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you do help Lainy. Everyone here does. Just knowing that you all understand the insanity of it all is comforting. My dad is 68. My mom just turned 58 two weeks ago. Thank you for all of your responses today. I don’t believe you are being dramatic. One idea. Would it help for you to meet alone with your dad and explain what this is all about? Are your parents a lot older? This could acount for the “what ever happens” attitudes. They feel safe as long as they are home. Wish I could help you more!
They live about ten minutes north of new haven Connecticut. I live about five minutes north of them. About an hour and a half from NYC. I had an appointment for her at Sloan when she was initially diagnosed. She and my father cancelled it because they didn’t want to go into the city. (even before she was sick they weren’t big on leaving their immediate surroundings). It’s extremely defeating to know that a world renowned hospital was an hour away and she opted not to go. I don’t know if she just doesn’t fully grasp how serious this is (they tell me I’m being dramatic) or if she does know, and just assumes nothing will help her and she doesn’t want to make things “difficult” on my father.
I am very worried about you and your whole family. I am wondering why she has not seen her ONC for 2 months and I am wondering how a GP would know what to do for CC. I have an excellent GP but he didn’t know exactly what it was! I would get to an ONC immediatly for a 2nd opinion. May I ask where you all live? Honestly, your GP cannot possibly know unless he has treated a few CC patients, which I don’t think so as GP’s don’t treat CC patients. I feel so bad for you having to take care of both parents, I know it is not easy but it is harder when you don’t have the right doctors.
Hi. She actually hasn’t seen her oncologist since the first meeting with him. This is all information from the gi surgeon who placed her stents. I went to my general practitioner after moms last appointment for some advice on how to cope with my fathers mental health and his methods of coping as it’s taking quite a toll on me and my gp tol me that he had been recording all of the reports from the gi doctors and that he was ready to recommend hospice care. Tomorrow makes exactly two months from her original diagnosis. I knew this was an aggressive cancer but it’s been such a horrific whirlwind. I know when she hears “hospice care” it will devastate her even further as right now she still thinks once her pneumonia is cleared up that she will be getting chemo. My gp said that chemo at this point would likely do ultimate harm to her. I can’t even wrap my head around it all.
Hi Kelly and I am so glad you are getting that other opinion. Does her ONC know how poorly she is feeling as there are so many meds for so many things. Please don’t look upon Hospice as the end. They come in for comfort and they are amazing in the home. The bottom line here is comfort. The ONC issues the order, they come out and evaluate and immediately they are set up and Mom would be feeling better, honestly. They even start a year in advance. Good luck and please keep us posted.
Hi Kelly, I am glad your mom is now going for the second opinion. My husband is stage 4 advanced with no cure but has been treated with palliative chemotherapy which he has responded well to. His cancer is now stable with no progression the last 2 months. Even though this is not a cure it gives us quality time and he is feeling so much better. Not everyone responds to the chemo as you will see on this board but it should be an option for your mom and maybe they will have other options for her. I feel for you – fightin the same battle here. Hugs. Nancy
Hi everyone. Mom had her second set of stents placed. They unfortunately have not helped her jaundice. The gi dr who did the proceedure thinks that the tumor is higher than they initially thought. Mom developed pneumonia in the hospital after the proceedure and was there for a week and a half. She’s been home for about a week and a half now. She’s still on antibiotics for the pneumonia, but I spoke with her doctor on thursday by myself and things don’t look good. Her abdomen is very distended and initially they thought it was drainable but they suspect it is coming from the metastasis in the liver itself and therefore is not able to be drained. My father and brother do not seem to grasp what is going on with mom. They’ve heard the doctor say “no cure” but it’s almost like they think it’s diabetes, something able to be managed. Meanwhile mom is not eating much at all but is managing about one ensure shake a day and a piece of toast. She is very week and spends most of her time in bed. She is able to shower independently but becomes very tired very quickly. The gi doctor said before they recommend hospice care he will send her to yales smilow cancer center for another opinion. That’s where I’ve been trying to get her to go right along, if not Sloan Kettering. I can’t believe how quickly this has all happened. She is very uncomfortable now with the bloat as she is someone who was not a meaty person when she got sick. I don’t know how my father is going to react when he hears the word “hospice”. Or my brother for that matter. I’m hoping we are able to keep her at home and have nurses come into the house to keep her comfortable.
Kelly, has your mother offered any reason for not wanting another opinion? Does she realize that CC is only diagnosed in fewer than 2000 patients a year in the US and the best treatment is almost solely available at one of the major cancer centers, and that this is a really nasty cancer? Has surgery been considered? (My understanding is it offers the best hope of a ‘cure’.) For myself, I approached cc as though it was a war … and it is!
I really feel for you, being the good daughter and your mother resisting common sense ideas. I suspect she’s probably terrified, and doesn’t want her fears confirmed, but that’s just a guess. It’s very hard being an advocate for a difficult patient. My wife and I play that role for each other, but unfortunately I’ve been the recipient way more than her. Many years ago we agreed that if either of us had something serious medically occur, that we would seek a serious treatment facility. I think all you can do is offer helpful suggestions and hope for the best. Kind of like ‘you can lead a horse to water …’.
Let us know how you make out. God bless you and children like you.
Kelly – I think if I went to a doctor who told me there was no hope and who said I shouldn’t be taking care of my parents, I might consider changing doctors! What a thing to say! I took care of my Mom when she had Alzheimer’s and, although eventually had to get more care for her, I was proud to do so!!! And when my son was diagnosed with CC, all we had was hope. If not, we would have all gone insane! How are things going????? – Nancy
Dear Kelly, I don’t want to poke around here but does Mom know what this disease entails? Mmmm Perhaps if you are with her for her next visit you can slip in a question in front of her and ask very nicely, “Have you treated many patients with CC?” Maybe if she hears none or just some it could enlighten her.
You might also try the approach the tough love way. Let her know you are trying to take care of her and your dad and you need some cooperation from her to do things that are best for her. Hang strong and keep us posted, please.Hello all.
Mom is still refusing a second opinion. We met her oncologist last Friday and I already don’t like him. I hate to be negative but he just didn’t have answers to questions that he should have had. Instead of that being a red flag for mom, she was angry that I questioned the doctor. She’s going in to the hospital tonight to stay over to have her metal stents placed tomorrow. I was really hoping she would have gone for a second opinion before that. She had a pet scan and EKG this week as well. No results yet. She’s not eating well and says that even the ensure makes her feel too full. I hope to update more positively soon.
Jim, thank you. I think I will print your response and hand it to my mother. Hopefully seeing input from someone also fighting the fight will help her make a better choice. I am grateful for you and everyone who ha offered kind words and support.
Kelly, I am also sorry you had to find us. Whomever suggested excellent care isn’t available closer is totally wrong. I was treated (surgery) at NY Presbyterian with excellent results. In NYC, SK has a great reputation and is one of the NIH major cancer centers, as is NY Presbyterian. Mt Sinai also has a very highly regarded capability. The are a number of potential courses, i.e. surgery, surgery+ chemo, chemo only, radiation, etc.
Here’s a link to stuff in the NY/NJ area:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5625
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and another useful link:http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5625
Time is your enemy here, so I would get your Mom moving on this. I’d be happy to share my experience with NY Presbyterian in detail if you’re interested. My personal opinion is don’t rely on New Haven. I have kids in CT and I know Yale New Haven is very good, but CC is too rare for them to handle, although what I did, living in Eastern Shore of MD, had an oncologist at Presbyterian supervise infusions done in MD following surgery. You will find doctors and hospitals can be quite flexible to suit patient needs.
Best regards,
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