Re: Roll call - patients and caregivers

I am Joyce - from Endicott, NY

Caregiver to my Husband Butch. He was diagnosed in early March 2008 with intrahepetic cholangiocarcinoma and passed away October 9, 2008, following a liver resection performed in July. Although the liver resection was successfully performed, he never recovered from the surgery, and the mets continued to grow - more aggresively than ever.   He would have been 67 years old on December 12, and he fought a ferocious battle. God was good to us in that he ws able to pass away peacefully at home, holding my hand, as I prayed the Lord's Prayer.

This site has been a God-send to me. I love the people on here - you are all the best.   

God Bless you all.

Joyce

Re: Roll call - patients and caregivers

My name is Laurie
From Napa, CA.

My mother, Kate (79) was diagnosed  with cc in June.  Had 65% liver resection and has done remarkably well.  Hers was a T3N0. 

She starts chemo on Tuesday. 

Just trying to stay positive!

I am so grateful for this site!

Re: Roll call - patients and caregivers

My name is Lulu, my husband was diagnosised with extrahepatic CC on March 11, 2008, he was just 49 at the time.

We were told after several tests including ERCP, CT and PET that he was clean everywhere else.  After meeting with the surgeon a week and a half later, he confirmed what we were already told that it had not spread. 

In April a whipple was attempted but aborted because it had met to the liver.  Very small spots on the liver.

Four rounds of gemzar and Xeloda did nothing, it actually got worse.  Now on Cisplatain and Irinotecan.  Husband recently has been feeling pretty good.  He does have major gas pains which I'm not sure what that means and we don't get answers from his doctor.

We have decided to go off and also do some alternative stuff in addition to the chemo.  Our feeling is that we followed the doctors directions to the letter last time and things got worse....so now he is taking around 30 supplements a day, essiac and sees a D.O once a week for vitamin C therapy( we read all the reports pro and con about this and he decided to got for it).  We also purchased a water ionizer and he drinks about a gallon of water a day.  Also completely switched his diet to an alkaline diet and eats no sugar or processed foods.

We really don't know if any of this will work, just like chemo, we don't know if that will work....and if it does, for how long. 

I feel much better being able to help him in some way. 

Thanks for listening
Lu

I miss you more and more everyday. 
RFL 6/28/58-12/27/08

29 (edited by JeffG Sun, 02 Nov 2008 21:04:45)

Re: Roll call - patients and caregivers

Lu,  I support you 100% and wish you the best outcome possible.  I have tried everything possible chemo, radiation, resection years ago.  My most positive and slowest progression was right after my resection about ten years ago.  That last three and 1/2 years my body has taken a beaten with all the advanced modern wesrtern approach.  Pros and cons both ways I guess.  Trying Tarceva at the moment.  One supplemnet I tried was Sun Farm Vegtable soup.  You can look up on internet under sun farm if your interested. I found the freeze dried packets mixed with no-sugar applesauce easy to deal with than the tubbed soup that has to be kept frozen once recoived.  Again wish you guys the best!
God Bless,
Jeff

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

Re: Roll call - patients and caregivers

Thanks for your suppport Jeff....glad you don't think we are crazy for going against the doctors.

I can't stand the thought of loosing my husband, I have to fight.

Thanks for the info on Sun Farm, already looked it up and will probably order it.

Glad to hear you were able to have a resection ten years ago.  Sorry to hear that the last several years have been tough on you.  Have you tried juicing?  I find for my husband that he can stay well nourished drinking juices also, add protein powder to yogurt with flax seed oil and fruit....very nourishing. 

Anyway, so glad I found this site....stay strong and god bless you too.

Lulu

I miss you more and more everyday. 
RFL 6/28/58-12/27/08

Re: Roll call - patients and caregivers

Hello, I am Iris and live in the Netherlands.

