My dad and his CC
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Hello DaddyLove
I am sorry to hear that your Dad refuse to undergo surgery. Based on your presentation it appears that he is still a surgical candidate for whipple procedure. Perhaps you can convince him. Unfortunately he has this terrible tumor but the good news is that distal and middle 1/3 cholangiocarcinoma of the common bile duct have the best survival rates after surgery. Five year survival rate is up to 40%.
Good Luck
Dr Canadydaddylove wrote:Found out today that he is still a candidate for whipple after putting it off for 6 months! I’m exited and scared at the same time.That’s wonderful news? What changed your Dads mind?
Wishing you all the best
Andrea
Found out today that he is still a candidate for whipple after putting it off for 6 months! I’m exited and scared at the same time.
Hi Daddylove,
Welcome to our cc family. My Dad was diagnosed with inoperable CC in April 2010. Despite 3 stents and an external drain Dad hasn’t had any chemo as his bilirubin is too high. September we were told there was nothing else they could do and Dad has 3-4 months.
Guilt is with me everyday. We are looking at second opinions, one including Cyberknife. I wonder if I had pushed the cyberknife or second opinion option more then we might not be at this terminal stage. At the time Dad thought he’d get Chemo so was happy with the treatment he was getting and I had to accept that decision, if we’d have known at the beginning chemo wouldn’t have been an option then we would have acted faster on the second opinions. It is all if’s and buts.
I think Tom puts it into words perfectly, it is an emotional rollercoaster and there is no perfect answer.
Like your Dad, mine is doing really well considering, and we are grateful everyday for that. He still cares for himself, eats, though smaller portions and little and oftern, and luckily is in no pain. He has also suffered from a “full” feeling but with trial and error through food we seem to be getting it under control. it is definatley due to digestion. Perhaps your Dads doctor could prescribe something for it like lactalose, or if he wants to keep to natural remedies, pear juice has been mentioned.
Please keep coming back to us, from experience the people on this site have kept me sane the last 7 months, and we really can understand what you are going through.
Take care, and best wishes to you, your Dad and family.
Andrea
daddylove….I would like to follow all others in welcoming your to our site. Way back, when this forum was still in its infancy, several of the members had been serious runners such as your Dad and we were wondering whether this disease is prominent within the group of very active people only. Quickly did we learn though, that Cholangiocarcinoma does not discriminate, as it affects people of all age groups. (There is though, a higher incidence of occurrence in the mid-fifty, early sixty age group.)
Kris once mentioned to stay realistic and positive when dealing with this cancer and I believe that to be of good advice.
The mild bloating you are describing is not uncommon and it can become quite bothersome. There are numerous discussions re: the importance of regular bowel movements which you can find easily by using the google search function, top, right side of page.
I am glad that you have found us and am looking forward to many more of your postings.
Best wishes,
MarionDear Daddylove – Your love for your dad is admirable. Keep loving him and supporting his decisions. For that there should not be any regrets. We all do the best we can every day and who could ask more than that. Hang in there. Keep coming on to the site and know that we care and we truly understand. Blessings, Susan
Daddylove,
I cannot imagine your dad wanting you to feel guilty. Sounds like he made choices that were “solid” for him and he has chosen the path he wants to take. Do we all agree? Maybe not, but you are there to be his best advocate. We are all here to listen, in whatever way we can help.
best,
Stacey
Daddylove,
I don’t have much to add on the advice side, but regarding you feeling guilty…..I think you just need to let it go. I’ve had my own doubts when I forgot to make a call, didn’t do enough research, etc. But I have learned that we are all here because we care, and none of is perfect. This disease treats everyone so differently, so I think it’s best to make a decision with no regrets. We have enough of an emotional rollercoaster without second guessing every decision we make….because there is no perfect answer.
Good luck with everything, and we are all here to help.
Tom
Thanks to everyone for all the caring messages! And no, I’m not upset lainy! I really appreciate your advice..I do wish that my dad would have decided on whipple when he was a candidate and I feel like I’ve made a huge mistake for not convincing him to have the surgery…I might regret and feel guilty for the rest of my life. I think My dad would have listened to me as he trusts my judgment, but at the time, we both felt that healing naturally was the way to go…gerson does not work for everyone, but it was a gamble we took…and who knows? Maybe he wouldn’t have tolerated the surgery or have recurrence shortly after? We would never find out. Only thing I can do right now is support him and try to find the best possible treatment for him without compromising quality of his life. Just like nancy has mentioned, there’s no right or wrong way to go about fighting this disease..it’s a personal decision. Please don’t feel like you’re offending me in any way when you offer suggestions and posting comments. I really appreciate everyone’s replies. Nancy, I’m very sorry about your beloved son John. I’m sure he’s very proud of you. Gerry and lainy’s husband, congrats on your way to recovery! Thanks everyone for all the support!
