Topic: Wanted: Survivor Stories

Hey there, over the last few weeks I've heard some incredible cholangiocarcinoma survivor stories. 

If you're a cholangiocarcinoma survivor or if you know one, can you shoot me an email?  rick@cholangiocarcinoma.org

Thanks!

Re: Wanted: Survivor Stories

Done, Rick. A project in mind?

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: Wanted: Survivor Stories

What do you mean exactly by "survivor"? Cancer-free, or just still alive and kicking?

As far as I'm concerned, every patient who posts on these boards is an amazing survivor story!

Kristin

Peace, hope, and healing to all!

Re: Wanted: Survivor Stories

Kristin....I believe that this cancer should be classified a chronic disease for those members who, as you say: are alive and kicking.
In this particular instance we are looking for people who do not display any visible recurrence or, those who have an inactive disease.  Although, currently we have success stories posted however, I believe that they get lost in the threads.   We could display survivor stories in a more prominent place and rotate each after a certain period of time.  The reasons are threefold: 
1.    It will encourage patients to share with us their stories of success.
2.    It will be in a prominent place.
3.    It allows people to share their stories without the fear of offending those in different stages of this disease.
What do you think?
As always, best wishes,
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: Wanted: Survivor Stories

Oh well. I guess I've just been demoted from the ranks of success stories. sad

Peace, hope, and healing to all!

Re: Wanted: Survivor Stories

Kristin, you are a success story to me.  And a great inspiration!  I don't think there's anybody with cc that doesn't have bumps in the road. 

The bumps people have are helping/preparing others to ride through the bumps without giving up.

Re: Wanted: Survivor Stories

Hi Rick, I met you and the others of this foundation at the symposium last week. I'll be glad to share my survivor story, I'd planned to do that sometime when I got back from my trip. As you know, I'm a 6-year survivor of cholangiocarcinoma, with no recurrence or ongoing problems. I'll plan to draft my story and send to you via email. Thanks - Dale

Re: Wanted: Survivor Stories

MY CC SUCCESS STORY

OK, so now I have a growing tumor that squashed my bile duct, and a malfunctioning bile bag hanging off my side.

But in the six years since I was diagnosed, I have:

traveled to Europe three times and to Asia once

driven and camped the US coast-to-coast on back roads, twice

written two novels, a memoir, and part of a nonfiction book, and had a literary agent submit them to major publishers

written textbooks (my profession) that are used by hundreds of thousands of students in Asia and Latin America to learn English as a foreign language, and understand other people better

started making visual art and showed it in public shows

deepened my spiritual life enormously, and found my way back home to church

made many new dear and wonderful friends

got my first-ever dog, who delights me every day

bought my first-ever house and planted my first-ever garden

and learned to be a better and kinder wife, sister, daughter, granddaughter, daughter-in-law, and friend.

To heck with the bile bag and tumor, I think that's pretty darn successful.

Peace, hope, and healing to all!

Re: Wanted: Survivor Stories

Kristin - awesome!! That's a great story! I wish you continued success in your journey!!

Re: Wanted: Survivor Stories

Wow Kristin!  You are an amazing success story.  Even more than I realized :-)

Re: Wanted: Survivor Stories

Kristin......point well taken and much appreciated.  Originally, my thought was to encourge those people to come forward who are afraid to offend those in different stages of the disease.  I had numerous discussions with CC patients who do not want to visit the site and share their stories simply, for this reason.  But, as you say, success is measured in different ways.  Therefore, should we use a timeline such as: 1 year survivor, 2 year, etc.?
Best wishes,
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: Wanted: Survivor Stories

Thank you for your post, Marion. I think that's a really good idea.

I was having a very rough day when I posted (my second drain has now gown haywire) and was feeling like an official "failure" because I now have disease progression. It was my sweetie of a husband who started pointing out all the things I've done since I was diagnosed and had the recurrence.

I think a CC success story is anyone who FEELS like a success story, and I would just love to hear all the stories of people who feel that way!

Thanks!

Kristin

Peace, hope, and healing to all!

Re: Wanted: Survivor Stories

Thank you for your post, Marion. I think that's a really good idea.

I was having a very rough day when I posted (my second drain has now gown haywire) and was feeling like an official "failure" because I now have disease progression. It was my sweetie of a husband who started pointing out all the things I've done since I was diagnosed and had the recurrence.

I think a CC success story is anyone who FEELS like a success story, and I would just love to hear all the stories of people who feel that way!

Thanks!

