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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.
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Posts found: 1 to 25 of 39
Hey, I wanted to finish reading that! You stopped at a cliff hanger for me! I've/we had two of those "check ins" from Tracker. We were very fortunate to be in attendance for his transition the day before he passed. Are you thinking of something like that to be included?
I think it's a wonderful idea. How do you wish for the information to be sent to you?
Good Morning Ceci, My 30 year old son was diagnosed June 13, 2012 and he also never joined this site. But as his Mom and the family researcher I was on it day and night looking for help and answers, which I received in abundance! I can honestly say I learned more about CC and found different avenues to research here then anywhere. Knowledge alleviates some of the fear. Then when the Oncs recommend something you understand what they are talking about and are able to ask intelligent questions. This helped my son enormously as he didn't have to "fight alone", I brought him all the information and then he would decide. The wonderful people on this site taught me how to help alleviate the small annoying side effects that come along. Hiccups, constipation, etc... I highly recommend you spend a lot of time learning to navigate through the older posts and all the sections. The information here should be printed in gold ink! Best of luck to your daughter, you and your entire family! Fight hard! You may wish to Find the link to Melinda's posts, she's in a really great clinical trial that has a lot of promise , I believe. She will fill you in if you email her directly! Lorina
Please accept my sincere condolences. Jeff sounds like a remarkable young man. How fortunate you all were to have each other for as long as you did! Be kind to yourselves.
Trackers Mom Forever 10/21/81 - 3/2/13
Dear Pam & Family,
I did not think my heart could break again but it did with the news of Lauren's continuing on with her journey. Bless Lauren and your entire family for the unselfish courageous war you all waged against CC. The world is a better place for her bright light having shown here, even for such a short period!
Be gentle with yourselves,
Trackers Mom 1981 - 2013
So very very glad to hear the great news!!!
My sincerest condolences to you and your family. I hope with time all your memories will be happy and heart warming. It is so wonderful you made sure your Fathers wishes were respected. Peace to your family.
So glad to hear Lauren's doing well! She's young and strong, she's got this handled!
My strongest wishes have been and will remain with you and Lauren. I hope we very soon hear CANCER FREE from you! She's a fighter obviously, that little old tube in her throat is nothing compared to what she's already beat down! Smile your little girl is going to do great!
Thank you Ladies for your kind words.
Your Father and your family's courage at this time shows the great love you have for one another. Your Dads decision was the same as my sons and I do not regret one moment of being next to him on his journey. Hospice was wonderful. This is usually a painful cancer and I had promised my son there would be no pain, as that was the one thing he feared. We did have to press Hospice for more and stronger meds the last week. If it helps at all, follow your heart. If you feel he is in pain, help him. Be HIS advocate and insist upon his complete comfort. Do not doubt yourself! We did use one suppository prescribed for every 12 hours at four hour intervals. It worked to relieve him. After the new nurse called and got over being upset with me she realized he had not been prescribed an adequate amount. She fixed that oversight immediately. So follow your heart in his care. The only thing I can say that might help your sorrow is......we are not a religious family, but we were fortunate enough to spend a few hours watching my son transition. As his Mom it soothed my soul to KNOW he was not alone and see for myself the most amazing unexplainable and soul comforting interactions he had with ?, two days before his passing! I try to keep thinking of that as right now the air hurts to breathe, I'm missing him so. My best wishes for peace and comfort for your Dad and all of your family!
This board has been so valuable in our, my familys, fight against CC. My own opinion is prepare for the worst but fight for the best. The only true information I was able to obtain came from right here! I could not put my head in the sand and ignore the facts. This board helped me help my son live the best life possible and helped me to know we were not alone in this fight and everyone's CC does not take the same road. Just as reading the good news one needs to read the sad news and process the information. The open honesty and compassion here armed me to help my son, my family and myself. This board is where I came to look up every question about stats, symptoms, what to expect and how to help. The medical community does not know and has nothing like this board available. I wouldn't change a thing! And the small doses of sad news, interspersed with the good news, gently leads all to what might happen. Just my opinion and of course my never ending gratitude to all of you!
