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|La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
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Posts found: 13
My brother left us on Sept. 28th. He did get to go home from the hospital to live his final days. He would have celebrated his 60th birthday yesterday.
I understand and do believe he is in a much better place now but am
still waiting to wake up to find this has all been a horrible nightmare.
He was just diagnosed with this horrid cancer on Sept. 3 of this year. How could this happen in 25 days?? Looking back I can see he did have some earlier symptoms but the Dr's were just not looking for cancer. Perhaps if they had he may have had more time with us. His cancer was also referred to as pancreatic cancer. I don't understand much of this - just too much to try to comprehend at once.
I pray that a cure for all types of cancers is found soon. Cancer has devastated my family. We lost an uncle to lung cancer, nephew to brain cancer and have a niece who is at this time all clear.
Come on, we can put a man on the moon but have no cure/treatment for this horrid disease?
Sorry if I sound bitter.
I will keep all of you in my thoughts and prayers.
I know where you are coming from. I just found this site a week or so ago. In fact, my 59 yr. old brother was diagnosed Sept. 3 just a little over 2 weeks ago! Diagnosed with CC plus gastroesophageal cancer. It was such a shock! His liver cancer is inoperable. In 2 short weeks our world has fallen apart. I (nor anyone in the family) had ever heard of this awful disease until now. He was diagnosed and has just deteriorated so fast. I don't understand any of this either! My brother is also in the hospital. They did an ultrasound today to see if it's possible to put a stent in his liver duct to help. I just pray that it is possible and that it will give him a few good days. As it is now, he is in pain, is not eating, and not very responsive.
Please don't apologize for rambling - whatever gets us through this is what we need to do. I hope and pray that a cure for this horrid thing is found very soon.
I will keep you and your Dad in my prayers.
My brother was admitted to the hospital today. He was in such pain. Dr is hoping to alleviate some of the fluid build-up. Dr said he could tell by the xray that most of the fluid is toxic gas build-up (His kidneys, liver and pancreas (sp) are not functioning). He will probably be in hospital a couple of days, then home. His fiance is getting Hospice involved. I have heard that they will be much help for Billy and us.
To answer some of your questions: The drive to Mayo would be about 4 hours from here. I wish my brother would have made that decision many months ago, and perhaps they could have found the cancer and a treatment for him. He is not eating at all and barely drinking. They are now giving him fluids intraveiniously (sp).
Thanks to everyone for your prayers! I will continue to pray for all of you and keep praying they find a cure for this horrid thing very soon.
Well our trip to the oncologist was a waste of time in my opinion. My poor brother had to sit there for 1 hour just to get in to see him. The Pet scan that was done that same morning was, of course, not ready yet for the dr. to view. The doctor told us the news that I was dreading...there is nothing more they can do for my brother. The cancer has spread to his lymph nodes (don't know which cancer has spread...since he has 2 totally different types - CC plus esophageal cancer). Dr. said he is definately not a candidate for surgery and that chemo was probably out of the question as well. When I asked about some of the other less traditional treatments his answer: Well, then you still have the esophageal cancer to deal with. We asked about going to the Mayo Clinic, he didn't think it was a good idea to drive that far with my brother being so sick, but of course he said that is your choice. We told my brother it is his choice alone, and he said he would think about it.
I'm afraid my brother is giving up. But that is his choice as well - who would want to live in pain as he is? I still keep hoping that I will wake up from this nightmare! How did all of this happen within 2 short weeks??
How can this be?
Sorry to sound so down...I know that so many of you have options that are working! Good luck to all of you and you are in our prayers.
Keep fighting the good fight!
Today was a much better day for my brother. The new anti-nausea meds seem to be working! Primperan (Metoclopramide). He was able to eat just a bit today and is drinking some pedialite, water and ginger ale. Isn't it amazing how such little things in life become miracles for us now?
Tomorrow the Pet Scan and oncologist appointment. Keep us in your thoughts and prayers as I will all of you.
My brother was not very responsive today. On a good note though, he got some new anti-nausea meds that seem to be working, so far. I got him to eat some chicken broth tonight. Hopefully tomorrow will be a better day.
