December 29, 2006 at 6:17 am #13659jmoneypennyMember
That’s great that your mom has had some success with Gemzar, and she’s 81! She must be a very strong woman to be able to withstand chemo at her age. Congrats and best wishes for the future!December 29, 2006 at 4:17 am #13658granny1925Member
Well it’s been 8 months since first diagnosed. Went through first round of chemo with Gemzar and PET scan showed tumor in liver gone and tumor in bile duct stayed the same. Starting second round with GEmzar hopefully will also have goon results.September 27, 2006 at 11:23 pm #13657granny1925Member
hi My mom is 81 and she has been diagnosed with cholangiocarcinoma. she also has compression fractures in her back. Tomorrow she goes for a balloon kyroplasty for her back and then next week we start with Chemo. Most likely Gemzar. Has anyone had success with Photo Dynamic Therapy?? She had a metal stent placed in the end of July if that makes any difference? Also we are looking into a place in Germany for theapy the Leonardis-klinik. Any suggestions thoughts ideas??
SuzanneJanuary 29, 2006 at 6:16 am #13656edithMember
My husband, 39 years old has been diagnosed with Advanced Cholangiocarcinoma on Oct. 5, 2006. It had spread on his stomach lining and in his lungs. He had ERCP on Oct. 7th, had Laparoscopic surgery the following week and started his chemo on Oct. 31 and Nov. 1, ’05, bi-weekly–Gemzar and Oxaliplatin.
He went to work on Oct. 5, (feeling really sick the day before) so he went to the ER. At first, the doctors thought he had hepatitis but after running more tests and CT scan, they told him that he has cholangiocarcinoma, that same day. Life has been changed completely since he came home from work that night!
He is in the navy, stationed at the National Naval Medical Center, Bethesda,MD. where is being treated. His oncologists are from the National Institute of Health. He had CT scan on Dec. 20th and so far his cancer is stable.
Best regards to all. I hope that you will find the best care/cure and continue fighting this dispecable disease! I KNOW, I AM!
Edith (Annapolis, MD)January 22, 2006 at 5:25 pm #13655dbulmerParticipant
Hello All, I just came across this website and registered today. My Dad, 76 has been diagnosed with cholangiocarcenoma. They have found some cancer spreading to his regional lymph nodes as well. He isn’t in great health overall, and doesn’t look to be a candidate for any major surgery. For me, this site is about education and learning everything I can about helping my Dad down a difficult road. Hopefully the insight of you folks, this website and others can help us to help Dad with some tough decisions that he is facing.
To those who started this site – Thank you. I have already forwarded the URL on to my 5 siblings as well.January 19, 2006 at 6:04 pm #13654ukmemberMember
You seem to have had a good outcome from your treatment. How are you feeling?
As I understand it you had four drugs together every two weeks. Were the side effects very severe? Are other people with your condition on the same regime and is it effective for them?
The disease in the liver in stable and all metastatic cancer had gone. What do the doctors say you can expect from here on?January 19, 2006 at 2:27 pm #13653susaniMember
Thank you so much for starting this website. It was something I wanted to do months ago but battling cancer is a full-time job and I just never got around to it. My husband (41) had cholangiocarcinoma and tragically died on November 29, 2005. He lived 14 months after his diagnosis. I really hope this website can help others fight this disease and even beat it. I wish all of you the best in your struggles. I will post more on my husband’s story under treatments so hopefully others can learn from his experiences.January 16, 2006 at 8:10 pm #13652alexgrayParticipant
I would like to introduce myself, but before that like to thank Kelley, Stacie, Mark, and everyone else involved with cholangiocarcinoma.org.
I am now 40 and was diagnosed around mid July 2005 with cholangiocarcinoma. At that point I had I believe 5 tumours in my liver, about 6 tumours in my spleen and several lymph nodes involved. On July 26th, 2005 I started chemo after seeking a second opinion. That chemo was every two weeks and comprized gemzar, oxaliplaten, avastin and Tarceva. On Sept 6th, 2005 a CT scan showed most metastatic cancer to be shrinking (80%) and of the liver tumours only 2 had any sign of shrinkage, around 20%. On NOvember 28th, I had a CTPET scan and all of the metastatic cancer aprt from one lymph node was no longer detectable on either CT or PET. The disease in the liver was described as stable. Since the ends of October the Oxaliplaten was replaced with Xeloda because of liver toxicity and concern about peripheral neuropathy. Admittedly, the xeloda has most liukely been more off than on because of side effects.
I probably shouldn’t be writing all this here as Kelley asked for website suggestions, but I guess this is my introduction.
Keep up the good work you guys and my best wishes to all.
Alex.January 16, 2006 at 3:29 am #13651kelleyMember
I just wanted to say how glad I am to be able to get on this site and see what kinds of things you are all doing. Isn’t it interesting that we are all dealing with the same disease and yet our doctors seem to handle things differently? That’s why it’s so good to hear from you. I think it helps to give us all hope. I wish I knew how to answer all the questions that are asked. The good thing is that the more of us that gather on this website, the more information from different places in the world we can receive, and the more chances there will be for someone to be able to answer our questions. Keep the information and good vibes coming. Know that we are cheering for each of you and your loved ones.
