@allisonsnow

I'm glad that you checked in with us. I've thought of you often. I so sorry to hear that the recent scans did not show improvement. I can't imagine how difficult that was for you to hear. I can also understand your unwillingness to be a guinea pig for a treatment without a track records - I think most of us would choose quality of life.

When the doctor said that you were handling the side effects of treatment well, do you think he meant that your blood work does not show serious problems with your current treatment?

I think we all have the "but you look so good" problem when we face the world with our best face forward. I'm sure that family and friends do not realize how much effort cancer patients put into "looking good" and putting forth a good image. Please know that we want to continue to care and support you during this time.

Will you please keep in touch and let us know how you are doing and how the treatment is working?

Teresa

@allisonsnow I know what you mean about being a guinea pig as well, BUT, I am currently receiving chemo that is NOT meant for my type of cancer (cholangiocarcinoma or bile duct cancer) and I am doing better than I have for the past year. Hard to believe, actually, how good I really feel. That being said, you just never know. My quality of life is pretty good. I also understand what you mean by everyone saying how good I look. I like how Teresa said people have no idea how hard we work at trying to look good before going out (at least most the time). You just have to do what feels right for YOU! Good luck and keep us posted what you decide. ~Kris

Hi dear Allison,
Nobody wants to be a Guinea pig not even a Guinea pig himself when it is about trial & experimental medicine. Last year one of my oncologists wanted to put me in such a program with experimental chemo treatment. I am a very positive person, so I was really happy. I went home & took a piece of paper and wrote down the positive aspects, then I tried to find out more about the medicin, if it has been tried on human beings, what reasults & so on, then I wrote down my worries... for the next two days I went back to the paper & added or omitted some points. I called the oncology & I met my good doctor. I was prepared & asked my questions, wrote down his answers or lack of information. He was really surprised but I thanked him, went by my contact nurse & told him that I wished to change my doctor immediately. She asked me why and I told her that my Oncologist was not prepared, he hadn't read my cancer history, the different chemo treatments and the results. That he wanted to put me on an experimental treatment without all the facts& that is why I didn't trust him. She without any hesitation came forward with a list of oncologists working and told me a little about their speciality. I chose a new one & the first thing he did was to take me away from the list. According to him there were at least, three new chemo treatments that I didn't tried yet. I tried one last year until recently and hopefully would try the pills variation from Tuesday.
What I mean is that write down your worries, facts or lack of facts, do research and then say yes or no. Don't let bad bed manners of a doctor persuads you to make a choice based on your feelings. That luxury, we don't have, sorry. I am right here on the same planet, little longer away but with the same hope and dreams, to survive once more, have fun on Xmas day with the young & beloved ones. Lots of hugs,

thanks for your encouragement I also had a Dr./resident that the first time he looked at my file was as he walked into the room so I can connect with your feelings there. I also have insisted on a new oncologist, since my old one left the clinic (loved him) I have gone thru three. I know what I need and won't settle for less. My last appt. I had a sub as my Dr. and wasn't impressed. Research is my middle name especially since I have a very rare cancer, most dr.s don't even know of it, if I wanted to find out everything there was to know and where the best treatment was I had to do it myself. I already knew exactly what research study/trial they used to determine what drugs they tried the first time. Still don't know what I am going to do but I am waiting to hear what my chemo oncologist will say and maybe he and I can discuss in more detail my scans and the radiologists findings. Thanks again for EVERYONES support

You are brave and I love your attitude! Keep it up. If more people were like you, it is my feeling we would have better health care across the country.
You deserve a cyber hug
linda

Thank you Teresa knowing there is someone out there that understands REALLY GETS IT! is a comfort. Not that I would wish cancer on anyone but we all do belong to the same club, sometimes we need support and sometimes (if we are lucky) we are able to support others. helping someone get thru a rough day can help to make us feel worthy, to feel needed and sometimes that is all we ask. To everyone out there have a good night (you should be asleep !)

Hi Allison@allisonsnow

Yes, when we talk (or post) with others who "get it" it really does make a difference, doesn't it? You have helped many people through your posts. That is what makes Mayo Connect so great - we are equally supportive of each other when we need it.

Teresa

Hi Krishh
I'm Lean from Singapore. My husband has the same type of stage 4 cancer since 2015 Sep. He had whipple operation as the first course of treatment and chemo subsequently using similar drugs like yours after a relapse. I thought Immunotherapy would be the last form of treatment he can try since it has given hopes to so many other types of cancer patients. Why were you rejected for immunotherapy? Did the doctors tell you why? Does it mean immunotherapy can't be applied to all cholangio patients?

Krishh
Thanks for sharing.
You mentioned above "chemo that is NOT meant for my type of cancer (cholangiocarcinoma or bile duct cancer) and I am doing better than I have for the past year..." Please may I know what chemo drug are you using?

Hi Lean,

I don't think that immunotherapy is off limits to others with cholangiocarcinoma, or they wouldn't have had me tested. My two cents. I just didn't have the right make up for therapy that is available here at Mayo. I may be eligible for other trials, so always worth the testing.

Currently I am getting Abraxane and Gemcitabine. As I understand it, this is "meant" more for colon or pancreatic cancer, but it has been working for me since late fall. I recently have been having some pain issues and yesterday my blood work prior to chemo showed elevated enzyme issues in my liver, so my oncologist ordered scans for this morning, So we will see what is going on, if this line of therapy has quit working, or if the elevated enzymes were just a fluke.

I hope that answers your question. Good luck to you!

Kris