Topic: Phase 1 completed

Hi all,

I want to give you an update regarding Lynn.

Lynn recently completed 8 cycles of Gem/Cis. We had some challenges along the way. After cycle 6 we were ready to quit. But then the onc added Emend and steroids for the last two cycles. What a huge difference it made in Lynn's ability to cope.

We had a CT scan last Friday and met with the onc today. She was very pleased with Lynn's progress. She did a wonderful job of showing us - in a side by side comparison - Lynn's CT in May (at her worst) and the one from Friday. What an incredible improvement. Our onc suggested 70% improvement from that scan. We are so very grateful.

The reality of the latest scan was also clear. The written report said something like the tumors in her liver were "too numerous to count". Including the mother ship - a giant blob sitting right in the middle.

She suggested the next phase of treatment as "maintenance" chemo. Just gemcitabene but no Cisplatin. She even consulted with the doc at Sloan whom we've used for second opinion. They both felt some maintenance chemo might help until further assessment suggests another treatment. We talked about liver directed therapy but her concerns were 1) we aren't dealing with one big tumor but tumors throughout and 2) not lose sight of the fact that the lymph nodes look good now but liver directed therapy will not keep them at bay. Valid points in our view.

So next week we start a new regimen of Gem 3 weeks - 1 week off for an undisclosed period of time.

I have to say I was close to tears in the office as Lynn saw the very different views of the 2 CT scans. It seemed every step the onc moved the image, Lynn's smile got wider. She left with a sense of purpose that I had not seen in previous doctor office visits. How great is that.

Lots more to say but too much for a single blog. So I'll end with that for now.....


To ALL moderators and other support persons who lovingly give your time and kind words to help others.....thank you. What you do each and every day to help the spirit of so many patients and caregivers is awesome. I wish I could find a better way to say thanks.


Carl

Re: Phase 1 completed

Carl - I think it sounds pretty good. Attitude is so very much a part of this so if Lynn feels so positive about it then that is half the battle. 70% sounds pretty good so does maintenance which means stability which is equally as good.

Will keep you in thoughts and prayers.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Phase 1 completed

Oh My, Carl and Lynn what a great report, well worth the wait. Someone else posted today about going off GEM/CIS and just being on GEM but can't remember who. I know it was today. Maybe Pattimelt. Sorry short memory right now. I can only imagine how you felt seeing Lynn perk up, worth any price!  Carl, you too have helped on this Board and our thanks is in posts like yours. I am so happy for you both, enjoy the news!

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: Phase 1 completed

Hi Carl,

Such great news!!!  I'm glad Lynn's sense of purpose has returned.  That means she's strong and ready to fight again.  Good luck starting the Gemcitabine next week.  Carry on!!!

Peace, Hugs & Love,
Mary

Re: Phase 1 completed

Carl, what great news! I haven't been on in a few days and this is one of the first posts I read! 70% improvement is unbelievable!! And a huge relief for Lynn. Give her a big hug!

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: Phase 1 completed

Fantastic! Thanks for the update on Lynn.
Willow

Willow

Re: Phase 1 completed

Carl....congratulations on the incredible response to the treatment.  Carl, I like to compare this cancer to that of a chronic disease hence, keeping things stable is success in it's own right.  Gemzar may very well accomplish that and allow Lynn the quality of life she deserves.  Although, numerous tumors are visible, the burden has been reduced in size.  The glass is half full, dear Carl.
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: Phase 1 completed

Dear Carl,

I am so happy you got the gift of seeing Lynn smile, and happy for Lynn that she had something to smile about. Great news about the 70% improvement. Love and 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.