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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
had any genetic testing it is important to answer the questions to help us make progress in cancer research.
Take the Survey
Posts found: 7
Yes, I had hoped for that. However, recently I had no job b/c I was fired when boss learned of my cancer dx , I owned my own car which was considered property and that was an asset, so it was denied. Sherry
Thanks Pam. My platelets are checked every 2 weeks. They have risen from 50,000 to 87,000 thanks to Chinese Herbs and faith. I hope your daughter is doing better. Where does she get her treatment?
Joe, thanks for your story. Faith is a strong component in this journey. I was given similar prognosis and am still kicking butt. It is a very frustrating roller coaster. I am most discouraged by the insensitivity of my insurance company as they restrict coverage to the local area. No specialists here. My platelets have been too low for 12 weeks and the docs are content to wait it out. Without my faith in God, I couldn't handle this. But I am looking at other centers and trying to find out if any have special rates for people without proper insurance coverage. In the past 8 months I've lost my job, got medical bills out the ying yang and can't pay my mortgage. But I have courage and faith. Best to you my friend. Sherry
Thanks for your responses. I am trying to get appt with Johns Hopkins for 2nd opinion. It's been frustrating over past 12 weeks not having chemo and doc wants to wait until platelets come up (thinks spleen is eating them.) or wants to wait for disease progression! As of 3 weeks ago AFS was 13, CA19-9 was 28 and CEA was 3.6. I have huge tumors in both lobes and little lesions all around. No evidence of lymph node uptake. No co morbidity. Any advise is appreciated. Looking forward to sharing and receiving info.
I have been under the care of oncology team without Cholangiocarcinoma expertise since 9/11 diagnosis. Two rounds of gemzar cisplatin and two rounds of radioembolization later my tumor burden is shrinking without uptake outside the liver. Markers are within points of normal range. Problem is that docs have ruled out further chemo to wait for platelets to come up. All other counts are within normal range. Also am not candidate for resection. 12 weeks post chemo and they are out of suggestions. Pretty much feel like they are putting me out to pasture.
Anyone know of centers anywhere that might help me maintain or improve current status?
Just wanted to share that the Social Security Admin has put CC and liver cancer under a compassionate ruling status. This assures that your claim should be processed without waiting, denial or need for an attorney. You still have to wait the 5 months after approval to receive money. Bless everyone !
I was diagnosed in 9/11. Had good response to chemo and radioembolization, but my oncologist doesn't seem to have any more options for me. Looking to learn more about what's out there and how to challenge HMO Insuance company to allow me to be seen by out of network liver cancer specialists. There are NONE in South Florida!
Posts found: 7