1 (edited by Lisa Fri, 26 Sep 2008 15:00:59)

Topic: Roll call - patients and caregivers

For the sake of our new members, and for further reference, I thought it would be nice and handy to have a roll call on the board.  You can state your name and if you are a patient, when you were diagnosed (if you want to).  Or you can say if you are a caregiver, and your loved one's name.

I'll start.

I'm Lisa, I'm 45, and live in Washington state.
I was diagnosed in August 2007.
I had 6 weeks of radiation in October 2007.
My current chemo is Gemzar and Xeloda. 

I'm fighting this disease so that I can spend as long as possible with my three children and my parents.

God bless you all.

Re: Roll call - patients and caregivers

Hi,

I'm Darla from Wisconsin.

Caregiver to my husband Jim for 7 short weeks before
he passed away 9-2-08 at the age of 62.

His journey with CC was short. I console myself with the fact that he is now at peace & is no longer suffering.

The help & support of the great people here are helping me to cope.

I have learned a lot in these few short weeks & hopefully can bring knowledge & support to others that come here looking for guidence.

God Bless All Of Us

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Roll call - patients and caregivers

I'm Carol from North Carolina

Caregiver to my husband Charlie, age 53.
Mom to Sarah, age 20 and Ben, age 17.
Married 26 years.
Charlie was diagnosed 5/07.
Underwent 14 weeks of Gemzar last summer.
Chemoembolization 9/07.
Liver resection 11/07-over half the liver removed.
Radiation and Xeloda Jan.-Feb. 08.
Radio frequency ablation April 08.
Oxaliplatin and Xeloda chemo just finished series of 6.
CT scan in Oct. and try to figure out what's next.

Everyone's amazing on here.  Keep fighting!

4 (edited by tiapatty Sat, 27 Sep 2008 22:17:34)

Re: Roll call - patients and caregivers

Patty from Chicago
 
caregiver to my mother, Pamela
diagnosed in Dec. 2007, we lost her in August 2008 at age 66
liver resection in January 2007
biloma developed shortly after discharge
ended up with a total of 3 external drains
treatments: Xeloda and radiation, also millk thistle and breast milk

I am a reference librarian and am willing to tackle reference questions or hunt down articles, just e-mail me.

Re: Roll call - patients and caregivers

Kris from South Carolina but living in Sweden with my wonderful husband

diagnosed in Dec 2006 in Glasgow, Scotland while attending friends wedding
Had liver resection Jan 2007 in Edinburgh Royal Infirmary (love the doctors there!!!)
I wanted chemo as follow up but was denied (a very sore point of contention)
Nov. 2007 scan identified spot on liver and abnormal lymph node which were determined to be nothing in Feb 2008
MRI, CT or PET scans every 3 or 4 months
I have remained cancerfree so far but I feel like there is an imaginary clock counting down to a reoccurance.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Roll call - patients and caregivers

Sue from Indiana, 50 years old
Happily married to my husband for almost nine years.
And someone who actually loves her job!

-Diagnosed 12/06 after having to leave a cruise ship because I felt so bad.
-Right lobectomy and cholecystectomy 01/07
-No chemo offered. I too wish I had pushed more for at least one course.
-Just recently found I have a "node" in each of my lungs, but have been told to watch for change thru CT scans (very possibly these are from earlier infections). If there is any change, they will biopsy. Trying not to stress over it.
-CT scans and blood work every 6 months now. Am still fighting digestives issues and abdominal pain, but working on both problems.
-Liver remains cancer free per scans.
-Feeling old, but pretty darn good, considering!

Today is a new day. Congratulations, you are already a survivor!

Re: Roll call - patients and caregivers

Kristin from Kentucky, 51 in a couple weeks!

