1

(12 replies, posted in Good News / What's Working)

Hi guys, it's Katie! It's been a really long time, but I think of all of you on the boards often.

Since I last posted, I turned 20! Yay! Haha smile I finally finished my first year of college too! I was also a team captain and committee member of my town's brand new chapter of Relay For Life! I raised almost a thousand dollars by myself and I was even in the newspaper. Check it out!

http://suburban.gmnews.com/news/2010-05 … onger.html

I hope to raise even more this year and be able to donate to the Cholangiocarcinoma foundation. Best of all, as of two weeks ago, I've been in remission for a year! I'm doing my best to educate everyone I can about the existence of this disease. I'm confident though that we'll be able to find a cure, for this and all cancers, soon.

You're all in my prayers. Please take care and be well!

2

(12 replies, posted in Good News / What's Working)

Thank you so much everyone! It's great to hear from all of you. I hope you'll all get good news and keep getting it too. smile

3

(12 replies, posted in Good News / What's Working)

Hi guys! Sorry I haven't posted in a while. I feel like I say that a lot, sorry again. x: I just thought I would update everyone since I didn't fall off the face of the Earth! smile

My last two CT scans have been clean since I finished chemo in August! So I'm pretty happy so far. Next month with be a year since I had surgery to have my tumor and liver removed. It's all very surreal now. For the most part I've just been trying to get back to normal. My hair has been growing back in and my nutritionist has put me on a diet to lose the weight I gained while I was on chemo and to manage my (apparently?) diabetes. It's really hard but I'll do it!

Though bad news wise, I just found out I had two herniated discs and a disc bulge in my lower spine. sad My father's doctor actually let us know that chemotherapy weakens the bones so I can see why that happened now. I'm out of work because of that but I haven't stopped yet! I've decided to go into counseling psychology so I can work with cancer patients to cope with their sickness and treatment so I'm working harder than ever.

Reading lots of articles on cholangiocarcinoma, I just don't know what to expect or to look out for in the coming years. They caught my tumor in stage two so it's not the usual case. I know to be positive and all that but I want to make sure if anything comes back I can catch it early again!

I hope everyone is doing well as my thoughts and prayers have been with all of you as they always have been. <3

randigb wrote:

You guys are awesome.  Wish I lived closer to the Mayo (ok, not really in the wintertime tho).

I spoke with my internist today and she also suggested Sloan Kettering.  So that is definitely on my short list.

Thank you...y'all are a lifeline.
-Randi-

Oh, I'm glad you picked MSKCC! big_smile Dr. Abou-Alfa sees most of the CC patients I think, he's my doctor too. They're great there, I think you'll be very happy with the treatment!

5

(31 replies, posted in Chemotherapy)

Thank you so much everyone! I haven't got any new news besides it's been difficult to readjust to life as usual. I think it's too much too soon.. Hopefully I can get used to it or make some adjustments.

I think I have another CT scan soon, so hopefully that will bring good news then too. No news is good news of course!

Best of luck to everyone, my family will be praying for you all!

6

(31 replies, posted in Chemotherapy)

I've been so busy with school and work I haven't been able to update. I'm so sorry everyone. I'm here to bare the good news though: As of a few weeks ago, I'm in remission!! Yayyyy! big_smile

I still have my port in and I get that flushed every six weeks, and a CT scan every 3 months, but the chemo seems to have worked! I'm so happy! I've been trying to reach out to people I know with family or friends with cancer to try talking to them and make them feel better. I'm dropping my education major and I'm going to try to go to nursing school to be a chemotherapy infusion nurse!

Now that I'm starting to get back to normal, I'm looking at ways to try raising awareness at my college, even if I'm by myself. The other day I was thinking how mad it made me breast cancer got so much attention, but it only does because people went out there and did something. Now I know what I have to do!

I hope everyone has been well and is enjoying the new blessing of cool Autumn weather. You're in my prayers every week at mass! <3 <3

7

(2 replies, posted in Nutrition)

Hiya Karen!

