jathy1125
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Monica-Welcome to a wonderful group of people, but sorry you had to find us. I am a cc survivor. My story like yours was full of miracles. I am alive due to 2 liver transplants. My hepatic artery burst due to radiation damage. I received 14 units of blood, coded and slipped into a coma for 3 weeks. My story started July 2008 and I can say I am finally back to “me” mentally and physically. You can read my story on FB (Catherine Sims-Dunnagan).
Focus on staying strong and don’t worry being, depressed is part of the journey.Keep posting here there is so much information, support and HOPE!
Feel free to contact me jrdunnagan@gmail.com
Lots of prayers-CathyAshley- Being inoperable is why one reason I qualified. They replaced whole biled duct. I have learned and posted on this site how LUCKY I was. I never really knew till I really started to recover. My diagnosos was “you have bile duct cancer, probably 6-8 months to live and you need to be in Dr. William Chapmans care for a liver transplant to survive”. I skipped all the middle nonsense and opinions. I have a great email from a gentleman who’s wife was Dr. Chapmans patient and would love to forward to you.
I had to qualify for trial. My clinical trial included chemo, 24hour chemo pump 5FU and 5 day a week radiation. I then did laprosopic surgery to make sure it had not spread. I then went on transplant list (about 5months after diagnosis) I took oral chemo (Xeloda) while I waited.
You can read my story on FB (Catherine Sims-Dunnagan) I would love to talk to you so you can email me at jrdunnagan@gmail.com or 618-567-3247.
Transplant is still not readly acceptable as a treatment, so don’t rule out until you talk to a transplant doctor, who knows whether it is or isn’t an option.
Lots of prayers-CathyRick.kamp- I think you said it all “surround yourself with people and Dr’s who believe that you can beat this thing” That is my story there was no discussing planB because he believed in plan A. There was always HOPE!!
Take a deep breath and start fighting-CathyWOW!! How amazing. I never really understood how rare our cancer is. Thanks for all the hard work, love and dedictation. (Just like Lainy said)
Hi Sooo sorry you had to find this site. I am glad to be one of the first to answer your post because I am a CC survivor!! There is hope. If you can tell a little more of your story, there is so many people that can help on this site. I am sure we all will want to know if you are comfortable and confident with your doctor and treatment.
I was treated by Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I am alive because of a transplant.
I understand how overwelhmed you are, this site is great place to vent and learn. There is a lot of HOPE here for you.
Lots of prayers-Cathy (You can read my story on FB under Catherine Sims Dunnagan, scroll down to telegraph article)I have had numerous blood tranfusions while battling cc. I had one through my hand because I have no veins left, that was probably the most pain I expierenced in this sickness. I also had 14 units of blood (not a type o) while waiting for second liver!! I guess I am a big fan of blood tranfusions!!
I have never had a PET scan, but to many to count MRI’s and Cat scans. I was told Pet was not an effective diagnostic scan for cc.-CathyHi I was 52 when I was diagnosed. I am a cc survivor due to transplant. Like everyone says get to a major hospital and get more opinions.
My miracle happenned because of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman helped develop the Mayo protocol. Since you are in the midwest Barnes and Mayo are two good options. You can read my story by going to my FB page-Catherine Sims Dunnagan and look for telegraph link.
Lots of prayers-CathyGlad there is no power struggle with you and step mom, and you both want the same end result, a cancer free dad. There is very interesting commercial airing about a women grilling her waiter about menu, question after question and then the next scene they show her at doctors and when asked if she has any questions she looks dumbfounded and says no! This a very common problem. I suggest you tell your stepmom you are going to look for more opinions since this a rare cancer. I would also ask your doctor to help, if he is good he will not feel threataned and will understand.
My mother-in-law was diagnosed with cancer and when we said we wanted more opinions his response was “Thats OK I have lots of patients” needless to say we moved on. Scary part he is one of the most popular in our area.
Good luck and don’t think you can ask to many questions. When and if you find more info, your stepmom will welcome it because you both love your dad.
Lots of prayers-CathyJoolz- I took Xeloda for 5 months while waiting for transplant. I took 8 pills twice a day can’t remember mg. I had no major side effects. Drug company nurse called once a week to check on me.Good luck.
Lots of prayers-CathyKathy- Since the tumor is contained I would start asking about transplant doctor. A transplant should be discussed. I suggest you contact Dr. Chapman at Barnes-Jewish Hospital in St. Louis MO. I received an email from a man whos wife was a patient of Dr. Chapman and would like you to read it. I can forward it to you if I have your email adress. I will post it later when I figure out how to do it, but right now I do know how to forward!! It has some interesting comments about Ohio”s transplant program.
I like your dad had no symptons, just itchy.
Lots of prayers-Cathy jrdunngan@gmail.comKathy-like everyone else sorry about you having found us. I am a cc survivor,due to a transplant. I under went all the chemo and radiation protocol to qualify. My doctors hope for chemo was to stop it from spreading, he did not expect a lot of change in the tumor with chemo and radiation.
This cancer is so rare you really need to make sure you are treated by someone who has dealt with it. Give your geography and people will provide you with great options. This is a cancer that needs second and third opinions unlessyou are lucky like I was and was miracously put in the care of one of the best, Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO.
You can read my story at thetelegraph.com under christmas miracle. I am approaching my two year cancer free anniversary, not an easy journey but I am making it..Keep posting on this site you will get so much direction, understanding and information.
Feel free to contact me if I can help.
Lots of prayers-Cathy jrdunnagan@gmail.comMarion-that is exciting!! We need one in the midwest. I posted on FB so all my northern california family can participate
Ashley-I was 52 when diagnosed after just being itchy. I am a live because of a clinical trial. I had a liver transplant. My tumor was in the bile duct, was stage 4 and inoperable,, and was told 6-8 months with out a transplant.
I think you will find most cc people are in some kind of clinical trial, that is our main hope.
I am interested if you can do genetic testing for cc, I have a daughter. I din’t think you could.
Lots of prayers for you and your mom-CathyLainy-Google his name Jamie Redford and his foundation and story will come up. Good Housekeeping did a big article on him, very interesting. he lives in Marin County, probably close to Marions part of the country. He has a major benefit in San Francisco this month for organ donation. I am going to try to email him with my story (how many people have two liver transplants!!) in hopes we can attach our “star to his tail” We have to get in the door some how!! -Cathy
Jenny, Sooo glad for the good news. Sent you an email. Like you and your husband, I find it very important to spread the news and promote organ donations, it is the one way I can honor my donor. Robert Redford’s son is a 2 time liver recepient and PSC survivor, thru his site I learned that only 38% of people actually go thru with donating!! Good luck and lots of prayers-Cathy
GO GREEN RECYCLE YOUR ORGANS-SAVE A LIFE!!
