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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Due to recent news about new cancer treatments, CCF is gathering information about your experience with genetic testing of your tumor. Whether you have or have not
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Posts found: 1 to 25 of 49
Thanks Marion and Gavin. It has been quite an interesting 6 years. Just want to remind everyone that not all MDs are created equal and some will not admit they are over their head. Find a doctor at a major cancer center. That is your best chance, along with a lot of prayer.
So happy for you Evan! Congratulations on becoming a grandfather. We have 12 grandkids now, 3 added since the diagnosis. So thankful!
Love and prayers for each and every one of you.
My husband will celebrate 6 years cancer free this week. He had stage 4 cc and was treated successfully at Johns Hopkins by Dr. William Sharfman and Dr. Michael Choti. There is hope!
We found out that it really does matter where you are treated. A good community oncologist may not be able to handle CC. Don't take "no" for an answer and get the best treatment available.....and pray a lot! Thanks for all the kind responses.
3 years to the day that my husband was "opened and closed" at Washington Hospital Center in DC, and he was given a terminal diagnosis, he was scanned at Johns Hopkins and pronounced" cancer free" by his oncologist there. He has been clear for 2 years since his surgery at Hopkins. Thank you Lord, Dr. Sharfman, and Dr. Choti! There is hope.
I was so very sorry to read about your Dad. As I said, I have not been on the site in a long time. May God be with you and your Mom and bring you peace and wonderful memories of time spent with your dear father.
Thanks Gavin. We also send our very best wishes to you and yours.
I have not posted in a long time, but I think everyone deserves to hear good news. My husband had a liver resection in July 2008. He had a difficult recovery with the development of a biloma and anemia due to bone marrow suppression from chemo. BUT our latest scan 2 wks ago is clear as have been all the others. Labs and tumor markers also normal. But best of all, he is his old self. Looks and feels great- even tore out a bathroom and put in a new one. God is good. From reading other posts it seems like there is more good news these days. That is truly good news!
Lainy,You may use my postings. I think they pretty much cover our story.
You are right. It is a start. Maybe we could contact our senators and congresspeople also. Randy Pausch went to capitol hill with his story. Since it is an election year, people might be more open to listening.
Your point is well taken on the lack of privacy on the internet. I guess what I was talking about the confidentiality expected of those who participate in forums such as this. While not illegal to disclose information, it definitely would be unethical without permission. And Lainy, it looks like many people have given that to you. And I am not meaning to be negative., but Oprah's show can be "tabloid-ish". Yes, she has a large audience, but who is her audience and are they in a position to help?
I do believe this is all confidential information, or it should be. I have had second thoughts about this project as it relates to Oprah. I do not think it is as appropriate to enlist her help as it would be someone like Katy Couric, who has pancreatic and colon cancer foundations which already exist. In any case, written permission should be obtained from anyone who's whole or partial name, email ID, or initials are used.
Thanks Jeff!! We have only been doing this for 2 years,(if you don't count the year he had the tumor and it was seen on CT but we were not told!) I don't know how you have managed for 9 years. Great job!! You are very helpful and encouraging. God bless you.
My husband was on gemzar for 10 mos.-3weeks on( once a week), and 1 week off. He had the prolonged infusion method, over 90 minutes, which makes it more effective. It shrank his tumor from 8cm. to very small, less than 2cm. It really is a miracle. Then he had surgery at Johns Hopkins, where all signs of tumor were removed. He will have 2 more rounds of gemzar when he is recovered from surgery. It has not been an easy road, but God has been with us through it all. Best to you.
My husband was in your situation last year. Then he had chemo, and in July the tumor was completely removed. There is hope for you. God bless.
My husband is also recovering from surgery. It is tough, isn't it? We had to go to JH yesterday for 2 units of packed red cells because he is anemic. His surgery was 7/8, and went smoothly- no complications. Great care at JH. I hope your husband does well. God bless.
Cannot tell you how sorry I am. You are in my prayers.
Everyone is different. Some people respond very well to one drug, but not another. My husband is in the 20/25% that had an almost complete response with Gemzar. It shrank his tumor from 8cm to a small spot of live cells encased in dead cancer cells. He had surgery and it was removed with clear margins. We went to the doctor yesterday, and he will have 2 rounds of Gemzar as insurance to kill any microscopic cells in his body. Try not to be discouraged because many of us have seen that there can be hope when it looks hopeless. God bless you and your family.
I would be happy to help. I am a caretaker, but also an RN with a masters, in case credentials might get her attention. Not that it helps with this disease.
I think it is a powerful letter and you should send it.
I am so happy for you. Home is good.
You are in my prayers, as is your family.
I am so sorry about your Mom. I lost my Mom in 1994 to cancer. It is very hard. God be with you and your family.
I am so sorry. Your family will be in my prayers.
The swelling in feet , ankles and legs can be from gemzar. My husband had a lot of that. He went to physical therapy and was fitted with Jobst stockings, and took lasix which all helped. But until he was off gemzar, he had it to some degree.
Posts found: 1 to 25 of 49