Topic: Today is my six-year anniversary

Six years ago today I had my first surgery and they diagnosed me for sure-- I'd been sick for half a year before that, but they couldn't figure it out. And I am so grateful and humbled at still being here. It's been a heck of a journey, emotionally and spiritually, but I've had the help of so many kind people along the way-- including everyone on these boards. My deepest thanks to all of you.

When I had my recurrence 3 years ago and found out I was "incurable" I was just devastated. I had no idea how beautiful the next part of my life would turn out to be. I guess that's the biggest thing I've learned. We just never, never know what the future holds.

I promise to quit being so philosophical tomorrow!

Thank-you hugs to everyone,

Kristin

Peace, hope, and healing to all!

Re: Today is my six-year anniversary

Dearest Kristin HAPPY ANNIVERSARY and what a message of HOPE for us all. Celebrate, celebrate!   smile:):)

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: Today is my six-year anniversary

Kristin,

You gave me goosebumps and tears! What an inspiration. What hope. I just read your post to Hans and we are both teary and smiling. FANTASTIC.

LIFE IS BEAUTIFUL and we are all blessed by knowing each other.

Here is to another 6 years...and 6 years after that.....and 6 years after that....

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Today is my six-year anniversary

Hi Kristen,

Thank you for sharing this and what an inspiration you are! That sure is some journey you have been on and I hope you will celebrate today and have a great day!

Here's to the next 6 years and my very 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: Today is my six-year anniversary

Kristin,

Congratulations!  Thanks for sharing.  Indeed a reason to celebrate and hopefully for many more years to come.

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: Today is my six-year anniversary

Outstanding!! I love seeing people beat the odds the doctor's give them.

Mel

Don't let cancer ruin your day!

Re: Today is my six-year anniversary

Happy anniversary!!

Re: Today is my six-year anniversary

Kristin:

Wonderful, wonderful!  I'm so happy for you.

My husband Tom experienced a reoccurance about 20 months after his resection for CC.  I'm going to tell him of your experience.  He too was told that it 'incurable' and 'inoperable' and that he should go home and make his arrangements.  His oncologist gave us no hope whatsoever and told us that radiation and chemo where not an option.

We were not happy with that answer and immediately sought 2nd and 3rd opinoins.  Tom's tumor reoccurance is inoperable because of the placement and because it involves the hepatic artery.  But for an oncologist to say that Radiation and Chemo is not an option was unbelievable.

Our 2nd and 3rd opinoins agreed that it was inoperable, but disagreed with the no chemo and no radiation!

After 28 rounds of Chemo Tom's tumor has shrunk!  His new oncologist agrees that she cannot 'cure' him but she feels that she can put him into remission and by remission she means shrinking the tumor with radiation and chemo so that the tumor is gone.  Then it's a regime of CTScans, etc watching for other reoccurances and treating them agressively like she is doing with this one.  Tom currently cannot take chemo until they are able to stent his liver.

I'm so happy for you and your story will be an inspiration to Tom to keep fighting and may be the motivation that he needs.  I want another 23 months and then 6 years for Tom and then we'll start over with another 23 months and 6 years!!!

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Re: Today is my six-year anniversary

Hi Margaret,

I too was originally told that I wasn't a candidate for radiation, but I insisted on talking to a radiation oncologist, and they treated me and it worked very well. We all need to follow our intuitions and keep pushing to get what we need.

Wishing you 23 YEARS-- at least!

Kristin

Peace, hope, and healing to all!

Re: Today is my six-year anniversary

Great news, happy anniversary and here's to 50 more years! You beat the odds and give hope to us all.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Today is my six-year anniversary

Kristin,

What great news and please don't stop being so philosophical! I am convinced it is good for your health!

Patty

Re: Today is my six-year anniversary

Happy Anniversary Kristin and many many more!!

Judi

Re: Today is my six-year anniversary

just wanted to share some good news. My mother was diagnosed with this disease back in August of last year and the prognosis wasn't encouraging at all.  Basically they gave her 6 months/year to live.  She started on a regiment of gemsidabean (sp?) every other week with an oral chemo drug called Tarceva everyday.  Her CA-19 score has been steadily going down.  She had a CT scan last week and we met with the OC today and were shockingly thrilled that the tumors had shrunk by about 20% Her CA-19 was down to 24.  Thanks to her oc and the grace of God, she's getting stronger everyday!!

Re: Today is my six-year anniversary

Dear Mary's Son, what fantastic news to share with us. We are so very happy for your Mom. The right ONC, the right plan and lots of faith and hope can produce Miracles. We have seen them on this site. Thanks and please let us now how Mom progresses.

