jathy1125
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Ladybug-You are and inspiration to your daughter and all your cc friends going through this. Lots of prayers your way-Cathy
Melanie-My heart goes out to you and your husband. I am a cc survivor, but it was a long road. Financially things were not great, but I also know how bad it could have been as in lisa”s case. I know for me the year I was recovering from transplants, chemo and radiation was very intersting. My home was my safe spot, things felt safe and normal here. It was very hard for me to see things change, my daughter bought the wrong groceries, (I had a feeding tube why did I care), replaced kitchen utensils…. I was grateful for all my friends and family taking care but it was hard to see change, and they weren’t anything big. I never expected to feel this way I am not a disciplined- orderly person normally. My thoughts are if you can stay in your “dream home” do it, you have some many things to deal with and normalcy is a big help! Good luck and lots of prayers- Cathy
Sharimay-I believe we are allowed a little if not a lot of “nuerotic behavior” when you have or had cancer espaciously cholangio. I have been cancer free for a year and a half and just did my 6 month scans. I was pretty worried but silently, people think its over and everything will be ok. My friends and family were my biggest supporters during all this and still are concerened but just don’t really understand. I panic if I am itchy!! The one thing cc has taught me is “until you walk a mile in there shoes” is a great analogy for life. So feel free to be nuerotic with your cc family!! Lots of prayers- Cathy
Kathy-I am sorry I read your post wrong, it was your local doctor that you were a first with. I love my local doctor, he started the journey for me, but I will always be grateful that he was on vacation when test were read. I would have been sent to a local gastronologist who would not have had the expierence to know what he was looking at and would have taken the negative bioposy as truth. One of the many miracles God sent my way the last 2 years.
I did 8 weeks of gemcidabine then 6 weeks of 5FU-24hour a day chemo pump while doing radiation. I took a break for 4weeks and then started on Xeloda (oral chemo) until a liver was found (about 5 months). I started chemo treatment September 2008 and was transplanted May 24, 2009. I did get extremely tired, but went to California before going on transplant list and still managed to be a tourist in San Francisco. The day I had transplant, I went to WalMart but did rest awhile in patio section!! Never lost hair, all my nausea was managed with medication. I hope a transplant is an option for you. Good luck and lots of prayers-CathyKathy-I am a cc survivor because of a liver transplant. I have posted on here many times about my expierence, nothing but positive. I was in the care of Dr. William Chapman at Barnes-Jewish in St. Louis Mo.They are up there with Mayo. I am there number one fan, I recieved nothing but positive and loving treatment. Barnes just openned a new transpant floor because they are a cholangio center. Chemo and radiation were part of my teatment and had minimal side effects, nothing unmanageable. I have an amazing story and you can read about it at thetelegraph.com under christmas miracle. If you would like to talk please call 618=567-3246 or e-mail. I too just had my scans and all clear!! Good luck and find a knowledgeable doctor they are out there! lots of prayers. Cathy
I also had “bad luck”, I probably could eat healthier, but I could also eat a lot worse. I think that is the million dollar question “how come?”, when we answer that question I think we will have cured cancer (woops hope Susan G Koman doesn’t see this).
Kind of intersting since I am acc survivor due to a transplant,some people have asked if I was an alcoholic or drug abuser!!-CathyMarion-thanks for the kind words, that is exactly what I want to give is hope. I do need help posting it in transplant section, unfortunately being a cc survior did not make me computer literate, ha! Thanks-Cathy
Hello I am a cc survivor due to a liver transplant. I was diagnosed in July 2008 and was immediately put in the care of Dr. Wiiliam Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman saved my life not once but twice. I ended up having a second transplant due to radiation damage (this is very rare) You can read my story at thetelegraph.com by putting in christmas miracle. My cc was stage 4 and inoperable. I received my first transplant on May 24,2009 and second one July 4 2009. Dr. Chapman and staff are the most amazing people. i never needed a second opinion because I was in the care of the best. Please feel free to e-mail me if I can give you more information. Good luck and lots of prayers-Cathy
Tom-Sorry that Barnes was not a positive expierence for you, but for every negative there is a positive. I am the positive. I was diagnosed thursday at 3:30 on July 31, 2008 at Barnes West County and by friday night I was at “big Barnes” and on sunday morning Dr. William Chapman was at my bedside. I never had to ask questions because they gave us so much hope and information. (I am sure we probably did ask though)
My oncologist was Dr. Rama Suresh, she sent me a hand written and signed christmas card!! My radiation oncologist was Dr. Parik, who I stopped by to say thank you to last week, knew every detail of my illness the last year even though I hadn’t seen him since December 2008.
My liver doctor is Dr.Jeffrey Crippin, my new best friend!
I saved the best for last Dr. William Chapman my transplant surgeon. What can you say about a man who saved your life twice. When I coded on July 4,2009 he wouldn’t give up on me and went again others negative opinions to continue life saving measures, which meant another liver transplant, he found me a liver in 14 hours. The most amazing part is he considers me a miracle and sent me a letter saying how amazing I was. Dr. Chapmans staff is every bit as humble, dedicated and unpretenious as he is.
I feel a reponsibility to make sure this information is out there. It is the one way I can honor my donors, the doctors and hospital that help me see my daughter graduate, 3 christmas’s, 3 more birthdays….
I wish everybody who has to go through this awful cancer, could come out on the positive side like I did.
Good luck and all my prayers to this special family- CathyMystar- I am a cc survivor because of a liver transplant. I was in the care of Dr. William Chapman at Barnes-Jewish Hospital. I was diagnosed July 31, 2008 and recieved my first transplant on May 24, 2009. I was put on the list on January 29, 2009. My MELD score only kept going up. My doctors had told me probably 4-5months for a liver and kept apologizing and reassuring me. that we would get one. I recieved 2 “fake liver calls” in that time. I was also B+ so that put me on another list. I was transplanted a second time on July 4, 2009 and a liver was found in 14 hours. (You can read my story at thetelegraph.com under christmas miracle.) I have had the most wonderful coordinator Pam Thurston since my diagnosis. MD Anderson is on the same page as the Mayo Clinic and Barnes. I am alive only because God put me in the hand of the most amazing hospital and Dr. Chapman and staff. Please feel free to e-mail me at jrdunnagan@gmail.com or call at 618-567-3247 if you would like to talk. Lots of prayers-Cathy (Pam called today to say my 6 month cat scan and MRI were good!)
Brad, I am a cc survivor. I was diagnosed with stage 4 inoperable cc. I am a live today, bacause of Dr. William Chapman (google him) at Barnes-Jewish Hospital in St. Louis MO. (amtrak station a few blocks away!) Barnes doesn’t get enough recognition on this site, but they just openned a new transplant floor because they are “one of the few cholanagio centers” in the nation, as reported in local paper. There are several people on this site who are or have been treated by them all with positive thoughts.
Don’t hold it against a surgeon for wanting to operate, thats how they know how to save lives. Thanks to 2 liver transplants I am alive. There is hope out there. Good luck and lots of prayers-CathyGreat post-all of this family needs to e-mail or post on www5.komen.org there is power in numbers- Cathy
Hello-I did gemcidabean, 5FU, radiation and Xeloda for 9 months combined. I never had any hair loss. I only lost hair after my second transplant and that was due to all my anti-rejection medicines and a feeding tube for three months. My hair got very thin and a few bald spots, but never total loss. Good luck and lots of prayers- Cathy
