kdhokie
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Patty – did you Mother have the PDT? Since I read your post this morning I contacted Dr. Michel Kahaleh who was the researcher at UVA doing the PDT and was quoted in the article link you sent. I emailed him, and actually got a phone call from him a few hours later. He told me that he moved himself and his research team from UVA to Weill Cornell Hospital in Manhattan because he is working for the FDA to get the PDT cleared and approved.
He said he would see my Mom and try to help her. We want to go but need a few answers like…will her liver begin functioning “properly” once the tumor is shrunk? Dr. Kahaleh told me that PDT works for CC and did not hesitate in his answer. Let me know if your Mom had it done, if you would. Thank you for your message and support.
KarenIke – thank you for sharing your story, and what the surgery and recovery has been like. I am really doubting that my mother, who is strong for her age of 77 yrs, but is now in a very weak state could handle the biliary reconstruction or much worse, the recovery. My Mom had a liver resection in July 2011 and the liver surgeon told her it would be a 6 month recovery period and she is only at 3 1/2 months, and has been through hell with the drains and bilary issues since. I am glad to hear you are gaining strength each day. God Bless. Thank you for your help.
KarenPCL1029,
Thank you for your help, and the information. It amazes me how hard or complicated that CC can be, and seems like it should be easy; i.e. “bile flow through the bile duct…”how hard is that?”We will keep persevering and stay positive. May He bless us All.
Karen
Me again…sorry for the long post. I am trying to figure out if the bile duct reconstruction would be the best thing for her or finding an oncologist that would give some chemo to her with hopes that it shrinks the little tumor inside her bile duct!??!!! Do all oncologist not give chemo when the bilirubin is high like my Mom’s = 16.3?
Thank you for all your information, help and support.
Best to all, and hugs.
KarenThank you to all of you for your loving responses. The 3rd external drain the Interventional Radiologists inserted into my Mom’s bile duct this Monday seems to be working, by the grace of God. They are watching her bilirubin and today’s lab work showed that the bilirubin is dropping….from 15.8 yesterday to 15.2 today. The doctors and nurses all say it takes a couple of days for the bilirubin to regulate or adjust in the bloodstream so I hope they are right.
When her bilirubin is down to 2 or lower, they will do chemotherapy and hope it is next week. We are prepared to seek the 2nd opinion but at this point, if the drains are working and she can get the chemo here than we are comfortable as what she will receive is the same as what I have read on this blog (gemzar and the other chemo that goes well with gemzar).
This is truly one tough cancer and it seems to present so differently in each patient. I keep telling my Mom that she has not lost this battle yet and to keep fighting each and every day. She is thankfully digging in and prepared to kick it’s butt while she can!
Thank you, again, and I will stay in touch and keep everyone updated on my Mom’s progress.
Hugs.
KarenNancy,
What wonderful news to read! Thank you for sharing this positive message with us! We also live in Richmond, Virginia. My Mom just had a liver resection in July at Henrico Drs. Hosp. by Dr. Mendez and Dr. Layman. They are both top notch liver specialists/surgeons so she was in good hands. She is now at home, and still draining. She’ll have radiation and take Xyledol chemo pills for 6 weeks once the radiation begins – after the draining ends which we hope is soon! Congrats again, and God Bless.Karen
Margaret and Marion – thank you for the information you provided. I am my Mom’s biggest Advocate, and will continue to do so. My Dad passed this past April so this year has been a rough one for us. He passed away and we learned that what ultimately knocked him down was cancer of the biliary system. This was learned after he passed and we had a biopsy done of his liver. Then three months later, Mom finds out she has Cholangiocarcinoma – a cancer of the biliary system! Absolutely bizarre….and we believe it must be environmental but what???
Peggy – my heart and prayers go out to you and to your husband. I will also pray that there is a clinical trial for him. Keep the FAITH!Karen
