Desperately seeking support

Thank you Laney for your kind words.

Hi Michelle,
I am sorry, I took so long to respond to you. First of all, I hope your mom is doing well and she enjoyed her trip!
My mom received radiation and chemotherapy at the same time. She received total of 28 sessions of radiation and chemotherapy once a week for 3 weeks, with one week off for approx 7 months. She was supposed to go 8 months, but she decided she had enough. She tolerated both treatments fairly well for about 2 or 3 months, but then complications one right after another. My poor mom was hospitalized approx 10 times in 18 months, most of the time because of the side effects of the chemotherapy. She went thru hell. She then finally decided she had enough and requested to stop chemotherapy. She got about one month off, then repeat PET scan and CT scan. The oncologist was actually surprised that the liver had improved significantly and that the tumor appeared to have shrunk and was not seen on the scans. He wanted to see her again in 3 months for repeat scans. Then about one month later, I noticed she was jaundiced, called oncologist, they scheduled another CT scan and they found that her bile ducts were occluded. She then was scheduled for ERCP, resulting in 2 plastic stents. They could not insert metal stents because the ducts were too narrow. We could not believe in just one month, how she can go from a clear scan to occluded bile ducts requiring stents. From then on, she became sicker and more hospitalizations due to infections from the stents.
Michelle, the stents, especially plastic (because they are smaller in diameter) are prone to infections. My mom became septic, ICU for almost a week, then it was down hill from then on. I think she was just so sick of being sick and spending majority of the time in the hospital.
As I stated, before she was diagnosed, she was her normal self, active, no pain. She was completely symptom free. But, in her case, it was after she received the treatments that she became so ill.
So, in hind sight, I think, if we could go back in time, I think my mom would have chosen not to receive treatment, given the difficulty she experienced from the radiation and chemotherapy. But, when you are told that you have cancer, you initially want every treatment that is available.

Everyone is different Michelle. My mom just did not do well with the treatments given to her. Especially after the stents were placed. But every person has different experiences. What we learned from our experience is that quality of life is so much more important than quantity. We, especially myself was so not ready to give up and did not want to lose my mom and encouraged her to go through the treatments. But, I saw my mom suffer so much that I wish I can go back in time and knowing what I know now, realize early on that quality of life is more important. Sometimes I feel so guilty, but I know that will not bring my mom back. I miss her everyday, but I know that she is with God and is not suffering anymore.

I hope your mother stays well. Don’t be afraid to ask questions. You are your mom’s best advocate. But, if you feel like crying, cry. It is a tough journey.
Stay well.

Anna

Hi Michelle, I know, all this can be overwhelming. I also have extrahepatic and have metted to the lymph nodes. I was briefly given hope for surgery, but once it metted that option was taken.
There are many of us who are living with this disease, so there is hope. And so many of us have tried different treatments, so hopefully you can get answers to any and all questions.
Percy has answered better than any of us, I believe. I just wanted to say hi and offer my welcome as well.

Hi Michelle,
So very sorry. I must say that your post almost mirrors my mom’s journey. At first, I too spent every chance I got on the internet looking for more information about this cancer. But, this site is such a good resource. Wonderful people here with great advice and support.
Unfortunately, my mother passed away over 7 months ago. It was a very difficult journey.
My mother’s tumor was centrally located, did not qualify for surgery either. Tumor was about the same size as your mother’s. She went thru chemo and radiation, which was hell. When she was diagnosed, she was completely asymptomatic. They actually found the cancer by accident. But probably about one month into the radiation and chemo, she became ill, in pain. Everyone is different. Some tolerate treatment well. But in my mother’s case, she did not, but she completed chemo for about 8 months. Then a month after her treatments ended, she became jaundice and required stents. One thing about plastic stents that my mom experienced was that fat that the clot off easily. Watch your mom for fever, chills, nausea, vomitting, abd pain. If symptoms occur, please call MD immediately. My mom actually became septic and required a week in the ICU because of the infection.
It’s a tough road, but with you by her side, she will be stronger knowing that you are there for her, by her side, every step.
I often felt so helpless, seeing my mom suffer as she did. This is a terrible disease and I hope they can find more effective treatment.
I hope your mom has fun in Vegas, hopefully bring back from $$$.

Hi,
You mentioned it may be hilar CCA,thus the tumor originated at the Y site; they are the bile ducts just EXIT the liver and the left and right bile ducts join to form the common bile duct. And hence called extra hepatic CCA.
IF I were you, I will seek Northwestern IR consult first, then Univ. Of Chicago consult of systemic chemotherapy to follow.
Chemotherapy to follow or not is not absolute ; may increase the quantity of life but will decrease the quality of life. I personally will not consider this until I absolutely have to.
As most of us know by now, all this chemotherapy,targeted therapy, interventional and oncology radiation treatments are ” palliative ” in nature; even liver resections, the medical community does not call resection a cure, but “possible cure.
I myself regard the CCA as a chronic disease with emotional roller coaster rides.

God bless.

Hi Michelle,

Can’t add much to what you have already gotten from Percy and Lainy, but would also like to welcome you to the “club” none of us wanted or expected to belong to, but I assure you that you will be glad you are here. We all understand and care and the support you will get here is phenomenal.

I am glad to hear that at this point your mom is feeling good and is doing what she has always wanted to do. We never know where life will lead us and we need to enjoy the time we have.

Take care and keep us up to date on how things are going for your mom.

Love & Hugs,
Darla