1 (edited by margie Mon, 02 Jun 2008 08:09:05)

Topic: 4 years doing great

I had Whipple surgery in 6/04 for cc of distal bile duct. Tumor was about 2 cm and it invaded head of pancreas and 1 lymph node.  They removed duodenem, bile ducts, head of pancreas and cluster of lymph nodes, then resected. Had chemo and radiation.  I lost 60 lbs. and couldn't eat for several months.  Gradually, I got better and all blood work and CT scans have been negative since.  The only meds I take are pancreatic enzyme with meals and nexium for acid reflux.   I am very grateful to be alive and credit surgeons at Brigham and Womens Hospital in Boston for saving my life.  I enjoy every minute of every day!

Re: 4 years doing great

Thanks Margie!   We love good news stories.

Re: 4 years doing great

I LOVE good news. Thank you for sharing your story. I hope you continue to get those negative scans!!!

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: 4 years doing great

Margie.... That's what I like to hear! Keep on rolling.

Jeff G.

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

Re: 4 years doing great

I've never met or talked with anyone with cc until now.  Its been 4 years since my surgery.  The only difference now is I don't experience physical hunger (just psychological hunger), and I never regained my former strength and energy, although I get along just fine.  Also, I have problems digesting fat, sugar and protein, and must take a pancreatic enzyme with meals.  Do any other people have a similar experience?  Has anyone had a long-time survival?  If so, do you have any problems?  I'd love to hear from others.

6 (edited by JeffG Tue, 10 Jun 2008 18:04:35)

Re: 4 years doing great

Hi Margie... 9 years and 2 months liver and gallbladder resection, many chemo regimens and a couple imrt radiation treatments.  Not the person I use to be but functional enough to be happy and alive, driving and handy man work in spurts.  If i can just get one of these chemo treatment to keep on working maybe a cure will pop up from nowhere!  Would that be nice for all?  Your doing really great Margie by the sounds of things.  Good follow-up and maintenance and advocation. Listen to your body and know when to tell the docs to slow down and cut back.  For some of us that are still battling the hard knock, I think the the docs have a tendency to push to much to fast and to the point of our bodies can't withstand if you know what I mean.  Welcome to the sight.  Yeas there our others with long term survial and still battling, some in remmssion, some clear with great prognosis and unfortunately some to advanced before diagnosis and we have had to say our goodbyes; We miss them dearly thier loved ones more so.  Different thing are being tried every day now.  My doc says once it mets it gives him the room to offer an try other treatments; he dosen't have to stick to CC protocol entirely.  Which I think is good. That is definitely why I'm still hanging in there. Plus mediatation, Practice mind and body healing and eat like a pig even when I don't feel like it. and exercixe to keep muscle and tisse from wasting. Dog Gone I've ramled away time to stop.
Bless Ya! and again welcome. ask what ever question you may have on your mind the good members of this site are not bashful in passing on their experiences which are many in many countries and states;  They have been to some of the best treatment centers in the world. Standard protocol to experimental like dentric cell, internal radiation beads and so on.  Hope for survival exsist and long term surval as well. But < But< But< CC is quite an unpredictable cancer and acts differently on deferent people so at the moment treatments are what will work and what Insurance Companies will cover or who wants to morgage their home to keep the battle going.  Second an thied opinions is preached loudly onthis site.  We have seen turned downs from surgeons and others take on the task and with good results.  I said I was going to stop . I'm on my first cycle of new regimen and I think they put a little extra steriods in my premeds Ha!
Cheerio for Now!
Jeff G.
Jeff G.

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

Re: 4 years doing great

Hi, Jeff; Thanks for your story.  It sounds like you have been through a lot.  I would never have imagined 9 years of chemo, but its keeping you alive and thats what counts. My understanding is that there is no specific treatment for cc, so that, in my case, it is treated as pancreatic cancer.  There doesn't seem to be much research being done, as there are too few cases.  In spite of what you are going through you are living a quality life and doing most of what you want to do.  May you keep it up for many, many years and hopefully a cure will be found.
Best Regards,
Margie

Re: 4 years doing great

Thanks Margie... I have only been doing chemo and radiation just over three years. Before that I tried alternate methods and health food stores. and monitored every three months with scans until tumors and mets got to much and growing more rapidly.  I would'nt wish nine years of chemo on no one.
Bless Ya!

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

Re: 4 years doing great

You guys are all inspirational! I hope my husband does as well. He has surgery tomorrow at Hopkins. Please pray for us.
                                  Anne

Re: 4 years doing great

Anne,
The prayers are coming your way.  Stay strong.
Karen

Wishing all God's blessings!

Re: 4 years doing great

margie, I have a Aunt who has bile duct cancer and my mother.  Unfortually, my mother doesn't have a option for whipped surgery but my Aunt does.  However, my Aunt is scared of having the surgery and I want to  know if you could talk to her about it. I would really appreciate it.  She has been told of all the complications of having the surgery and not the ones who survived the surgery.  I would really appreicate it.  thank you.  Mindy

Re: 4 years doing great

Hi Mindy and welcome to our world of loving and caring people. I am sure you did not realize that Margie has not been on this board for a year but with that said, my husband Teddy had a Whipple 4 years ago at the age of 73. He is doing well, golfing and maybe going back to part time work. I would be happy to talk to you or your Aunt. You can e mail me privately as my e mail is by my name. I look forward to hearing from you.

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: 4 years doing great

Hello Mindy.....In addition too, clicking on the e-mail, below the poster's name, will allow you to communicate directly with the person.  Also, if you are inclined to do so, the search function (top of page) and using the key word "Whipple" (no author needed) will lead you to previous discussions on this subject. 
My best wishes to you,
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