August 21, 2016 at 8:37 pm #92853lourdesaliciaParticipant
I usually am not on the boards but happened to come across your post and it struck a cord in me. First I want to agree with what others have said, you will be inundated with information. I want to highly suggest you use a tape recorder, or digital recorder when you go to the doctor appointments. That also may help your dad process all the information and make the decision that is right for him.
As a caregiver you will want to do all you can for your dad. Remember to try to take time for you to process, and breathe.
Sending you many positive thoughts for this journey.
LourdesAugust 19, 2016 at 3:40 pm #92852
Vallerina…..thanks for sharing with us and wish for success with the current treatment. I would however continue to engage with the physician regarding a future clinical trial. Perhaps he/she can explain to your father the viable option of participating in a clinical research study. Good luck.
MarionAugust 19, 2016 at 2:24 pm #92851
Hello again everyone,
I’ve met with my dad’s Dr. He is only the second oncologist that I’ve ever spoken with-they are a special group of doctors! So compassionate and generous with their time! My father has one large tumor and four or five smaller ones. All of them spread throughout the liver. So, not a good candidate for surgery at this time. But he is tolerating chemo pretty well, and I am hoping the tumors shrink enough to let surgery be an option. Dad did have molecular testing done. There is an IDH 1 mutation. The doctor knew of a clinical trial, but dad doesn’t want to leave home. I’m somewhat frustrated because he is otherwise in great health, but I will respect his decision. I am going to do some more research on this, though. Maybe I can persuade him . . .
Cathy, thank you for the info on Dr. Chapman! Hopefully, that will be an option soon!
VallerinaAugust 9, 2016 at 2:37 pm #92850jathy1125Participant
Val, sorry you had to find this website. I just want to tell you I am Dr. Chapman’s miracle. I am alive today because of God, 2 strangers, and Dr. Chapman and team. I have an amazing story to share and keep it posted at http://www.catherinedunnagan.com I am sorry to say though my story took a bad turn last October when my cancer returned after 61/2 years of being cancer free, but for me I remember 8 years ago I was told I had 6-8 months to live, so when I have my pity party I just remember that I got 8 years out of 6-8 months, lots of moments and memories made!
Dr. Chapman is more than a doctor, he is a kind man with a heart the size of Texas, he is very honest and loving. Dr. Chapman is very phone friendly and will move quick in reviewing your dad’s case, he know time is not our friend. Once you contact his office he will have you send records/scans and will make a decision if he can change your diagnosis or treatment before coming to St. Louis. He will not make you travel if he doesn’t think he can help you.
Please let me know if I can help, or if you come to St. Louis you have a friend here.
Prayers-CathyAugust 8, 2016 at 5:09 am #92849
Vallerina….Dr. Rick Selby, USC is on our medical advisory board:
Stanford sees few cholangiocarcinoma patients , you want a center treating a high volume of cholangiocarcinoma patients
Good luck and please keep us posted.
MarionAugust 8, 2016 at 4:38 am #92848debnorcalModerator
Vallerina, the surgeon at UCSF is Dr. Carlos Corvera. Best to your dad.August 8, 2016 at 1:13 am #92847
Thank you again to everyone who has replied to my post! The shock of my dad’s diagnosis has mostly worn off and I have been reaching out for support and doing A LOT of research. Wednesday, I fly out to be with him, and this is my plan of attack: 1. Become familiar with his particular situation. 2. Gather up several sets of copies of scans, tests, etc. 3. Reach out to ICC surgical teams at USC (Dr. Parekh), Stanford, UCSF, and Dr. Chapman at Barnes Jewish in St. Louis. 4. Begin documenting everything related to this, and begin keeping lists. It has been a lot to take in in such a short time, and what with trying to tie up loose ends here in CA before I leave, and just wrapping my head around all of this, it is hard not to feel guilty for not acting sooner! However, regret and guilt will not do anyone, especially my dad, any good. I try everyday to reach out to people that I know care about me and I try everyday to find one thing to be utterly grateful for.
Does anyone know the names of the surgeons at Stanford and UCSF that I should contact?
ValAugust 3, 2016 at 4:49 am #92846jpmskiParticipant
You are on a rapid learning curve my friend. This website is your first stop, there’s a lot of really good information and you need to consume it quickly.
Here is the doctor at USC I reached out to. Very experience, super confident in a comforting way, but also very honest and direct. We flew out there to do the surgery but ultimately too much time lapse and the cancer had spread by the time they did the surgery.
It’s been a little while since I’ve had my brain focused on this so I’ve forgotten some things that might be helpful. You, or someone else, need to start amassing medical records. Don’t overthink it, just get everything. The Univ of Colorado system is good because you can download a lot right from the website, but not everything.