Kristin

Peace, hope, and healing to all!

Re: Wanted: Survivor Stories

Kristin....thanks right back at you.  I am wishing for the drain to finally do what it is meant to do.  What do you mean by haywire?  Are you still itching? 
I have admired you long before your sweet husband had you realize that you are are a success. 
Hugs coming your way,
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: Wanted: Survivor Stories

You are a TRUE SUCCESS, Kristin & long, long, long may you continue to be so!!! big_smile

Julia xx

"Time may be a great healer, but it's a lousy beautician."

Re: Wanted: Survivor Stories

Wow Kristin!  I wish I could accomplish half as much as you.  Anything still left on your to do list?  (if you have one, that is!).

Marion, I know that I get great strength hearing of other success stories.  And Kristin IS one of those.  Also the longevity issues matter a lot.  Some of us might still think we have a date stamped on our foot, but hearing of those that have gone a distance, gives us more hope and we keep trying and get more informed on our illness so we can fight it more with our doctors.

Thanks for this.

Linda Z.

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: Wanted: Survivor Stories

Thanks Linda.  Kristin, are you up to sending your story to Rick?  And please, anyone else?.  Knowing Rick, he will find the perfect spot to display it.  It will be a great way of starting the day.
Best to each and everyone,
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: Wanted: Survivor Stories

Hi ladies,

Thanks for your kind comments. OK, I'll send that story to Rick, if you think people might enjoy it.

The ONLY good thing cancer has done for me is to make me get up and actually do all the things that people say "someday, I'd love to..." I think I drive my family and friends crazy because I always want to do everything NOW! There are still plenty of things on my list-- make more art, go to Montreal and speak French, and get at least some of my books published. I've had rotten luck with that (not with the textbooks.)

Marion, on Friday I'm off to a different hospital to have a different doctor put in a new drain. My onco and I are both disgusted with the "don't bother me, I'm a superstar" aproach of the first guy.

Hugs to all,

Kristin

Peace, hope, and healing to all!

Re: Wanted: Survivor Stories

Kristin.....We don't only think rather, we KNOW that your story will bring joy to all.  Thanks for doing it. 
Good luck on Friday.  I can't wait to see your drain problem finally solved.  You are too busy chasing the aliens.
Hugs coming your way,
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: Wanted: Survivor Stories

Hi Marions - I sent my story via email to Rick earlier this week.  Along with a link to a blog of my cancer journey.  Thanks!! Dale

Re: Wanted: Survivor Stories

Thanks so very much, Dale.  I wish that you and I had more time to connect while at the symposium therefore, your story will make up for part of it.
I am hoping for us to meet again real soon.
Best,
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: Wanted: Survivor Stories

Rick is in the process of collecting survivor stories before he launches the new program.  So please, step forward and submit.
Thanks to all,
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: Wanted: Survivor Stories

My husband was diagnosed with cc in the bile duck, isolated, resectable, v small tumour in April 2010. he had an operation on July 1, 2009 and was told that the prognosis was very good. In April 2010 he began to experience indigestion symptoms when on holiday and after eating fatty food he was not used to. He had a CT Scan which was normal but same symptoms continued on and off which became worse when on holidays. By the end of September he was admitted to hospital and after three endoscopies and several scans he was told
he had an obstruction, scar tissue from the operation which eventually led to an
operation in order to by pass the stricture. The operation was one on Nov 3, When he was told that the cancer had returned and there is nothing they can do.He finds it extremely hard to cope with the prognosis and the idea that he was told that "he needs to get used to the idea of dying"... I have read A lot about the body-mind medicine and we have consulted an integrated medicine doctor. That experience was a positive one but my husband is now having a lot of doubts regarding the stove or complementary practices. He is a medical doctor and it is difficult for him to open up on new ideas. The oncologist is pushing towards chemo (but cannot remember the names of the drugs) which mostly do not work and if they do will prolong his life at the end bynthree months. He is not readied to make this decision. In fact he seems lost regard g everything including fighting even if he may have a small chance to survive or live with the cancer. Could anybody help us with some different ideas or suggestions?

Many thanks...
thirdtimelucky?