Recently I've been trying to get my family to do something similar with me, but it's really hard if you decide to just drop the things you're used to eating all together. I would start by maybe incorporating some of the new recipes in with the old for a few weeks and gradually cut out things you shouldn't have, or replace them with a healthier alternative. I'm definitely a meat and potatoes kind of girl too, so slow changes, I find, are what work best. Since I started eating a bit better, I have more energy and I find the chemo brain effects me a little less then when I was eating all the crap food. I also try to take like a One-A-Day vitamin every day too, those help. big_smile

Really I commend you and your husband for committing to something like this willingly! It's like pulling teeth over here, lol. Good luck to you both!

If anyone was in need of any information about Sloan Kettering, I would be more then happy to provide!

I currently see Dr. Abou Alfa too, he's dealt with a lot of patients with cholangiocarcinoma. Such a funny guy and everyone in his office is so helpful. smile

9

(15 replies, posted in Pain Management)

Oh dear, this thread hasn't been posted in for a while, but this is driving me nutso!

My port always gets pains in it, even when it's not accessed. But then I'm not sure if it's the actual port because it's like.. right above where it is. I assume this isn't supposed to be normal. When I took my bandages off from yesterday's treatment today, it was all.. yellow instead of the usual blood it's supposed to be.

When it was accessed yesterday it hurt so so bad too! The nurses wanted to do a chest x-ray but it stopped hurting after about 20 minutes (figures, the Gem only takes 30!). I have been told mine is at a weird angle too, maybe that's it? Anyone have any ideas? sad

Holy cannoli, really? After my treatments last week I broke out all over my body, the stupid things hurt all over. I have to try this! Thank you so much!!

11

(10 replies, posted in Introductions!)

Hiya Elicia! smile It's nice to meet you!

You're right, this place is a wealth of information with lots of helpful people in it. You get to feel right at home really quick!

It was super nice of the chemical company to donate your mother's chemo, that's great! If you can, see if the hospital she goes to can get you a case manager. I'm not sure if it works the same way without insurance though so that tip might be useless, but definitely use the hospital as a resource. They're there to help you!

Good luck to you all and please keep us posted! You'll be in my prayers. <3

Hiya Mark! smile Welcome!

It's nice to meet you though not so nice given the circumstances.. but don't worry, everybody here is really nice and helpful whenever you need advice or an ear! Don't lose hope, you'll get through this mess an even stronger person then before.

For chemo, I have to take a bus an hour away, and my mother comes with me. I would try to have someone go with you or see if there's a bus you can take at least so you don't have to do the driving. Doing things can be especially hard with chemo and you never know what days will be good and bad. Louise had a bunch of great ideas though! This is a trying time for you and you deserve the best care you can get.

Keep us posted, good luck and stay safe! I'll be thinking of you. smile

I hope you're enjoying Heaven, Jeff.. give our regards to the big guy! We miss you. sad <3 I'm glad he can be at peace now at least. My condolences to his family and friends.

14

(2 replies, posted in Thought for the Day)

A friend sent me this site today. It has a bunch of inspiring stories on it that really do give you hope that there is good in this world! It really made me feel good to read some of these today and some even made me cry because of how nice they were. Maybe they can help you too!

http://www.givesmehope.com/

15

(31 replies, posted in Chemotherapy)

Hey guys!! I'm sorry it's been such a super long time since I posted, but I've been trying to keep busy with working, doing the camp counselor thing at summer camp, crafts and stuff.. I'm happy to report chemo is almost done! I have three more appointments for gem and then I'm done! I hope. I just have a CT scan after it all to see where I'm at.

I'm so excited! I can't wait for my hair to start growing back. I forgot my hat one morning for camp and my scalp burned so terribly. There's nothing worse then a peeling scalp. Oh, and I even registered for fall classes! I'm so excited about going back to school, I picked some really interesting looking ones and I can't wait to get back to it. Everything is just going back to normal.

