cathy-d
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Hi Iam on waiting list for liver transplant. My tumor is in bile duct and only hope is transplant. I was diagnosed in July 2008. There are only 2 places that do transplants for our disease, it is still considered a clinical trial. One is the Mayo Clinic and the other is Barnes-Jewish Hospital in St. Louis Mo. I am a patient at Barnes-Jewish. My doctor is William Chapman (google him, quite impressive). I had to complete 6rounds of gemcidabean chemo, 6 weeks of radiation with 5FU chemo pump, and a staging surgery to make sure nothing had changed. All of my treatments were bearable, main complaint fatigue achy naseau and all managed with drugs. I then qualified for transplant. While I wait I take oral chemo, Xeloda. I am very lucky because most doctors don’t know this is an option for our cancer. I have been on list for 3 months. I had a MRI saturday and found out no change, which is good. That means for 8 months since diagnosis it has not grown or spread , which is what they want. I can not say enough good about Dr. Chapman or Barnes Hospital, my symptons were just itchy and he knew right away after ERCP what was going on. Dr. Chapman told me that Barnes or Mayo were the only places doing this trial. Good luck, your sister is in our prayers. Cathy spraywedo@aol.com
Hi Jane, I have done all the chemo-gemcidabean, 5FU(pump) and now Xeloda. I also had radiation. I have been sicker with the flu, to see me I look normal not bald or pale. my side effects from a ll of this was fatigue. It took a while to come on and a while to go away. I see you are from Chicago, so I would contact Dr. William Chapman (google him, quite impressive) he is located at Barnes Jewish Hospital in St. Louis MO. He is one of the leaders in this cancer. He is a transplant specialist ( I am on transplant list) with out him I would have no hope. Don’t let chemo scare you it is not what the movies potrait, they have great drugs to manage all the side effects. It is a small price to pay to see tomorrow. Good luck Cathy -spraywedo@aol.com
I also had this went to Dr. had the sit down stand up blood pressure test. Major changes in readings, but he thought gatorade to replace electrolites would help and did. Good luck check with your doctor.
Hi Susan-I was diagonsed because of my itching. My bile duct was blocked. I had an ERCP (stent placement). I would demand more blood work to check liver levels. I was never jaundice, just itchy. Lotions only masked the problem. Call your doctor.
Wow daleymom, my heart goes out to you. I ,too was just a drip away from surgery, all my IVs in place. It has been 6weeks since my first call. I have now been on the list for 2 months now. My MELD is 24 and other tired I am ok. The waiting is unbelievablely strange , your whole life is on hold, but it is my hope. Your dad will be in our prayers and those are our lifeline. Cathy
I am a patient at Barnes Jewish. I can only say stop you need to look no further. They are the best. I was diagonised July 2008 and am on liver transplant list already. The onclogist, and transplant team are world known. My dr is Dr. William Chapman. If you google him you will be quite impressed. It took aprrox 3weeks from diagnosis tohave and start treatment plan. if you want to talk more you can email me at spraywedo@aol.com. I can’t tell you enough this is the best there is. Cathy
I just read about Vincents mom-it sound so similiar, the only difference they knew right away that a liver transplant was the main and only hope. Ihad to go through a week of testing-mri, bone scan,colonoscpy,mammogrom,blood work, counseling etc.. to see if I qualify. Once I qualified Ihad to complete chemo and radiation. After treatment they did surgery looking for no new growth-they didnot care if it hadn’t changed. I was the presented for liver transplant list which I was accepted. People with cc can qualify for extra points to move you up transplant list which I got!! (I will continue oral chemo while waiting)
My doctor is William Chapman MD (apparently world renown) He has told me
most dr don’t even know this exsist as an option to it . Barnes -Jewish St. Loius MO. and the Mayo Clinic are the only 2 places doing this clinical trial for approx. 2 years. My insurance (BCBS) has approved it. I have hope and the only real cure “lots of prayers” Good luck and you are in my prayers.I also rec’d my SSD in record time. I knew nothing about the process but it was so easy. I filled out forms on line and did phone interview and was approved in 2 weeks. I did wait until about 5 months from cc diagnosis to try. I was told there was a 5 month waiting period anyway. We have so much to deal with but this is definitaley worth the time. Cathy
