jathy1125
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Kris- Thanks for the post, it sure made me feel better. I woke the other day with heartburn and naseau and pretty much self-diagnosed return of CC!! I think we have every right to be nuerotic about aches and pains, especially because our cancer presents so many vague symptons. My family, freinds and doctors all have to accept my “fear “. I am a firm believer in “until you walk a mile in my shoes”
Sorry about back and good luck getting better.
Lots of prayers-CathyGrover Welcome and sorry you had to find us. I am a CC survivor, there is HOPE. I have been cancer free for 2 years. My CC was inoperable, but I qualified for a transplant.
I have heard your doctors mentioned on here, so you are in good hands. This cancer is so rare, that finding a CC center or doctor is important. My miracle worker was at Barnes-Jewish Hospital, St. Louis MO. with Dr. William Chapman.
I would suggest you look into SSD, because CC qualifies (that is one positive of CC). It takes 5 months from day of diagnose for first check. Ypu need to save all your physical strength to fight this!!
Lots of prayers-CathyAndrew- I just saw your post and I am a CC survivor due to a liver transplant. I am 2 years cancer free and had inoperable CC. A transplant is a cure for CC, it is still “controversial”. I had the most positive expierence in my battle (that is wierd to say). I was treated by Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Barnes is listed as a CC center and in the top 10 hospitals, and Dr. Chapman is one of the leaders in CC. He worked with Mayo to develop transplant trial. The one thing I and Dr. Chapman want is for people to discuss transplant with doctors who believe it is an option, and let them decide if you are a candidate.
I have been in contact with a member who’s mom had an appointment at Mayo and due to mine and other posting about Dr. Chapman, they contacted him by phone. Dr.Chapman talked to them by phone and gave them HOPE. They have met with Dr. Chapman and are having a resection. They had a HOPE and a plan while still waiting for Mayo appointment.
Please read my story at thetelegraph.com under christmas miracle, it will give you so much HOPE. I am only alive because of God, 2 strangers, and Dr. Chapman. The most amazing part is that is how Dr. Chapman would list it.
Please email me if I can help with any info.
Lots of prayers-CathyLallo-Welcome and sorry you had to find us. I am a CC survivor. I had Stage IV and was inoperable. I am cancer free because of a liver transplant. Our cancer is very rare and needs to be treated by doctors with expierence in CC. My hero is Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO.
I would get a second opion and discuss transplant, resection or clinical trials. A second opinion only validates what you are doing or gives you another avenue of HOPE. Please read my story at thetelegraph.com under christmas miracle it will give your dad HOPE.
Lots of prayers-CathyDear CNichols- I am a CC survivor, cancer free 2 years!! So there is HOPE!! Jim was right about getting to a major cancer center! My first test to diagnose symptons was scheduled for a week later, but I called doctor and cried!! I got in the next day! Do what ever you have to do to get your results, time is not our friend.
The most important thing is to be diagnosed by someone who knows about CC. Keep posting and put your locations and you will get lots of real life expierences to help you. My miracle was at Barnes-Jewish Hospital St. Louis MO (listed as a cholnagiocarcinoma center) with Dr. William Chapman.
Lots of prayers and HOPE-CathyMy SSD started 5 months after diagnose. I was diagnosed July 31, 2008. I applied December 2008, approved with in 2 weeks and received my first check Febuary 2009. I made one phone call, filled out an app on line and then did a 45 minute interview on phone (time was prearraigned)!! This is how goverment should be run, so simple and effiecent!! Everyone with CC needs to apply, age makes no difference.
Lots of prayers for all in the battle!-CathyMargaret- Tom and you are an inspiration to all fighting CC. I love that you keep your sense of humor going, Mr&Mrs Doom & Gloom don’t have a chance with your attitude.
The collection agency and me are on first name basis. They have no clue how anyone could keep track of or pay all these bills!! Very honest and kind for a collection agency! Congrats on the grandbaby-God has way of distracting us and sending us a reason to HOPE!!
Lots of prayers-CathyCindy-Welcome and sorry you had to find us! I am a CC survivor. I am cancer free for 2 years!! My miracle was with Dr. William Chapman at Barnes-Jewish Hospital St. Louis MO.
Please keep posting on how your journey is going.
Lots of prayers-CathyJoe- Welcome and sorry you had to find us. I am a CC survivor. I am from the St. Louis MO. area and one of my miracle workers has relocated to UCSF. Her name is Dr. Susan Logan, the woman is beyond words. I am alive because she would not give up, even when I had flat lined for way to long.
Lots of prayers-CathyRachael- I am glad Marion got you to post, I would love to hear your survival story. I am a CC survivor because of 2 liver transplants! My hero was Dr. William Chapman, Barnes-Jewish Hospital, St. Louis MO.
Lots of prayers-CathyCM-Great link. I don’t think it is selfish for us to wonder why someone with his respect, passion, and magnetism didn’t use these qualities to promote awareness for rare cancers. He had america’s attention and could have helped cancer funding.
Lots of prayers for all-CathyDear Wittrock-My prayers are with you and your mom. I have hard time posting on here sometimes because I am a CC survivor due to a clinical trial and I want all to have the same positive outcome I did. I like your mom was only 52 and our only child a junior in college, this was not a scenario I had ever pictured. Our stories are what you read about someone else and go “oh my”! I keep posting “CC survivor” to give HOPE! HOPE, Prayer and a great doctor is what will get you through this.
Lots of prayers-CathyTommy-Welcome and sorry you had to find us. I am a CC survivor. I have been cancer free for 2 years. My CC was inoperable and my only hope was clinical trial involving chemo, radiation and a liver transplant. (You can read my story at thetelegraph.com under christmas miracle).
Please post more of your story. Lainy was right about second and third opinions. it is very important you have a doctor expierenced in treating CC, there are not whole lot out there because it is so rare. My doctor was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I am alive because of God, two strangers and Dr. William Chapman.
Lots of prayers-CathyAmy-Keep saying I CAN DO!! I am sure there are many reasons to fear radiation, but as a treatment it is pretty simple and quick. My treatments were about 5 minutes. I had no sunburn or effects from it during trearment. About a week after 6 weeks of treatment were through I became extremely tired, I spent a lot of my time in my recliner!! Focus on the end results-cancer free and reading to your grandchildren!!
Lots of prayers- Cathy (2 years cancer free)Pam-You are an amazing mom. Your journey is so dejavu. I have posted on here many times that I am alive because my doctor was on vacation! I too had to hunt down my test results, and the only reason I did was because I was so itchy. It was by the grace of God that I ended up in Dr. William Chapman’s care. I was told it was unoperable and 6-8 to live with out a transplant. Have you ever discussed transplant. My tumor was unressecatable also. Please discuss with a doctor who believes it is an option.
Lots of prayers-Cathy
