Advice for Mom
- This topic has 5 replies, 5 voices, and was last updated 9 years, 9 months ago by
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Hey Maria,
I think Tom maybe right. They possibly wanted your mom’s bili levels to drop before taking any action. My mom’s bili was at 23, and they needed to “decompress” the bile ducts with stents before they would do surgery. I would definitely go back to UCSF and inquire more especially at such a prestigious research facility and hospital, I doubt they will refuse help for you mom.
Serena
Tom, brilliant remark about someone maybe getting confused between not starting yet with a high Billie and I am still sure that a top Hospital like ECSF would treat a patient for high Billie. You must be back at the airport, hope you had a great time and that the break was good for you.
Maria,
Sorry to hear about your mom, this site is a great resource for information and help. I’m surprised UCSF won’t see your mom either, but I’m not familiar with them. I know when my partner was diagnosed they wouldn’t start chemotherapy until his bilirubin was lowered (I believe below 4), so I wondering if that’s what they are saying?
We live in Florida but consult with MD Anderson in Houston, which I realize isn’t practical for everyone but it has worked out well for us but you do have to visit them in person.
Tom
Hi Maria,
Welcome to the site. Sorry that you had to find us all here and I’m sorry to hear about your mum. But I am glad that you’ve joined in with us all as you’re in the best place for support and help and you will get loads of each from everyone here.
I’m with Lainy on never having heard of a hospital refusing t help someone for their bili levels being too high. That seems very strange to me to say the least. I hope that others from your area will be along soon with some other suggestion to treatment facilities that are close to your mum. I can’t really help with that as I am from Scotland.
I do hope that the radiation treatment that your mum is away to start works well for her and does indeed lead to her being able to start the chemo afterwards. My fingers are crossed for your mum with her treatment and please let us know how things go. If you have any questions please feel free to ask and we’ll do our best to help if we can. Please know as well that we are here for you and we care.
My best to you and your mum,
Gavin
Dear Maria, welcome to the best place to be for CC and I am terribly sorry to hear about your Mom. Honestly, I have never heard of a Hospital refusing to treat CC because of high Bilirubin. I know that UCSF is a good place to be and am wondering if your Mom’s ONC can try and get her in there. Who placed her stents? It is a good thing that she wants to eat but if she is loosing weight you might try some nutritional drinks like Carnation Instant Breakfast. She can have it more than once a day or in place of a meal. I really don’t know of anywhere else I would take her in the Bay area as UCSF is very good for CC. Hopefully some others will come along with more information for you. If your ONC cannot get you in to UCSF perhaps he will have more suggestions. Wishing you and Mom the best and please keep us posted. You are not alone in this we all really care.
Hi my name is Maria my mother who is 63yrs young was diagnosed with CC in late July she has then had 3 biliary catheter stents placed. One was later removed because it was not draining enough bile. She currently has 2 stents. Her cancer has metastasized to her lungs, and throat lymph nodes. She will start 15 sessions of radiation next week and according to how she responds with that then she will do chemo. My mom has good health except for this but the past few weeks have been rough her ammonia levels where high so we have her on lactulose which pretty much give her diarrhea. She has lost a lot of weight and her appetite is poor but she till wants to eat and drink. Doctors are not giving us much hope so i wanted to see if their was anyone out there who knows specialist or can give me any recommendations for this cancer. I want to take her to UCSF in san francisco but they said they cant help her because her bilirubin is high at 22. Any suggestions would be greatly appreciated. I live in the bay area in California and i am my mothers full time care giver. I have recently taken out FMLa to care for her as.much as i can.
Thank you all for any advice that can be given.
Maria
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