Hi Kathy,

My onco said the blurred vision is from one of the premeds and he didn't want to change it (nor do I, because they seem to work well.) It goes away after 4-5 days. Until then I guess I'll just mooch rides from friends. This time the stinging hands are worse but I can put up with that. And today I'm up and working at my desk (day 4) but I don't know how long that will last. My saintly husband got the wi-fi set up so I can work in bed!

Now I just need to stay awake during an hour-long conference call with my project editors. ("Kristin, what do you think about that? Kristin? Uhhh, Kristin??" zzzzzzzzzzzzzz...)

Hi All,

Treatment #2 was on Thursday-- my blood counts were fine-- and the lunch menu included a pimiento cheese sandwich, a southern specialty that has at least 50000000 calories in it. Perfect for cancer patients, but I'm not sure that's what the cardiac patients should be getting!

This time I'm going to pay more attention to when the side effects (nausea/ fatigue) actually kick in, so that I don't waste more of my week lying around than I have to. I actually noticed that the day after, I felt pretty OK, so I cleaned up the house a little, finished off some work I had on my desk (freelance writing), and caught up on business email.

Today (Sat.) I feel like I've been flattened by a rather large bus. One of those tour buses maybe. Back to bed!

I had an appt. with my onco right before treatment, and he said he thought the tumor that's right under my skin felt a little smaller and softer. WOWWW! After one treatment? Cool!

Best wishes to all,

Kristin

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(19 replies, posted in General Discussion)

Oh sweetie, you are so patient and so BRAVE! I'll be praying for you.

Big hugs,

Kristin

When I go to church or somewhere "nice", I clip mine to the waistband of my skirt or pants with a BIG binder clip (those clips they use for documents in offices.) Holds well but not convenient for ladies going to the bathroom... no problem for men!

Otherwise I have a little totebag that I wear with the strap diagonal across my chest. The bile bag tucks inside and the tube hides behind the bag. Works perfectly and I sometimes forget it's there.

Hope everyone's ideas help!

Kristin

Yes, but they can still jack up your insurance rates 25% every year and patients have no recourse. My husband and I now pay $1600 a month, and our income is down by half from last year, due to my illness and his caregiving.

So don't everybody get too happy.

Kristin

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(9 replies, posted in Introductions!)

Some people on this board have done very, very well with only chemo-- Lisa especially. I believe she has been on chemo for three years now, and is still here with us enjoying life and her two daughters. I hope she'll come along soon and tell you about her experiences.

My very best wishes to you,

Kristin

I have been having a lot of problems with chills, fever, and night sweats, and my oncologist told me yesterday that cc tumors can cause fevers and I shouldn't be too worried about it. He told me to take 500 mg of Naproxen (over the counter) twice a day to control it.

Hope this is useful!

Kristin

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(9 replies, posted in General Discussion)

In 2003 I went to my family doctor for an awful rash on my hands, and mentioned to him I'd had this weird pain in my tummy for three days that went away and never came back. The rest is history...

My  oncologist later concluded that the pain was a coincidence, nothing to do with cc-- something non-serious in my esophagus.

Lainy, that wasn't fast food, that was real food from the hospital cafeteria (which is pretty darn good!) I told you, I'm spoiled in a small town.

Hugs to you and Teddy,

Kristin

Hi all,

Inspired by kathyb's useful posts, I thought I would post about my experiences with this form of chemo, in case it's useful for someone else.

I had my first treatment of gemox 10 days ago (the plan is every 14 days for 3 months, then scans, then continue for 3 more months if it's working-- fingers crossed!) I'm really fortunate to be able to have my chemo at the small-town hospital two blocks from my house, rather than an hour away in "the big city."

The nurse accessed my brand-new port with no pain whatsoever, even though the thing is still bruised a lovely plum-color. The treatment started with 1/2 hour of pre-meds for nausea, then 1/2 hour of gemzar, then almost 3 hours of oxaliplatin (was supposed to be 2 hrs, but someone put too much water in the bag!!)

Whatever the heck was in the premeds made me feel better than I did when I walked in! During the infusion I ate a HUGE lunch, the biggest meal I'd had in months-- a whole fried chicken breast, mashed potatoes, and green beans (hey, this is Kentucky, we don't just do some flimsy little sandwich for lunch!)

When I got up from the chair, though, I already had blurred vision-- looks like when they try to blank something out on a video with flickering squares. It comes and goes but isn't safe for driving. SHOOT. That evening I also started on the cold sensitivity, which lasted 3-4 days.

Day#1 after, I felt pretty OK, though I took Zofran towards evening for nausea. Days #2, 3, 4 I felt like I'd been flattened. Too tired to lift my head up, too tired to read, too tired to think. Nausea meds worked OK. Can't remember what I did-- stared off into space all day? (We don't have a TV.) The next day I was doing better and was able to start working again-- I'm a freelance writer working at home.

I see my dr. on Tuesday, then go for the next treatment on Thurs. I'll have to ask him if there's anything they can do about the blurred vision because that's beyond just a nuisance.

So-- maybe this is more than people want to know, but I hope it's useful to anyone else who's going to do this regimen!

Blessings to everyone,
Kristin

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(24 replies, posted in General Discussion)

Paris! Oh you're sooooooooooooooooo lucky. I lived there from '79-'85 (with occasional spells in the States) and I still think it's the most heartbreakingly beautiful place in the world. In '07 I took my husband there for a week to show him why I chose to live very poor there rather than (say) get a job in economics in the States and he totally agreed.

