Checking in from SCCA

DEAR 8800JAK, welcome to our remarkable family but sorry you had to find us. Can you tell us a little more about your Sister's DX. Where is her CC and curious as to why the bone scan? You are the second newbie today from the Seattle area. Gem/Cis seems to be the first cocktail of choice around here. As for the Cancer Care she is at, you want to make sure they are very experienced in treating CC which is still pretty rare. You always want an experienced Hospital and Oncologist. And if for some reason you feel any uncertainty we highly recommend 2nd and 3rd opinions.
Know you have come to the right place for help and support. Please keep us updated on your Sister's progress as we truly care.

Thank you both for your welcome replies.  Regarding DX, primary biliary duct with mets to liver, two lymph nodes, lungs.  Hospitalized for 15 days at Swedish Hospital for biliary duct stenting for obstructive jaundice, followed by sepsis infection.  Ugh.  Bone scan to rule out bone mets.  Walked into hospital but discharged in wheelchair due to hip pain.  Slowly regaining mobility with walker. Learning that hospitals are not good places for rest and healing!

Hi 8800jak,
I wanted to welcome you to this site. I am sorry to hear about your sister. My daughter, age 26, has CC as well. While I don't know about the cancer center your sister is being treated at, I do know about our experiences with Gem/Cis. My daughter was on that for her first chemo along with another chemo called 5-FU. She tolerated all the chemos well. Cisplatin was the hardest on her. Platelet levels tend to dip when on it and they need to be 100,000 or more to receive it. She felt pretty crummy the first few days after chemo then came back around. Make sure they give your sister iv nausea meds before chemo. Lauren always gets a drug called Aloxi, but there are others. Also make sure she has nausea meds for home. We have found Compazine to work the best for Lauren, but many people also use Zofran. Zofran gives Lauren bad headaches. Lauren also lost her hair on this chemo combo, but it has since grown back. She has just been put back on Gemzar so she might lose it again, but if that's the worst of her worries we'll take it! Lauren had the best results with that chemo combination, but sadly cancer becomes smart and resistant and another chemo must be tried after time. I am hoping everything goes well for your sister. Please keep us updated. All the best to you both.
Love, -Pam

Jak,

I forgot to ask, about your sisters stent, is it a plastic one or a metal one and did it help with the jaundice? Sepsis infection, ugh indeed to that! I hope that the first chemo session goes well and please let us know how she gets on with that.

Gavin

Hello all-
Thank you for the words of support and advice.  I am grateful that this community exists.
My sister passed away on January 3, less than eight weeks after her initial diagnosis.   She had two chemo treatments but the cancer was just too aggressive.
I really wish she would have been able to have some quality time after the diagnosis, but it was one issue after another...including a hospital acquired sepsis infection.  In the end, it was a blessing that she went quickly.
May God bless those of you who are suffering with this horrible disease, and those of you who are working to support those who have been diagnosed.

Dear Bob, I am sorry for the loss of your sister and surprised at its suddenness. Please accept my condolences and gratitude for sharing your sisters story.