I'm so glad to have found this site, such loving, supportive people here.
Please keep my brother in your prayers...
Healing thoughts to all of you,
I'm new here ~ so bear with me please. Where would one get the bracelets you speak of? I have only known the word "cholangiocarcinoma" for a little over a week so yes, we need to get the word out!
Michelle - Prayers and healing thoughts coming your way.
My heart aches for each and every one of you~
This CC thing is the most vicious disease I have ever had to deal with. We've had family members die from different types of cancer - but they at least had a little time. From what I'm hearing it just seems to come from nowhere. Some folks don't even have symptoms? It's all just crazy!
My brother was diagnosed 9/3/09. Today - we are thrilled that he was able to eat a cup of ice-cream (spiked with ensure).
This past week has been a roller coaster no one ever wants to ride.
I pray that all of you and your loved ones beat the **** out of this CC! (Sorry)
Sometimes it just frustrates me so!
Prayers and healing thoughts to all,
Thanks for the prayers everyone!
The Pet scan is scheduled for next Thursday. We do not know if the oncologist has ever dealt with CC before. We live in a small town in Iowa and do not even have a resident oncologist. They come up here from Des Moines twice weekly. At first my brother's gastro dr. told us (on 9/3/09) that my brother would have an appointment with him on the 15th and then he would make an appointment with an oncologist. So my brother's fiance and I are thinking - ok, this is CANCER and we are not going to see a dr until when??? We got the Home health care nurse involved and she was able to get us in sooner(yesterday) - which was a relief to all of us.
Today my brother had a ct scan of his brain. Also had fluid drained off his stomach. We are hoping and praying that he will be able to eat. He was able to drink a small glass of water and a sip of Ensure - but a few hours later vomited. He has lost 12 pounds in the last 4-5 days. He did seem to be in better spirits today, less pain, talking some enjoying some fresh air outside. Does anyone know - will removing the fluid help him be able to eat and drink now? That seems to be our biggest problem at the moment, how long can a person survive not eating or drinking? It's been 5 days. I am so hoping after a good night's rest, he will have a little appetite tomorrow and be able to keep some nourishment down.
We have so many questions and fears - just don't know where to start.
I guess after we get the results from the pet scan we will hopefully be able to at least have a plan for some type of treatment. I guess I should be thankful (and believe me, I am) that today was better than yesterday. We are just praying for more "good" days.
Thanks to all of you for your support, prayers and good wishes.
My prayers and healing thoughts to all of you as well.
Thank you Jamie!
The oncologist is apparently waiting until after the pet scan to let us know if there are any options. I am afraid the options will be limited due to all of the other health issues he deals with: diabetes, by-pass surgery this past May, heart beat irregularities, the list just goes on and on. While he was in the hospital last week he discovered a swollen lymph gland near his neck, and the gastro dr. is assuming it is a tumor as well. But - we are not giving up hope.
I hope all goes well for you~ Prayers for everyone affected by this horrible disease.
I guess I forgot to add that Dr. said the cancer (liver) is inoperable. I do not think Dr is concerned w/ the esophageal tumor. I have been reading posts here and feel so helpless. I pray for all of you and your families.
Just found this site. My 59 year old brother was diagnosed with cholangiocarcinoma AND gastroesophageal cancer (9/3/09) just one week ago! I cannot believe this is happening. He has had so many health issues in the past that this just seems so unfair. For the past 4-6 weeks he has had stomach pains and sent from one doc to another. Then swelling and the pain was so severe he went to the emergency room and they drained the fluid. Three days later he was told he has this cancer and that it is stage 4 already? How can that be? 1 week ago he was ill, but now not eating or drinking. We finally got to see the oncologist today. He has ordered Pet/Scan, brain scan and will tomorrow take more fluid off. We are praying that after the fluid is drained he will be at least able to eat or drink. I have never seen any disease so devastating in my life. I have done a little research on this cancer and realize that we probably won't have much time left with my brother, but diagnosis 1 week ago to this?
Please pray for us!
Posts found: 13