day or 2 have bronchitis and can't talk much.
Can't wait to talk.
Lots of prayers-Cathy
Liverma88, I am a 51/2 year CC survivor thanks to transplants. I am confused about your post or even more thankfull for my medical team, because I always kept aware of where I was on the list. My MELD score was constantly watched and raised, I started at 26 and was transplanted at 34 in a 5month period and Dr. Chapman thought that was to long. If you would love to talk or if I can help please feel free to contact me.
Lots of prayers-Cathy
Congrats, Julie keep posting good news and inspiring others!!
Lots of prayers for continued good health!
Fred, Welcome and sorry you had to find us. I am excited to tell you I am 51/2 years cancer free.
I have an amazing story to share and keep it posted www.catherinedunnagan.com There is HOPE!
I noticed you are in Texas so hopefully you are being treated at MDAnderson with Dr. Javle. Dr. Javle has many success stories on this forum. My "HERO" is Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I share my story to give HOPE but also to honor my donors and put Dr. Chapman's name out there, he is an amazing doctor and and even more amazing man. Dr. Chapman has been able to change at least 4 members of our CC family from inoperable to operable. I suggest when you are ready for another set of eyes on your son's choices, he be at the top of your list.
Please feel free to contact me if I can help.
Lots of prayers-Cathy
Welcome and sorry you had to find us. I am a 5 year cancer free CC survivor. I was 52 when diagnosed and given 6-8 months to live. I was not a candidate for any thing except the very controversable transplant trial. My first miracle was being diagnosed immediately by a doctor very versed in CC and him putting me in the care of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I could fill pages about the kindness, heart, surgical skills and knowledge about Dr. Chapman, the best way I explain it is to say he is the person you want your children to grow up to be like! I keep my story at www.catherinedunnagan.com There is HOPE!
I just want to add that only you and your family know which is the best option for you and CC, but since it is so rare you really need second and third opinions to get all the right information to help you make the best decision, you deserve it. To be deemed unresectable by one doctor is very common but another doctor might see things different. I of course always recommend my hero because he has been able to change the diagnose of some, and of course there has been several he couldn't.
Please contact me if I can help.
Prayers for peace, healing and comfort-Cathy
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.
Posts found: 1 to 25 of 623
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