My family is going on our family vacation to the shore next week so that'll be fun too. Oh, Disney was super awesome!! It rained at the same time every day but we saw everything and I didn't even sunburn at all! smile

The only problem that I've had I think is consistently low red and white blood cells, they almost couldn't treat yesterday. (My doctor says that .. something has to be at 1.5 to do it, and I was at 1.4) Is there anything I can do.. or eat to get them back up? I'm not terribly worried about it, but I guess eating right and taking a multivitamin doesn't cut it these days? lol And like. Pain in the port, even when it isn't accessed. Apparently mine is at a funky angle and I even got the numbing cream but it still makes me cry (like a wimp! aaah I hate it lol).

I hope everyone is doing well, I've been thinking about you a lot! People have asked me about my bracelet a few times so they have been helping with awareness. You're all in my prayers! <333

16

(31 replies, posted in Chemotherapy)

Thanks so much John! It sounds like my symptoms are just like yours actually, so I don't feel as bad about them. I usually get really ill during the week in the middle though. Except I'm only on the gemcitabine.

I actually have gotten my hair cut on three occasions now, and it's at the shortest it's ever been I think. It's still falling out a lot, but I'm half way done with chemo now so I just hope my hair holds out long enough. Just have to make it to September!

I finally got my port put in on Friday guys! I think I freaked my nurses out though 'cause talked through the whole surgeryy! About cereal mostly, 'cause I really wanted Cocoa Puffs and I couldn't eat. sad I had chemo a few hours later after I slept for like ever (and slept through my appointment with the doctor, lol whoops.. I was in the room though, my mom talked to him) and it was soo much easier with the port. I just wish they came in pink!

The incision still sorta hurts though. I threw up everything in my stomach when I got home. I guess I shouldn't have eaten, huh. I have a CT scan this Friday, so I hope everything looks good.

I just wanted to check in. I hope everyone is doing well!

17

(31 replies, posted in Chemotherapy)

Hey guys! Sorry I fell off the face of the Earth for a while there, it's been ridiculous around here.

Chemo's been... okay I suppose. It's really hard for the nurses to get a vein on me so I'm still working the port issue but I'm afraid I'll be done by the time my doctor is arsed to talk to me about it! My mother harassed him via inter office notes last Friday so hopefully he gets the hint that hey, I need a port. I've been asking for an appointment for weeks! But he finally gave the okay last week so I'll just have to call my nurse or something. It burns so bad almost every time too, it's awful. I feel like an idiot every week because I always end up crying.

Among other side effects, I was itchy for a while but that symptom seems to have gone away for the time being. I got some rashes all over my face and neck two weeks ago and I'm super tired of course. I went back to work though so I need to get over that, lol. Only two days a week for a few hours so I'm not working myself to death. I've also really had a sweet tooth which I found strange. I'm more of a savory person myself so. I dunno if that counts as a side effect, lol.

Along with the chemo I had to get these shots to make blood grow and that burned real bad too. sad They found I have a blood disease, thalassemia it's called, and that's why after surgery my blood count was low. Just one thing after another, right?

And my hair's really starting to thin out bad. Am I going to lose all of my hair? I know everybody reacts differently but it's starting to look that way.. clumps and clumps every day, my car is covered in hair. Icky icky.

I hope everyone has been doing well!! You've been in my thoughts a lot lately. big_smile

18

(22 replies, posted in Introductions!)

Thank you so much everyone! You're all such nice people big_smile <3

PCOS (polycystic ovarian syndrome) is an endocrine disorder that like, 10% of all women have. It's a leading cause of infertility and it effects hormones in the body, so people who have it produce more testosterone than estrogen and it makes a whole mess of problems. sad

19

(31 replies, posted in Chemotherapy)

Thanks so much everybody!! Today went well, they said my tumor marker went from 6000 to 300, so that's good right? I really don't know what that means but my mom said she was happy about it. But my blood levels were low so I had to get this shot to make bone marrow make more red blood cells. It really burned when it went it so that stunk. sad They told me to go on a diet high in iron so I'll have to give my mommy a shopping list, haha.

