Topic: Update on Lisa

I have not posted for quite some time, so I wanted to provide a quick update on my wife Lisa.  Lisa was diagnosed with stage four ICC in May of last year with a very large mass (15cm) and several smaller masses in both lobes of her liver.  She also had positive retroperitoneal lymph nodes.  After consultations with our local team as well as second opinions at Mayo and Sloan Kettering, we learned that she was inoperable due to the tumor size, location, and extrahepatic spread.

Her tumors all grew slightly after 6 cycles of GEM/CIS and her CA19-9 continued to rise.  Needless to say, we were very concerned at this point.  The chemotherapy was switched to folfirinox, and fortunately, Lisa had a great response after 8 cycles of this second line treatment.  Against all odds, Lisa became operable and was able to have a resection surgery (trisegmentectomy, along with several other procedures) approximately one month ago.

The surgery was successful and all visible cancer was removed; however, the surgeon was not able to achieve negative margins along the hepatic vein.  Lisa will undergo six weeks of chemo-radiation (IMRT with Xeloda) starting in a few weeks to treat the R1 margin and potentially the lymph nodes as well.  Her CA19-9 from last week was 13 after a high of 1,880.  Needless to say, we are ecstatic over such a positive result.

As with all patients on this message board, the experience this past eight months has definitely been a roller coaster.  The folfirinox treatments were very rough on Lisa and she is still experiencing significant neuropathy which we hope will end soon.  The recovery from her surgery has also been very challenging, and she certainly is not looking forward to the radiation treatments.  However, we feel very blessed overall given the initial prognosis.

We have made numerous connections through this message board and Lisa is extremely thankful to all of those who have provided support over these last several months.  I hope to become a more frequent contributor to this site and will post additional updates going forward.

-Matt

Re: Update on Lisa

Hi Matt,

What a wonderful up date.  Love to hear all that good news.  Yes, you two have been on the CC rollercoaster.  Glad to hear that with all the highs & lows, things are finally looking good and settling down.   Glad to hear she was able to have the surgery.   Hopefully Lisa will slowly recover and things will keep going well for her.   Please let us know how things are going when you can.

Thinking of you both and hoping for the best.

Love & Hugs,
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: Update on Lisa

Dear Matt & Lisa....YIPPEE! What great news, you made my day. One thing CC requires is a whole lot of patience (not to be confused with patients)! I hope you can toss those unused roller coaster tickets,,,ENOUGH! This really is such great news and Lisa is now a CC survivor and thriver. Much good luck on the Radiation and please keep us posted as to Lisa's progress. I am elated!

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: Update on Lisa

Congratulations and good luck with radiation. It is so wonderful to hear that she was able to have surgery. There is hope.

Re: Update on Lisa

Matt,
Thank you for the incredible update. We continue to pray for Lisa's healing. I understand you are a wonderful husband and caregiver!
Love
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: Update on Lisa

Hi Matt,

Thanks for sharing the good news with us all, we love hearing such news! I hope that Lisa makes a speedy recovery from her surgery and also hope that the chemo and radiation goes smoothly and works as well for her as the surgery did, my fingers are crossed and please let us know how things go with that.

My best wishes 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: Update on Lisa

Matt.....so sorry for chiming in late, but I can't express enough how incredibly joyful it is to read your posting.  Congratulations. 
Please share with Lisa that she has conquered so much already that in comparison to the past few months the radiation treatments will be much easier to tolerate.  She may just experience some tiredness. 
Tons of continued good wishes are heading your way and a big hug to the little ones at home.
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: Update on Lisa

Hi Matt,

What a wonderful uplifting post. I am so happy that Lisa was able to have surgery and you both have hope. I think the most important thing is to never give up hope, try to keep a positive attitude, and treasure every day!!

Hugs to you both,
-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.

Re: Update on Lisa

Great to hear your good news.  Thank you for sharing.
I hope Lisa's lingering side effects resolve soon and as Marion said, radiation is tiring, but compared to what she has already been through, should be a breeze.

Hugs,
-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.