Love, KelleyJanuary 15, 2006 at 3:01 am #13650hconnerMember
Hello, everyone. I am very happy to find this site and I share the optimism that you have all expressed in the early stages of this forum. I was diagnosed originally on January 7, 2005 with a large (8cm) tumor and several smaller ones in my liver, presumably metastatic. But after running me through many, many tests, it was determined that I had cancer of unknown primary source. After the pathology from my surgery in August, during which the large tumor was removed, my diagnosis became cholangiocarcinoma. I have numerous very small lesions on my liver that are not visible in CAT scans and do not “light up” on PET scans. I have responded very well to a chemotherapy regime of gemzar and taxotere (docitaxil). At this point my doctors are trying to develop a next step treatment. I have responded well to the chemo and surgery to date, but am concerned about what the future holds for treatment in terms of short term and long term effects.
Tierra Verde (St. Petersburg), FloridaJanuary 14, 2006 at 10:57 pm #13649vmccreaMember
My name is Valerie McCrea. I am 37 and was diagnosed with CC on Oct 21, 2005. I am on Gemzar/Oxil and Avastin, I have tumors in my liver and 2 lymph nodes by my Pancreas. I also have some seeding on my diaphram. I am being seen by Cedars Siani Hosp. in L.A. Dr Drazin 310-385-3343. I have had 5 rounds of Chemo. My sixth will be Jan 17th. I had a PET/CT done a week ago. Pet showed cancer activity down. CT showed stable but slight growth in a bigger tumor. I feel fine. No real side effects from Chemo. Next scan in 4 weeks to see where we are at. I am getting a few other opinions right now as well to confirm or not… whether I am on appropriate treatment.
Stacie-This is great! Thanks for putting this together.
ValerieJanuary 14, 2006 at 7:15 pm #13648rpratkoMember
Hi everyboby! My husband was diagnosed with cholangiocarcinoma on nov 28th 2005
and was an excellent canditate for surgery(whipple). Alot of these message boards
concentrate primarily for cholangio that affects liver his did not it was in lower region
and called common bile duct., affecting pancreas,gallbladder stomach and small instestine. I wastold this is very rare? Is anyuone famailar with this type of cholangiocarcinoma? Any help would be greatly appreciated I am feeling very alone and answers are hard to come by. Thanks!!!!! Nice to see another board!January 14, 2006 at 2:13 am #13647lainyParticipant
As a Caregiver for 5 months, I am HAPPY to see this site. We still have a lot of recovery goin on but are blessed that my husband, 73 years old, is now Cancer free. We have lived a nightmare since August and I feel like a “cancer bile duct pro”! He had an aborted surgery after 4 hours in August as dye leaked on his pancreas during his endoscopy and destroyed his pancreas. Then he had 2 e coli infections before his “real” surgery October 3rd. We were out of town for all of this, a 2 week vacation turned into 10 weeks. On the plane ride home October 29th the tubes came out of his stomach and I am sure Midwest will never let us on again! In November he developed a hole at the new connection and spent 1 month on IV only, no water, to try to heal the hole. We will know for sure in 2 weeks. The worst is continual hiccups and itching. Any feedback would be appreciated.January 13, 2006 at 11:44 pm #13646mzpatzeeParticipant
This is a wonderful way for people to come together and share information. Thank you for taking the time and energy to put this site together for the benifit of our families, caregivers, and all of us diagnosed with cc.
My name is Pat and i am 64 years old. I was diagnosed November 2003. I will have to go over my records to get the information on all the chemo treatments i have been on. I promise to do that soon. My tumor has advanced into my liver and continues to grow. My Dr says that stage one clinical trials is my only hope. I feel and look fine. I have no pain and the only ill effects have been from the chemo. I am off chemo now and other than feeling anxious and depressed I am doing well.January 13, 2006 at 6:45 pm #13645kwilliamsParticipant
Hi everyone, my name is Kellee and my mom, 65, was diagnosed last fall with Cholangio. we don’t think it has spread beyond the ducts yet but as they say they don’t know for sure.
Anyway I wanted to share information about a treatment that my mom will be receiving in the next few weeks…PDT. Photo Dynamic Therapy. She will be injected with Photfrin (sp?) a substance that collects in cancerous cells and makes them light sensitive. She will then go in for an ERCP and our doctor (Paul Yeaton at the University of VA medical center) will put a special light down and turn it on. The cells that absorbed the photofrin will die. The only gets rid of the cells the light touches but it is a life extending treatment that isn’t painful and doesn’t have too many side effects as with Chemo and radiation.
The mayo clinic in MN offers this treatment as well, I think. Feel free to email or post with questions.
By the way–great website! Please let me know if there is anything I can do help out and make it even better.
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