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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
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Posts found: 1 to 25 of 635
Mary, I have been on XELODA for almost a year. I was 61/2 years cancer free due to transplants, but it came back in my ureter. Treatment this time around was very hard with many life threating times, I basically flunked out of all standard chemo programs. My doctor and I discussed quality or quanity of life and decided to stop treatment. I did my scans 3 months later only to find out it had spread to stomach and pelvic. I then went on XELODA, I still had problems but more do stent in ureter and never had a constant chemo schedule. I developed hand/foot syndrome very badly (needed wheelchair) so we reduced dose and that helped. I finally just did 2 months consecutively of chemo and am taking a break due to more chemo symptons, but only a week! Doctor said if side effects continue, we can still lower dose. In conclusion after almost a year and minimal problems, there has been no mets and my year and half is now 21 months.
There is HOPE
BGlass, BJC my hospital and doctors have a portal but they won't release scans until after you see doctor. I can see my blood works in about 15 minutes, but the rest is released after doctor sees you and I appreciate that, I would make a very word a negative!! LOL!!!
I too was diagnosed in 2008 and went 61/2 years cancer free and mine came back 2015. I was 52 when first diagnosed and was 61 when it came back, I do know chemo the second time was a lot harder on me than the first time, I basically flunked out of most chemo options because of all the complications they were causing so we stopped chemo for a few months only to have more mets happen. My doctor then decided to have me do Xeloda, and it has been almost a year on it and stayed "no change", with little side effects.
Prayers for answers and HOPE,
Julie, GREAT news. I for the first time in 9 years of the CC world had my scans and results in the same day for the first time!! LOL!! So nice, no prolonging the anxiety!!
Keep inspiring and giving HOPE!!
Catherine, what a great doctor!! I have always posted about my HERO, Dr. Chapman and one of the things I always say is he is phone friendly, and will phone consult, will not have you make a trip if he doesn't think he can help you!! Signs of great compassionate doctors.
Taylor, I am 9 years out in my CC fight. I was blessed to have been able to have a transplant. Transplants are very controversial still in the CC world, you really need a doctor who believes it is an option, the Mayo Clinic is one. I am in IL. and was cared for by the most amazing doctors at Barnes-Jewish in St. Louis MO. my hero is Dr. William Chapman. I have shared my story enough that several of our CC family from all over have contacted him and some have had the prognosis changed for the better. I know that one gentleman who was considered non transplant from Mayo Clinic, contacted him and Dr. Chapman was able to transplant him and is 3 years post transplant. ICC is usually not a transplant options, but things are so different now then 9 years ago. Dr. Chapman is one of the most kind, gifted doctor you will come across, he is vey knowledagble and respected in the CC world he is also very phone friendly and moves quickly because he knows time is not our friend.
Here is my story www.catherinedunnagan.com
Please let me know if I can help
Prayers for answers and comfort at this time
John, Keep inspiring! I was diagnosed 2008, and had 2 liver transplants and went 61/2 years cancer free! I now have been back in the fight for almost 2 years and when CC came back I was told 11/2 years?!! Thanks to great doctors, and power of prayers I am still here. I failed most of all the chemos and ended up back on Xeloda for the last year and that has kept me "no change", still have several mets but nothing new for almost a year now!!
Here is my story www.catherinedunnagan.com
I grew up in Sunnyvale, CA and lived in Monterey before my Midwest move, so I loved seeing your hometown, spent many wonderful beach moments in Capitola and Santa Cruz!!
Prayers for continue success and keep giving HOPE!!
Val, sorry you had to find this website. I just want to tell you I am Dr. Chapman's miracle. I am alive today because of God, 2 strangers, and Dr. Chapman and team. I have an amazing story to share and keep it posted at www.catherinedunnagan.com I am sorry to say though my story took a bad turn last October when my cancer returned after 61/2 years of being cancer free, but for me I remember 8 years ago I was told I had 6-8 months to live, so when I have my pity party I just remember that I got 8 years out of 6-8 months, lots of moments and memories made!
Dr. Chapman is more than a doctor, he is a kind man with a heart the size of Texas, he is very honest and loving. Dr. Chapman is very phone friendly and will move quick in reviewing your dad's case, he know time is not our friend. Once you contact his office he will have you send records/scans and will make a decision if he can change your diagnosis or treatment before coming to St. Louis. He will not make you travel if he doesn't think he can help you.
Please let me know if I can help, or if you come to St. Louis you have a friend here.
Brigitte,, I have a blood cot in my hepatic artery and have been giving my self Levonox shots since January. I tried to switch to Pradaxa, because my stomach was so battered and bruised from them, but had major heartburn from it. I googled Pradxa and found that is a major issue, so I am back to look for a spot to get my shot!! Oh well, I am alive to have such problems!!
Jennifer, I am excited to give you the name of my hero, Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I was 61/2 years cancer free thank to Dr. Chapman. I have an amazing story to share and keep it posted at www.catherinedunnagan.com There is a video on there that I was honored to make with Dr. Chapman. I have posted his name on this site for years and many CC patients have contacted him and several have had there diagnosed changed for the better. Dr. Chapman is a doctor with a heart and kind soul. He is very phone friendly and will act quickly, because he knows time is not our friend. You can also reach out to Daisy, or Brenda on the farm, to hear more amazing Dr. Chapman stories. I am alive today because of God, 2 strangers and Dr. Chapman and the amazing part is that is exactly he would list it, he is a very humble.
Please contact me if I can help more.
Prayers for your mom and your family.
