November 3, 2011 at 2:34 am #54190pamelaParticipant
I just wanted to welcome you to this site. I find so much comfort from all of these wonderful people and hope you will too. My daughter, Lauren was diagnosed with cc on Aug. 29,2011. She is probably around your age. She is 25. I am 53 as well. I wish your dad all the best. I hope he starts to find success with his chemo. It sounds like he is in great shape and able to fight with everything he’s got. Much hope and prayers coming your family’s way.
-PamNovember 3, 2011 at 1:10 am #54189marionsModerator
Erin…we are looking forward to your Mom’s postings also.
All my best wishes,
MarionNovember 3, 2011 at 12:34 am #54188
I’ll be sticking around. I also told my mom about this forum, so she may join, too.
It’s great to find a group of people who can relate to what you’re feeling.
Thanks for all of the kind words; I truly appreciate them.November 3, 2011 at 12:11 am #54187jathy1125Participant
Erin-Welcome and sorry you had to find us.I am sorry about your dad, I was 52 when diagnosed. I am a CC survivor. There is HOPE.
I did chemo and radiation and had very little side effects. Nausea, which can be controlled by meds and very tired, which meant more recliner time! I would encourage your dad to take everything they have to offer, since he is physically storng. This is a very difficult cancer to beat or stabilize.
Your dad is very blessed to have a great family to love and focus on.
Please keep posting, this site is full of love, info and HOPE.
Lots of prayers-CathyNovember 2, 2011 at 11:24 pm #54186peggypMember
Welcome to the CC family. My husband was diagnosed 3 years ago when he was 55. He also ran and was in good physical health otherwise. He just started on a new chemo, Xeloda, yesterday. He also has a positive attitude and sounds just like your dad. When he was first diagnosed, his first words were “it is what it is”. He questioned his surgeon whether he had done anything to contribute to this disease but the surgeon said, “it was just the roll of the dice.” So stay positive along with your dad and just as others have said, it will carry you a long way. Sending well wishes to your dad, PeggyPNovember 2, 2011 at 10:31 pm #54185lainyParticipant
Hello Erin and welcome to our wonderful family of courageous and caring people the world over. I am sorry about your Dad and like others have said he has ‘youth’ on his side along with being in running condition! You have done all the right things and that is a plus as well. Your Dad has a great attitude and I know its tough but you all have to try and support that attitude by being as strong as you can. Try not to think so much about what the future holds and just enjoy the moment! By the way you know that the Grandchildren are the best RX! Please keep us posted as we alll really care.November 2, 2011 at 10:25 pm #54184marionsModerator
Hi Erin…a warm welcome from me also. Your Dad is in great physical and mental shape, has good medical advise, a love for life, and the most supportive family imaginableNovember 2, 2011 at 9:52 pm #54183
Dad just ran the half in Indy this past May. I was just telling my mom last night that awhile back I still realized I had the text notifications they send you when they pass checkpoints–I just can’t bring myself to delete it and have been looking at it a lot.
He has been to two local cancer centers (here in Lexington, KY. One was a smaller cancer clinic and one was UK’s cancer center). His other opinion was at Cleveland. His oncologist at the smaller center had consulted with Mayo, as well. The smaller clinic is where he is being treated, but the treatment plan the doctor had was what the other centers agreed on (and that Dad was comfortable with–Cleveland wanted to start with radiation, but Dad was not comfortable with that).
His original treatment was 2 weeks on/1 week off of gemcitabine, with carboplatin every 3 weeks. Now he is getting 3 weeks of gemcitabine with 1 week off, and then cisplatin. He had his first infusion of that on Monday, and hit the road Monday night for work (he travels a lot for his job, and it’s what he loves doing). As of now, he says he doesn’t feel sick, just a little funny.
I’m not sure when his next scan is. The radiologist and oncologist didn’t agree at first and were working that out.
Thanks for taking the time to welcome meNovember 2, 2011 at 9:44 pm #54182groverMember
I also was diagnosed in July and have been on chemo since, more of my story is on ” Road traveled by others ” so I won’t repeat it here.
I also am somewhat of a runner, but have to heart or desire to get out there right now. I have run 3 Mini Marathons and actually had entered the Indy Mini b4 the 500 mile race in May. I thought next year I would be 65 and that would be like a milestone year to run it. But plans change don’t they. I still have time but I just can’t train right now.
Congrats on your dad still running, they say exercise is one of the best things you can do to fight cancer. If someone offered me $ 5000.00 to run the Mini, I still wouldn’t get out there and train. Just a mental thing I’m fighting.
This place is great for support, answers and prayers. Keep us posted.
GroverNovember 2, 2011 at 9:04 pm #54181pamParticipant
Erin, thank you for posting your dad’s story. I am sorry your family has to go through this experience. My dad’s resection was aborted for the same reason. Many more lesions than he surgeon expected, too. My dad lost his battle with cc almost a year ago today. He was much older (75) and had other health issues. He was only able to tolerate a few rounds of chemo. Your dad is very strong, fit, and very young. I hope he will soon receive some good results from his chemo. His attitude is excellent. I know it is such a worry for you! Take care of each other and make those memories.November 2, 2011 at 8:46 pm #54180gavinModerator
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your dad. But I am glad that you have joined us all here as you have come to the right place for support and help, and you will get a load of each of both from all of us here.
Sorry also to hear that your dads surgery did not go as you all had hoped. Unfortunately, this is quite common with CC and we have many members here who have gone through the same experience regarding surgery and it not being able to be done. Your dad did the right thing regarding getting further opinions on treatment, did he get them from major cancer centres? As to his chemo treatments, do you know what he started on and what treatment he is on now? Was it the Gemcitabine/Cisplatin chemo he had first? Also, when is your dads next scan?
From what you have said, it sounds like your dad has a great attitude and this is a great thing indeed and will carry him far. It also sounds like he is very fit indeed!! Feel free to ask any questions that you have and we will all do what we can to help in answering them, the more information you have the better informed you will be when it comes to helping your dad. Looking forward to getting to know you more, and please keep us updated on how your dad is doing. We know what you are going through right now and we care.
My best wishes to you and your dad,
GavinNovember 2, 2011 at 8:31 pm #5853
My name is Erin. My dad, Tim, was diagnosed with cancer early July. All we knew was that he had liver cancer. We left the next day for our already scheduled vacation to Florida. The trip was hard because we were left with so many questions–would this be our last trip? We all tried to enjoy ourselves, but I had a hard time, just wondering if there would never be a vacation that my kids would actually remember taking with him.
After many scans, we were told that it appeared it was contained within the liver. Surgery to resect the tumor was done early August. Unfortunately, the surgery was much quicker than expected, and we were told that when they opened him up, they found many small lesions not picked up by scans, and they were not able to resect anything. That had ablated all of the lesions and the tumor, and we’d talk treatment in 4-6 weeks. Cholangiacarcinoma was what we were told he had.
Dad is a marathoner and very healthy, and only 53 years old. We were told he could handle the highest amount of chemo possible, and that was on his side. We got 2 additional opinions, with the same advice on treatment given.
He started treatment mid September. The scan before he started showed new growth, and the scan he had last week after his first two rounds showed even more growth (new growth and the existing spots were larger). Treatment was changed a bit. He is still working, and still running about 7-8 miles/week. He has accepted that “it is what it is” and has a great attitude about it, though he’s very sad to leave his family. He loves everyone, and is the best grandfather you could ever imagine.
I’m looking forward to getting to know people who have gone through this journey with such a rare cancer.
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