New to Site – My Aunt
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Wow, I was having trouble keeping things down early on and it wasn’t normal nausea. I could drink water and then throw it up quickly. It turned out my tumor was squeezing my duodenum and that and a plump lymph node were keeping me from getting any nutrition, causing the nausea and making me feel really, really sick. I thought I was dying. Fortunately, I am being treated at a large hospital that treats a lot of cholangio patients and figured it out really quickly. I had a surgical procedure called a gastrojujenostomy (gastro j) which is what, in essence, they do for gastric bypass patients. It re-routed my stomach around the blockage and saved me (for now), allowing me to get to chemo and work on attacking the cancer. So, something to ask about. I’ve written about it on my personal thread here and on a thread in the general discussion. You can search my posts by my name if you want.
Hope they can figure it out.
Lisa
Ps, my doctors not only encouraged me to get a second opinion, they said they’d help me get one wherever I wanted. I disagree with their saying one isn’t necessary.
Tina, you are already very wise. Absolutely, the hospital/ONC should encourage a 2nd opinion. That to me is a red flag. None of us know but your Aunt’s time may NOT be limited. Usually a good Doctor will have no problem with another opinion on such a rare Cancer. I just Googled the clinic and they mention a lot of Cancers that they treat but NOT CC. Not that, that means they don’t but in my gut I put that together with them saying you don’t need another opinion and it sounds like the typical Cancer Centers that do not really treat CC. We always recommend the BIG Hospitals.
I wanted to make a correction to my initial post as well: They also found a spot of cancer on her cheek and a couple spots on her liver but said they would not worry about that as the chemo would help it all.
Should say They also found a spot of cancer on her cheek and a couple spots on her LUNG but said they would not worry about that as the chemo would help it all.
There was no tests besides the scan to know if what they seen on the cheek and lung was cancer.
Thanks!
TinaThank you all so much for taking the time to read and respond to my posting! Kris congratulations to your husband on his last chemo!
Marion – She started vomiting and spitting up what she drinks since before her diagnosis. The first dose of chemo she did not seem to have any side effects. She received her second dose of chemo last Wednesday and Friday after getting a bag of fluids, she has been getting sick since. She is blaming it on the fluids but I thought it may also be the chemo reaction that was delayed. She only eats very minimal…like last Monday she had a banana. She cannot keep down water all the time either…hopefully when she gets sick she doesn’t lose it all. From the list of drugs I had them print out for me, I believe the chemo she is on is Gemzar 2000mg and Cisplatin 50mg. She is being treated in Cedar Rapids, IA by PCI (Physicians Clinic of Iowa).
Lainy – I will have to bring up hospice some how. We all work including her husband so she is home during the day when she does not have her appointments by herself. Her not knowing what the doctors feel will be the time she has left, it may be hard to bring this up at this time. But I think this would be great to have a nurse come and make sure she is comfortable. I thought when hospice becomes involved the treatments stop…it may be hard for me to swallow this but it may just be what she wants.
Lisa & Lainy – I will definitely be talking to her about a second opinion, I think a great option for a second opinion would be the University of Iowa Hospital, they are only 20 minutes away. When she was first diagnosed we did ask PCI where she is being treated if they have dealt with this cancer before and they said yes. I did not ask how many cases. When we asked if we should get a second opinion, they said it was not needed. I feel they should encourage us to get a second opinion, this is a life not a car or appliance at home.
I really enjoy reading your posts and appreciate the time you have given to me already! Take care and have a good evening!
Tina
Tina…I too would like to welcome you to our site. My first and foremost concern is the vomiting you describe. Is your Aunt able to hold down anything including water? Do you know whether the vomiting is related to her Chemotherapy treatments? What type of chemotherapy is she taking?
Who is tending to her? Sorry for the multiple questions?
Hugs,
MarionTina, welcome to our remarkable family but sorry you had to find us. I agree with the comments above about getting a second opinion and ASAP. I just have this feeling that where your Aunt is, the are not used to this Cancer. You not only need answers you need to ask what the chemo is going to do for her. If it is only going to buy her a short time she may opt for no chemo and have quality instead of quantity. If you feel she is getting worse ask the ONC about Home Hospice. They are wonderful and will keep her very comfortable then she can stay home instead of the hospital. Is anyone helping you work with the Doctors? I am so sorry but something here does not sound right. I would ask them if they have treated much CC before. We are here for you, you are not alone. We have had members who were stage IV with Mets like your Aunt has and through the proper care the tumors have shrunk. Please keep us posted and we will help you through as much as we can.
Tina –
Well, welcome to the best little family no one really wants to be a part of. Sounds like things have happened pretty fast and you are both overwhelmed. One of the things I would encourage is to get a second opinion from a cancer center that has dealt with the CC more. And always remember that we were not born with expiration dates so there is no knowing how long any of us have.That being said I would make a list of questions to ask the ONC the next time you go. Ask point blank about surgery. Is is an option? Could it be an option at some point? Would radiation of some sort be an option? Ask the questions, take a tape recorder so that way you don’t have to write or remember everything that is said.
