Action, not time–please help.
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Hi Heather,
My Mom was stage IV with mets to the lungs when diagnosed. My parents live in Greensboro and I made arrangements for her to be treated at Duke. Her oncologist was excellent – Dr. Michael Morse.
I’m a Cytologist and diagnosed my Mom and I’m pleased to say she got excellent care at Duke.
Check out all of the options and never take NO for an answer.
Come here often, we are all here for you!
Hugs!
Pam
heather, if you havent done so yet you might want to contact the mayo clinic in minnesota and the university of pennsylvania to see if your father would be eligible for a transplant. when my sister was diagnosed we contacted the mayo clinic. they reviewed her records but unfortunately we were told she doesnt qualify for transplant. we also contacted u of p. the dr there said they actually do more transplants than the mayo clinic. i dont know if that is true but that is what he said. my sister had her resection surgery at penn and is now home waiting to start chemo. this disease is frightening but you just got to keep fighting and looking for options. i wish you all the best.
Thank you, Tom! I will check that out….we’re in Springfield! Hello to you too!
I’m going to switch over to “General Discussion” to post something…see you there.
Heather
Hello InGodsHands–
May I recommend a new book entitled “Knockout!” by Suzanne Sommers, the celebrity star-health author. In it she interviews several “cutting edge” cancer doctors who are curing cancer patients with “outside the box” treatments, often other than radiation-chemotherapy-surgery.
P.S.: I’m in St. Louis so hello, neighbor!
God Bless you and your papa.
-Tom
Thank you to everyone who has replied…it makes me feel like we’re not alone. My parents are in Pelzer, SC–outside of Greenville–Easley is very close. He is supposed to be going home tomorrow–10 days after surgery. His doctor is amazed at how fast he’s recovered. Hopefully treatment will fall in that same line too! I guess the next step is to find a treatment path.
I appreciate all the feedback on certain drugs and cancer centers. I saw a commercial today for Cancer Centers of America–a sign from God?….perhaps…I’m praying He will lead us in on the right path and that His will be done.
Please let me know if you guys hear of any other updates or treatments that are successful–it seems overwhelming. It’s inspiring to read about the “2 months to live” “6 months to live” etc., and you all are still going strong. May God bless each and every one of you. My love goes out to you all.
Heather
Heather – my sister has cc and is being treated at Emory / Winship Cancer Institute in Atlanta. They have a wonderful team of doctors there that are willing to explore every option.
Terri
Where are you in SC? I believe there is someone at Hollings Cancer Center (which I think is part of the medical school in Charleston) that has some experience with cc. There are a couple of drug trials at Duke that may be interesting as well.
Listen to the doctors. Get your fathers things organised THEN forget what they said. Doctors know what should statistically happen, but not what WILL happen. And we all know none of us are statistics!
Kris
I have no input, except to say that it’s wonderful that you are going into this with such a fighting spirit. Don’t give up on that. My Dad has inoperable CC (diagnosed in January), and we don’t know how much time he has left so are enjoying every second of every day we have with him. I understand your pain and the feeling of it destroying you – my heart broke when Dad was diagnosed and we realized how little could be done. However, like others have said, cases are SO different, and your Dad could VERY well have much more time then the year they are saying. I truly believe that nobody can possibly give a time frame with this cancer, and think it’s ridiculous they did with your Dad. Good luck with whatever course your family chooses to take. Know that I, and many others, are thinking of you all.
Jen
I get upset when I hear doctors say things like “you have 12 months to live.” They don’t know! Three years ago I was told I had 3 weeks to live. So there! You are immortal until God is done with you on this earth. You just never, never know who is going to survive long term and who isn’t. Why not believe that you are the one to live longer than most?
Heather:
Never give up! In my husband Tom’s case, they did a resection where they removed about 80% of his liver. The liver does heal and regenerate. His doc’s told him no chemo and no radiation because they had clear margins. 18 months later he presented with jaundice and they found a new tumor. His doc said 6 months and chemo and radiation would not help. Now, here we are 9 months later (after radiation and chemo) and we are still going strong (with a few bumps and twists and turns) but we are hoping for another 6 months then another and another. NO ONE has a expiration date stamped on their butt! So take a deep breath, blow it out slowly, then take it one day at a time. Build those memories and hold your loved one close.Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Heather,
It’s amazing, I never knew until last year (why would I?) that the liver is the only organ that can regenerate itself. Like Mom and I always said, like a lizard’s tail!
This cancer is so rare and every case is so different. They recommended for my Mom’s case that she have chemo after recovering from the resection, in case there were microscopic cancer cells still in her liver that the surgeon couldn’t have seen during surgery. She started about 6 weeks after surgery on a combo of Gemzar and Cisplatin. The side effects weren’t too bad, just some nausea and hair thinning. (She was actually quite PO’d that she didn’t lose weight, since she was overweight before all this started!) The side effects were managed very well with anti-nausea meds via IV during each chemo session. She ended chemo last December, and we found out Christmas Eve that there was no sign of the cancer anywhere and she was considered “in remission.” What a Christmas it was.
Every case is so different, as I said it’s so rare. Hers did come back, diagnosed in June. But there are so many success stories on these boards, and so many long-term survivors – in some cases many years. The way I look at it, it all comes down to constantly educating yourself on advancements, reading and researching, being an advocate for your family member, and not giving up hope or losing faith. Even now, with my Mom on hospice, I still hold a glimmer of hope, no matter how small. Even if she can’t be cured, that God will grant her plenty of time, and that the time she has will be comfortable and joy-filled, surrounded by family.
I hope you don’t mind me posting this – based on your reply and your user name, you might love this. It’s a quote from Gloria Gaither that I keep coming back to time again during this journey: “God walks with us. He scoops us up in His arms or simply sits with us in silent strength until we cannot avoid the awesome recognition that yes, even now, He is there.” May you feel his silent strength!
The tumor is on the remaining part of his liver, but it’s not anywhere else, so that is very positive…I just can’t imagine a cancer not responding to treatments?! They are in SC, I am in MO. They may look into Duke Health–the university. I’ve made phone calls to about 7 centers from the list on this site. I’m praying that God will lead us on the right path. With only 30% of a liver left and it NOT being anywhere else, I just can’t imagine 12 months. Thank you for your reply. May God bless your mom and your family.
Heather, I don’t blame you for not wanting to accept that. What were the results of the resection, did they think they got all the cancer? Did they see evidence that it had spread anywhere?
Get a 2nd, 3rd, even 4th opinion until you’re comfortable with the doctor and their action plan for further treatment.
Where do you live? One of the links at the top has a page for major cancer centers.
Hang in there and FIGHT for your Dad! You are doing the right thing by not accepting the first opinion. Continue to be his advocate!
Hello everyone. We found out my father has cholangiocarcinoma last week. He had 70% of his liver removed and they’ve given him 12 months to live (with or without treatment). He’s not a “good” candidate for a xplant.
I refuse to accept that. Can anyone tell me who to go see and what he can do that will send this cancer running. I don’t want the “expert” doctor who can give him months, I want someone who can give him years–short of God himself. My head is spinning and I feel like this is going to kill me, my heart is broken and all I can do is fight..I feel like I’m staring at an hourglass. Time is not on my side right now.
I’ve been reading some posts, not without tears. My heart goes out to every single one of you and your families/friends who are going through this. I can’t accept 1 year, I reject that with every fiber of my being. Please help.
Thank you.
Heather
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