kristin
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I had itching that was just diabolical before my resection. One thing that gave me some relief was peppermint essential oil, suggested by a friend who’s an aromatherapist. I got a bottle of hand lotion, poured out about a third of it, and then put in maybe 15-20 drops of peppermint oil and shook it up (enough oil to make a strong minty smell.) It’s cooling on the skin, and seems to “confuse” your nerves so the bile in the blood doesn’t irritate them as much.
Hope this helps!
Kristin
I had absolutely no symptoms, apart from a weird pain that lasted a couple days and went away, which I later found out probably had nothing to do with the cancer. I mentioned it to my family doctor when I had an appointment for a skin rash, and he ordered a slew of tests. They assumed it was my gall bladder, because I’m female and, ummm, middle aged. My blood tests were wildly high, but it took them six months to figure out that what I had was cholangiocarcinoma (Klatskin tumor), and in that time I had no symptoms at all– until I turned yellow and started itching like crazy.
The surgery was no fun, but four and a half years later, I’m still here (despite a recurrence.) I know the kind of shock you must be feeling. It sounds like it would help you if you got another opinion and another point of view. And don’t give in to panic or despair. Your life ahead holds many beautiful days that you can’t even imagine now. I promise!
Wishing you all the best!
Kristin
Dear Lamia,
I have had cholangiocarcinoma for almost five years now, and I can tell you that my loving family and friends have made a HUGE difference to me, and I am convinced that they are a large part of the reason that I’m still here. Your being a part of her life, supporting and encouraging her, is a wonderful help to her. But you shouldn’t feel like you need to take it all on yourself. Let your other family members and her friends help her too, and try to spend as much time with her as you can during semester breaks and other holidays. I’m sure she is concerned about your future too.
These message boards are a wonderful place to get information and support, and I’m so glad you found them.
Wishing peace and blessings to you and your whole family.
Kristin
Hi,
I had surgery for cc in Feb. 2004, then a recurrence in 2006 which was treated with radiation and Xeloda ending in Dec. 2006, which shrunk the tumors but didn’t knock them out. In the 18 months since then, the two small tumors have been stable, with no change and no metastasis– (knock wood! I go for a CAT scan next month.) So it does sometimes happen. As many people on these boards have observed, this disease is SO different in different people.
Wishing you all the good luck in the world!
Kristin
I am a Buddhist and don’t believe in God as such but I do have a deep belief that everything happens for a reason, and that some things are just beyond human understanding. I also belive that our thoughts, meditations, and good wishes do ripple out through the universe to change things. I have friends of many different religions, and it comforts me to know that I am being prayed for by Catholics, Muslims, Mormons, Baptists. For my part, I include these people when I practice metta meditation, wishing that they may all be well and happy and live in peace.
Since I first got sick, almost five years ago, I have spent a lot of time thinking deeply about my spirituality and trying to understand “why” things like cc happen. So it’s not exactly faith, but this disease has definitely made me a more spiritual person.
Kristin
It’s a real shock to be given a diagnosis like this, but try to remember that every case of this disease is really different. There are some people who do very well indeed, and there’s NO reason you shouldn’t be one of them!
Also, people have different experiences after surgery, and of course a lot depends on your age and general health. I had my resection when I was 46 (sounds a lot like what’s planned for you– one lobe of my liver removed along with my gall bladder and various other bits) and I only felt truly awful for about two weeks afterwards, but was able to start working again part-time after four weeks (a desk job) and go on a business trip after six weeks.
I had a recurrence that wasn’t resectable, but nearly five years on, I’m still going strong!
I’d like to recommend a wonderful book to you: There’s No Place Like Hope, A guide to Beating Cancer in Mind-Sized Bites, by Vickie Girard. It’s in very short sections that are inspiring and encouraging and will make you feel like you WILL beat this!
Wishing all the very best for you! Please keep us posted.