- Something "wrong" in 8/03. Finally diagnosed 1/04, successful resection 2/04. No follow-up treatment offered-- I should have pushed for it!
- Recurrence in 8/06, followed by failed surgery-- the darn thing is stuck on a major blood vessel (IVC).
- Seven weeks of radiation and Xeloda 11-12/06.
- Tumor stable until 7/08, then CAT scan found growth, but a new scan 2 mos. later found it had stopped again. Hooray!
- I take good care of myself with supplements (especially milk thistle and ginseng, but also about 20 others), eat mostly vegetarian, have acupuncture and energy healing every week, and exercise hard (run 18 miles a week, do serious weightlifting.)
- Now have blood work and onco visit every month, scan every 3 months.
- When I fill out one of those questionnaires that asks you to rate your health, I always start to check "excellent," before I remember...

Peace, hope, and healing to all!

Re: Roll call - patients and caregivers

Lainy (68) & Teddy Sardina (76)     Newly Married 14 Years
Sun Lakes (active adult community 20 miles South of Phoenix)
Blended family of 24 kids and grandkids who all think they are blood related!

Teddy:        Diagnosed Bile Duct Cancer August 2005. In bile duct valve.
                  Surgery end of August - Whipple aborted after 4 hours due to
                                                         damaged pancreas from dye.
                   September 16th - Double e-coli infection hospitalized 9 days.   
                   September 25th - Whipple  Surgery cancer removal successful.
                    Nov. 1st - Tiny hole developed at resection went to REHAB for 1
                                     month on nothing but IV. Worked, hole closed.
                    April 2008 - Cancer returned where duodenum used to be.
                    September 5th -  completed 5 weeks of radiation to prepare for
                                      cyberknife to be scheduled after PET Scan Oct. 27th
                    In the meantime cancer has crimped right ureter, using stent and     
                    drainage bag for urine, surgery soon to insert tube and get rid of
                     the tube and bag.

He is my miracle man, my knight in shining armor, who loves everything and everybody!

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: Roll call - patients and caregivers

Hey Kristen...I'll be 51 "in a few weeks"!!!  My birthday is October 11!  I threw myself a big 50th birthday party last year!  Have to use every excuse to have a great time, you know!

Happy "almost" birthday!

Today is a new day. Congratulations, you are already a survivor!

10

Re: Roll call - patients and caregivers

I'm Diane from Whidbey Island, WA

I was privileged and blessed to be the caregiver for my husband, Brad, who passed away August 17, 2008.

J-pouch surgery due to UC in 1982.
PSC dx in 2005
CC dx in 2006, mets involved
radiation and chemo combos for 2 yrs.

Brad never stopped fighting.
You all are always in my prayers.

Re: Roll call - patients and caregivers

I'm Gavin, I'm 36, single and live in Scotland. I'm the carer for my dad Ron, who was diagnosed this summer. He underwent Photo Dynamic Therapy about a month or so ago and could be light sensitive for another month or so. He will be having another CT scan in about 5 weeks to see what the situation is and what the next stage of his treatment may be. The laser treatment went as well as it could have but we have to wait to see what the CT scan shows.

I only joined the site this week and am extremely grateful to the support that has been given to me.

Thanks and best wished to you all.

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: Roll call - patients and caregivers

Hi!  I'm Karen from Shamong, New Jersey.
Caregiver to my husband, best friend & soul mate Robin, age 57.
Mom to Lisa age 29.
Mom-In-Law to Matthew age 29.
Friends for 41 years and married 36 years.
Rob was diagnosed at the end of October 2007.
Cyberknife treatment to 3 tumors in liver January 2008.
Cyberknife treatment to 1 liver tumor and 1 spine tumer July 2008.
Followup scan scheduled for end of October.

Prayers of healing and compassion to all patients and caregivers.  God Bless,
Karen

Wishing all God's blessings!

Re: Roll call - patients and caregivers

Hi Everyone! I'm Heather from Camp Verde, Arizona.
Mommy to Emilee, 8
Caregiver to my husband, Lee a young 38.
Diagnosed in February 2008.
Prognosis in April, 2 months to live.
Currently, fighting the battle of his life with Gemzar weekly.
Married 15 years this year and planning on  many more.
Joined this site the very night I got home from the hospital, and found out that God gives us strength and hope not only through pray and worship, but by wonderful people like the ones on this site.

