Topic: Eight Years and still fighting

I joined this club in 2009, and am still here.  Marion kindly answered my inquiry regarding genome testing and asked if I would share my journey with others.
     While living in Capitola, Ca., I was diagnosed with ICC in March (Good Friday) 2009, confirmed by UCSF.  Referred to Stanford, inoperable, referred for Radiation / Chemo. Six weeks of Radiation/Xeloda, took a month off and followed with nine rounds of Gemzar.  Referred back to Stanford, still inoperable but ICC appeared in remission; followed up with monthly bloodwork and quarterly scans.
     February 2013, we moved back to Huntington Beach.  In April had a swollen right testicle, ultrasound revealed mass in left testicle, removed ,biopsy- Primary Seminoma, clean margins.  Referred to Dr. Imagawa ,UCI, for cholangiocarcinoma evaluation. in November failed the clearance for ERCP and was referred to Cardiologist for AFIB.  In December, unsuccessful ERCP-blocked bile duct. Followed up with Cardiologist, had DaVinci surgery for Mitral Valve and Maze procedure for AFIB, April 2014.
     In July 2014, had a swelling above left clavicle, ultrasound lymph node, two biopsies positive for adenocarcinoma, likely cholangio metastasis.  In August successful ERCP at UCI, three biopsies confirmed cholangio metastasis.  Referred for chemo. 
     September  started Gem/Cis, completed one round, and went to ER with right hand numbness, weakness - diagnosed with "Cluster" stroke. Restarted Warfarin and continued Chemo. Stopped Chemo in November as not effective, referred for CyberKnife due to location of lymph node, fiducial markers placed  in December. 
     February 2015, completed five sessions with CyberKnife; scan in May showed no active disease.
      January 2016 scan showed nodules in lungs, suspected cholangio metastasis.  Started Gem/Cis in February, completed six cycles; nodule size reduced, veins trashed, stopped chemo.  Bone scan in July showed no bone mets.  December 2016 scan showed increase in size and number of nodules, CA19 rising again.
     January 2017 submitted lymph node biopsies for  DNA analysis; not enough tissue for full analysis.  Submitted blood sample, no viable markers.
    Same game plan, FIGHT!!  Had a cath-port put in last week, now I am "locked and loaded", ready for my fifth chemo "tour".
    Wow, I just read all this and God is so good to me.  I am still alive to witness.  Romans 5:3-5 tells us that "suffering produces character, character produces perseverance, and perseverance produces hope"  Our hope is what keeps us going through the darkest hours.  God Bless Us All.

Re: Eight Years and still fighting

Dear John, You are a true Miracle and it is an honor to meet a warrior like you! Yes, you are blessed and we are excited  to have you join our CC family and wishing you the very best on this, your 5th chemo journey! Wishing you success on this latest fight!

Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Eight Years and still fighting

Wow John !  Your story is incredible and eight years of chemo touring is hard on more than your veins, You are true survivor and I am happy you are here sharing all you have been through. You should read Matt Rieddy's story  and how keytruda turned his chemo tour onto a rest stop. I am glad you are here to share and hopefully learn as well. Welcome to this incredible global group of people that are here for a common reason.   Pat

Senescence is a beautiful thing....

Re: Eight Years and still fighting

This is truly incredible John! Wow!  Thanks for sharing. Keep going and enjoy life.