2010 and three days later the surgeon told him that the cancer was back and it was a tumour mass under the scar tissue in the deodinum and this was the reason it was not showing in the scan. He also said that there is nothing they can do and whatever wil happen will happen. the gastroenterologist and the oncologist told him that it is a rare toe of cancer, they don't know much about it and so there is nothing they can do so he must get used to the idea of dying! he oncologist told him that he can have chemo which, if it will work, it will give him an extra three months at end...however there is nothing else they can say. He is shock and talks very little... I researched the Internet and read quite a bit about the body-mind medicine that involves a special diet alkaline diet, supplements, mediation, accupuncture, yoga, visualisation exercises and physical fitness (walking, running, etc). We have actually had a consultation with an integrated medicine doctor, who is a qualified general medicine practitioner with 25 years expediente with cancer patients. My husband has another  scan on January 26, 2011 in order to look for any spread. He feels confused regarding the chemo and under a lot of pressure to make a decision himself. We live in the UK and the oncologist is in our regional hospital with little experience on this type of cancer. Is there anyone who can help us with any alternative ideas?

He began taking the supplements and followed the special diet for three weeks but he is now having doubts about continuing with the body-mind medicine. I don't know how to help him because he refuses to even think about anything I suggest including getting second and medical opinions. Even though I am not in denial of the medical opinion, I still believe that we need to look at what they do elsewhere and consider all the recommendations of the body-mind medicine.

Re: Wanted: Survivor Stories

Hello thridtimelucky and WELCOME to our wonderful family. First I would like to tell you that where my husbands duodenum used to be is right where the cancer returned. Second if a doctor told me to go home and die, I would definitely get another opinion rather quickly! We do have quite a number of our family in the UK and I am positive they will be coming along soon, with more suggestions for you. Personally I would not wait until the 26th for the next scan I would get in and get another opinion now. Just gather all the test results and another Oncologist will either back up the prognosis or give you a plan. When my husband was told in June that the only thing he could do was Palliative Chemo it was the hardest decision of his life but had to be his decision. He chose no chemo. When the cancer first returned we opted for Cyber Knife which bought Teddy another 2 years. The tumor must be uner 7cm to have Cyber Knife.  If you go with another opinion please make sure the ONC has had experience with CC. I wish you and am sending you all the best wishes I can along with a ton of good luck. Please keep us posted.

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.

25 (edited by kimcirucci Mon, 27 Dec 2010 00:45:04)

Re: Wanted: Survivor Stories

I've read all of your posts & want to respond to everyone.  First of all, Kristin, I totally agree with what you've said and yes you are a survivor since you are surviving.  My story is listed under the Intro section as "My inspirational story".  Since it's so long, I won't reiterate.  As I've mentioned before, I don't know if I will ever believe I am a cc survivor or even cancer-free, but to date, I have undergone ex vivo resection with a lot of reconstruction.  This is a very rare type of surgery.  I believe my surgery was the 6th one performed by my miracle worker surgeon, Dr. Kato.  Although I was told in July following my surgery that I was cancer-free, I will forever be looking over my shoulder.  As a matter of fact, I have a CT Scan scheduled for 12/28 & I must admit that I am a bit nervous to know of the results.  I just keep positive & won't allow my mind to drift onto negative thoughts.  I have fought quite a few battles during the past year & I'm certainly not about to stop now.  Regardless of what this next CT Scan shows, I will face it with my eyes wide open & fight with all of my might as I always do.  It truly saddens me when I hear of people who begin to "give up".  I know all too well what it feels like to not be able to get out of bed, or to feel like you're not going to make it, but through it all, I never allowed giving up to be an option.  If anything, the more I was told that I was inoperable, the madder I got & the more I found the strength to fight even harder.  As I mentioned, I will know in about another week if my CT Scan is still clear, but all I can say is I am alive today & feeling very well.  I was able to Christmas shop for my children, partake in Christmas festivities, eat like a pig, and hug my daughters on Christmas morning.  My current oncologist said that I should not be alive right now and that he believes someone took me by the hand.  I truly believe that as well.  He never even heard of the type of surgery I had, but he said he is certainly going to tell other doctors about it.  During my recuperation period from my extensive surgery (5 months ago), I have even designed a pendant/bracelet for cancer patients.  It is currently being made in China.  I should have the finished product in a few weeks.  The purpose of my pendant is to provide cancer patients with a sense of empowerment.  Although we don't have much control over this nasty disease, we do have control over our ability to fight.  If anyone is interested in seeing my design, I would love to share it with you.  To anyone who feels as though they want to give up, I would like to leave you with the words of one of my favorite quotes by Jack Dempsey which states:  "A Champion is Someone Who Gets up Even When He Can't".  Please never give up.  Get up & keep on fighting!!  This disease can be conquered, but you must fight to win.  Best wishes & God bless to all!!