Re: Roll call - patients and caregivers

Hi everyone,  I'm the daughter to Mario age 68 diagnosed in Nov 2007.  He now lives in McKinney Texas.  Was treated at St Luke hospital in Houston, Baylor College of Medicine Houston Texas, Oncologist in Foley, Alabama and currently at McKinney Regional Cancer Center. 
3 stents placed to relieve itiching and jaundice.  Pancreatitis each time.
Started with radiation and 5-FU
Gemzar
Tarceva & Oxyplatin

Now under hospice care.  Conditions worsens daily.  I just keep praying for peace and strength.  Mother is primary caregiver and keeps vigile at his side.

15 (edited by JeffG Sun, 28 Sep 2008 13:26:06)

Re: Roll call - patients and caregivers

I just want to clarify that this particular forum is for new members to introduce themselves.  If the roll call continues, individuals who are first time members are going to be lost in the shuffle.  If you click on "USERS" above it will tell you who is a member or new member. You then have the opportunity to click on their name to obtain further information that they wanted to be known.  Also the date of when you register as a new member is above your name.  I sure would hate to see people who are introducing themselves get lost in this roll call,especially if they have a question and wanting help, there is no way to monitor this. Although a nice Ice breaker, we should wait and see if Rick can set a" roll call section" up.  Until then I think we should refrain from further roll calling.  Thank You for your cooperation and Understanding.  I've remove my roll call infor as it is already provided.

God Bless
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Roll call - patients and caregivers

Hi, This is Irene. I am 43 (oops just turned 44). Diagnosed in summer of 08, after tumor incidentally seen on CT scan on unrelated matter.

Attempted liver resection failed in Sept. 08.

Was also a caregiver to my mom, who passed away in Sept. 08, in part, I believe from the stress of trying to contemplate the notion of outliving her child.

No symptoms (except a fatigue for a year -- may or may no t be related) and nothing on bloodwork. Liver fuction remains normal. Ca9-19 slightly elevated. Size of tumr over six months has not grown appreciably.

Plan to decline further treatment at this time.

Re: Roll call - patients and caregivers

Brenda:

Caregiver to Scott (age 42, cca 4/2007, radiation, chemo, transplant 5/2008)

I'm so grateful to everyone on this site for their love and support. You are always in my prayers.

God Bless

18 (edited by celoi Thu, 02 Oct 2008 15:28:40)

Re: Roll call - patients and caregivers

I'm Charlene Eloi  (celoi) from Houston, TX.

Caregiver to my WONDERFUL FATHER DAVID COOK for 2 'scary' years beofere he passed away 9/30/2007..I am an only biologioal child of both parents.

His journey with CC was very, well, I can hardly describe my emotions and feelings while I tried to find a cure.  I am holding on to wonderful memories and enlightening conversation with my dad.  He loved me so, so much. Nothing can take that away.

Diagnosed June 21st 2006
nonoperable 2006
started CAAT Controlled Amino Acid for about 6 month
thereafter  Xeloda/Gemzar
developed 'unknown' infection
passed away from kidney failure????

What a mixed up diseased?????????????????????

The help & support of the great people here are helping me to cope as I know I am not alone and everyone here understand.

Re: Roll call - patients and caregivers

Sara from Houston, Texas, USA.  Co-caregiver to Kelly Lester, who had intrahepatic cholangiocarcinoma.  The following summarizes Kelly's treatments:

November 2005 - Kelly diagnosed with cholangiocarcinoma after having pain in her upper right quadrant for 10 months.  (Many missed diagnoses in the interim)

December 2005 - April 2006 - Kelly became a patient at MD Anderson in Houston, Texas.  Her chemo protocol was a 21-day cycle of oxaliplatin and Xeloda, with infusion of oxaliplatin on Day 1, pills of Xeloda on days 1-14, and no treatment on days 15-21.  Kelly received 3 rounds of this protocol, and experienced 17% shrinkage of her tumor by the conclusion of the 3rd round.  Kelly continued with the protocol for three more rounds, at which point her surgeon agreed to proceed with an attempted resection. 

late April 2006 - 1st attempted liver resection - Aborted because the surgeon determined Kelly had developed fatty liver.