You’ll need to put a package together for the surgeons to review. You’ll need copies of the CT scans on disks (make sure you order enough copies of them) and the reports that go with them. That will be the most complex thing you’ll need to get. You’ll get it from the imaging department at the hospital, I think.
It’s hard to comprehend how busy and how in demand someone like Dr. Parekh is. I don’t know how he goes on vacation. I tell you that because you’ll send this stuff and then you’ll wait until he and his team have time to review it, and frankly that could be a couple of weeks. Time is not your friend.
The number one rule for all of this, and I can’t stress this enough, is to develop a close relationship with the head nurse at every doctor’s office you deal with. They absolutely can move mountains for you. You are in this administrative phase where you need to get into the system and on people’s radarscope.
Make sure you’re organized, you don’t want to waste time searching for things that you know you have. Also, retain everyone’s phone numbers. My contact for the Univ of Colorado hospital must have 10-15 phone numbers on it.August 3, 2016 at 2:27 am #92845
Joe, how exactly do you find a surgeon to do the surgery? I’ve never done anything like this, so what are the steps? Thank you!August 2, 2016 at 11:22 pm #92844jpmskiParticipant
I live in Colorado and have experience with Univ of Colorado, I would touch base with them but I would not take their word as definitive. They told my mother surgery was definitely not an option, but the doctor at USC in Los Angeles said it was totally operable.
There is only two words your father needs to focus on: surgery and spreading. Keep searching for a surgeon until you find one that says yes, and it needs to happen before the cancer spreads or they won’t do the surgery. And this cancer spreads very easily, so there is no time to waste.
Even if he does have surgery they’re probably still going have him to chemo anyways, just to cover those bases. If it was me, I would look at it like there is a big clock ticking.
JoeAugust 1, 2016 at 11:26 pm #92843
Vallerina….sorry, I believed your father was living in California.
You mentioned that surgery was ruled out. I would make sure to have this confirmed by Dr. Richard Schulick, University of Colorado.
MarionAugust 1, 2016 at 10:33 pm #92842
My father is 72. In fairly good health, but high cholesterol and high blood pressure (both treated) and bypass surgery some years ago. He did not have ANY symptoms. They found it because he had a scan of some sort on his bladder, and they just happened to see it. They did not know what it was, thought maybe it was a clump of blood vessels. He actually lives in Western Colorado. I don’t know if they did any blood tests at the time of the bladder scan. I know that they waited three months to see if there was any growth or changes., which was unfortunate. There was growth, so more scans, etc. No cancer anywhere else, and a definite diagnosis of ICC. I don’t currently know who his doctor is, but they have been in touch with doctors at University of Utah. (I think that’s the place.) They did not think surgery is an option. He’s started chemo last week to hopefully get a little more time. I know that I need to find out more: where is the tumor, what size, what stage, etc. He and I have never been through something like this, so we are getting used talking about it still, but he seems very open to getting a second opinion, which I think we should. I will be going out next week to be with him, but I will ask dad for more info in the next day or two. I will post more details here after I find out more . . . Thank you, everyone, for the welcome and concern!August 1, 2016 at 10:08 pm #92841middlesister1Moderator
I’m so glad you found us. Grief and crying is normal . We had many ups and downs with my mother, and although although not all are as fortunate, we just returned from a vacation at the beach at almost 3 years since diagnosis. As Marion said, surgical treatment is the best approach if possible since it offers a cure, but more and more are starting to live with CC as a chronic disease even if not curable.
CatherineAugust 1, 2016 at 9:52 pm #92840
Vallerina….I concur with all said by Lainy. Additionally, what type of insurance does your Dad have and does it cover UCSF, the dominant institution for our cancer in Northern California? First and foremost, a surgical removal of the tumor must be ruled out. Hepatobiliary surgeries are difficult and must be performed by a highly experienced physician.
Hang in there, Vallerina, too much is yet to be discovered and we are here to help you along.
MarionAugust 1, 2016 at 9:13 pm #92839lainyParticipant
Dear Vallerina, welcome to our remarkable family and we really understand. The big announcement from the Doctor is like being hit in the stomach with a bat. But, know that when the treatment begins the fright turns to fight. I am going to post a site below that may be helpful. May I ask a few questions so that we may also be helpful?
How old is Dad?
Where is be being treated? What are they suggesting for treatment.
What is the Diagnosis?
You never know how strong you are until “strong” is the only choice you have! Hang in and hang on as Dad needs you now. Please keep us posted on how he is doing as we really care.
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