Forum Replies Created
November 7, 2010 at 10:09 pm in reply to: Sorry I haven’t written in a while #25842
David- I am a cc survivor and have been dealing with this for 2 years. I finally am not living and breathing it but I still use the “cancer card” for my somewhat short behavior sometime. Don’t waste your time being worried about being testy, you have every right to. Until you walk a mile in someones shoes, you never really understand. Hopefully our loved ones will never have to!!November 7, 2010 at 3:26 pm in reply to: Treating Cholangiocarcinoma-Mayo Clinic #43210
Marion I did not dodge this disease, I survived this disease. I lived and breathed this disease for 2 years I almost lost my battle with it twice. I can finally believe I have a hope for a future. I will always have to worry about not just reoccurence, but organ rejection. I am no longer in the “6-8 month category”, is the big difference. I have hope for a long future. CathyNovember 7, 2010 at 3:15 pm in reply to: Treatment Centers/Physicians #29928
Hello highsmith, I am a cc survivor thanks to Barnes. My leed doctor was Dr. William Chapman, he transplanted me twice. My oncologist was Dr. Rama Suresh and radiation oncologist was Dr. Parik. My liver doctor is Dr. Crippin. I have written on here many times about these amazing doctors and need to expierence them to know how loving and caring they are. I was never a number or just another patient, they honestly knew who I was as a person. They always took care of just not me but my family also. My coordinator is Pam Thurston and she never stops caring. I always found it amazing that they never took credit for my survivng and always credited me, my family and a higher being. I am still confused about why transplant is not an option for more of us. I am very suprised that this site list transplant treatment as controversial, I am a living testimony to how wrong that is. If you would like to know more about my amazing expierence with Barnes e-mail me, I would love to talk to you and help you navigate your way thru this miracle instution. CathyNovember 4, 2010 at 8:16 pm in reply to: Any bile duct specific cancer survivors out there? #43750
Hello Jeand-I am a bile duct cancer survivor!! I was diagnosed Aug 2008-only sympton was being itchy. My tumor was in bile duct fingers and was inoperable. My only hope was a transplant. My miracle was done at Barnes-Jewish in St. Louis MO. My hero is Dr. William Chapman. When I was diagnosed we discussed only once about it being terminal (6-8 months), after that he just focused on curing it and lots of hope. I did gemcitabin, 5FU, Xeloda and radiation. I had 8 ERCP in 9 months. Iwas transplanted May 24, 2009 making me cancer free!! I was transplanted again on July 5,2009 after my hepatic artery burst due to radiation damage. Dr. Chapman never gave up and always so loving and hopeful. My family and I believe I was saved twice to give hope to this terminal cancer. Don’t give up and pray like crazy! CathyNovember 4, 2010 at 1:50 pm in reply to: Is there a best place to be treated for cholangiocarcinoma? #43533
Hello Johanna, I am one of the few survivors of cc on this site. I am cancer free, thanks to Barnes-Jewish Hospital in St. Louis MO. Dr. William Chapman is in the top 100 doctors in the world, (google him). When I was diagnosed in Aug 2008 only Barnes or Mayo were offering cc clinical trial. I was told 6-8 months with out transplant I was stage 4. In the last 2 years I have done chemo, chemo and radiation,oral chemo and 2 transplants. My second transplant was due to radiation damage and was given maybe 36 hours to live, Dr. Chapman never gave up and found me a new liver! It has been 2 long years and I was always treated with so much love and hope. Dr. Chapman and staff are definetily Gods angels. Good luck and lots of prayers your way. Cathy firstname.lastname@example.orgNovember 4, 2010 at 1:38 pm in reply to: Update on Dave and the latest #43670
ladybug- You are in the best place. I am a cc survivor because of Barnes. They saved my life not only once but twice. I live in the neighborhood so if you would like some company or break while you are there e-mail me. We will keep Dave in our prayers. Cathy email@example.comOctober 26, 2010 at 9:33 pm in reply to: Dave is back in the hospital…..sigh #43389
Hope all will go well. Hope since you are in St. Louis, you are at Barnes-Jewish, they are my doctors. You could not be in any better care. They saved my life twice, (one time I had 36 hours to live and 14 units of blood) they never gave up and are so full of positive energy. God bless-CathyOctober 25, 2010 at 2:57 pm in reply to: just diagonosed and need help with questions #41600
mhelton- I am one of the few cc survivors that have survived due to liver transplant. A transplant is a fairly new clinical trial, I had stage 4 cc. My symptons were just itchy!! I was very fortunate to have by chance ended up having my first ERCP done by a gastro doctor who knew what he saw and knew about this trial. Barnes-Jewish in St. Louis, MO. and Mayo Clinic were the main hospitals for this trial. My doctor is my hero, he saved my life twice. He is Dr. Chapman at Barnes-Jewish (google him). I highly recommend you ask about transplant as an option and get a second opinion so you can compare all your options, the worse thing that will happen is that the opinions will all be the same. Good luck and will pray for you-CathyOctober 21, 2010 at 2:08 pm in reply to: Treating Cholangiocarcinoma-Mayo Clinic #43208
It is so deja-vu to watch this, it has been 2 years since I heard those words from Dr. Chapman at Barnes-Jewish in St. Louis MO. At the time Barnes and Mayo in Rochester were the only ones with this clinical trial. At the time all my brushings were sent to Mayo for final diagnosis of cholangio.