Donna, Welcome the world to of CC! I to am so short of breath, I can't walk to living room from bedroom with out be winded. Many chest CT, blood work. ER visits XRays and long story short it is my liver and CC. Before my CC came back I was very short of breath, I couldn't walk and talk (God forbid!!) turns out I was very anemic and take 3 iron supplements a day, made big difference back then. My hemoglobin stays low about 9 now. I use a scooter, if I ever in a store where available, and that is very exhausting!!
Not sure I added any new information but I feel your pain and frustration!
grsharp, Welcome and sorry you had to find us. When I was first diagnosed my doctor's exact words," I know it will come back a false negative" It took 2 weeks of being sent to Mayo to get my positive biopsy. I have an amazing story I share on my web page www.catherinedunnagan.com
My hero is Dr. Chapman at Barnes_Jewish Hospital, St. Louis MO. Dr. Chapman is from Vanderbuilt and has a great reputation in the CC world. He is speaking at conference this week!!
Dr. Chapman has been contacted by several CC patients and some have had there prognosois changed for the better. Dr. Chapman is very phone friendly and will only bring you to St. Louis if he can help.
Please let me know if I can help
Lots of prayers-Cathy
Julie, I just had the same expierence with my liver abcess. My interventional radiologist, thought it was getting worse but my liver doctors didn't agree!! After several conferences with all my doctors, they believe it is better because the ultrasound is a better scan for fluids than a CT. The ultrasound showed very little fluid and my drain should be removed in 2 weeks!!
Lots of prayers for healing and less confusion! Cathy
Julie, sorry about all your problems! Thank God for the internet! I am curious why they don't use an external drain. I have had fluid build up for 6 weeks and have an external drain, hopefully will be removed tomorrow!
Prayers for answers and good news from the Mayo!
Frank, Hello and sorry to meet this way. I am glad your wife is responding to treatment.
I would like to ask, where you are being treated. I live in the St. Louis area (Wood River, IL) and being treat at Barnes/Siteman Center and Dr. Rama Suresh is my oncologist. God, 2 strangers and Dr. Chapman at Barnes saved my life 61/2 years ago and now we are trusting in them again. My team of doctors are the most compassionate, knowledgeable and fighting doctors you could want in this battle!!
I keep my story posted at www.catherinedunnagan.com There is a video I made for Barnes on there. Would love to talk some time!
Lots of prayers for your wife-Cathy
Ben, the first thing I was told when diagnosed was, "I know what I saw and I know it will come back a false negative", Dr. Guiseppe Aliperty at Barnes-Jewish in St. Louis MO. was right on. I was immediately put in touch with all the right doctors and 2 weeks after sending it to Mayo Clinic, my diagnose of CC was confirmed. If I had been treated by my local doctors I wouldn't be here to share my story.
Vanderbilt is a great choice
Lots of prayers-Cathy
Cait, hate to meet this way but we have some things in common. I was a 61/2 year cancer survivor thanks to God, 2 strangers and Dr. Chapman at Barnes!! Sad to say my cancer has returned. The return of my cancer was a shock to me and my doctors at Barnes. The other interesting thing is as we were traveling home from Thanksgiving, I ended up stopping buying a thermometer and finding an emergency room ASAP. I had a blood infection, urine infection and Kidney infection, they said I probably wouldn't have made it another couple of hours! I was at Mosaic Hospital in St. Joseph MO. and they couldn't have been better or smarter, they realized it was way out of there league and as soon as I was stable enough they put me in an ambulance for a 6 hour ride back to Barnes!! It has now been 5weeks and after 10 days in hospital I am home with anti-biotic pump and drains and many doctor appointments!!I can not tell you enough how blessed you were to start at Barnes and now have one of there doctors as yours now!! I keep my story posted at www.catherinedunnagan.com There is a video I made with Dr. Chapman for Barnes on it!!
Can I ask who your doctor is now? Contact me if you would like to talk or share info!
Lots of prayers-Cathy
I was cancer free for 61/2 years and was always reminded there could be one minute cell not visibable to telescope, naked eye,... lurking and they were right!! It took 61/2 years for this cell to show up. I was scanned every 3-6 months, blood draws every month.. during that time and not a flag or clue!! My doctors are focused on the fact that it took 61/2 years to show up is a good thing!
Lots of prayers for all knowing the world of CC!!
I am not sure if I ever thought I would write this statement "it's back", I do know I was pretty comfortable being was cancer free.
I have the usual CC story, I thought I had the flu, which was really a kidney infection, which led to a stent being placed in my ureter, which led to a summer of wearing a urine bag, and then last Monday, routine surgery to fix ureter and remove urine bag stunned my doctor to see the damage to ureter was cancer and Thursday the official diagnose that cholangiocarinoma was in my ureter wall! I am exhausted being made sick by body parts I barely knew exsisted, bile duct, ureter.....
I have my first "Welcome to the world of cancer" doctor appointment tomorrow. Tomorrow can not come fast enough, or it's coming way to fast!!
Hi Frank and welcome. I am excited to tell you that I am 6 years cancer free thanks to God, 2 strangers, and Dr. William Chapman and team at Barnes!
I sent you an email (maybe more than once??!!)
Lots of prayers and HOPE
Jessica, Congrats on new baby and sorry we met this way. I am excited to tell you I am 6 years cancer free thanks to a transplant. I keep my story posted at www.catherinedunnagan.com
Tiffany Snead Schwartes, is in your age group with young children and is 2 years cancer free thanks to transplant, she also did chemo after transplant.
Please contact me if I can help or you would like to talk.
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!!
Posts found: 1 to 25 of 635