kristin
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Wow, you’re amazing! We’re so glad you joined this board and shared your story with us. I’m a patient too but my experience has been different from yours (I’ve never had stents) so I don’t have anything practical to tell you, but I wanted to say I really admire your energy and your spirit.
I’m sure other members will have more useful things to say, but meanwhile, welcome! We’re really happy you found us.
Kristin
If you need to find a good oncologist and live in a small town far from any big cancer centers, I highly recommend asking every doctor and nurse you know (even socially) about who they would want treating them if they got cancer.
I live in a town of 10,000 in central Kentucky, and that’s how I found my wonderful, wonderful oncologist– a nurse I’m friends with told me about him. (The one I had at the University of Kentucky cancer center was a gloomy, pessimistic, unhelpful dork.)
I think there is a LOT that science doesn’t understand about this cancer. Different people have such different experiences with it.
My own case is not usual. I first got sick 6 years ago this month, was diagnosed and had surgery 5 1/2 years ago, had a recurrence and failed surgery 3 years ago. And here I am, still running 18 miles a week and enjoying every day, with the tumors still in me but not growing (no one knows why) and no medical treatment in 3 years.
Statistics only say what happens to most people– they don’t tell you what will happen to ONE person. I had no idea three years ago that my life would ever be this long and beautiful. The main thing is to get as much joy and love into every day as you can (and that goes for “healthy” people too!)
Wishing all the best to you and your sister–
Kristin
External radiation with Xeloda worked very well for me. It REALLY walloped my tumors– 2 1/2 years later, I have had virtually no tumor growth, and have gone about my life with no further treatment needed, though the tumors are still there. For me the side effects were pretty mild– fatigue and heartburn. In my case those were a small price to pay for several years (at least!) of great life. You should definitely consider radiation, in my opinion.
Dear Asif,
When doctors say that your brother will live only 4-6 months, please remember that doctors aren’t God– they don’t KNOW how long we will live, they can only say what usually happens. Doctors once told me I had 6 months to live, but that was three years ago.
Sending all my best wishes to you and your brother!
Kristin
Hi Dianne,
We’re so glad you found us! And I know what you mean about feeling relieved. This site didn’t exist when I was diagnosed six years ago, and it was such a lonely feeling, thinking I was the only person in the world who has ever gone through this. You’ll find all kinds of information and widely different experiences here, and the kindest, most supportive group of people ANYWHERE.
Please tell us a little more about yourself!
Hope you are having a great, relaxing holiday weekend.
Kristin
Dear Asif,
I don’t know any other doctors to recommend, but I just wanted to say that your are a wonderful brother. I send you all my best wishes, and will keep you and your brother in my prayers.
Kristin
Hi Mary,
That’s GREAT that the turmeric has helped you so much! Wow!
Now if only there was even ONE supplement that tasted good…
Kristin
Mary, there’s a lot of research on turmeric lately (good info in the book Anti-Cancer, by Servan-Schreiber.) One point is that for the body to absorb it, it needs to be mixed with black pepper and oil.
I keep a jar of turmeric powder mixed with pepper, and dip up a little bit of the mixture with a soup spoon (like 1/4 tsp. or so) then pour a bit of olive oil on the spoon, pour everything in my mouth, and “mix” it all in there. I finally figured out this method after getting bright yellow turmeric stains all over the counter, the table, various t-shirts, etc. etc…
I agree that grilled food is a really bad idea, but surely a little bit of ice cream now and then has therapeutic properties!!
Kristin
My nutrition nurse recommended I take 20 mg of melatonin (a LOT– the dose for sleep is 3 mg!) every night to fight tumor growth, and I’ve been doing that for 2 1/2 years now. That and my other couple dozen supplements have helped a lot.
But alas, the melatonin doesn’t make me the least bit sleepy… about 10% of people don’t have that reaction.
I’m SOOO glad it’s working for you!
a hug from
the other Kris(tin)
Marcie,
There are good doctors to be found in all kinds of places, and the main thing is to find one whose philosophy matches and supports yours. Mayo has some excellent oncologists but they were not right for me, personally.
After going all the way from Kentucky to Minnesota, I ended up with a doctor a 15 minute walk from my home in a little town in KY! He was recommended to me by an MD friend, and is a former professor at the University of KY Medical School who left because he was fed up with the bureaucracy. I also like him because he’s much older than my previous doc, and has been treating people with cc since the 1980s– long enough to see that there are plenty of patients that don’t follow the “usual” course of the disease.
Keep looking until you find the doctor that is right for you!
Wishing you and your dad all the best–
Kristin
Hi,
I had 33 radiation treatments (with Xeloda at the same time) and I’m totally convinced that’s the reason I’m doing so well 2 1/2 years later. The treatment was for an inoperable recurrence on the IVC (blood vessel) and it blasted the tumors so well they have barely grown since then. So, I’m very glad I did it!
The treatments themselves weren’t too bad at all. After about a week, I started having heartburn, but Mylanta took care of that pretty well. And teh fatigue built up– after about the third week, I really needed 9 hours of sleep every night plus an afternoon nap. But it really only took about 1-2 weeks after treatment ended to start getting my energy back.
Everyone’s experience is different, but that was what it was like for me. Obviously I’m much younger than your dad, but in general, a lot of people find that radiation is quite tolerable.
Hope this helps. My best wishes to you and your dad.
Kristin
Dear Jim,
Welcome! We’re so glad you found us. Please come to us with all your questions, and if you just need to vent.
And, not to contradict Jill, I think it’s important to remember that everyone’s experience is different, and you may find that your healing from surgery goes along a different track. I have a friend who had whipple surgery for a different form of cancer (neuroendocrine tumor of the pancreas) and though she lost a ton of weight, she didn’t suffer from nausea and was able to go back to work part time after a couple months. (I think it helped that she loves her job.)
In the surgery I had, my bile duct, gall bladder, and half my liver was removed. Yeah, I felt like I’d been hit by a truck, but I was up and about after two weeks or so, and working again after a month (I work out of a home office, so that made it much easier.
All I can say is, expect the unexpected! Some things will be easier than people say, and others harder. But we’re all here for you, so please check back often.
With my best wishes,
Kristin
