Topic: New member introduction

I have been reading this forum for awhile and thought I would introduce myself.  Prior to being diagnosed with cc, I already have a disease called gardner's syndrome, a form of FAP.  As a result I had part of my colon removed in the 70's and the rest of my colon removed in the 80's.  in the 90's I had polyps removed from my duodenum.  After 10 years of endoscopies and ct scans, I had my gall bladder removed for a large mass in 2005. In 2008, after getting three opinions I had the Whipple procedure performed due to large areas of high grade dysplasia in my duodenum.  Due to complications I spent 100 days in the hospital over a six month period. I am still on pain medications starting with the Whipple.  In 2010 I had seven rounds of chemo to shrink a Desmoid tumor in my abdomen enough to surgically remove it.  Because I have ct scans done every six months the tumor in my duct and liver was found in December, 2012. After 3 biopsies came up negative, I had half of my liver removed February 1.  Their was no lymph node involvement and margins were good.  I did have some problems with abscesses and went home with a drain and IV antibiotics.  Thankfully that is done now.  I do have several areas of high grade dysplasia in my remaining liver.  I start chemo later this week, genzar and cisplatin, two weeks on and one week off for twelve weeks followed by 6 weeks of radiation along with oral 5-fu.  I hope to get into a clinical study in buffalo my after that but that is in the preliminary planning stages and I don't know much about it. I have been encouraged somewhat by reading other people's stories here and thank those responsible for this forum.

Re: New member introduction

Dear Stan, welcome to our remarkable family but sorry you had to join us. Wow! You have really experienced it all and are truly a new Super Hero. We are so glad you found us. Good luck on your GEM/CIS it is  one of the more popular chemo cocktails. May I ask where you are being treated? Please keep us posted on your progress, you have come to the best place to be.

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: New member introduction

I am being treated home in Grand Rapids, Michigan.  I am blessed to be married to a doctor which has its perks. Working with my oncologist as well as my surgeon she was able to expedite second opinions from mayo, Henry ford in Detroit and university of Michigan where my Whipple was performed.

4 (edited by clarem Tue, 02 Apr 2013 10:48:51)

Re: New member introduction

Hi Stan and welcome to the forum.  I fairly new here too and yes the support and encouragement is phenomenal.

Clare

In the stars now . . . .

Re: New member introduction

AH HA, Stan, so it really is not what you know but who you know!  Again, good luck with the Chemo and on getting in to a trial later.

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: New member introduction

Hi Stan,

Welcome to the site. Sorry that you've had to find us all here and I'm sorry to read what you're going through, you sure have been through so much haven't you. Glad that you have joined in with us here though as you are in the right place for support and help.

Thanks as well for sharing everything with us all and I hope that your chemo goes well for you. There are a ton of posts on the site from members about the Gem/Cis combo and the search function at the top of the page will throw them up if you want to read them. Good luck as well with getting onto the trial and if you don't mind, please could you let us know more about it if you get onto it as I'm sure that that will be of use to others.

Hope that you will keep coming back here Stan and keep us updated on how everything goes for you. And please know as well that we are all here for you.

My best wishes to you,

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: New member introduction

My wife will be gathering info on the clinical study and whether I'm accepted as a candidate for it or not I will gladly share the info on the study on the board.

Re: New member introduction

You have certainly been thru the wringer and back.  You have to be a very strong individual.  Keep fighting and win some battles.

Gregg

Re: New member introduction

My primary care physician's nurse refers to me as "timex" cause I take a licking and keep on ticking.  Actually, I have been blessed with great support from my family, friends and church.  No one gets through a major illness without a great support system and I know I am blessed to have so many people praying for me.

Re: New member introduction

Stan..... Thanks for joining in; now you have another devoted group by your site.  Glad that you have found us - we are in this together.
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: New member introduction

My first round of chemo didnt go so well.  Went into the hospital with 103 fever.  Found out I was big time neutropenic, had a small abscess near the liver and my kidney function was getting worst daily.  Consequently I am still in the hospital.  I had a drain put in to drain the abscess and they found the appropriate antibiotic.  I am no longer neutropenic and my kidney function is too the point that we will try chemo again tomorrow while keeping me in the hospital for an extra day or so.  They are replacing cisplatin with carboplatin.  Hopefully, I can get back on schedule.

Re: New member introduction

Hi, Stan, I am so very sorry to hear about your latest escapade and truly hope you get to feeling much better and much good luck on the new Chemo. You certainly are the Timex and a good thing you are. Wishing you the best tomorrow, please let us know how you do.

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: New member introduction

Stan....sorry to hear of the latest.   Unfortunately cancer treatments have a way of throwing curve balls at many.   Cisplatin is tough on the kidneys, Carboplatin is easier to tolerate, and abscesses are not uncommon either.  Sorry for having to spend another day in the hospital (for good reasons.)   Good luck tomorrow and please stay in touch.
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: New member introduction

Hi Stan,

Sorry to hear that all didn't go as planned today, grrrrr to that. Hope that the docs got to the bottom of everything and that chemo is a go for you tomorrow. My fingers are crossed for you and please let us know how you get on.

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.