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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 7
Yes, Becky has gotten 2 chemo treatments so far. She is on her off week and will start back next Thursday. Both treatments were in hospital and no major side effects! That is the good news, the bad news, dismissed from hospital Thursday a week ago, after being out of the hospital 3 days , back in on last Monday from dehydration, highest billirubin since diagnosis (27) and low hemoglobin. Got blood and Iv's and an ultrasound and found drains had slipped down . Yesterday had procedure to reinsert drains and has been bleeding into her bags since. She has had this procedure done many times, never have we seen blood in the bags before. Keeping her in hospital to monitor blood . Onc is not concerned but doing labs to see how much blood is draining . Onc said maybe home tomorrow. That scares me to death. She still is so apathetic. Still won't bath unless I force it. Says she is hungry but eats very little. Still begs for more and more drugs to stay knocked out . Refuses to be involved in any decisions, says" whatever". Her being at home is a nightmare for me. Wants 24 hr attention which I am unable to give.She will not eat, over medicates, won't drink enough, hardly will get out of bed much less move around.Tried to talk to her about alternatives but says she is fine at home alone , but every time she goes home within 24hrs she is in crisis again. Her onc wants her in the clinic everyday from now on for fluids. Tried to get him to provide at home infusion but medicaid won't pay. Becky is happy about the trips to the clinic because that means I will have to be with her all day long. I am done in!
My sister Becky will hopefully have chemo tomorrow after it has been postponed at least 10 times. High bilirubin, fever, high wbc but maybe she has a chance now. She is still very passive about this whole thing. Three weeks ago , with high bili, the onc told her that most docs would not give chemo but he was willing to give this last ditch effort if she was. When she said she didn't want to go back to the hospital he said the other option was hospice. That scared the crap out of us so she went to the hospital to have chemo inpatient. I read that as she would die w/o the chemo and sooner rather than later. Well , I finally went home later that night and e-mailed everyone I knew and ask for prayer that her bilirubin would come down so she would have a better chance with the chemo.Onc had said she would only get half of the Gem. Anyway, the next morning the onc came in and asked her what she had done the night before and she said , "we prayed" and he said" it worked"as her numbers dropped overnight and they continue to drop. Other things have conspired to keep her from the chemo. Infection in her drains, fever, which they now believe was tumor fever, but today she got the tubes replaced in both drains and seems to be good to go. My only concern now is that she still is acting very passive, will not sit up in a chair, refuses to get a bath, eats only when we push and begs for ativan constantly. Continues to complain of nausea constantly, she is on as much phenergan as possible , refuses to try zofran again but today she tried the gel and from my point of view it helped alot but she says not. all she wants to do is stay as medicated as possible and not involve herself in anything . Is this normal? We have told her over and over that if she does not want the chemo, it is her choice and she says she does , but her actions tell another story. Should I push her or let her lay there? Sometimes I just want to shake her and the next minute I want to crawl up in that bed and just hug her. Anyone have experience with this behavior? Any advice would be greatly appreciated.I am so tired and frustrated Thanks for listening
Thanks so much for the care and concern. I am so blessed to have a husband that supports me helping my sister. Right now I am unemployed so that is a huge help. Lainy, thanks for the advice about the frozen dinners. That is what she asked for and I just didn't think. I plan to ask the Doc about the B-12. And Gavin, thanks so much for the support. It is hard to be a caregiver, but I MAKE myself separate from her some days, just so I can breathe fresh air. I also have a wonderful church family that loves, supports and prays for us daily. This afternoon, because her bili is so high Becky had an ultrasound and we found out that she has GALLSTONES! wHAT ELSE! I will call the doc in the morning to set up surgery. I just pray that she has the strength to bounce back from this. Does anyone know if the gallstones could be related to the cc?
Gonna do research tonight to see what I can find out. Thanks guys, It is a relief to put my concerns with people who know what we are going through.
