willow

I would like to add my opinion that Y90 is not easy on my sister or my friend who both u set went it in Jan and are only 50 and 54 years old respectively. Additionally, my almost 90 year old father has Alzheimer’s and is under my care. I’m sitting in the OR recovery room w him right now after a painful but minor surgery. This surgery is necessary because his short term memory is no good and he has dAmaged his body repeatedly pulling out his Foley catheters (and the Occasional IV). Cath is for enlarged peostste and likely prostste cancer (they dont treat for this at his age) I’m starting to pray that God will take him sooner than later so he doesn’t have to suffer the progression of any of these conditions. Also, two years ago when his drmentia was only early stage, he created a “directive To Physicians” stating that if there is no chance for a cure that he just wants palliative/comfort measures. this makes my redponsibikity as medical power of attorney much easier. so we have a DAnR and recently created a POLST (Physicians Order for Life Sustaining Treatment) which very specifically spells out which measures we do and do not want in the event of a life threatening condition. That said, each family must make this very personal decision. Bless you and your Mom
Willow

Mandy, I don’t know about the blood thinner but wanted to say I’m thrilled you’re saying through treatments so far! Keep it up! Willow

Annie, please accept my heartfelt condolences on the loss of your dear brother. You truly define what a loving and dedicated sister is.

Yes, these studies are crutial. Seems There’s no way really (in the US) to test for or determine if someone has had liver fluke infection by the time they have CC. I wondered if maybe my sis picked up liver flukes eating sushi but well never know because they don’t test for it.

May i suggest simply honoring your beloved Mother by creating a webste and then linking donations to The Cholangiocarcinoma Foundation. the CCF IS It highly organized, reputable and directly funds CC research. Please contact board members who can answer any questions or concerns you might have about where the $ goes.
Sincere hope for a cure for your Mom and all those with CC, Willow

You’re an inspiration to live a healthier lifestyle and stay positive! I’m going to share your site w my sister who has ICC and though she us nit a candidate for surgery, has a young child to live for . Thanks for your post! Willow

Thanks, Percy!

My sister is not eligible for surgery and didn’t make it through an entire cycle of Gem/Cis before Drs at Stanford shifted gears and did radioembolization with yittrium 90 microspheres . This wS because chemo was making blood counts too low and tumors were not really shrinking. big tumor in portal vein was biggest concern. The y90 spheres are placed in the blood vessels that feed the tumors. Not sure if they’re used for bone mets but they are used for liver mets. She is waiting for scan in about a month to see results . Best to you and I hope this helps! Willow