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Update on my aunt…She was still sick all day. She has made the decision to call in hospice. She is sick of being sick and tired.she doesn’t have any more energy and hasn’t had anything other than water and ice chips the past 3 days. They think whatever blockage that she has in her intestine is completely closed….I will probably be flying down Sunday. This is very hard for my to comprehend. She is a tough woman. She was in law enforcement her life. They offered her early retirement when she was diagnosed and she finally finished her whole career as sergeant for the us air marshalls for the k9 unit. I know calling in hospice doesn’t mean the end, but she is done fighting this horrible battle.
thank you all for your kind words these past days.Larissa,
Welcome to this amazing, loving and supportive group. Sounds like your Aunt has a wonderful niece. I agree with Lainy, a second and third opinion is in order. My cancer did not respond to the four different chemo treatments I had but I did have great results from steriotactic radiation. There are so many new trials happening so please do not give up hope. I would also recommend that your second and third opinion be from a multidisciplinary team who has treated other Cholangiocarcinoma patients.
Hugs
LisaThank you all for your kind words. It means a lot!
I received an update from my mom last night, and my aunt is still getting sick. Her digestive system is no longer working so anything she puts in her stomach, comes right back up. All she had yesterday was water and ice chips. My mom said that one of her doctors hooked fluid up to her that has some kind of sugar in it, to give her some calories.
They suggested putting a feeding tube in, but my aunt declined. They then stated that there is a away to put nutrition directly into her blood stream, so it will not have to pass through her disgestive system. The IV can be hooked up directly to her port. My aunt is considering that. My mom was going to suggest to her last night after she got off the phone with me, to try it while she was in the hospital to see if that would work.
My aunt was crying all day yesterday and said she was sick of being sick…and ready to meet her maker. I don’t feel like it’s time for her to let go, but then again, I am not her. I hate hearing it. I will try to get an update today, but yesterday my mom said she was not good.
Thank you all again!
Larissa,
I can’t write much tonight because I don’t have a lot of experience with this yet, and I’m personally dealing with feeling very crappy after getting chemo this morning, but I wanted to also throw in my 2 cents worth to let you know that you will always be welcomed here and yes, this is like a family. There are differing attitudes and theories and this is a great place to find them. No one judges…just good questions and hopefully good answers or at least good options. Hugs from Iowa
Julie T.
Larissa –
Welcome to the best little family to support you through this. I will echo what others have said, 2nd opinions are important even if someone has said there is nothing else to do. There is no set treatment protocols so one doc may have a different approach or different ideas that the next. It never hurts to have a 2nd one.
The other suggestion would be to see what you aunt wants, does she continue to want aggressive treatment or has she decided she is done with aggressive treatment. If she is done with aggressive treatment then Hospice is a great option to help her stay at home and comfortable and give your entire family the support they will need.
She is very fortunate to have such a loving family.KrisV
Larissa,
A warm welcome from me to you. You’re aunt is fortunate to have such a caring and concerned niece. Glad you have found us but sorry that your aunt’s illness is what brought you here. Please let us know how she is doing. We all care and will try to help and support you in any way that we can.
Hugs,
DarlaI appreciated everyone’s thought. I bought the wristbands off of this site after I found out that my Aunt was diagnosed. I never knew about the forum until my Aunt started getting progressively worse. While reading everyone and how they connected like extended family was reassuring. Like I stated, I don’t know much about any cancer. I know this type of cancer is rare. It’s nice to see that my aunt is not alone in this struggle. I am not sure how my aunt is doing today, but I will keep everyone informed.
Thank you again.
ipace….I would like to follow Lainy in welcoming you (the kind and caring niece) to our discussion board.
This disease is complex and difficult to understand not only for the layperson, but for many physicians as well. It is for that reason that we suggest 2nd opinions from centers treating high volume of cholangiocarcinoma patients.
For a general overview of this disease, you may want to take a look at the biliary book written by physicians in a patient friendly form:
http://cholangiocarcinoma.org/news/foundation-resources/
From a layperson point of view and regarding your comments, I would like to share that blockages drives disease progression. This appears to be the case with your dear Aunt and it may very well be the reason for her current health status. You might want to reach out to the other families for more information or, as Lainy has suggested, ask permission to contact the treating physician directly.
Please continue to reach out to us. We care and we are in this together and the members of this site are the most kind, caring and helpful people ever to be found.
Hugs,
MarionLarissa, I am glad she is not alone. I would still suggest a 2nd opinion and if her ONC says there is no more they can do I am surprised he did not mention Hospice as Hospice does not mean the end and will start coming in up to a year before things take a turn. Again the most important thing is comfort because if they do not control the pain it will be harder to control if it should get worse.
Wishing your family the best.I know that they said there is nothing more that they can really do for her. They won’t do surgery on her. They removed her galbladder and as much as her liver as they could, and did some duct work when she was first diagnosed. My mom is down right now with her at the hospital, but like me, she lives in PA. She went to a cancer center in Tampa to have all of her surgerys and that is where her man cancer doctor is located. She has a husband and her mother down in Florida with her.
Sorry about that, brain freeze wrote out Nephew! I am not a MED pro but it seems to me she had a pretty bad case of Ecoli. One more question please. Have the ONCs said they have no more treatment for her CC? I really would try to get her a 2nd opinion and she MUST be with an ONC who has treated CC and in a Major Hospital that treats quite a few cases. CC is so rare yet that not too many ONCs have even treated it. I am also wondering about pain Meds. Does she have a Care Giver? If not perhaps you can get her permission to be in contact with her ONC so that someone knows what is going on.
Just to clarify so there is no confusion, my name is Larissa so i would be her niece
.She is at Lee Memorial Hospital in Ft. Myers. She has the cancer in her liver, her bile duct, small instestine and possibly stomach. This is the closest anyone has been to me that has been diagnosed with Cancer so I am not too familiar with everything. They are hydrating her with an IV and also she is eating soup. On Tuesday she said she felt better than she had in weeks, and Wednesday she was sick all day. She was due to go home on Tuesday, but they kept her because her potassium levels were low. Then on Wednesday she got sick. When she is released from the hospital she will have a nurse to come to the house to check on her, but I do not think it is hospice.
Dear IPace, welcome to the best place to be for CC support. I would like to say what a loving Nephew you are! First and foremost is to get 2nd and 3rd opinions. Where is your Aunt being treated? It would help us to know what stage she is at and where her CC is located. An Ecoli infection can also bring someone way down, my husband had one which almost took him instead of the CC. If she is in a hospital they would be hydrating her with an IV. At home ice chips help if she cannot drink the water. There is no reason to be in pain these days. Is someone caring for her? When the Doctors took her off of food did they suggest Hospice come in? Sorry for all the questions but we need to know a little more in order to help.
I am new to the board. My aunt was diagnosed with Bile Duct Cancer in December 2011. She was given the expectancy of 9 months. She has been a fighter and not letting the cancer consume her life. She has gone through 3 types of Chemo. The past month she has really started to decline.
She has been in and out of the hospital. She was just treated for Ecoli infection, which by reading on the forum is common for this type of cancer. She has a blockage in her small intestine and her stomach is no longer processing and breaking down the food that she consumes. The doctors have put her on a liquid diet. However, she is getting sick, dehydrated and of course in pain contantly.
She is in Florida and I am in Pennsylvania, i was wondering if anyone have been through this with a loved on and noticed some of the signs that i have described above. I am just trying understand what is going on, because I am not getting much information being so far away.
If anyone could shed some light, or past experiences, it would be greatly appreciated.
Thank you!
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