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Mar 17, 2018 · Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? in Cancer

Thank you Kanaaz – to be clear, the metastasis is not IN the brain, but ON a bone. Some spreading into the brain can be seen on the MRI, but they are not calling it brain cancer. I've read the article you referenced above. Very technical but I did understand some of it. Prognosis does not sound too good, but then again that can be said for cholangiocarcinoma in general. My oncologist suggested we are probably seeing this rare metastasis because I am living longer than initially expected. At my diagnosis almost 3 years ago, they said I had maybe 2 years, so I'm beating the odds! Thanks again for the information. If you find anything else, please share. ~Kris

Mar 17, 2018 · Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? in Cancer

I just learned Thursday that my cancer has matestacized to my head. I have a tumor on the bone in the left, frontal lobe. This is highly unusual with this type of cancer I am told. A little scary, for sure. I feel grateful I have no symptoms yet – no headaches or vision changes or mood swings. No new treatment will happen, as I am high risk for surgery and am not crazy about the odds of radiation at this point either. So will continue with chemotherapy at this time, and repeat the MRI and CT scans at the end of April to determine any progression of disease. God bless all ~

Feb 23, 2018 · Talking Frankly about Living with Advanced Cancer in Cancer

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

Feb 16, 2018 · Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? in Cancer

I can call you in the morming.  What is your first name and where do you live?Kris

Feb 16, 2018 · Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? in Cancer

Hi -I had my surgery at Mayo in Rochester, MN in May of 2015. I only live about 75 miles from Rochester. My diagnoses is stage 4 also, and I am currently doing quite well. Just saw my oncologist yesterday. Will have scans again in March to see if this chemo is still working. Feel free to reach out if you or your Mom have any questions and I will do my best to answer! Good luck ~

Jan 19, 2018 · Going my way: Decided to stop cancer treatments in Breast Cancer

Hi Kitty,

As Colleen mentioned, I’m also dealing with advanced cancer. I’m in my fifth line of chemotherapy treatment, and it is pretty much the last resort. There is one trial I am eligible for, but I have not decided if I’m going to do it yet. As long as this line of treatment is working, I will stick with it. Just had scans this week and most of the cancer stayed the same – one spot showed some growth, but not substantial. So while I haven’t had to make the decision you have already made, I know the day is coming so it weighs heavily on my mind.

Like you, I am not afraid of death. I’m more afraid of living in pain and extreme illness. I have no children or grandchildren. I worry about being a burden on my sisters who are my support system. Wishing you pain free days and a peaceful passing when that time comes.

Kris

Dec 2, 2017 · Talking Frankly about Living with Advanced Cancer in Cancer

Hi Linda – I love your response. I feel very much the same about facing death. Some people have a very hard time understanding how I can be so accepting. The way I look at it, we don’t have a lot of options. We can either be freaked out and unhappy, or we can choose Happiness – I’ve already looked up Dr. Sood’s book and will be on a search for it at the library of my local Mayo Clinic. Thank you for the suggestion!

Dec 2, 2017 · Talking Frankly about Living with Advanced Cancer in Cancer

I agree with the Sarah Young books. Often I hear the words I need to hear that day – highly recommend! And I agree with Mollie – your friend is lucky to have you!