Kristin
Hi Joel,
The weird thing about this disease is that every individual case is so different. That said, here are some things that I think have helped me to survive for almost 5 years:
1) I take a LOT of supplements– 18 of them daily (I just counted!) Milk thistle and omega-3s are a good start, but you should also think about ginseng, turmeric, IP-6 and various others. I also drink huge amounts of green tea. The book Beating Cancer With Nutrition by Patrick Quillen has loads of information on supplements.
2) I have acupuncture treatments every week to strengthen my immune system. Are there doctors of traditional Chinese medicine in Brunei?
3) I exercise as much as I possibly can. After surgery, that meant just walking to the end of my porch and back, but I think anything that strengthens the body is important.
4) Meditation, prayer, or whatever fifts into your system of beliefs
5) Avoid gloomy people!!
In your other post, you said your mother won’t eat. Is there even one food that still appeals to her? If so, she should just eat as much as she can of that even if it’s something odd (there were days when I ate nothing but canned beans!)
If not, one thing that I could always eat even when I felt just awful was smoothie drinks made of yogurt, fruit, wheat germ, and a scoop of whey protein powder. (I don’t know if you can get Ensure or Carnation drinks in Brunei, and anyway I think a real smoothie is more appetizing than whatever chemicals they put in those commercial drinks. Besides I’m sure you must have wonderful local fruit there!)
The best of luck to you and your mother!
Kristin
Hi Deb,
I was diagnosed at 46 with a Klatskin tumor and had surgery, but no chemo/radiation after. Then clear sailing for 2 yrs 8 mos, until I had a recurrence, which was treated with radiation and xeloda. That shrank the tumors, and they have been sitting there doing NOTHING for a year and a half since then.
I agree with everyone else who says that this disease is really unpredictable, and every case is unique. I feel absolutely great– no one would ever believe I am “sick”– though this could change any time. I think what helps is to do anything YOU can do to make yourself stronger. For me, exercise, acupuncture, and meditation– but that’s different for everyone. I accept that I’m probably not going to live to a ripe old age, but I’m sure going to enjoy the heck out of every day that I do get!
Take care!
Kristin
I am SO happy for you both! Always remember that every case is unique and different, and that some people do very well for a very long time– there’s no reason why John shouldn’t be one of them!
The best of luck to you!
Kristin
And it does me good, too, to hear that other people also are having experiences with CC that don’t fit the “normal” scenario, whatever that might be. My oncologist, who is not very easy to talk to, said last time that it would be interesting to look at the DNA in my tumors and see if there’s something different about it. I said I’d be happy to give a sample if it might help other patients but then he didn’t seem to want to talk about it.
And Jeff, just reading about your experiences is SO encouraging to me– that you’ve just kept right on going! My goal is to stick around as long as you have, and by then they’ll find a cure!
The best of luck to all of you!
It’s really strange how differently this disease progresses in different people. I had a recurrence 32 months after my first surgery, just when everyone thought I was “out of the woods.” The tumors weren’t resectable the second time, so I had radiation, which shrank them, and they have been stable for 14 months now. My oncologist says he’s “never” seen CC act this way. Well, obviously if DOES happen.
The best of luck to you!
I had this treatment too (7 weeks of radiation and Xeloda) after my recurrence because the tumors were not resectable. My only side effects were pretty mild (extreme fatigue and constant heartburn) and it really zapped the tumors. They shrank though they didn’t disappear, and 14 months later they still haven’t grown any. So it worked well for me.
I took Xeloda for seven weeks with no side effects at all. I don’t think people normally lose hair with Xeloda– I certainly didn’t.
The best of luck to you!
I am so, so, so happy for you! Isn’t it a wonderful feeling?
My last scan was last week, and it found the tumors were still stable/ unchanged (they have been for 14 months) and I said to my hisband on the way home from the hospital, I feel like my whole body is made out of clear blue sky right now. And I don’t have to go back for 4 months.
I know EXACTLY what you mean– basking in life! Please go and enjoy every minute of every day!
Kristin