I am caregiver for my wonderful husband Peter, who was diagnosed in May 2007 with cc. Surgery was not possible and he has been fighting this beast for 1,5 year now, against a life prediction of 2-3 months.
Now however, he seems to be loosing this battle. At the moment he is in hospital and the doctor mentioned the word terminal.
To-day he will have a liver-echo, which will tell us more.

My thoughts are with all you patients and caregivers. Life is not easy at the moment, but still contains a lot of happy moments too.

Iris.

Re: Roll call - patients and caregivers

Dear Iris, our thoughts and prayers are with you and Peter at this time.

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

Hi, caregiver in NC

My father was diagnosed 10/28/08 with CC, intrahepatic bile duct cancer. He is 86 yo and a 13 year survivor of colon cancer. The CC is the only cancer he has now and everyone was surprised to find this is not a return of his colon cancer. His tumor is 4 ins (11cm, IIRC) and involves 3 ducts.

His doctor has recommended chemoembolization therapy. We go to the vascular doctor to discuss treatment protocol, expectations, and scheduling on the 17th.

Re: Roll call - patients and caregivers

Hi  My name is Michelle

I was diagnosed in june 2008
Current treatment is Gemzar once a week and xeloda 6 pills daily (2weeks on 1 week off).
I am married to a wonderful man who is trying to help me through this process.  I also have two beautiful girls one just turned 13 and the other is 10.  These two girls are what keeps me going when things get rough.

Re: Roll call - patients and caregivers

Hi Iam DR MPReddy from india.diagnosed in 08/07 had Rt lobectomy and cholecystectomy  with roun-n-y hepatojejenostomy  in 3/8 with cancer free resection.back to full work in 4/8 doing pretty good.having regular usscan.ctscans,lft/afp studies every one month. sofar so good.though i had bile leak for 1 month i kept working stubernly. bile leak stopped in 2months time.liver compleately regernarated in 2months time.Incidentally iam a practicing Gastroenterologist  busy doing as many as 40 procedures a day and diagnosing about 3to 4 cancers every day. my life and attitute has tolally changed with cancer patients . now iam undestanging there physical and emotional pain as well as  i know how the pt feels. Its difficulty to pratice like that when i my self having cc and giving emotion support to every one. till this day only myself and my wife knows this secret as i dont want any body to sympathise with me. Iam a trekeer  in pastbefore the cc story  i have trekked  many mountains like  kilmijaro in africa and alps in swiss. mt fuji in tokyo and may areas in in himalyan range upto 21000feet height. Recently in nov08 i have trekked Nathull passin himalyas near india china border  of 15000 feet  to proove myself . I  want to live and conquer the disease  and serve the  people  and share there emotions. iam confident and courageous and will live with hope and prayers.

Re: Roll call - patients and caregivers

Dr. Reddy,

It sounds like you have a very positive attitude. I am sorry you have to be dealing with this cancer, but even thought it is a terrible thing to have to be going through, atleast it has helped to give you a better attitude & understanding of your patients, which is a wonderful gift under such trying circumstances. You sound like a very confident, strong, compassionate & carrying person. Keep up the good work. I am hoping for the best for you. My thoughts & prayers are with you, your family & all of your patients.

Darla

"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

Welcome, Doctor, to the best little club in the world that no one wishes to join.
With CC you have now put on your most powerful boots to climb your tallest mountain! It is one rough trek, however we never loose hope of getting to the top to find a new treatment or a cure. Heck, at this point we would be happy with even a little recognition. There is not much research as you know, and many doctors just throw up their hands in defeat when they tell you that you have CC. You keep trekking and please keep us posted on your journey!

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

I am Rob, age 51, living in Houston, Texas. Diagnosed with Mixed cholangiohepatocellular carcinoma in January of 2008.  Treated at MD Anderson with chemo and then radiofrequency ablation. In remission as of December 2008. Full story available elsewhere on this site.

Willing to answer any and all questions about MD Anderson for those who need help/info!

Violarob in Texas