Re: Survival...Please tell us your latest milestone

Eric-

So happy for you and thank you for sharing!  It gives hope to others who are newer to this forum.  Would you mind letting me know if you are still on the Gem/Cis or did they modify the chemo?

Wishing you a long, long time of continued stability.

Catherine

Re: Survival...Please tell us your latest milestone

Good Friday is always special to me.  Good Friday, 2009 I officially became a member of this small club. Today, five years later, I am still a member, although slightly inactive.  I have been very busy living! Despite the statistics, some of us make it through.  I am so grateful for the past five years, I can't express it.

Re: Survival...Please tell us your latest milestone

Catherine, I stopped Cisplatin in mid-Sept. due to neuropathy.  Once the platinum cleared out of my system (about 90 days) I felt much better.  Less chemo-brain & fatigue.  So far the Gencitabine is working on its own.

How are you doing? 

I marvel that I am doing so well....going to NY Auto Show today with my adult daughters.  FUN!

Re: Survival...Please tell us your latest milestone

John Thomas, Happy Easter to You and yours! I love it when I wake up to this kind of post. I am so over the moon for you and how you progressed! We so need these kind of HOPE posts! Best wishes and continued good luck.

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: Survival...Please tell us your latest milestone

I finished IMRT in Early November, then returned to MD Anderson in January for a PET scan. It was clear and my CA 19-9 was 10.2. Dr. Javle said I was clear to go three months with NO treatment.  I came home and felt the best ever in a very long time. I just returned for a checkup after that (3 months later) and scan are still clear....no lymph nodes are bothersome to them or any concern. Tumor is mostly necrotic and inactive. My CA 19-9 at now at 11. The dr said it was the best report ever since coming to MD Anderson. I was diagnosed in Feb of 2011 and started seeing Dr. Javle in April of 2011....after going to Mayo who gave no hope whatsoever....this wasted a few months but totally worth it with the expert care I receive from Dr. Malind Javle and MD Anderson. I am biking 10 miles on some days and walked in a 5K over the weekend. Feeling better and better every minute of each day. Feeling very blessed and thankful!!

Re: Survival...Please tell us your latest milestone

John Thomas and Patti from Illinois,
Thank you for sharing your wonderful stories! Great to hear you're staying busy living and loving!

Willow

Re: Survival...Please tell us your latest milestone

Catherine:

After eight rounds of cis/gem I went to gem only in March.  Started my fifth round today.  Had a CT scan in April, liver tumor still decreasing slowly, next one will be end of June.  Alk-phos is steady between 130-140 and CA 19-9 runs from 50-70.  Platelets are steadier too, >100,000 since mid-April.  Neuropathy is markedly decreased, some toes are free of it.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Survival...Please tell us your latest milestone

Dawn, my wife, had her resection done in January of 2006 at Rush University Hospital in Chicago. She recently had a CT scan, - 8 1/2 years still cancer free. We hit a millstone last summer, as our oldest daughter was married, recently received news that she and I will be grandparents early next year.  We sincerely thank the Clements family all of you involved in the foundation and this web site then and today.

Re: Survival...Please tell us your latest milestone

CONGRATULATIONS, Evan and Dawn on your new title of Grandparents! There is nothing like it in the world! And then to top off everything 8 1/2 years CC free! YIPPEE!  Dawn is truly a poster girl for HOPE and Miracles! And those word also hold true as in a Grandchild Miracle and hope for a healthy future for all!  Keep your good news coming and wishing the whole family the very best!

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: Survival...Please tell us your latest milestone

Thanks Lainy! our prayers go out to everyone dealing with this cancer.

Re: Survival...Please tell us your latest milestone

My husband will celebrate 6 years cancer free this week. He had stage 4 cc and was treated successfully at Johns Hopkins by Dr. William Sharfman and Dr. Michael Choti. There is hope!

Re: Survival...Please tell us your latest milestone

Evan and Wabals......How thrilling it is to hear from you.  I just had to retrieve your very first posting on this site and place here for memories' sake:
Evan and Wabals respectively:

Mon, 16 Jan 2006 10:44:23
My wife Dawn (47) was just diagnosed with bile duct cancer. She had a sucessful liver resection done on 1/12/06 at Rush university Hospital in Chicago. We are searching for possible treatments as the prognosis is for return of the cancer and 3 to 5 years survivability.

Sat, 05 Jul 2008 18:29:18

My husband has had cc since 2006 but we were not aware of it. He had a chest ct pre-op for bypass surgery and he had a 3 cm lesion on the liver. No one told us. A year later he had a ct for an unrelated problem and it was found-8cm. After a year of chemo for" cancer of unknown primary", which was very rough, he had surgery and it was open and close. The surgeon said he was terminal. Then we went to Johns Hopkins and he had gemzar for10 mos. which shrunk the tumor to 2.5 cm. He is scheduled for surgery at Hopkins Tues., July 8th.2008, almost a year to the day of the last surgery. Dr. Choti is hopeful. Do not give up hope even if they say it is hopeless. Put it in God's loving hands. He will guide you through it.

A huge, big thanks for spreading hope to others.
Hugs,
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: Survival...Please tell us your latest milestone

This is the best reading.....love the HOPE this brings to all of us.
Thank you for sharing these awesome stories.
Lisa

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: Survival...Please tell us your latest milestone

Brilliant to read these stories Evan and Wabals, love it!! Thanks to you both for sharing them with us all and yes, there is hope!

My thanks to you both,

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: Survival...Please tell us your latest milestone

Thanks Marion and Gavin. It has been quite an interesting 6 years. Just want to remind everyone that not all MDs are created equal and some will not admit they are over their head. Find a doctor at a major cancer center. That is your best chance, along with a lot of prayer.
So happy for you Evan! Congratulations on becoming a grandfather. We have 12 grandkids now, 3 added since the diagnosis. So  thankful!
Love and prayers for each and every one of you.