From los Angeles
Hello Daddylove and welcome to our wonderful Family. I go along with what Gavin has said about having the Whipple. My husband had one 5 1/2 years ago and we feel the Whipple gave us the gift of his still being here. The only thing we do know about CC is that the only way to have a chance to remove it is by surgery. I encourage you to get another opinion and to think about the Whipple and if it makes dad feel better he can still keep up with his natural healing. I don’t wish to upset you but he has already left behind 6 months. Please keep us posted, we do care.
Hi Daddylove,
Welcome to the site. Sorry that you had to find us all but I am glad that you have joined us here. And I am sorry to hear about your dad. I am glad that you have joned us here as you and your dad will get a ton of support and help from everyone here.
I know how hard this is to watch your dad go through this. My dad was diagnosed back in 2008 with inoperable CC and he had PDT as his treatment. I was there beside my dad as he went through that ttreatment and that meant my dad staying in a darkened room for 6 weeks or so after his treatment. I also took my dad to all his meeting with his doctors and was there when we got news etc, so I do know what you are feeling right now even though I am not a medical professional.
From what you have said, it sounds like your dad seems very keen on trying and using more alternative therapies rather than things such as the whipple surgery and chemo and can I ask why this is? You say that your dads doctors say that the only option right now is chemo, so why is he so against this? And if he is against this as you say, has he looked to get another opinion?
I so hope that the treatments you mention do work for your dad and I will keep my fingers crossed that they do. And I am looking forward to hearing from you again.
My best wishes to you and your dad,
Gavin
Daddylove
Welcome to the CC family – I’m delighted you found us as I’m sure you will find everyone here so helpful as you advocate for your dad. I’d also recommend that you encourage your Dad to join the site as he comes across as a positive guy, well able for the fight against CC. I had a whipple last May, it took about 3 months to recover and I’m back at work since August. I’m now cancer-free and not on chemo. You mentioned your Dad was a candidate for a whipple and I’d encourage you to look again at this option. As I understand it, surgery is the only curative option.Take care……………………………..Gerry
Daddylove – You will find wonderful support on this web site. We have all so many experiences to share with you. Each patient must do what is best for them. This cancer is a tough one…that’s just the truth. There does not appear to be a right or wrong way to go about fighting it. The only positive results have seemed to come when someone is diagnosed early enough to undergo liver transplant. Give your Dad all the love, respect, and support that you can. He sounds like an incredible man. Feel free to ask any questions on this web site….it is a source of great comfort to all patients and caregivers alike! – Nancy
Hello, everyone…It’s nice to find all the CC supporters and fighters!!
My dad was Dx’d with CC in the common bile duct n Apr 2010. He is 66yrs old. At the time, he was a candidate for whipple and he opted not to have the surgery and chemo and decided to head down to mexico in Tijuana for gerson therapy. I’ve been doing a lot of research on curing cancer with nutritions before my dad got sick and he wanted to heal himself naturally. Since his return from mexico (he stayed for 2 weeks) he’s been hospitalized twice for infection. He had plastic stent placed intially at the time of dx then had a plastic covered metal mesh-like stent placed. Last CT on Oct showed that the stricture had gottened longer from this liver to his pancreas. My dad is suspecting that this is related to his infection. Doctors are saying his alt therapy is failing and cacer is spreading. My dad’s only option in dr’s perspective is only chemo at this time. My dad is refusing chemo and has started to take ginseng roots and mistle toe injections (one that suzanne summers took) along with his gerson protocal. My dad is currently feeling very well other than some mild bloating that is torerable. I’m an RN (for 8 years, not an oncology nurse though) and I respect and support his decisions. It’s very hard to see my dad go through this as he was a marathon runner and a finisher of 35 full marathons right up until time of his dx. I’m hoping for a miracle and my dad is 100% confident that he will beat this. He is reading the book called “secret” and putting it into practice everyday. His full retirement is Oct next year and I’m just hoping and praying that my dad will be around for a long time. I’m hopeful/positive but at the same time, I find myself preparing for the the worst. As a nurse, I’ve seen many devastating ilnesses and lives ending, but I realize now that you just don’t know how this feels like until you experience it yourself as a family memeber not as a medical professional. This experience has put my nursing profession in a different perspective. All the CC family members and fighters, Let’s be strong! Cancer is something you can learn to live with….without destroying it.
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