Walk across the Pont des Arts bridge at night and give Hans a big smooch there. Classic romantic Paris experience!

Kristin

For me, the cold sensitivity went away again about 3 days after my first treatment-- I don't know if it will continue like that, though.

I had a big dish of ice cream the night before!!

Kristin

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(24 replies, posted in General Discussion)

Yayyy Kris! I'm on Gemox too, so we can write and compare weird side effects. Some of them are TRULY bizarre...

I'm so glad they will make it possible for you to eat real food again! You deserve every single pleasure you can get.

Big hugs,

Kristin

Margaret,  I wonder if Tom could have developed some kind of infection? That can sure make you feel really awful, really fast. A bili of 11 sounds very high for someone with a drain. I hope his doc will see him pronto, to figure out what has changed and how to help him. Please keep us posted-- we're all praying for both of you.

Love and hugs,

Kristin

I think an external drain would work practically anywhere, BUT they are a LOT of trouble-- they can get blocked, infected, slip out of place, leak bile all over you clothes, fill up with blood, etc. etc. In four months, I have had every one of those things happen with mine. Having the drain has definitely improved my quality of life, but they can be VERY troublesome. Even the doctor said they're "temperamental." Other people have had much better experiences with theirs, so I hope they will add more information.

Wishing you all the best!

Kristin

Acupuncture can help with a lot of side effects, and it's painless (really!) I definitely think it's worth contacting an acupunturist to discuss this. They are usually very frank about what conditions they can and can't help. I had acupuncture for the side effects of radiation and it was a tremendous help to me.

Wishing you and your mom all the best!

Kristin

I am SO glad you did this and enjoyed yourselves so much! Looking back on moments like these will help both of you get through hard times. You can just close your eyes for a minute and "go there"-- remembering the feeling of your feet in the water, the sound of the waves, the smell of sand, the taste of those awesome Greek pastries... Your body doesn't know the difference between an actual event and the vivid memory of it, so doing that can really make your stress level go down.

Love to both of you,

Kristin

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(3 replies, posted in General Discussion)

Oh crud!!

Let's see... soft food = ice cream, cheesecake, lasagna, fondue, tiramisu....

"My doctor told me to!" Right?

Big hugs,

Kristin

PS If even YOU get worried before visits to the doctor-- that makes me feel like much less of a wimp! smile

Well, it's time... After four years of creative procrastination since my recurrence, I've decided that the cancer is catching up with me and I need to finally do something. I've lost a ton of weight, food mostly tastes awful, I have zero energy, my bile drain is still giving me endless trouble, and now I have a new tumor on my tummy, just under the skin, that I can actually see. YUCK!!

So my wonderful oncologist and I have decided that on Thursday I'll start on Gemox (gemcitabine + oxaliplatin) every 14 days for three months, then do scans to see if it's working. I s'pose I could also poke at the tummy-tumor every so often and see if it's feeling smaller...

Inspired by our wonderful Kris, I have also given my tumors names: the bigger one under my liver is "Doofus," and the smaller one on my tummy is "Pipsqueak." I always have been convinced that I have exceptionally wimpy, unmotivated tumors, so they should just give up and go away when blasted by drugs.

All fingers crossed! This is a really big step for me.


Best wishes to all of you,

Kristin

Good for you, Kris!!!! Yeah!

Next up: our bile-green awareness ribbons, and the annual Cholangiocarcinoma Marathon!

Love,

Kristin

Linda,

That doctor sounds like an insensitive clod!! And you're right, you absolutely need a new one. I had really good luck finding my present oncologist by asking other people in medical fields who they would recommend (including my primary care doc, two nurse friends of mine, etc.)

But I think. there is one little grain of truth to what he said, about waiting until the tumors actually give you problems. I really don't think he meant "come back when you start to die" because there are other milder problems the tumors can cause that give you PLENTY of trouble. This has been my situation. For the last six months, my 2 tumors (just outside my liver) have been wrecking my appetite, making me lose a ton of weight, giving me nausea, and draining all my energy, and I finally decided to start palliative chemo next week. And I'm not nearly, nearly "starting to die"!

So I think that's what he meant by that. Which does NOT excuse his atrocious "bedside manner"!! And he's obviously the wrong doc for you, in terms of philosophy and a zillion other things. I'm SURE that in a metropolitan area as big as Chicago you can find someone who will be perfect for you.

Wishing you all the best!

Kristin

The warmth and mutual support in your relationship are so beautiful, and that spills over into all the comments you make here and all the encouragement you give to all of us. You are a true inspiration to everyone here.

Much love to you both,

Kristin

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(12 replies, posted in General Discussion)

Remember, YOU are the boss-- the oncologists are just here to help you. YOU tell them if you're ready to give up-- and obviously, you're not!

XO,

Kristin

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(6 replies, posted in General Discussion)

I once lost 7 pounds in a day when excess fluid finally passed out of my system. WEIRD!

All fingers crossed that he can get rid of that nasty bag! I've been trying to convince myself that "my bile bag is my friend" but it's not working very well... Oh, to be able to soak in a tub, or jump in a pool!

Wishing you the very very best luck!

Kristin