tiapatty
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Christine,
You have been through a lot already and you seem to be made of some pretty strong stuff. What we all wish for is a cure but early detection would also help, it seems in your case you definitely had symptoms but they could not know until they had progressed.
Others have said it before but you are too young for this but your youth also works in your favor in terms of being able to withstand chemo treatments.
Please keep us updated, we like to keep tabs on everyone.
Patty
Karen,
My mom had difficulty recovering from her surgery and was never really able to complete chemotherapy because of the types of issues your mother is having. I would ask the doctor if photodynamic therapy (PDT) is an option, it is non-invasive and the side effects are minimal. There are posts on here about it, see:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3851
This post is about a study on PDT at UVA:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1455
Patty
Debbie,
I am sorry for your loss and your children’s loss. I read Hannah’s post, she is a very good writer and it was a touching tribute to her father and to you.
Sharing on here is a kind of unburdening so visit when you feel the need for support.
Patty
Carlos,
She may still have what is called “biliary sludge,” see:
http://www.medicinenet.com/script/main/art.asp?articlekey=8573
http://www.annals.org/content/130/4_Part_1/301.full
I would ask the doctor why they think she needs to take it.
Patty
Kaixo!
Did she have to take a bile thinner after her resection? My mom had to take one after her resection and I assumed it was standard procedure.
There is a post on natural bile thinners if you want to try that:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32802
I did a search and some alternative/natural medicine websites have information on lemon juice and beets (remolacha? betabel?) as bile thinners, see:
http://altmedangel.com/liver.htm
You would want to discuss this with her doctor before having her start trying these remedies.
Two years with clear scans and good quality of life is amazing, I think your mom is some kind of miracle, maybe there is something in the water in Euskal Herria, perhaps you can bottle it and ship it around the world!
Agur,
Patty
Margaret,
Sorry to hear this news, keep us posted. I am also wondering if there could be some kind of rewards club for CT and other scans. When you have so many scans you get such and such reward and you move up in rank like we do here on the board. Tom is surely some kind of Scan Master at this point so here is hoping for good results.
Patty
Becky.
It is hard to say, it is entirely possible that your mother could rally again and find some reserves of strength for a while. Hospice should also be able to tell you what they think, though they also cannot know for sure how near the end is.
With my mom she started refusing food altogether and though your mom says she is ready if she is still eating something then that is in indicator. Many on the board report severe vomiting at the end. Even when eating stops the body can take some time to stop functioning, I think my mom went some 13 days with no food, though we were giving her water with a sponge.
You have not mentioned if you have spoken to your mom about her wishes but if you have not then now is the time to do so, as she is lucid and able to communicate.
You will need every piece of strength you have to get through this so remember to take care of yourself as well.
Patty
Adam,
I am sorry for the loss of your Petra. You posted that when she left hospice for a few days she was worried about losing her bed and the nurses said they would not allow it and that really struck me. They had only known her a short time and could not live without her so I can’t imagine the road ahead for you and your children.
It sounds as though you have a lot of support and people to lean on, ask for help when you need it. I am a librarian and had recommended this book before for those with children:
A Parent’s Guide to Raising Grieving Children
Phyllis R Silverman; Madelyn KellyPatty
Erin,
I am sure they will send you some but if you want to see the brochures you can download them here:
http://www.cholangiocarcinoma.org/newsletter.htm
Patty
The obituary has another function other than to inform people who want to attend the services. I am a librarian and we get many requests for obituaries from people who are doing genealogical research so I would second the suggestion to see if it is cheaper to run an abbreviated version on one day and then a longer version on a second day, it will be a lasting written record of your mother’s life and death for generations to come.
It is funny your mom told your dad not to be cheap. My mom also left some instructions about how much money to spend on her casket. It was interesting because when her brother died she wanted the best for him but she told us not to spend too much money on hers.
Patty
