New member, stage IV and holding!
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Hello Cody….I would like to follow Katie, Kristin, Lainy, and Louise in welcoming you. It is wonderful to see you joining this discussion board and I please, don
Hi Louise,
Sorry to hear about your mom.
The therapy I’m on was developed by Eduardo Bruera, chair of palliative care at MD Anderson. It’s for any terminally ill cancer patient who wants to stay active as long as possible.
Here’s the recipe: oxandrolone (I’m taking a “geriatric dose”), Tylenol three times a day, and 1800 mg of fish/flax oil plus 400 mg of vitamin E.
Add an appetite stimulant for people who need one (not yours truly!)
Add exercise.You’ll need to check with your oncologist, since steroids are hard on your liver. But this is a very small dose (2.5 mg twice a day), with very few side effects even at higher levels (which is why women athletes love it–no telltale masculinization).
Amazingly, I felt better the very next day, and had enough energy to go berry picking with our daughter, home on vacation. I’ve been on it for two months now and no longer dread simple things like washing my hair.
If this helps anyone else with the “quality of life” stuff, that’s great.
And Lainy no, while I used to love, love, love, chocolate, that impulse has never come back. But red licorice–now that’s another story!
All the best of luck to you. I’m glad this forum is here. –C.
I’m interested in the return of energy! I’m not crazy about steroids, but vitamins and tylenol I can certainly understand. Steroids affected my blood sugar, so I think I’ll have to ask my doctor about that. My story takes time to tell, dx in May 07, currently in remission, energy seems to fluctuate. Most recent reason is probably related to my Mom’s passing away just over a week ago. Can you tell me how you got started on this regime, and what all you take, how often, etc?
Would appreciate it, THANKS!
Louise
Welcome Cody and what an amazing story from an amazing woman! You are one of those miracles who has shown that no one really ever knows what lies ahead. Loved your gift and it sure gives some food for thought on fighting the fatigue. If you go to our search engine at the top of the page and type in stent you may get some answers on the exchanges. They seem to be a necessary evil. I have one question. Do you still eat chocolate? Just kidding. You are awesome and we are wishing the best for you and please visit us often.
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
Hi Cody,
Welcome to the board from someone who has lurked for a while and joined a month ago….
I am writing as the daughter of my wonderful Dad who sadly passed away 7 weeks after diagnosis of this cruel disease in June this year.
From what I have read and what has been written in reply to my posts everyone on here is so kind, caring and most importantly knowledgeable.
Wishing you strength in your journey and for you to have time to enjoy the renewed energy brought from your new therapy.
Thinking of you,
Katie
Hi there,
My name is Cody. In the medical parlance, I’m a 53 year old female. History: in 2007, after a self-inflicted overdose of chocolates at Halloween, decided I’d had a gallbladder attack. Unfortunately, I was wrong: my internist found a big mass in my liver. The real diagnosis? Cholangiocarcinoma. Surgery in January (and February–50 days in the hospital), clear scan in September. But the February (2009) scan showed the cancer had returned. Alas, metastasized to my liver, lungs, and lymph nodes. So.
Have been periodically checking this board, but just joined for a couple of reasons. First, have a gift to share: there’s a new palliative care therapy developed at MD Anderson (low dose of steroids, vitamins and tylenol). Et voila–energy back! Caveat: the therapy probably won’t extend life. However, as long as it lasts it is wonderful to feel pretty much like a normal person again, without the overwhelming fatigue. Would be happy to post more info if it would be useful / allowed on the message board.
Second, I’d love to hear if anyone has figured out a way to optimize their stent changes. When the cancer came back, I decided no more treatment–been there, done that–not putting my wonderful family through that again. And here I still am, seven months after the six months to live diagnosis! But I kinda cheated: I was willing to leave the stent in, change it as needed, and take antibiotics for the seemingly inevitable fevers.
A bit more detail. I’ve had, let’s see, four stent changes by now, and am getting jaundiced again so probably number five is looming. One of these days it won’t work, I expect–it takes me longer to bounce back each time. It’s harder to breathe, so maybe the tumors are bigger and putting pressure on liver and lungs, rather than the stent clogging up (I irrigate it every 4-6 hours).
The interventional radiologist said there’s no way to predict what would happen next because there are so few people out there who have survived this long. But if you or a family member have, you’re probably on this board, so I thought I’d ask about how you sort out the symptoms / decide about the stent changes.
Thanks for reading. Any advice or thoughts appreciated! –Cody
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