1 (edited by Patty in Illinois Sun, 19 Jan 2014 10:38:44)

Topic: 2 month checkup after IMRT

Hello all!
I know I read a lot on this site but do not post nearly enough. I was diagnosed with ICC in February of 2011. Doctors said I had this dreaded cancer for appr. 3 years before I was diagnosed. After going to Mayo Clinic and not being the happiest with their thought....I turned to MD Anderson...and I have never looked back!  After Gem/CIS...and an allergic reaction after 7 months, I had 28 treatments of IMRT (Spring 2012). At my 3 month checkup after the radiation, things did not look much better....so I was placed on Irinotecan. At the next 3 month visit, my tumor (too large to remove) was necrotic and I was considered stable and was advised to just stay on the Irinotecan. I was on Irinotecan until my last dose on September 30, 2013 (all the while remaining stable and CA 19-9 reducing each time). I went for a checkup in October to MD Anderson and I had a small growth at the dome of the liver (attached to the necrotic tumor). We decided to do IMRT again (13 days of treatment-twice daily......so 26 treatments in all) and target that little booger! I just returned from MD Anderson where a PET scan showed that the new tumor now shows no FDG avidity and is RESOLVED!! There are a few scattered nodular opacities in the lungs but Dr. Javle is not too worried as he believes that it might be from the radiation. The opacities are not FDG avid at this time. My CA 19-9 is now at an all time low at 10.2!! I was told to go home, live, no chemo or radiation. Just enjoy life and go back in 3 months and hope for more stability. Tumor removal is not an option (and I have been to 4 different well known doctors who have all said the same thing) but Dr. Javle states I am doing so well, why would I want to do that. Dr. J states that I have a chronic disease and we will treat it as problems arise.
As he was leaving the visit, he said "By the way I had this guy from New Dehli, India call me and somehow knew I was going to be in India next month for a Multi Disciplinary Conference. He pleaded with me to see his mother who has been diagnosed with cholangiocarcinoma."  Dr. Javle told the man that he just didn't know if it was possible to see his mother as he had no office, no use of equipment, etc. The man pleaded and Dr. Javle finally agreed to see his mother. Dr. Javle asked the man..."By the way, how did you get my name?"  The man stated "Patty's blog!" Dr. Javle didn't quite understand until the man said "Patty, your patient from Illinois"   So...now Dr. Javle says I am known internationally in the CC community through my blog. Dr. Javle also said...."I believe people who are members of the CC Foundation are like a very close knit family....and I just said "YOU BET WE ARE!!!! God is good....all the time!!
BTW......my blog is over 94,000 hits at this time......I love knowing so many people are following my journey......from all ends of the earth!

Re: 2 month checkup after IMRT

YIPPEE, PATTY, thanks for the good news Sunday! You are a Super Hero, a Survivor and a Thriver! I LOVE the Dr. Javle Story. We know we are spreading all over the world with our CC Family but yours is an amazing story. Thanks for our update and wishing you continued success and like Dr. Javle said, ENJOY!

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: 2 month checkup after IMRT

Patty what a wonderful post and what an inspiration you are.  You go girl! smile  Go enjoy your life and it sounds like you have been all along during your cc journey and keep up with this positive awesome attitude!  Blessings.

Hope, love, strength...2013 and for the years to come, Porter.

Re: 2 month checkup after IMRT

Brilliant news Patty! Thanks so much for sharing and you know my fingers are crossed for the good news to keep on rolling for you! Enjoy indeed!!!!

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: 2 month checkup after IMRT

Patty.....pretty incredible your news; sure makes my heart jump.
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: 2 month checkup after IMRT

Patty ,  Good job!  We know word is getting out, but this is the best I have heard yet.  Keep on blogging.  Good luck to you and yes,  enjoy!  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: 2 month checkup after IMRT

Patty-  wonderful news.  Congratulations!

January

Re: 2 month checkup after IMRT

Your post sure gives us all alot of HOPE ! We all need that.
Like you said, you didn't like the first diagnosis and was not ready to give up and just look at you now !
My husband case is real similar only we are waiting for treatment or a transplant
  after really no treatment only Y-90 back in july 2012. So happy for you!!!
Brenda

9 (edited by Patty in Illinois Mon, 21 Apr 2014 09:07:18)

Re: 2 month checkup after IMRT

Another update since IMRT 5 months ago. Tumor is inactive....no lymph nodes are inflamed except for some due to chronic sinusitis. All lymph nodes are clear and my CA 19-9 went from 10.2 to 11. My CEA is .09!   This is the best report to date. Dr. Javle at MD Anderson has sent me home with no restrictions and just live life to the fullest.  Hoping it does not spread or wake up for a loooooong time!  It is mostly necrotic so lets hope for continued death!!  Enjoyed trips to St. Thomas and Hawaii (each one was 10 day trips). Biking and doing my first 5K this past weekend. Life is good!  I am the keynote speaker for our Relay For Life this year and we take a portion of that money (whether the American Cancer Society likes it or not!) and send it to the CC Foundation. Going to see a dr this week about my sinuses.....a dr other than a cancer dr...hmmmm, that's a new one in a long time. I'm 3 years, two months into this battle and have had many bumps in my journey but I feel better now than I have since getting CC. Glory to God in the highest!!!   I have now reached across the nation to people in New Zealand and Venice, Italy to CC patients.  Thaks to this site, I believe we are all drawn together and woven into an army of our own!!  Thank you all for that!!

Re: 2 month checkup after IMRT

Patty.....congratulations.  In your blog you describe in detail each and every step taken and the enormous difficulties you have encountered within the last three years.  The end result is nothing but amazing.  I so much agree with you in that our community consists of patients and caregivers not bound by political or religious believes.  This cancer affects people from around the globe and we together we stand in our fight to conquer this little understood disease.  In regards to the upcoming Relay of Life, I would like to get in touch with you.  We would want to announce it on this board as well as the website and supply you with brochures or anything else you might find helpful for this event. 

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: 2 month checkup after IMRT

Marion, our Relay is on May 3 but I would LOVE any and all info I could get my hands on. I am adding the symptoms of CC in my "talk" and anything you can get to me...Hooray!  I had a call this am I'd like to share....I had a man from Israel call me today and said he read my blog and wanted to ask me some questions.....I answered them all as honestly as possible but told him I wasn't a dr.....I also talked to his wife. So delighted my blog reaches SO many people out there. God is good ALL the time......ALL the time, God is good!

Re: 2 month checkup after IMRT

Patty...thanks for responding. I have e-mailed you to the address provided on this site.  Have you received it?
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: 2 month checkup after IMRT

Yes Marion, I received an e-mail from you. WOW....I feel honored! I e-mailed you back and will check my e-mail for updates from you. Chicago......Hmph! ;-)

Hugs,
Patty

Re: 2 month checkup after IMRT

Ha, ha...have to share this.  According to Patty's response to my e-mail.  there is more to Illinois than just the city of Chicago? 
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: 2 month checkup after IMRT

Congratulations on your wonderful news!! I'm thrilled for you!
I do relay, too, but if don't get that involved. Good luck on the speech.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: 2 month checkup after IMRT

Brilliant news Patty, well chuffed for you!!! Thanks so much for your donation to the foundation and I hope that your speech goes well, good luck with that!

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: 2 month checkup after IMRT

Patty ...what awesome news.  You are an inspiration to everyone, and especially to me.  I'm also an ICC patient, ,just starting, except I had surgery to remove half of my left liver node....now waiting to start chemo in case there are any small cells still floating about ...hoping the chemo might kill them off.  Please post more often.  We need to hear your story. 

Julie T.

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