middlesister1

Dear Catherine,

Welcome. I saw the “88” and right away thought of my daughter who was born in 1988. My mother was diagnosed in Oct. 2013, so she has been adjusting to her beloved grandma having this disease. I am truly sorry that you are facing this, and especially while your mother is young.

Unlike your mum, my mother was not able to have surgery. After opening her up, they saw the tumor was in a place that made it inoperable. So, it is very true that they can not see all until they are in there. We were given a very grim prognosis (about a year), but at 18 months, Mom is feeling great and we’ll be going on a vacation in April. The statistics do not tell how everyone will do. They are also behind in that they are looking at people who were diagnosed years back. What I learned is to appreciate each day with my parents, but not because they won’t be around long, but because I love them so much.

That your mum had surgery is so encouraging. I do agree with Lainy that most seem to have scans every 3 months. I would question that, and also would suggest getting a second opinion at a hospital that is very familiar with CC.

We care and please let us know how you and your mum are,
Catherine

Hi. I tested the upload for pictures under members cafe. Works great! Thanks Rick.
Catherine

Dear Henrietta,

Welcome to the CC board. From your introduction, I can see how much you have done to help Paul maneuver through this journey. We always recommend second or even third opinions, and it appears you made sure to get those.

I’m glad to read that he is feeling better recently. I admire not only Paul, but the wonderful attitude you have as well. It is scary for both the patients and caregivers, and I’m sure your “Sunshine” means the world to your brother.

Take care,

Catherine

Hi Judy,

Welcome to the board. I’m sorry I can’t answer about the TACE, but if you use the search function at the top of the forum, TACE should come back with many hits that may help you out.

My mother had SIRT (radioactive spheres) in conjunction with xeloda. She did have nausea for a few days and then fatigue for 6 week, but so far results seem to have made the procedure well worthwhile.

I did not see CBRT on homepage. Is it a variation of SBRT?

Treatment Options: http://cholangiocarcinoma.org/the-disea … t-options/

Good luck,
Catherine

Dear Stevie,

Welcome to the group; we are always here to listen. I’m glad that you have seen on this board, that not all outcomes are as dire or hopeless as some statistics (or even doctors) may lead you to believe.

I hope that come 3/10, you will come away from the appointment with a plan on how to move forward. I think we all agree waiting is lousy (scan anxiety is a good example). Please let us know how you make out.

Take care,
Catherine

Dear Colleen,

Thank you for letting everyone know how well your Mom is going. We are so happy for you and Looking forward to many more positive reports in the future!

Take care,
Catherine

Serena,

The dexmethesone was added to my mother’s second treatment routine after she had a very rough time with the first one. Also added to her second treatment was a liter of IV fluids prior to chemo. It seems each doctor may have different protocols. What ended up working for Mom was-

Prechemo:
Zofran 16 mg by mouth
Dexamethasone 12 mg by mouth
Reglan 10 mg by mouth
EMEND 150 mg IV over 30 minutes

Prehydration- 1 liter normal saline over 1 hour

after chemo (Gem IV- 30 min/ Cis IV – 1 hour) there was another 1 hour liter of fluids with a few things added in it to help flush out chemo.

At home, on days 2-4, takes the steroid (Dexamenthasone).
Reglan- every 8 hours, Zofran every 6 hours.

They were long days, but we got into a routine and they always gave us a large cubicle since it seemed all the kids would stop in at some point during the day. Mom also did so well after they adjusted hospital meds and added steroid, that last few treatments she didn’t need the Reglan or Zofran at home.

I hope the vest keeps her warm!

Catherine