Just saw the survival rates for fiancé's diagnosis

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Just saw the survival rates for fiancé's diagnosis

by RenForDav on Sun Mar 18, 2018 04:42 PM

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It's been about 9 mos. since diagnosis for cholangiocarcinoma - bile duct cancer. It has a 33% survival rate after 1yr and 10% after 5 years. My fiancé has already had a very serious surgery, chemo treatment and is undergoing radiation therapy right now. It was actually his oncologist who reminded us during our last visit on how fast-moving this cancer is. I think we're both scared now. I don't know how to prepare, or how I should prepare. I don't know if I should let friends/family know the next time they ask if his treatments are "working". It's like after his surgery they all asked if it was "successful"... It feels like they are living in another world than us and that it is like a flu, i.e. something you "get over"

RE: Just saw the survival rates for fiancé's diagnosis

by ToddlerFather on Mon Mar 19, 2018 12:37 AM

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Most of the survival rates we have now are from times with no advanced immunotherapy and no targeted therapies. Also, statistics are good for public health planning, for you what matters is what happens with him.

Sounds like some off-label usage could be worth exploring. 




RE: Just saw the survival rates for fiancé's diagnosis

by survivorliver on Mon Jun 11, 2018 06:59 AM

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On Mar 18, 2018 4:42 PM RenForDav wrote:

It's been about 9 mos. since diagnosis for cholangiocarcinoma - bile duct cancer. It has a 33% survival rate after 1yr and 10% after 5 years. My fiancé has already had a very serious surgery, chemo treatment and is undergoing radiation therapy right now. It was actually his oncologist who reminded us during our last visit on how fast-moving this cancer is. I think we're both scared now. I don't know how to prepare, or how I should prepare. I don't know if I should let friends/family know the next time they ask if his treatments are "working". It's like after his surgery they all asked if it was "successful"... It feels like they are living in another world than us and that it is like a flu, i.e. something you "get over"

Liver cancer survival rates are the worst in the cancer survival rates. When I was first diagnosed I had 20% chance of survial because my liver was clean except the tumor, and 30 days at a time, meaning every thirty days if the dr was happy with progress I had thirty days more. I recently, thanks to the miracle of the little liver pill I held on waiting for, am NED. In 5 years the real celebrating begins, no, really I was told with my cancer and my chemo and the condition of my liver I really should be okay. (?) I know hot pepper sauces helped. I wasn't a candidate for radiation or surgery. It's hard to be the patient. It's hard to be the caregiver. It's hard to be the family, and bless to know or fully understand what's going on because they can pick up on patient doing better, not sounding good, or little things caregiver too close to catch. a wheezing. a stuffed up sound, little things. And yes, if I had surgery my first question would be am I cured. And yes, you need the family support.  Journal everything, meds, surgeries, side effects, dr orders, dr appts, dr comments, insurance info, chemo info, keep a seperate journal of foods and energy levels.

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