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: Today is my six-year anniversary

Mary's son.....Congratulations.  This is the news we thrive on.  On to continued success with her treatments. 
Best of all 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: Today is my six-year anniversary

Kristin, I am so happy for you.  Last July I was told I had six months for it was incurable and there was no remission for it.  A doctor put in a stent in the bile duct and I have had chemo (gemzar) and radiation.  Since the treatments, the CT scan showed no change.  My CA-19 started coming down until last month and it went from 1525 back up to 4078.  After ordering a CT scan, the doctor decided to hold off of more chemo for now since there was no change in the CT scan.  I feel good but I have lost a lot of weight.  I would like to ask Mary's son if his mother's CA-19 test ever got in the thousands?  I am going to mention to my doctor about Tarceva.  She mentioned that if and when I have to start chemo, again, she would do a combination of genzar and carbo.  It makes me feel good to hear all the good news.  Congratulations to both Kristin and Mary.

Re: Today is my six-year anniversary

Hi Rowena32,

My mom's CA-19 score started out at 565.   It started in her bile ducts that split in the liver and had matasitised to just one lobe of her liver.  Here in the States, the Tarceva is an expensive drug. The co-pay runs about $2,900.00 a month until you're out of the donut hole with medicare.  The best of luck to you.

Re: Today is my six-year anniversary

Thats great Kristin,nice post                Janet

Re: Today is my six-year anniversary

Congratulations, Kristin.  God only knows what the future holds, but he seems to be holding you gently in the palm of his hand.  May he continue to do so, and may he continue to bless you with the joy at living you've expressed here and now.

Re: Today is my six-year anniversary

Congrats.. May you have MANY more years!!!

May I ask what your diagnose was and how you've been getting treatments? I too was told CC, incurable with 3-6 months to live, I am on month 9 now and feel pretty good. Can't do surgery, or no transplant for me, position of tumors wrapped around the ducts. But I had 3 radiations, and am on chemo gemzar & cisplatin. Tumor went from the size of an orabge to teh size of jelly bean, VERY thankful for that. Jesus is great! Round 10 of chemo is almost complete. I guess I will be on chemo until I die or until something else pops along....please tell us what we can do to help ourselves. Many many thanks on your inspiration and giving us hope!! Cheryl smile

Re: Today is my six-year anniversary

Hi Cheryl,

I'm really sorry about this long delay in replying to your post-- I was up north visiting with my family for a few weeks and couldn't go online much. To summarize my story very briefly, in 2/04 I was diagnosed and had a resection with no follow-up treatment; 9/06 I had a recurrence and failed surgery (the tumor is on a blood vessel) followed by 7 weeks radiation and Xeloda. The tumor was basically stable until 3/10, when it started giving me trouble again, though they couldn't find the growth on any CAT or PET scans. Finally they realized that the tumor had grown somewhat and was squashing my bile duct against my liver, and they put in an external drain.

Next week I go for another CAT scan and then see my oncologist to decide what we're going to do-- he thinks chemo with gemzar and oxaliplatin. So, the adventure continues! But I have been officially "incurable" for 4 years now, and have had the disease for about 7 years (it took a long time to get the symptoms diagnosed.) I still have lots of hope, and like you, am trusting in prayer.

Congratulations on your fabulous results from chemo!! I hope those drugs have walloped your tumors so bad they'll just plain give up. (I like to think that I have a very lazy, wimpy tumor...)

Wishing you all the best--

Kristin

Peace, hope, and healing to all!

Re: Today is my six-year anniversary

Kristin,

seeing this post again gave me a big smile.  There is hope even for those who have been "told" there is nothing to do.  You have shown that.  Keep up the fight and thanks for giving us all more hope for the duration.

Good luck with your CT scan next week. 

(here's wishing ALL of us that have tumors that they will be very lazy, wimpy tumors too!)

Linda Z.

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

Re: Today is my six-year anniversary

COngratulations Kristin! I hope everything goes well for you with the chemo should that be the next mode of treatment for you.  Good luck with your CT scans...

Here is our experience thus far with that combo chemo.

My brother started on gemcitabine and oxaliplatin when his CC was diagnosed as inoperable back in November.  He continued Dec 2010 through Jun on the treatments which shrunk the tumors in his lung and liver quite substanially and were not even seen anymore in the lymph.  His tumor marker over that time decreased from 1571 to 99.  He recently changed to gemcitabine alone just this month when the neuropathy got a little too much to take but otherwise has been doing well with little other adverse effects.

He entered the hospital last night due to stomach pains which was diagnosed as gall bladder inflammation.  We wait to hear if he needs it to be removed or just antibiotics continued for now.  I was just online trying to find out more information about gall bladder procedures before I go back to the hospital this morning.