rowena32
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Lisa, you will be in my prayers tonight. It’s not easy to go through this, but you are strong. Keep up the faith and let us know how it goes.
RowenaHi, Lisa,
I wish you the best with your scan. I agreed that chemo is no picnic. What have they been giving you? I was taking genzar for 6 weeks, once a week.
But I must say the worst part was for them to find a vien. Do you have a port? My scan showed that the chemo and radiation made no difference in the size of the cancer. I have been off of it for two months but will be going back on some kind of chemo at the end of this month. I am hoping to see another doctor for a second opinion before I start chemo, again. I wonder why they did not put in a metal stent for you as they last longer.
Best wishesRaye.
I found your response most interesting. I had not heard of Dr. Hemming. I am wondering why Dr. Lowy from UCSD did not mention him to me when I sent him my reports and talked to him. In order for him to review my records, I, also, had to send him a check for his time ($250.00). If I do not like what I hear from Dr. Venook, I will get in touch with Dr. Hemming. Thank you for bringing him to my attention.
RowenaMarions,
I contacted Dr. Venook on Monday and talked to a Jose and then Robert, Dr. Venook’s “go between” called me Wednesday (1-6-10) and told me they had sent me a new patient packet and some of the things I needed to bring. I faxed my reports to them that afternoon. I will call them the first thing on Monday and will let you know. I am having a hard time reaching the records’ department at Stanford or any department for that matter. I need to know if they will send me my records and what they did with my slides. I will call Monterey, also, and see if they sent them back like they said they would. When I call, I am told to wait for the next available person who never shows up.Lainy,
I did fax my papers to Dr. Hans Lentz at USC but he does the stem cell transplant and since my cancer is inoperatable this was not an option for me. Thank you. Thank you for telling me about the “search button” and I will try it. I am so glad that I found this site. I just wish I had found it sooner.Lalapes, Gavin, and Lisa, thank you for your information. Some doctors do not give a lot of information so I was in the dark that there are different kinds of stents.
May God bless you.Hi,
No one has mentioned a mesh wall stent. That is what I have. It is suppose to last 10 months although the doctor told me 7 to 8 months. He said that if it got plugged, he could go in and put another one inside. Has anyone heard of this stent?Hi, Lisa,
I, also, have a stent but my stent is suppose to last longer than three months. I have what they call a mesh wall stent. I was told it could be replaced by putting another one inside of it. I did not know there were different kinds of stents.
What kind of chemo are you taking? I finished 6 weeks of chemo (genzar) and radiation the last of November. My CT scan showed no change in the size of the tumors in the bile ducts. I’m to go back on the 18th and start another set of chemo. I am hoping to find another doctor before then. One that has treated bile duct cancer before. If anyone knows a doctor in California with experience in bile duct cancer, I would appreciate you telling me.
Lisa, I will pray for you that your stent replacement goes well and that the chemo will show some shrinkage. Let me know how it goes.Lainy and Raye,
Thank you so much for your concern and responses. I have sent my CT scan reports and other reports to UCSan Francisco and Loma Linda Medical Center and got the same response – a transplant would not be an option for me. I even sent my papers to UCSan Diego to Dr. Lowy and a check for him to review my reports. He called me and sent a follow-up letter saying that surgery would not be a good option for me, it would be 5% to 10% chance of making it. I just went to Stanford and they did not even mention a transplant, just more chemo. The doctor who took the biospies sent them to Mayo Clinic to read. At the bottom of the report, it said if the doctor wanted a clinical consultation to call Dr. Gregory Gores or Dr Lewis Roberts. I did call Dr. Gores and he told me that if the doctor wanted to talk to him, he would talk to him. He would not talk to me. I have requested an appointment with Dr. Venook at UCSF and have faxed him my reports but have not heard from them. I did ask if he treated bile duct cancer and they said yes. He is a medical oncologist.
It is amazing to me how good I feel even though I have this awful cancer, but I believe it is my faith in God and all my friends who are praying for me.
I am so glad that Teddy and Raye were fortunate enough to be able to have transplants and are doing so well. My gastroentrologist who finally made the diagnoses said that with surgery there is a much better outcome, but that it was not an option for me. So, he referred me to a couple of oncologists, one for chemo and one for radiation. I guess I am looking for someone who has had successes with chemo.To Marions, Kris, and Gavin, thank you for your welcome.
I was not sure where to post but I thank you for responding. I am from California. I will take Marions advice and post in the general section. I wish all of you the best. Do not give up and keep the faith.
TheresaI have been diagnosed with Cholanglocarinoma. My cancer is in the bile ducts in the liver. I have undergone chemo and radiation and the oncologist wants to do more chemo. I would like to find an oncologist in California that has treated bile duct cancer. If anyone can recommend someone, I would appreciate it. My cancer is inopertable so I have been told my only options are chemo and radiation and now I have had as much radiation as I can have.