The Gemzar went over well so far, it didn't hurt going in or anything. I guess we'll have to wait until the next couple visits to see if I have any reactions to it. Though while I was having it, I think I *imagined* a metallic-y taste in my mouth. I'm not sure, how weird of me. I also asked the nurses about ports and they gave me a packet about it, I thought it would be good to ask just in case. big_smile They said only if my veins harden so I hope that doesn't happen. They showed me how it gets put in and I'm just not keen on getting sliced up again just yet, y'know? lol.

Thanks so much again everyone, you're all in mine and my family's prayers. <3

20

(31 replies, posted in Chemotherapy)

Thanks for all the help Pam and Marion! A port is okay to have for CAT scans and stuff right? I always forget they ask that question on the survey thinger they give you. I'll ask my mommy about it, definitely. And yay, Disney! I'm so happy now, lol.

You'll all be in my prayers. <3

21

(31 replies, posted in Chemotherapy)

So as you guys know, I'm supposed to start chemo tomorrow (Gemzar, 3 weeks on, 1 week off for 6 months) and I'm just.. flipping out a little bit. Okay, a lot. It's through an IV, so will it burn or anything? Is it supposed to? Will my hair fall out? They said it might "thin" but what does that even mean? Do you think I should cut my hair anyway? Am I allowed to go out in the sun and stuff? My friends started planning a trip to Disney like a year ago so it would stink if I couldn't go.. Do you really bruise easily? I'm a klutz by trade, I just walked into a door frame before. Will the effects just be after the 24 hours after you get it or all week? Do you just feel normal on off weeks? Even if I do the chemo, will it come back anyway...?

If anyone can answer anything, that would be so amazing.. My doctors had a million things to say and I was too stunned to really think of asking any questions. You guys are in the know though! big_smile

22

(11 replies, posted in Thought for the Day)

Aww gee Patty, you think so? Thank you! =] I hope I can bring more positive energy in the future too, Tess. Everybody can use a pick-me-up sometimes! Even though I have no e-chocolate. And Barbara, I like to think part of the early detection was me whining to my mother double time, lol. I just hope that my case can shed some light on this stupid thing and it can help people in the future. No one should have to deal with all of this.

Angel food cake! That's so cute, haha, thank you! I should make some of that.

My mom always tells me attitude is everything too (even though she's the one down in the dumps more). And my grandma always tells me that God never gives us more than we can handle, so I like to think that's true too.

23

(11 replies, posted in Thought for the Day)

Today while I was in the waiting room to have a CAT scan done, this man came in with his wife and sat behind my mother and I. The hospital has big windows that I always appreciated, the area it's in is picturesque and even moreso since it had just snowed. Everyone was looking out those windows, sipping awful raspberry flavored contrast. Blech.

It was quiet for a while until the man spoke up and said, "Look at all those trees, they're straight because they reach up for the sun." And then he chuckled. "What a funny thing to say," I thought, until I had a closer look at the trees. All of them were indeed straight up, and had their branches growing towards the sky too, almost like hands reaching for the heavens.

It seems sort of silly to say, but I think we should all be like those trees and always reach straight up for the sky, for the sun, for the hope that's surely up there! Keep your chin up, everybody! smile

24

(5 replies, posted in Members' Cafe)

I just joined and invited the daily limit of 60 people, which is stinky. Stupid limits, haha. I'll be sure to invite as many people as possible too! big_smile Yay for getting the word out.

Oh man, Dr. J did my surgery too. I thought it was worth noting for anyone else who happened to check this thread, he's the best if you're going to Sloan Kettering! <3 And his nurses were always so helpful when I called the office afterwords freaking out about stuff, lol.