Now that we are finally in recovery, we realize just how lucky we were. When I was diagnosed, being terminal wasn’t discussed in any length, a liver transplant was going to save my life. My diagnosis was made with so much hope and positiveness, I only know now how lucky I was. It is still surreal to me that this disease has such a bad prognosis. I wish everyone could have this option. CathyOctober 21, 2010 at 1:50 pm in reply to: Do you have Pink Ribbon Fatigue? #43176
So good to hear the frustation. I have a lot of guilt about these feelings. These are not feelings easily shared, being cancer victims you want hope for all,. We all know it could happen to us and we would appreciate the love and support. Just hard to understand a cancer with a pretty good survival rate now gets so much support and a cancer with such a barely non existant survival rate gets next to none.
Thanks for the cc site to help us express our “guilt thoughts” CathyOctober 15, 2010 at 2:55 pm in reply to: She is in his hands now #43074
Wow what an amazing story, it takes my breath away. I am so sorry about your wifes passing.
God has worked so many miracles in my life since my diagnosis in July 2008. I always knew God was there, but never expierenced as much as in the last 2 years, he knew how to leave your wifes touch with you.
The one thing I always remember thru this journey is when I awoke up from a 3 week coma and was told what had happened, was my first thought was thank God Jeff would have had great memories! Debbie did this for you another sign of Gods handiwork. CathyOctober 15, 2010 at 2:07 pm in reply to: Medicare Supplemental Insurance #30366
Hi Ashley- I had 2 transplants for cc. My private policy paid for both after meeting deductables etc. We were self-employed and carried private insurance with Blue-Cross/Blue Shield. I had no problem getting my clinical trial approved with them. I also qualified for disability because of CC. I now qualify for medicare, but have found out by the time I buy supplement insurance,, drug coverage and pay my $110.00 for medicare it is cheaper to keep private insurance-go figure!! Insurance is very tricky now because we will never be insurable again. I realize that the pre-existing clause will help, but will it be affordable. I will never complain about my premiums again. Good luck CathyOctober 13, 2010 at 5:47 pm in reply to: PortaCath – or not? #42632
I cant imagine going thru treatment with out one. It is such a minimal evasive surgery. Why not using one, would even be an option is boggling.
I had to have mine removed after gettin a blood invection after second transplant, I probably was more upset about that then the cancer!
It made all blood draws and ivs easy and pain free. My vote and advice is get one quick! CathyOctober 13, 2010 at 2:29 pm in reply to: My husband’s liver transplant: how early detection saved his life #42873
Hi Kim, I am also one year cancer free due to a liver transplant. Barnes-Jewish in St. Louis Mo. and the Mayo-Clinic are the only two hospitals to offer this clinical trial. I was there 3rd patient. Dr. Chapman saved my life twice. My hepatic artery burst a month after transplant due to radiation damage, and was given maybe 36 hours to find another liver, he never gave up and was transplanted a second time on July 5,2009.
It has been 15 months now and I am finally getting back to normal. I had a major set back when I got CMV (be very careful to not get this).Iwish that transplant was option for more, I was told 6-8 months with out one. I have finally written thank-you to both donor families. I owe two strangers my life, so please cc family be a donor you can help save a mom, wife, sister, and friend.
Good luck Kim and John. I look forward to reading about your expierence. CathySeptember 21, 2010 at 1:52 pm in reply to: Initial symptoms #41836
Charlea- I did go to my family doctor and after a short time of chasing our tails and Gods handi-work I was diagnosed. My only sympton was being itchy. I was told to take aveeno bathes. I did casually mention some vommitting, which he then decided to do blood work. My blood work showed elevated liver enzymes. Thank god by sure luck I ended up having a ERCP by a doctor who knew what he was looking at. He told us it would come back negative but that would be wrong. Dr. Alaperty transferred me right away to the transplant team at Barnes-Jewish. I did chemo, radiation and 2 liver transplants. 2 years later I am alive!! My story is a miracle, getting diagnosed was a series of mistakes at the local level, but God intervened and put me in the right people hands. I wouldn’t be here if not for Gods guidance. My family doctor is still amazed.