• Registered: Thu, 28 Oct 2010
  • Posts: 105

Topic: 16 months and clear

I haven't been on in awhile, but I always go straight to the Good News section as it is what keeps me going.
I've just had a scan at 16 months out from surgery and it is clear.  CA-!9 is 6.  Like others who have posted recently, I did not have any post surgery chemo as the margins were clear, so I remain hopeful!  The only negative is that I've gotten an incisional hernia (I think from when I had the stomach flu sad
which eventually will have to be repaired.  I'm not looking forward to another surgery as I didn't heal so quickly from the resection and the hernia is at the spot that took 5 months to heal, but in the scheme of things.....it's okay!

It is wonderful to read the stories of those who are well...the recent 2 year success stories have really been encouraging.

I think it would be wonderful to have the success stories collected.  I'd also like to hear how people have changed their lives in order to remain healthy and cancer free!

I am also feeling so proud of my almost 12 year old daughter who wants to order a t-shirt and wear it this month for cholangiocarcinoma awareness month!

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,313

Re: 16 months and clear

CheZwright, CONGRATULATIONS, that is wonderful news!! I sincerely hope that all our Family is aware of all the good stories we have been getting! I have never read so much good news and have never seen as much HOPE as we have had lately in my 6 years on this Board. And a big hand for your Daughter doing her part for CC. LOVE IT!

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.
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,500

Re: 16 months and clear

Awesome to hear your great news. That is what we love to hear. I love that your daughter wants to make people aware of CC. You've got a great little activist there!! Take care.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 809

Re: 16 months and clear

Congratulations on your good news!! I hope to hear much more from you in the future.
Kris

Kris

Don't just have minutes in the day; have moments in time.
  • From: Indiana
  • Registered: Mon, 10 Oct 2011
  • Posts: 140

Re: 16 months and clear

Great news chezWright!  I love hearing all of the great news and success stories on the boards!  Gives me and others hope for the future!

Cindy

  • LeeAnn
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  • Registered: Mon, 30 Jan 2012
  • Posts: 94

Re: 16 months and clear

Awesome ChezWright,

I was also told no need chemo since the margins were negative.  I had my surgery last November and doing very well.  I was a little worry that I didn't have chemo but since I read your post I feel much better now. I hope I could join you on a long long clean journey.

LeeAnn

  • Registered: Thu, 28 Oct 2010
  • Posts: 105

Re: 16 months and clear

Leann,
I was (and still am!) worried, too, that I had no chemo.  There was a clinical trial being done that I was told about (by NIH), but neither my surgeon at Johns Hopkins nor my primary care physician pushed for me to join the study. They felt that risks of the chemo at such high doses outweighed the uncertainty of any benefits.    We all have to make the best choices for us personally when faced with the unknown!
I'm still struggling with the anxiety of each scan (does it ever go away?) and the overanalyzing of each twinge in the abdomen!  Trying to get on with making the most of each day!
I do wake up in amazement, though, that I'm here today when I wasn't so sure 18 months ago!

Hope to hear how your journey goes and that it's a smooth one.
Kathy

  • Registered: Thu, 28 Oct 2010
  • Posts: 105

Re: 16 months and clear

Whoops...sorry about what I did to  your name!  LeeAnn!

  • Lainy
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Re: 16 months and clear

LeeAnn and Kathy, we forge ahead and can't look at would have should have. As you probably know from my posts Teddy had his Whipple 7 years ago and 4 ONCS and RADMEN said NO to chemo/radiation as he had clean margins. Even though the CC did return 3 years later (He had Cyber Knife then) we never looked back. Everyone is different it seems with this CC, look at our Bob now in his 15th year! Unfortunately the only thing we really know for sure about CC is that we know not much. So, we go along with HOPE and ATTITUDE and handle it the best we can and I would say you gals are doing great!  The scanxiety will be there and believe me I do understand as I had my own rare Cancer 2 years ago. I have scans every 6 months and am watched and that is about all one can do with a rare cancer. I love your attitude that you are living each day in amazement.That is the right ticket as it would be really sad to waste any time any of us have for any reason. Like I mentioned yesterday, have you noticed all the good stories lately so full of hope? Pleasant journeys! Big hugs to you both.

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.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
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Re: 16 months and clear

Hi Kathy,

Thanks for sharing this great news, congratulations! Looking forward to reading more of your posts in this section.

Best wishes,

Gavin

  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 737

Re: 16 months and clear

Awesome news LeeAnn!  Keep the good news coming!
-Randi-

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

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • From: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 449

Re: 16 months and clear

CheZWright
This is wonderful news..congrats. I saw my surgeon today and have also developed a hernia at the incision site. I'm not happy about it but so glad it's not another tumor. So I am thankful for a hernia...funny what things we begin to appreciate...hehehe.   Lisa

Everyday is a gift

lisacraine's Website

  • From: Sarasota, FL
  • Registered: Wed, 28 Dec 2011
  • Posts: 185

Re: 16 months and clear

chezWright,
Fantastic news! I'm also one who had clean margins, but I am doing the adjuvant chemo as a 'precaution'. Never know what may happen, I chose myself to do the chemo route. And I can say AMEN to the overanalyzing of each and every tweak in the abdomen, I do that every time I feel something different. My current rationalization is that I'm weightlifting again, so I'm stressing the abdomen 'muscles' that were cut up pretty good during the surgery so that's the cause of the 'twinges'. No real pain though but it is annoying that you have that 'what was that' feeling every time you notice something different. My wife tells me I'm crazy, maybe I am!!

Derin

Husband to Eileen, Dad to Hunter (14) and Sydney (12)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...
  • From: Eastern Shore of Maryland
  • Registered: Fri, 15 Oct 2010
  • Posts: 380

Re: 16 months and clear

Kathy, great to hear 'clean'.  Hernias are a mess.  I ended up with three  big  incision hernias.  Be careful about the fix.  Make sure the surgeon has done lots of big abdominal hernias.  In my case, after consultation  with my trusted cardiologist, I decided to not do anything, which was the cardiologist's preference.  She has a lot of heart transplant patients and told me most end up with large central chest hernias.  Those that get them fixed surgically, usually see them fail within two years ... with a worse result than doing nothing at all provided.

Keep those clean scans coming!!!

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm