Re: Haven't been here in a while . . . . Update on me.

Please, continue to blow them away with your knowledge, dear Renee.  BTW, I have given up on the accent.  Please forgive me – but I have to stick to the most rudimental of application - it is over my head.   

In re: to physicians visiting our website - many do so.  I also know of  numerous doctors referring their patients to this site. 

I strongly believe that "more is better” not necessarily for treatment, but definitely for a second, professional opinion hopefully concurring with the recommended approach.  An oncologist treating hundreds of patients or  a surgeon performing hundreds of biliary surgeries is bound to have a well rounded perspective on this disease.   And, these physicians generally are affiliated with the major cancer centers.   Therefore, I firmly believe in asking the pertinent question as to how many patients have been treated in the respective practice or medical institution.

I don’t mean to imply for patients to not place trust in your doctor; they are the experts however, patients need to take an active role in their care and become highly educated about a disease little understood and lacking the necessary funding for accelerated research.  Ultimately it is your disease, your response to treatment, and your trust in the physician in charge of your care that will lead to the best possible outcome with this cancer.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Haven't been here in a while . . . . Update on me.

Hi Shari,
I am sorry you have been thrown another obstacle. I agree with what others have said about the cold sensation and and neuropathy, but it does get better!
This is the best place to let it out because we truly understand so shout it out! And if you want to talk to some one on the phone please call me at 330-903-6868.
Hugs
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Haven't been here in a while . . . . Update on me.

Hi all,

Thanks for all the suggestions. I have had some of the cold sensitivity, but its not to bad. The worst has been the shits, literally, and the nausea. I have the worst cramps and just feel drained. With my last chemos I could at least work, this time I am so tired all I want to do is sleep. I have been taking my zofran and trying to stay hydrated. I hope by next week I will have some spunk back. Laying around isn't my strong suit.

Shari

Re: Haven't been here in a while . . . . Update on me.

Dear Shari, if you don't feel better next week I would inform the ONC. Perhaps there are some other things he can give you. Did you take off work? Sure hope you start feeling better!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Haven't been here in a while . . . . Update on me.

I'm taking it as a day by day thing with work. They are really understanding. I want to do anything to put cancer behind me, but I want to function too. My plan is to talk to my onc before my next round. Thanks Lainy.

Re: Haven't been here in a while . . . . Update on me.

Hi Shari:

We all need a pity party once in a while. Dare I say it? We deserve it. The key is to remember that parties are temporary and no matter how good they feel, they eventually become tiresome and we have to - want to - go back to work after a bit. So have your party! Put on your ugly robe, let your mascara run down your face, don't comb your hair, and feel good and sorry for yourself! Then go look in the mirror, remind yourself that no one should run around with a lampshade on their head all the time, and get back to work!

You can do it! We can help!

Gigi

Re: Haven't been here in a while . . . . Update on me.

This week I was able to do round 2 of my treatment. Monday was gemzar and erbitux. Tuesday was oxaliplatin. My onc decreased my doses by 20% and changed my erbitux from every two weeks to weekly to decrease the dose. He was a little baffled that I got such bad diarrhea from the chemo, but we all react differently. He was also a little mad at me that I didn't call him before I ended up in the ER needing fluids. I'm hoping that I can prevent getting so sick this round since now I know how it affects me. I got the lovely "acne-like" rash from the erbitux. I think other people have probably gotten it worse, but at 32 it was the worst breakout I have EVER had. I was blessed with a nice, freckley complextion. I also used Nerium on my face and I think that it really helped keep the rash at bay. The nurses said that the rash gets better. No major hair loss yet, maybe a little thinning. I finally sent my hair I cut off before I started chemo into Pantene beautiful lengths. 9 1/2 inches! I figured if my hair was going to thin I didn't want to wash long strands down the drain. Making the most out of a crappy situation. Hopefully it helps someone who has to lose all their hair. This post is a little rambly, I thank the dexamethasone for that.

All in all doing better and hoping for a good end to my week.

Shari

Re: Haven't been here in a while . . . . Update on me.

Hi Shari, I so hope this round goes much better. I too am hoping you have a good week and a great weekend! Thanks for giving us the update. I kinda like that your ONC got upset that you didn't call him, shows he cares. Keep up the good work and if anyone asks about the acne just tell them you are really 14....

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Haven't been here in a while . . . . Update on me.

My rash has gotten much better. It's starting to dry out and I don't have any new white heads. I am thankful I found an awesome face product to help my skin heal quickly. Keeping my fingers crossed!

Re: Haven't been here in a while . . . . Update on me.

Sharimay....the roller coaster ride - up you go.  Enjoy your weekend.
Tons of hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Haven't been here in a while . . . . Update on me.

Hi Shari, I'm sorry you are going through this crap.  I have asked myself why this can't happen like to murderers or child molesters instead of good people.  But you just go with a pity party we all deserve one every now and then.  Then get back in the fight.  Thanks for sharing, it helps me know I'm not just being a baby when I have a breakdown and that it happens to others too.  Your go girl and keep on keepin' on!  I saw a shirt at Mayo the other day worn by a fellow cancer patient.  It said "Suck it Cancer"  I thought I wold fall out laughing.  I feel like saying that every day.  You can too!!

Re: Haven't been here in a while . . . . Update on me.

Hi all.

I have started round 3 of gemzar, oxaliplatin, and erbitux. The decrease in dosage from round 1 proved to be the trick. Just tired, no bad diarrhea. The erbitux rash is the craziest thing ever. I think I finally found the right combo of topical cream and I started doxycycline today. The itching is under control. Labs are looking good. One more round then a PET to see response. Keep fingers crossed!

Shari

Re: Haven't been here in a while . . . . Update on me.

Shari all is sounding good, you are on an upward swing! I have everything crossed for you including my eyes! Good work, girl!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Haven't been here in a while . . . . Update on me.

This is good news Shari! Let's hope that the labs continue to be good and that the PET comes in good as well. And of course, I will be keeping everything crossed for you too!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Haven't been here in a while . . . . Update on me.

Praying for you Shari.  We are all pulling for ya.  Stay positive. Stay strong.

United in prayers and hope,

Elsy

In loving memory of my beloved and cherished grandmother who fought until the very end. Loving you forever abuelita...

Re: Haven't been here in a while . . . . Update on me.

Hello all,

It's my off week from chemo, but got my erbitux today along with my premeds. So I'm back to the steroid rush and not sleeping. At least it's just one day. It gives me time to read up on the boards and give people my two cents. Third round has been the best yet. Not bad on side effects, just wicked tired by Thursday and over the weekend. Looking forward to my off week. Take care and I will check in with round 4.

Shari

Re: Haven't been here in a while . . . . Update on me.

Shari, you go girl! I remember my all nighters from steroids. Yikes. Never watched so many old movies! You are doing so well Shari keep on truckin!
Kick that CC to the curb!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Haven't been here in a while . . . . Update on me.

i am sorry you are having a hard time with this chemo. the oxiliplatin can be rough. my sister had that. it was very strong and she had some side effects but she pushed thru the cycles and it did help her. the side effects went away after her treatments and she has been doing pretty good since she finished. a pity party every now and than is needed. this is a tough battle so its always good to come to this site and get out your frustrations just as long as you remember to always keep fighting.  hang in there and stay strong. i will keep you in my thoughts and prayers.

Re: Haven't been here in a while . . . . Update on me.

I promise didn't fall off the map! I have finished 8 cycles of gemzar, oxaliplatin, and erbitux. Other than fatigue things have been tolerable. I had a PET scan and I am continuing to respond to the chemo. Things have been a bit complicated with me coming down with influenza A. So I have taken a couple weeks off of chemo. I am set to start chemo again on Monday. I have 2 months left and am hoping to be done with chemo for a while after that. Wishing all a merry christmas!

Shari

Re: Haven't been here in a while . . . . Update on me.

Dear Shari, OMGOSH it is so good to see your smiling face. Glad to hear you are doing so well except for that crummy flu.  Hope you had a nice Christmas today in spite of it. Teddy's daughter has had it for a month now and she had a flu shot! I am hoping to hear a good report after your scan and I know you will keep us posted. Wishing you a much healthier New Year! Thanks for the update!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Haven't been here in a while . . . . Update on me.

Merry Christmas Shari!  Hope the flu is gone soon and you are able to wrap up your chemo!  Hope you are enjoying the day.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Haven't been here in a while . . . . Update on me.

Merry Christmas, Shari!
Thanks for the update... Glad you're responding well to the chemo! The flu is a draaag! Feel Better!
Willow

Willow