dsdan1127
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Hi Croline,
just read your post and I certainly understand your frustration. Have you contacted the Mayo Clinic w/regard to a transplant?. Check out their website and contact them. They were very responsive in my case. I left a phone message and sent an e-mail and they contacted me the next day. However, in my mothers case she was not deemed eligible but evetyone is different.
ood Luck,
Regards,
dan
Evan,
Thanks for your response. I e-mailed the main physician from the article you provided and intend on following up tomorrow with a call to the May Clinic in Rochester. My intent is to see if my mom would be a candidate for a transplant, or any other clinical trial that the center may be running. A co-worker has a brother in-law that works at the Rochester location and he said he too would reach out to the physician tomorrow.
Obviously there are a lot of questions that need to be answered to determine if she would be a candidate, including the advancement of her disease, but it provides us with an additional possibility and “hope”. I need to do some research on PDT therapy as well as other trials available.
I will keep everyone in the loop.
Regards
Caroline,
Also wanted to reply regarding the liver translant at the Mayo Clinic. I will investigate that as an option, however our doctors at Sloan as well as MOunt Sinai, advised us that she is not a candidate due to the disease. They referred to it as the Mickey Mantle syndrome. You may recall that due to his celebrity statis, he was put at the top of the list for a liver transplant. Within months of the procedure, the cancer was int he new kiver as well as in other organs. As such I am extremely suprised to hear that someone with CC received a transplant. I would be very interested in knowing the details in that situation.
Thanks again…
Hi Caroline and thanks for the response to my post. We are currently being treated at Memorial Sloan Kettering, however I do intend on checking out the other institutions you mentioned. Who knows what new therapies are out there. I started reading the blogs on the Photodynamic therapy. It will give me something else to ask the doctors about. Also will look into whether it is being offered in the U.S. at all.
Regards
Hi Hans, Caroline,
I too am new to this site. Wish I new about it earlier in my Mom’s diagnosis. She too was in the Sorafenib trial, unfortunitely due t a rise in her bilirubin level from 1.8 to 2.8 after a week of treatment, she was dropped from the trial. She is not taking Xeloda (started today, 3/31/06). Her first course of treatment was Gemzar (aka Gemcitabine) and it was found that in her case, although she appeared to be feeling better, several of her lesions in fact grew. Hopefully we have better luck with the Xeloda. There really are llimited options for the disease due to the toxicity issues surrounding liver disease.
Hans, good luck on your new course of treatment and stay positive. And Caroline, ,hopefully the positive results from Sorafenib hold true for you.
Dan