May 2006 - The surgeon conducted a portal vein embolization to direct more blood to the cancer-free lobe of the liver.  No chemo was administered while the cancer-free lobe was allowed to grow.

June 2006 - 2nd attempted liver resection - surgeon saw seeding on Kelly's abdomen, terminating the procedure.

July 2006 - New chemo protocol begins: Gemzar and cisplatin via infusions.  This protocol continued through September 2006. 

October 2006 - scans showed this protocol was not working, and the tumors were growing.

November 2006 - Kelly decided to stop all treatments, and passed away 7 days later at 31-years-old.  Somewhere out there, all our loved ones who have passed are laughing at Kelly's sarcasm.

30-something caregiver

Re: Roll call - patients and caregivers

Hello, I

Re: Roll call - patients and caregivers

Hi Richard,   We have conversed before.  A rough life without a doubt.  My brother's wife has lupus.  Can be very debilating.  I am so happy to hear Dawn is cancer free today!  Dealing with this disease and other medical issues through out our lives, is certainly a challenge.  Again , Glad to here dawn is cc clear.  Nice to hear from you again. I'm still plugging away. just finished two weeks of radiation.  This stuff seemed to accumulate pretty quickly this time around. The full results I'll find out in a few weeks.  Well,I'lll keep it short wish you both the best .
God Bless
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Roll call - patients and caregivers

Hi Jeff, I am concerned that once again you are fully engaged in the fight against this insidious foe. I want to thank you for sharing your knowledge experiences with us. Your grit and humor in the face of these difficulties is an inspiration for us all. Our prayers are with you, and the many here that are continuing to daily face this disease. Dawn and I are certainly aware of the pervasiveness of this affliction, and feel much anxiety before every CT scan. But today, we place our lives in our savior

Re: Roll call - patients and caregivers

Hi there
My name is Lissa I am 46 years old.I have been married for 26 years have 3 girls and one grandbaby(girl)I was diagnosed November of 2007 with CC was given about four months to live.I was started on Gemzar once a week for two weeks skip a week or two and reapeat followed by a scan.IT is almost a year later and God has blessed me with great progress. I totally depend on the Lord and HE uses the knowledges that He gives the doctors to treat me.I live one day at a time and leave it in Gods hands..AS of today the doctor himself called me a miracle...so I say praise the Lord and God bless you all

provervbs 3: 5 & 6

Re: Roll call - patients and caregivers

-I am Christine, 38 and a caregiver to my husband John, 39.
-He was diagnosed June '08, two days before our son was born.
-He's had 11-once a week rounds of chemo and is currently taking a break due to severe side affect of it [chemo].  Texater & Oxaliplatin.
-He is fighting so he can be with us longer, so his son will be able to remember him.

I love you John!

Christine B.

Re: Roll call - patients and caregivers

I am Pam (Screen name Cherbourg - age 53). 
I'm a cytologist and diagnosed my mom in June 08. 

Caregiver/ Able to speak and make sense of Medical Speakese/ loving daughter to my parents married 57 years/

Mom still works full time (at 77)
Incidental finding of CC after a bout of pleurisy. ( May 08)

Stage IV inoperable CC with Metastasis to Lungs and last week after finding a pericardial effusion  (and with subsequent Pericardial window procedure on Tuesday )- today pathology report says she also now has pericardial sac metastasis.
(This had NOT BEEN A GOOD WEEk!!!!!!!!!!!!!!!!!!!!!!!)

Up until this week on Oxilyplatin and Gemcitibine (every two weeks) and also Nexavar for three Weeks (Two pills twice a day)

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.