kristin
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Kris,
You are young and strong and full of life and energy. You will get though this just fine! All your tests are pointing in the right direction. And just think, soon they will have your bad digestion all sorted out and you will feel soooooo much better. What’s the first thing you’re going to eat when they let you have “real food”??
A big hug from
the other Kris(tin)
Hi Jim,
We’re so glad you found us! This site has been a tremendous help to me, and you’ll find the people here are amazingly helpful, caring, and well-informed. You can learn a lot from everyone’s experiences.
One thing you’ll quickly notice is that this type of cancer is SO different in different people, so don’t let anything you read here scare you. It helps if you focus on all the reasons why you should have a GOOD outcome– you’re young, strong, and not feeling sick at all.
And I want to repeat what others have said– get a second and third opinion, and keep looking until you’re sure you have the right oncologist for you.
Wishing you all the best!
Kristin
Your friend might consider University of Wisconsin Hospital in Madison for a second opinion and/ or treatment. They have a very large and well-regarded cancer treatment center. For such a rare and difficult cancer, I don’t think a smaller hospital like Froedtert is necessarily the best place (though so much depends on the individual doctor.)
I grew up in Milwaukee, and worked at UW Hospital in the early 80s, in dietary. Part of my job was delivering snacks to patients on the oncology floors! (which is neither here nor there, just an odd note)
Wishing your friend the very best of luck–
Kristin
Kris, you are one tough cookie if you got through an ERCP with no anesthesia! I would have been running out the door at the first sight of that gizmo getting near me!
This may sound stupid, but have you tried any herbal remedies for digestive problems? I once had food poisoning that sent my entire digestive tract into an uproar for days, and a friend who lived in Egypt told me a remedy that they use there: toast a lot of cumin seeds in a dry frying pan, grind them up, then make a tea of them. It really helped me a lot.
Hope you have a more comfortable weekend, and then GOOD NEWS on Monday.
Sending healing thoughts your way!
The other Kris(tin)
Dear Kris,
I think you made the right decision, and I know you’ll get better care back in Sweden (why deal with the messed-up US health care “system” if you can avoid it!)
Rotten fish?! I though only the Norwegians were crazy enough to eat lutefisk! (I’m an honorary Norwegian… My name is Kristin Johannsen, even though I’m 100% German.)
Please keep us posted. Hundreds of us here are all rooting for you and hoping this is all resolved quickly.
Wishing you happy and peaceful holidays!
Kristin
Dear Kris,
Any sane human being would be worried and scared!! So please don’t be hard on yourself and think you “should” feel different– the way you feel, is the way you feel. You are incredibly BRAVE– brave doesn’t mean not being scared, it means moving ahead anyway!
Where would you be more comfortable and have more people to help you– in Sweden or in NC?
Just remember that all of us, all around the world, are showering you with warmth and prayers.
A hug from
Kristin
As for the CA 19-9, my oncologist says that not all cc tumors produce this chemical. If a tumor does produce it, then it’s a useful way to keep track of what’s going on, but if it doesn’t produce it, then the number doesn’t mean anything. Mine doesn’t produce it so they’ve stopped giving me the test.
Hope this helps.
Hello Vincent,
We are so glad you found us! The members of this board will do everything they can to help and support you– they have been SO wonderful to me!
The best thing to do is just to read through the diffferent sections, especially about experiences and different treatments. You’ll find that though doctors’ predictions are accurate in some cases, many times people live much longer than was predicted. Doctors know a lot of things, but they are not God! They can tell you what USUALLY happens to patients, but they can’t tell you for certain what WILL happen to your mom. I have been living with this cancer for five years now, and I can say that my doctors have been wrong in many things.
The key is to find a doctor with some experience, and one who has a general outlook that is right for you and your mom. I completely agree that you should try to get a second opinion.
The best of luck to you and your family!
Kristin
Wishing you a wonderful Thanksgiving with all your dear ones!
You are an inspiration to us all, and you give me SO much strength and encouragement.
Kristin
“Personally, I know of five people who have passed the 10 year mark.”
Marion, do you mean people who had successful resections, and the cancer never came back? Or do you mean they’ve gotten through ten years with treatment– which would be AMAZING?
Could you give us a few more details? Thanks!
Kristin
Hi Luluu,
I’m so glad my post was hopeful for you! Instead of typing the whole long story, here is my introduction that I wrote when I joined the boards last February:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6393#p6393
One thing you’ll find as you read these boards is that every case is really, really different, in its ups and downs and how fast it progresses. I think I’ve been really lucky, but I’ve also done EVERYTHING I can think of to help myself– healthy mostly-vegetarian diet, exercise six days a week, lots of supplements especially milk thistle and ginseng, acupuncture every week, energy healing every week, daily meditation, and plenty of positive thoughts. It sounds like a lot of work, but it’s all things that make you feel great anyway, even if you don’t have cancer!
And definitely keep looking until you find an oncologist that matches your personal philosophy. It makes all the difference in the world, knowing that you’ve got someone who understands by your side. I wish I had dumped my old one, “Dr. Gloom,” two years ago!
My very best wishes to you and your husband (he’s sooo lucky to have you!)
Kristin
I’m glad you had such positive experiences, but essentially the doctors at Mayo told me there was nothing special they could do for me, and showed me to the door. I am quite pleased with my new local oncologist, as I mentioned above, and I believe my case is somewhat unusual in that I am still feeling quite well 5 years into this and am not currently in need of any treatment. In fact I ran my usual six miles just yesterday.
I’m sure your information will be useful for many people, and I really appreciate your posting it.
Kristin
I’m not a veteran, but I lived in South Korea 1987-90, and in the Persian Gulf 1990-96. I traveled in Vietnam for a total of five weeks, also in Cambodia and Laos, and ate all kinds of strange stuff everywhere. Was diagnosed with CC in Feb. 2004.
In August, when I went to the Mayo Clinic and had an appointment with Dr. Steve Alberts, a world authority on CC, I asked him if my cancer could have been caused by liver flukes. He told me that if a person actually has liver parasites, they will experience all kinds of serious liver symptoms and problems for years before they develop CC– the tumors would not be the first thing that happens.
For what it’s worth…
Kristin
Hi Judy,
It’s great to hear that you’re doing so well! The weirdest thing about this disease is how different it is in different people, so you shouldn’t ever expect things to happen the same way they did to someone else. I am nearing the five year mark now– and it’s been two years since my recurrence, which was also inoperable.
I have my up days and down days too, but I am always amazed at how well I feel, and how new experiences and new parts of my life are constantly opening up to me. Five years ago, I thought I’d hit the end of my road. Two years ago, I felt sure of that (too much listening to doctors!!) At the moment, my tumor has mysteriously stopped growing again (no treatment), and I’m just enjoying every day to the max.
Your trip to Europe sounds fabulous! What is the next thing you’re looking forward to?
Kristin