Thank you Phillip and Lainy. My daughter-in-law worked very hard on the video. I think she missed her calling. Phillip please fight hard and live every moment! Enjoy your Willys-the greatest vehicle ever made, lol! Tracker is smiling from above I'm sure!
I need to post this in remembrance and fundraising. When my son was diagnosed with CC he had two wishes. 1 Move home and spend his time with family and friends. 2 buy an old Willys Truck, like he had in high school, and renovate it. Well he did both. And what he couldn't finish this wonderful community we have did......he passed eight days after it was completed. We plan on using the Willys as exhibition at car shows, running the video and posting his CC story. We will be using it to request donations for this CC Foundation in his name.
My daughter-in-law made the video, and did the most fantastic job. I would like to share it with all of you. If you go to You Tube and search Kendram250 it will take you to a 1953 Willys. You can feel the love and happiness!
My son continued on his path last night, March 2, 2013 a little after 11:00 pm. He made it easy to care for him with never a complaint. It has been a terrible experience on one hand and an eye opening, life and attitude changing experience on the other. There are more things to be grateful for then not. At this moment I'm having a difficult time remembering those things. But I will and I will write them down so I never forget.
Do you know there is no descriptive word for a parent who loses a child? You have Widows, Widowers, Orphans, etc.....
Thank you all for the priceless unselfish information and support given here. You have made this journey easier for those who come after you! I will return and try to do my part.
Thank you ALL for your kind words. My son is on Hospice here at home. They are always available by phone and are ensuring we have all meds we need for his comfort. Our family doctor has been closely involved since the beginning and has made himself available to us and Hospice 24/7. He has been our Doc since my sons were very young and when I watch his face I know this is very difficult for him also. Again, Thank You all for your support and kindness to every person who reaches out. Best wishes to all in their own battle and here's to more Victors!
You are not alone. My heart goes out to you. My 31 year old son is experiencing almost exactly the same issues as your Dad. He is not on blood thinner but he is scheduled for the Plurex catheter to be placed on Tuesday. He has been "drained" twice in as many weeks and it is very difficult for him to bounce back. I agree, the weight loss and extreme thinness are heartbreaking constant visuals. I don't know if this will help you but it did me........I have been angry that first of all this has happened to my child and secondly that it plays out so cruelly in the end stages. But a couple of days ago my son was sleeping and while watching him I found myself wishing (with all my might) that he would pass, right then right at that moment! It was then I realized it would be much harder to lose my son while he was feeling great, looking great, laughing and enjoying. FOR HIM I want peace and no more pain. My hurt and longing for him will be forever, but my wish for him to be free of this diseased body and to go on with his journey is strong. In other words I will be happy FOR HIM when he passes. I will eventually be strong enough to honor his short but wonderful life!
Good Morning, I needed to let you all know the status of my sons fight. It has been a very challenging week. The CARBO/Gem did not work and his scans last Friday showed an all around 1 CC of growth. What took 5 months to shrink took 5 weeks to recover its lost ground. He is now on oral Zeloda and numerous naturopath support vitamins and herbs. He is doing very well all considered.
Dr. Kato's office phoned on Tuesday am. They quietly informed me he is not a candidate for surgery. This makes five surgeons throughout the USA who have told me "no surgery". We were told to seek clinical trials, as more chemo is just not palatable , we checked in with Melinda here on this site. She lead us right where we wanted to be. We, as a family, do believe the Maryland trial holds the most opportunity for a cure. The CTCA overnighted all of his records to MD. Within 24 hours they kindly and compassionately informed me my son would not survive long enough to complete the six week culture production time necessary.
