dukenukem
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You have to be aggressive, especially if your onc has little or no experience with CC including the distinctions between intrahepatic, perihelar (Klatskin), and distal (extrahepatic). Do your homework by researching on this site; you may have to lead your onc, radiologist, and surgeon to possible treatments. Don’t let them get off with the answer of “That’s not the standard treatment.” or “I’ve never used that treatment.” or “Insurance won’t cover that.”
Here is a link to probably the definitive summary of most of the treatment options out there today. It is long, but well worth your time.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7843&p=2 may also be of help.
Duke
If the port was installed right and is working right and they are keeping it clean, then it’s the right answer. I had mine installed last Thursday and my first treatment with FOLFOX6 was today. The nurse said the surgeon did a good job on the install. She has seen many patients where it was not lined up properly which resulted in major headaches for the nurses. (The cancer center stopped sending patients to that hospital.) Tonight is the first night sleeping with the pump.
Duke
As a patient, this is one of my worst fears – that eventually things will deteriorate so much for me that I will hurt those I love who are trying so hard to help me. All I would hope for at that time is their understanding and that they remember the good times when I was myself. I’m sure that is what your mum would say if she could express herself fully. You summed it up – be strong and do the best you can.
Peace.
Duke
Porter –
If you can, banish the fear and the feeling of being alone. We are here for you and you have your faith to sustain you. As for fear, you’ve faced worse and come through it. You’ll come through this, too. Your team will be working to get you whatever treatment might be necessary, so let them do their job. Your contribution as part of the team is to stay strong and fight this, mentally and physically.
Peace,
DukeKrisV
The question was easy as are the answers. Now someone needs to connect the dots after we get more info. If i was easy, someone would already have done it. I’m just trying to ask the question a different way and hope that people’s answers will trigger the memories of others.
Duke
In no particular order:
Dr. 1 really doesn’t want to Dr. 2. In fact, when they did, they went away with two different ideas on what the other said.
And I’m missing the big picture on the Dr. visit. When I was on a two weeks on, one week off schedule, I would have a blood sample taken, start the preliminary chemo drips, then go see the doctor pushing the IV tree. Then back to finish the chemo. So, why did you doctor call off the chemo? The only time mine called it off was when my platelets were too low.
Why did they insert a port so soon?
I think there is a secret script for doctors who are not CCA knowledgeable. You take a certain treatment for x months then you have to change to something else, even if it is working and you are tolerating it well. That way they can say “I followed the standard treatment plan.”
OK. Last thing.
Negative emotions.
Anger is ok initially. Get it out and over with. Don’t hold it in. Then stop it. It only hurts you as a person.Frustration. Understandable; from time to time. Let it go. Visualize waves breaking on a beach.
Sadness/anxiety/depression. Release. What has happened is past. Look to the future.
Fear. Not allowed. It freezes you. Makes you make bad decisions. Makes you second guess yourself. Face it – we’re going to die “before our time” (whatever that means). Make every day the best you can for yourself and those around you. On any given day you probably have a higher chance of dieing from a car accident on the highway than from CCA. That doesn’t stop you from driving, does it? You don’t panic every time your husband leaves the house, do you?
Positive emotions.
Love. First, last, and always. Know that there are many who love you. Family and friends. Your family on this site even though we have never met you in person we love you and hold you close in our hearts. God loves you.Faith. There is an order to the universe. We don’t understand it, but we don’t have to. I don’t understand how a computer and software work, but I use them daily. (I will admit that sometimes my faith in Microsoft is strained.) If there were no order and life was an accident then there is no purpose to anything. I refuse to believe that.
Take a couple deep breaths, hug your child then kiss your husband and hold him tight.
Peace,
Duke
From the ICPR data base: (177 responses that were complete)
18 responders had been to Japan before diagnosis.
3 to Laos
12 to mainland China
8 to Russia/USSR
7 to Taiwan
10 to Thailand
14 to Vietnam
(total of above 72)
112 – none of aboveIt looks like there were about 7 with more than one country marked. Given our ages, many of these were probably related to service in the Armed Forces in Vietnam.
Marion – maybe you could have Cambodia and Korea added the next time the survey is revised.
Duke
Great responses. That’s what I was looking for, possible triggers.
You’re right, we may never know all the answers, but we have to ask as many questions as possible.
Duke
Port will be installed Thursday, first treatment next Tuesday.
Aimee was amazed when I told told the surgeon I expected him to install the port properly rather than the ways some of you have had the misfortune to experience. I didn’t tell him how to do it, just what I expected. And as long as he did it right I would be satisfied. Doesn’t seem unreasonable to me. Took chest x-rays to get an “as-found” condition of my lungs and other parts. When I told him my platelets ran on the low side, he then ordered a blood sample.
Insurance rejected Nexavar but that was no surprise. Now have to get onc to appeal. Do any of you have suggestions on how she should prepare her appeal? Names of oncs who were successful would be a big help. Thanks.
What a tangle there is with hospital systems. I’ve been in the Lake Hospital system, the University Hospital system, and the cancer center is in the combined Lake Hospital/University Hospitals system. They are separate and unique and have their own databases, billings, and everything. Even the combined system has nothing in common with the two “parent” systems except that doctors may be in two of the three systems.
Duke
I started with cis/gem but went almost immediately to carboplatin/gem when I developed increased ringing in my ears.
It’s good that you have the genome testing done right away. Saves delays later.
Don’t hesitate to ask your oncologist any questions. Some take it better than others. Find out what his/her experience is with CCA. You want the most knowledgeable team you can get. It’s your life; demand the best.
Do you have intrahepatic, Klatskin’s tumors, or distal cholangiocarcinoma?
Duke
Vera, Lainy – Thank You seems so inadequate, but know that it comes with all the love I have.
Laurie – Their posts are just as much for you as for me. And for everyone, patients, caregivers. Remember, love multiplies, it does not divide.
Duke
Laurie –
As a patient, I see this from the other perspective. I know that there will be a first Christmas, first birthday, first anniversary, first Thanksgiving. And a second. … That tears me up. I will want my family to go on. It’s going to be terribly painful for them, but it’s a fact that has to be dealt with. You’re never going to forget, but remember the good times and the fun too. Reach inside and look outside for the strength you need. It’s there if you look for it.
Peace
Duke
I was told by a good friend that this may not be at all about me, but something I would do or someone I would touch.
Aimee too had a tumor, but it was only the size of a softball that she had removed when she was about three months pregnant. The doctor had “one of those talks’ with me over the phone before the emergency surgery (she was already in the hospital for observation). Talk about a wake up call on Easter Sunday. Everything worked out fine.
So, no road map and no yellow stickies with instructions. Play the cards you’re dealt as best you can.
Duke
From our ICPR Database (rough approximations)
Symptoms prior to diagnosis:
Abdominal pain: 47%
Jaundice: 39%
Gastrointestinal problems (i.e., stomatitis, acid reflux, bloating): 32%
Itchiness (pruritus): 28%
Dark urine: 28%
Malaise (general feeling of discomfort): 24%
Weight loss: 22%
Back pain: 19%
Pale, yellow, floating, and/or greasy stool: 18%
Loss of appetite: 18%
Constipation: 10%
None: 5%No surprises in the above cited reports.
Duke
