Topic: Checking in from SCCA

Hello all.  My sister, age 41 was recently diagnosed with Stage IV CC.  This came on suddenly and is quite a shock to our whole family.  It is my first direct experience with any type of cancer and I'm trying to learn as much as I can in order to be helpful and supportive.  Today I am sitting with her at the Seattle Cancer Care Alliance awaiting a bone scan and her first chemo treatment with gemcitabine and cisplatin.  I would appreciate any inside information/experience about this place or these drugs.  Thank you for this site.  I haven't explored it fully yet but is comforting already just knowing it exists.

Re: Checking in from SCCA

Hi,

http://www.cholangiocarcinoma.org/punbb … 198#p57198

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: 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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Checking in from SCCA

P.S. The other new member goes under mtwebster2011 and has a post on from today. You might want to look at it as they are from Enumclaw, WA but in Seattle now. They did research on UW in Seattle and are going there for another opinion, I Googled both places and it looks like they are connected.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Checking in from SCCA

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!

Re: Checking in from SCCA

Oh, man! Those infections are the worst. My husband had a double e coli dance! Again I can only recommend another opinion. What chemo is she on? Best of luck with the scan and the chemo today!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

7 (edited by Pamela Fri, 07 Dec 2012 15:56:29)

Re: Checking in from SCCA

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

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Checking in from SCCA

Hi Jak,

Welcome to the site. Sorry to hear about your sister but glad that you have joined us here as I know that you will get tons and tons of support from everyone here. I came here back in 2008 after my dad was diagnosed and it was the best thing that I could have done. Everyone helped me loads and I know that they will do the same for you as well.

I can't help you with your questions about the hospital in Seattle as I am in Scotland, or with any personal experiences about Gem/Cis as my dad never had chemo. But, tons of our members or their loved ones have or are going through the Gem/Cis combo and I know that they will be happy to share their thoughts and experiences with you. There are many many posts about this on the site and much research info on Gem/Cis as well should you wish to read more about that combo. The search forum function will be of use to you in looking for them. Also, we have a great chemo board here on the site and it can be found here -

http://www.cholangiocarcinoma.org/punbb … .php?id=16

I do hope that you will keep coming back here and please let us know how things go for your sister. We are all here for you, know how you feel right now and we care.

My best wishes to you and your sister,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Checking in from SCCA

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Checking in from SCCA

Thank you Gavin.  Good name!  I have a son named Gavin.
She has a metal stent and it did clear the jaundice, thankfully.
Will let you know how the chemo goes.
-Bob

Re: Checking in from SCCA

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.

Re: Checking in from SCCA

Dear 8800JAK, I am so very sorry to read about your sister. She was very lucky to have a brother like you to walk through this journey with her. Please accept my heartfelt Sympathies.

Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn's rain,
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.                   By Mary Elizabeth Frye

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Checking in from SCCA

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.

Willow

Re: Checking in from SCCA

Dear Bob,

I am so sorry to hear of your sister's passing. May your fond memories of her ease your pain. My heartfelt condolences to you and your family.

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.