As far as eating and sleeping, the sleeping is typical. Her body is fighting a lot. My husband just finished his last chemo and he naps almost all the time when he is not a work. As for what she eats, just make sure the calories she consumes are good calories, try to limit junk food. Protein shakes are great – frozen fruit, couple of scoops of ice cream/frozen yogurt, some plain vanilla yogurt then add milk and blend until milkshake thickness. You can also add protein powder bought a nutrition store. Ensure, Carnation Instant Breakfast those work too.
Good luck, Keep us posted and know you are both in our thoughts.
KrisV
Wow, I’m sorry that your aunt is so sick, so quickly. She’s my age, so that hits home. I think of 56 as young! I wish I had answers for you. I think every single person’s experience with this nasty disease is unique. Some, as I’ve discovered, don’t get much time after diagnosis, but others do, despite good and bad periods.
I have a hard time accepting there is nothing that can be done, but that’s me personally. My biggest question would be how much experience the doctors/hospital where she is has with this very specific and rare cancer and if it’s not a lot, I’d be trying hard to get her in for a second opinion somewhere they are experienced.
Don’t worry about venting. Vent away.
Lisa
Hello everybody. Unfortunately I have had to research this horrible cancer. I have been looking at posts here for the last couple weeks and feel overwhelmed. My aunt age 56 has had Leukemia for approximately five years. It was diagnosed at stage 0 and was being monitored. She did not need any treatment. Approximately September of 2013 blood tests indicated that it was at stage 4 and they wanted to start a chemo pill. They told her she could wait one more month before starting and they would do additional tests to see if it was maintaining. In October they did additional tests and her levels were better and they held off on chemo but she was to go in for blood tests once a month. In November the blood tests indicated that her liver levels (not sure of the term) were high but nothing to be concerned about. She had been complaining about abdomen paid and was able to feel a lump in her stomach. The doctors at first could not feel it when she came in to report the pain. A few weeks later she went in the doctor and they were able to feel the lump. Shortly after Christmas they did a biopsy and determined it was Cholangiocarcinoma Cancer. They said the cancer is in stage 4+. She was initially in a lot of pain but they have been able to manage that since. She is still very nauseous and so far no medicine has been able to help with this. She eats very little and sleeps all the time. Doctors say not to worry about not eating…I guess I think you have to eat to keep your energy up and maybe if she ate more she wouldn‘t feel so sick. The doctors have not once mentioned that surgery is an option. She just had her second dose of chemo last week. And has to go in and get fluids often.
The posts I have read encourage me that there is hope. The doctors have given her 3-6 months (she does not know this part, she just knows she has terminal cancer stage 4+). Of course the doctors say she could certainly be here longer then 6 moths. Can it really go that fast? It breaks my heart to see her. I really think she gave up the fight to live before she was even diagnosed due to the pain and feeling so sick all the time. The last week she tells us she hopes she will be hospitalized. I think she feels they will be able to make her more comfortable. I have no idea what to do for her and when I went to one of her appointments with her, it just seems like they are trying to keep her comfortable and are not fighting for her. I am not saying the doctors are mean, they want the best for her but I just don’t see creative thinking and game plans like I expected. Our family has not seen a scan of the cancer as of yet…the doctor she has is new to the clinic and her access was not working at the time. I figured they could have figured out a way for the family to see what they see. One worry is that she will become too sick from the chemo and they will then have to stop…if this happens then they said it is all about comfort until the end. I just don’t understand that they can’t be anything after chemo….so sad! I feel like our family is not asking the right questions and the doctors aren’t providing a lot of information. I hear about surgery from the site but it has never been mentioned. I look at her and feel so helpless. I have mentioned getting a second opinion but they started her on chemo so fast and I guess we just accepted what the doctors have said. The other day I remember seeing one of the cancer doctors and he mentioned gull bladder cancer…my aunt and I looked at each other as this was the first we had heard of this. It seems like we are very uneducated about this cancer as when we asked more questions we were told it was in the gull bladder, liver, bile duct and lymph nodes around that area. They also found a spot of cancer on her cheek and a couple spots on her liver but said they would not worry about that as the chemo would help it all.
I will cherish every moment I have with her while she is here. I have two children age 7 and 10 and it is so hard to tell them what to expect and why it is so important to visit her often. I am just glad we live so close! Today we made her a message board and had the entire family sign it with a little personal messages. She really liked this and I will continue to have my kids make her personal gifts! I feel like I am kind of everywhere in this post and I apologize. I just needed to write and it all just came out…in no particular order.
My questions are…could it really happen so fast? Should we just accept that there is nothing that can be done? Anybody have suggestions about the nausea, she has had this even before chemo? Any suggestions on what questions our family could ask the doctors?
Thank you to everybody who posts information on this website. There is a lot to go through and I am sure my concerns/answers are in here…but it may take me a while to find them.
God Bless and prayers to all that are suffering!
Tina
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