Anne

Re: Survival...Please tell us your latest milestone

The longest journey begins with the first step.  My first step is one year.  With God's help, counting on many more.  It took a while but I've come to terms with my new life.

Tumors are stable.  Chemo is still easy.  Alk-phos is hanging around 130-140 since March and CA 19-9 is 60-70 since November.

Unrelated note:  My wife insists that I concentrate on doing things that are at least a 7 (0-10 scale).  Trouble is, planting flowers and bushes is a 9 but weeding is only a 1.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Survival...Please tell us your latest milestone

I just finished the  adjuvant chemo for round 4 of Gem/Cis  following my resection in late Feb 2014.  Mayo onc wants me to do 4-6 rounds as tolerated.  My local onc said that I "could" stop now because Mayo wasn't specific, but I think that is splitting hairs.  As tolerated to me means...go for 6 if at all possible...and that is what I am going to do.   At this point, I don't want to look back some day and say , "What if?"   But, I have to tell you that having gotten to the 4 rounds ...felt pretty good when that port needle came out last Wed and I could put another star sticker on my chart.  So, if my blood counts stay good....and I can stay on schedule.....get through the last four infusions of rounds 5 and 6, then the chemo is done in late August and my port will come out.  I don't know which I am looking more forward to.  The chemo port was put in really wonky and is a constant trouble to access.    Before that though, I will go back to Mayo for another scan on August 1 and blood work.  For now, my doctors all say that Ihey are surprised at how well I'm doing at this point....and blood work looks really good so far...at least good enough to continue through more chemo.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: Survival...Please tell us your latest milestone

Julie, it all sounds so terrific! You can do it girl. just break through those walls and then we will celebrate. I know, you can make all of us cakes!!!!!!!!!!!!!

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: Survival...Please tell us your latest milestone

Lainy, if we get down south this winter....I'll make a cake and bring it along.....a celebration cake

Had a meeting today with the cancer center Thrive Program...a cancer fitness and wellness program.  I swear....I don't know how I"m going to fit all this junk into a schedule and have any time left..  I had a  session today to determine just how out of shape I am.....and then I'm to meet with a physical therapist for two days a week...40 min sessions...to try to regain some stamina.  I know that at the end of round 3 chemo, I had about 5 days where I felt pretty great....energy level really ramped up.....but then knocked down again by day one chemo of round 4....and I still feel really fatigued and tired all the time.    I'm guessing that it won't take long after chemo is over and my energy level will be back up, but stamina may not be there.  I think I walked 300 feet today.....as measured....but in about 4 minutes...and ended up feeling nauseous and back hurting.  So, we will be starting out slowly.  They seemed to understand my limitations...so maybe this may work.  It's going to be hard to do while doing chemo though...but I guess the point it....not to lose any "more" stamina. 

Then, I also decided to meet once a week with a psychologist to try to deal with some of my emotional issues regarding having this cancer. 

Add to that....the chemos yet to go....and blood draws weekly for Coumadin levels that change the medication amounts weekly.....a mother in law with a serious medical problem .....a trip to Mayo for followup scans....meetings with financial people since my husband just retired....I look up at the clock and it's suddenly 11:30 at night....time for bed...and I have barely made a dent into the list of things I'd hoped to do that day....and most days the list only has one or two things on it.    I am sooooo looking forward to autumn ....and this being over with....and we can get our lives back....or at least to the point of moving on to do something "fun". 

Iowa Girl

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: Survival...Please tell us your latest milestone

Hi Julie,

Sounds like things are busy busy for you right now with everything that is going on and I hope that you will find time to make that celebration cake! Hopefully you will continue to feel good and get through rounds 5 and 6, then all fo that will have been worth it with good scans in August! My fingers are crossed for you on this! And I am looking forward to the autumn with you as well, my favourite time of the year!

Hugs,

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: Survival...Please tell us your latest milestone

Gavin, yes, I will make that celebration cake.  After 29 years of making cakes for everyone else...all the customers....it's high time that there was one for me.  smile

I LOVE autumn.....the cooler temps and lower humidity .....just that slight "crisp" in the air.  It's the best time of the year to travel too, IMO.  It can't come soon enough.

Julie T/

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: Survival...Please tell us your latest milestone

Indeed Julie, definitely time for one for you!! Biggest, tastiest cake ever I would guess! I do like a bit of cherry cake, especially at New Year, Scottish tradition and all that. Along with a wee dram or two of course!! smile

Looking forward to the Autumn too. I get fed up with it being practically day light here at 10.30 at night each night over the summer, and then once the night goes it starts getting lighty again at 3 or so in the morning! Makes sleeping a nightmare in the summer!

Hugs,

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: Survival...Please tell us your latest milestone

OK, I have to put in my 2 cents worth here.  Cherry with a bit of almond sounds good to me.  smile  As for the seasons, I prefer summer & the longer days.  smile

"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: Survival...Please tell us your latest milestone

Darla.....Cherry with a bit of almond sounds yummy right now.  My claim to fame ...at least for white cakes....was the almond flavoring I used....but cherry and almond go together wonderfully.  HOwEVER........Gavin....I'm thinking for autumn, it should be a carrot cake.....seasonal and all that.  Besides...I love carrot cake...and I don't remember the last time I made a cake for myself...and actually made a flavor that "I" wanted.  smile   They weigh a ton, but the family recipe is so moist and yummy.  If I could figure out how to get one to you before it molded, I would for sure.  Darla.....we just might be able to swing a cake some day....we really aren't that far apart.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: Survival...Please tell us your latest milestone

Wite cake with butter cream icing with almond extract...do you make gluten free????
Hugs
Lisa

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