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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.
Posts found: 4
A year ago I was changed from Harvard Pilgrim insurance which always covered whatever my doctors ordered to BCBS PPO which has denied coverage for prescriptions (usually they allow me about 1/4 of the number of pills prescribed), blood tests, and treatments (Cyberknife and RFA). My Onc and I decided to wait on the procedure and he will battle BCBS for me when we feel it's time. I hate BCBS (blue cross bull shit), we shouldn't have to fight with for-profit companies, we're all dealing with enough already. I will suggest you ask your Onc to try to get BCBS to cover it for you.
I was diagnosed with cc 2 years ago, they removed the left lobe of my liver. In March this year a scan showed 2 more growths in my liver, one was treated with rfa the other with cyberknife. My latest scan now shows it's spread all over both lungs. I'm not doing anything about it for the next 2 months, I'm feeling good, so I'm doing some traveling and spending time with friends and family. I'll have another scan in 8 weeks and will have to decide then if I want to try chemo, I'm hestant to do chemo as long as I continue to feel good, I've been through chemo before and I know that will make me sick. I need to find out if radiation to both lungs is a possibility. If I have limited time left I don't want to be taking medications that will make me feel even worse and can't cure me, I don't know if being sick with chemo drugs is worth it to buy a couple of extra months to be miserable for.
My thanks to all of you for your wisdom and help. I met with the Cyber Knife team a few days ago and am looking forward to getting the procedure done. I also met with my Oncologist again, I really wanted to know what my prognosis is, he told me they don't know, it could be months before another growth appears or it could be years, I'm shooting for years. I'm feeling a little more positive about my future, I don't expect to live to be an old lady, but I'm not ready to quit yet either.
I'm joinging this group to communicate with others facing the same disease. I've searched for local support groups but can't locate anything specific to liver cancers. I'm an 11 year survivor of Non-Hodgkins Lymphoma. I was diagnosed with Cholangiocarcoma almost 2 years ago, they removed the left lobe of my liver at that time. I've been getting CT Scans every 12 weeks for the past 2 years and the scan a month ago showed 2 areas the doctors were concerned with. Last week I had needle biopsies done and one of the growths was treated with Radio Frequency Ablation. My second growth couldn't be treated that way becasue it's too close to my stomach, so I'll be having Cyber Knife Radiation done on that one in the next few weeks. The doctors orginally talked about the possibility of liver transplant but have now rejected that. I'm 54 years old and am attempting to care for my aging parents. All my friends and family seem to think that as long as I remain positive I can beat this, but I feel like I need to face reality and accept that I probably have very limited time left.
I'm so glad I've found this group.
Posts found: 4
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