He is up walking, driving, talking and engaged at this time. Now that we know the signs of the disease progression we are able to see the slight changes as his tumors expand the cavity surrounding his liver. His liver has a few large tumors and many small ones "too numerous to count". His pain level is increasing daily. This is being controlled mostly with methadone & oxycodone. He is using marijuana and it is keeping his appetite healthy which is keeping his strength up. He is eating less everyday as his stomach shrinks.
We, as a family, are all here. His brother has come home from school, his girlfriend who would be his wife if this had not happened, has moved in and all our dogs are here. Whether the Zeloda works or not, we are together and happy. We are surrounding him now while he is still well enough to "play" and we will stay with him for the remainder of this journey.
I wrote this to help anyone else who may need it. We are good, happy and strong (the strength thing seems to come and go). There is a silver lining to this disease in the midst of the wrenching heartache. Every breath and moment is sweeter then it has ever been in my 52 years.
I hope all of you have beautiful healthy happy winter holidays.
Thank you for the opinions. I don't mean to be skeptical but.....really Vit C? I have had a few people suggest these infusuions to us but if cancer were that easy to cure we wouldn't need this forum. I do believe great nutrition and exercise are invaluable in helping your body combat and heal but not without the tried and true chemo, etc.. Her blog just caught my interest when she said her liver hurts but the cancer is gone. I didn't know if it really was possible to have the response she has had without surgery. I'm very very happy for her that her hard work and attention has paid off. I hope she enjoys great health for the rest of her life! Again, thanks for the link and the responses.
I've been loosely following a young woman's blog who states she was diagnosed with non-resectable intrahapetic CC two years ago and through chemo, supplements, strict strict diet and Vitamin C infusions, she no longer has any signs of cancer. It's under The Cancer Assassin and she's from Portland Oregon. I was hoping Eli, Percy, and all others, if they had time might take a look at her story and comment. My main question is, is it possible she was misdiagnosed? Or even better is it possible her liver mets were that bad and her lifestyle change truly cured her? (I don't want to bring this up to my son until I've received the opinions of those of you who have been in this arena much longer than myself. )
My son had terrible incidents of hiccups for two or three days following chemo and nothing worked. I had remembered reading Lainys recommendation for the Brioche-sp and searched my small town high and low for it. I called my sons girlfriend who immediately found it at a CVS near her. He has used it maybe three times and had no more issues with hiccups. I never would have known about it if not for the sharing on this forum! THANK YOU LAINY!
I understand. We made my son go immediately and get a card. I use to have such a skeptical attitude regarding the true medicinal use. I am now a true believer and a huge supporter after having seen the remarkable results. And like your friend, I will do anything to help my son.
My son had the same issues. His weight loss was drastic and quick. He tried all of the natural path and pharmaceutical options but nothing worked and he continued losing. We live in Ca. and a friend brought over a vaporizer with marijuana. Within 10 minutes he wasn't just eating he was enjoying the food and holding it down. Absolutely amazing. There is a pill form that the MD can prescribe. It does not work as quickly or as well but it is available. His Naturopath Doctor said the real thing, as long as grown organically, has numerous benefits beyond nausea control. In my sons case I do believe it truly is medicine as he has not only been able to conquer the nausea but has also gained some weight back. He uses such a small amount at a time you would not know if he didn't tell you. I hope this helps, just another option.
Hi Kristin, I join everyone else in how sorry I am about what you and your family are going through. I know when my son was first diagnosed his breathing was particularly worrisome to me also. It turned out to be painful for his lung to inflate and push on his swollen liver. This may be the same for your Dad. After a couple of chemos and with the right pain management that did go away. It would be nice if someone had a list of what to expect but no one does. Best of wishes to you, your Father and Family.
I had to smile and laugh, thank you so much! You're right it only causes stress and worry! And apparently from all the ranges of numbers here it really is not a sign of things worsening. I feel so much better! The fear just gets ahold sometimes and I can't shake it.
Thank you everyone and I will let you know what Dr. Kato's response is when it arrives.
Posts found: 1 to 25 of 39
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