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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: 19
Melanie - I am so sorry for your loss. My husband passed away 3 weeks ago and I have found this site to be both helpful and a great comfort. My thoughts are with you and your children. Life has become one day at a time for me and I have found that to be the best way to exist. My e-mail is email@example.com should you ever want to contact me. Advise that was given to me - easier said than done - is "take care of yourself so you can take care of your daughter"
My sister-in-law has been with me since my husband died. She leaves today and I'm feeling kind of anxious about it. I'm scared. Any words of support would be helpful. I think of this discussion board when I'm feeling any multitude of emotions
Thanks for posting that - it brightened my day. Those who loved us are still looking out for us.
Melanie - My husband was on Oxycontin and Oxycodone and that seemed to help with the pain. Also seeing the doctor sooner, as others mentioned, is a good idea. I know I worried with each new symptom. Good luck and my thoughts are with you
Beth - I have been thinking of you a lot lately. My husband died on Feb 15th. Like you I am trying to find my way. I am so thankful for my daughter Hannah for at times she is what keeps me going.
Thank you all for your words of support. I have a question - when does the reality of it kick in - I have definately cried and been sad but I also have been able to function and do practical things. Is this shock?
I read your post with sadness as I too just lost my husband and best friend. He fought this disease for 7 months. I have an 11 y.o. daughter Hannah. We have held onto each these past 2 days. It still seems unreal to me. My thoughts are with you.
Tuesday Feb. 15 @1:15 my husband, Ben died. It came so much quicker than I expected. He was in the hospital and I am thankful that I, along with our best friend were there with him until the end. Having to tell Hannah my 11 y.o daughter was one of the worst things I have ever done. I feel a new journey is beginning for me and her. She found a star in the sky that is her father and we have begun looking at it in the night sky and talking to him. One day at a time has turned into one minute at a time. I am so glad I found this website.
Graceful, my heat goes out to you. Keep your daddy close to your heart.
Forgive me ahead of time for my following ramblings and rants. Let me first say that I have been on medication for anxiety attacks for 15+ years. I used to have pretty bad attacks. Over the years Ben, my husband has been my rock and steadying force. Anyway - a week ago we signed up for hospice, it seemed to be the only avenue left to us. Ben's condition was not improving and seemed to be getting worse. I thought I had a handle on it. On Friday (2/11) the hospice nurse came out (she had been out before when we had home health). At the end of her visit she said to me in private "he has about 1 week left". Well let me tell you my anxiety kicked in to high gear. I thought to myself "this can't be happening".Yesterday I began to get angry at being given a time frame and my emotions have been going from sobbing uncontrollably to getting pissed off and wanting to fight this disease even harder than before. Am I in denial? My mother-in-law said to me once "as long as there is life, there is hope" I am watching so closely everyday - getting excited when he eats, yesterday him came out with me to run errands. He stayed in the car but it was the first time he has been out of the house in a week. I'm trying to hold on to every moment we have together. Thanks everyone for being out there for me.
My husband went through 6 weeks of 5FU but the CT scan showed the tumors continuing to increase. Switched to Taxotere, he had 1 treatment. His potassium level is critical. Two days in the hospital and they brought it down but yesterday it was up again. We met with his onc. who said basically my husband's organs are beginning to fail. It is evident to me - he is very pale, has difficulty walking, his blood pressure is down to about 80/60, he is sleeping more and more. We connected with Hospice care today. My realistic, logical side is telling me that the end is coming but my heart cannot accept it. I watched my mother die of breast cancer 20 years ago and this is like deja vu. I'm trying to be strong for our 11 year old daughter but I get very scared at the thought of losing my husband. I turn 44 on Monday and it is hard for me to look ahead to a life without Ben (my husband).
Hi - My husband was diagnosed in July and began retaining fluid sometime in Sept/Oct. He has been drained 5 times - each time they took out no less than 11 liters. Today he had a permanent catheter put in so he can drain himself at home. He fills up at about the rate of 1.5 liters a day. I don't have an answer in terms of why this happens but something to have the doctors check is if the cancer is in the fluid. Two weeks ago we found out thru an MRI that cancer cells are in the fluid. Good luck and congrats. on your marriage. - Sarah
My husband is currently on 5FU and it isn't working. He has been on Gemzar and Cisplatin which didn't work either. We went to New York Presbyterian before Christmas to have a consult about a liver transplant but found out on 12/28 (my husband's 49th birthday) that he is not a candidate. An MRI was done while we were in NY and the results showed that 60% of his liver has cancer and there are tumors in the ascites fluid. He has been tapped 4 times and goes in next week for a permanent "drain" so he can do it at home. Anyway, my question is, does anyone know of other chemo regiments that have been successful with cc? I have been looking on the Internet and it seems that Cisplatin, Gemzar and 5FU are the main treatments for cc. Thanks for any thoughts - Sarah
Hi Julie - I am a new member also and feel very confused myself. Use this site to help you understand things. I have found great support here already. My husband is 48 and was diagnosed in August. The questions that the moderators and other members ask has helped me focus each day. My thoughts are with you - ziggydog
Hi - my husband is losing weight - last week he lost 6 lbs.,(since this began in July he has lost about 60lbs) his pain comes and goes but he is constantly tired. He sleeps or rests most of the time - this is not due to depression either - he went through a couple days last week of total "in the dumps and not caring" but we have talked a lot about it. His spirits have been better lately but his body is exhausted. I think our onc is not overly knowledgeable about cc - just my opinion. He is willing to work with us but he doesn't seem to have any fresh ideas.
Hello - we saw my husband's doctor last Friday - he basically said "hospice care" however I mentioned trying another chemo F5 which is what we are currently doing. The doctor's reasoning for having little hope is due to my husband's tumor marker # and his liver function. His tumor marker # keeps rising and his billirubin # is rising. I don't know what to think - any advice???
Hi - thanks for all the words and support. My husband's fatigue was indeed the first sign that something was wrong back in March/April. Even since my last post only two days ago he is starting to feel almost constant pain - he cannot get comfortable. He started taking pain meds for the first time since this all started. I'm trying to educate myself but still feel there is so much I don't know such as what is a stent? We were told that there is no evidence of cancer in the bile duct just in the liver which has made us wonder about a transplant. I have been in contact with New York Presbyterian Weill Cornell Center. Is anyone familiar with them. We've decided to pursue the transplant option with or without our doctors support. We meet with him tomorrow - I'm curious as to what his plan is. My husband is currently on Gemzar. Another question - is high calcium common in cc. My husband has had high calcium throughout this ordeal and the doctor has indicated that it is part of cc. Any thoughts. Thanks again for all of your comments -
Hi - I am in Maine and we had a second opinion from Dana Farber. My husband was on Gemzar and Cisplatin but made the choice to stop the Cisplatin. The doctors (both here and at Dana Farber) said chemo was the only way to go because they disease is "very extensive" in the liver therefore surgery is not an option. For his bloating it has been suggested that he gets "tapped" but that will offer only temporary relief. The toughest part at this moment is his INCREDIBLE fatigue. He cannot seem to stay awake for very long and I don't know if this is the treatment or the disease. Is this common?
Hi - I have been reading the discussions on this site for several months and decided today to join on. My husband (age 48) was diagnosed in July. He has been going through chemo but it is showing no improvement. He can hardly eat much and he is quite bloated. We've asked our onc. about the idea of a liver transplant but he doesn't think it is a viable option. I feel at a loss right now. Any words of wisdom would be greatly appreciated.
Posts found: 19
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