Wow, I didn't realize that all that was still on my mind. Thanks for letting me vent. Anyway, to address your questions. Becky is on phenergan every 3 hrs.for nausea. She tried zofran, gave her diarrhea. The phenergan helps better. She had compazine in the hospital several times but she says it didn't help. She is also on dilaudid, ativan when needed. Avelox for infection, potassium, magnesium, nexium and other things periodically. As for the drains , she goes for an ultrasound this afternoon to see if the drain is properly placed. My goal is to do whatever it takes to get her built up for chemo. She drinks a lot of water. She has boost w/ protein which she likes and fruit cups, pudding cups applesauce and occasionally she will eat a bland sandwich or a frozen dinner. Not all of any of it but something. My concern is that we are in this terrible cycle. Like today she can't eat or drink prior to the ultra sound so by tonight she will be exhausted and have no appetite. I feel as if we are running in circles. One step forward 10 backward. I have suggested a lot of small meals for her but she forces herself to eat and wants to get it over with. Any advice to get her stronger would be great. Thanks
Thanks so much for your concern. It means a lot to know there are people who know what we are going through. I say we because although I don't have cc , there are days that I feel as if I do. As her caretaker I suffer when she does, I watch the numbers constantly, I try to keep her spirits up, try to get her to eat and walk around and I constantly struggle with whether to push her to move around and the next minute I look at her face and beg her to rest. I sit with her during the hospital stays, the procedures, and the doctor appts. Becky is my only sister and we are very close. We are 1 year and 1 week apart and I don't know life without her. As the big sister I have always been the one to take of my siblings. I took care of my mama and my daddy until they died. My mother at 66, went in the hospital to have a benign tumor removed from her colon. That night she suffered massive stroke , went to rehab , was making progress when she got sick. The facility said her swollen belly was due to gas. After several days of that, I threatened to physically take her out so they got us to the hospital. Subsequently we found out she had a perforation in her bowel ,got sepis and died. I insisted on an autopsy and we found out she had pancreatic cancer . hence the stroke and perforation. My father in essence died with my mother . He fell, broke his hip almost bled out so they sewed him back up and sent him home. Dementia set in and was in a nursing home where he also got blood clot in his colon and died. I tell you all of this to let you know that this is not my first role as caretaker. I learned a few things along the way so I know that the docs will never fully inform you so you better do your research. And through all that my siblings including Becky were pretty much absent and although I have forgiven her , I guess I didn't learn whatever it was God wanted me to learn so here I am again. My prayer is that I do this with with more grace than I did before.Enough of that.
The team she has , we have a lot of faith in. MY poor sister , her name is Becky has been through the pain of the two drains, several infections, low potassium, low magnesium, low grade fevers, infection at the drain wound, multiple drain changes, nausea, vomiting , dizziness, no appetite, she has lost 40 lbs. since Aug. 1 and I am clueless how to help her now. Does anyone know what she can do do build herself up and bring her bilirubin down? Because if she can't have the chemo what chance does she have?Thanks for listening.
My sister, who turned 56 last Saturday was diagnosed with cc on Aug 1. She passed out at home and called 911. She has been through so much already.She has only been at home for 3-4 days at a time since the diagnosis.She has an intrapatic tumor and, an extraptic tumor. The intrapatic tumor has artery and vessel involvement so is not a candidate for surgery at this time. The plan is for chemo with gemcitabine and cisplatin 2 x month for 2 months , then scan, if tumor shrinks,then surgery, if not, oral chemo and radation. The problem is that she can't get her numbers right for chemo. She has two billary drains, one on her side, the other upper abdomen. She has experienced every symptom, every complication I have read about and today chemo cancelled for the 5th time due to high bilirubin #s . I don't know how to help her at this point. She is divorced, kids out on their on . One lives very far away, the other goes to school and works. She has no health insurance but I am amazed at how our hospital has provided. Medicaid has not been approved yet, but we are hopeful. I am sure ya'll are curious about her Doc's. As a woman of faith I know that God went before us in all of this because going through the ER my sister could have gotten any oncologist but she got the Doc that had just come from working with Dr. Melanie Thomas ( from MD anderson) at the MUSC( med univ of sc) After the diagnosis Dr. Wells got my sister in at MUSC with Dr. David Cole ( surgeon) and of course Dr. Thomas.
Posts found: 7