Re: Ben's "amazing" scans...

So - here I am again posting in the good news section - something I wasn't expecting.  I feel somewhat guilty for not visiting the board more often - but have had an incredibly busy summer at work and at home.  I think of everyone out here often, but admittedly sometimes struggle with getting here as I do find it emotionally difficult. 

I know everyone is aware of the rollercoaster that CC sends us on - and every scan brings a new ride.  You will see in my history that my partner  Ben was diagnosed about one year ago (last year at this time we were at Mayo Clinic in Rochester, MN).  He successfully finished the standard gem/cis protocol in April and outside of fatigue at the end had very few side effects.

His first two scans after chemo were very positive and our local radiologist could not see anything remaining in his liver.  We sent one of the scans to both MD Anderson and Mayo Clinic for a second opinion in July - and both came back and said that the tumor in his liver was still there, but both said it had been reduced by almost 50%.  So, while we were disappointed that it wasn't "gone", the doctors were still elated that it had reduced by 50% (this shows why it's always good to get a second opinion on everything).

Also, late in July our oncologist called and said that Ben's kidney functions in a blood test showed some deterioration - so he sent us to a kidney specialist who ordered an ultrasound and additional tests.  That of course added to our anxiety level.

Luckily - I am still reporting in the good news section.  This past week we had follow-ups with both the kidney doctor and our oncologist after Ben's new scan on 8/30/11.  The Kidney doctor said the ultrasound showed no abnormailities - and his kidney function is within a fairly "normal range" he suggested no major changes to diet, etc.  The radiologist report once again reported no new growth and not really anything much of interest (we are going to send these scans again to Mayo and MD), but our Oncologist continued to be encouraged and a bit amazed at Ben's present state.

So - at this point, one year from diagnosis (with a 6-18 month prognosis), Ben's CC has been reduced by at least half and is somewhat undetectable (although we know it's still lurking), he feels absolutely normal - there are no side effects, he goes to the gym, all his hair has returned and we are now planning our fall vacation schedule.  Our Oncologist said that it would be at least 2 months until the next scan so we just continue on.

So, that's all for now, we just continue to live one day/week/month at a time - as always if anyone at anytime wants to be in touch just click my email link to the left and you will get my email and I promise to respond.


p.s.  Marion - if you read this I haven't forgotten about the conference in Miami in October - but I've forgotten the specific conference and dates.  If we aren't traveling on vacation I still plan on helping out so let me know the timing again.

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time and lost his battle on December 26, 2014  after a long stubborn war.  Don't give up!

Re: Ben's "amazing" scans...

YIPEE! Tom, so good to see your smiling face and a big hug and hello to Ben! You ahve made my day with your wonderful news. THe dynamnic duo does it again! BatTOM and RoBEN!  I am wishing for you guys to keep the good news coming!


Re: Ben's "amazing" scans...

Tom.....we just love the good news section postings.  The incredible stories convey much hope to us all.  Keep it up.  You are quite a team.
Thanks for asking about the conference in Miami.  It is the ASTRO and I am quite late in making a decision re: our attendance.  Conference is held from October 2nd to October 6th.   Would this fit your schedule?
Of course anyone else living in the Miami area and would like to become an advocate for medical conferences please, let me know. 
All my best wishes


Re: Ben's "amazing" scans...

Tom and Ben,  Love hearing your good news. Keep kicking butt! With that much shrinkage could Ben be a canditate for resection now?
Keep enjoying life!

Loving my husband from afar.

Re: Ben's "amazing" scans...

This is so wonderful Tom!! You

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

Re: Ben's "amazing" scans...

Hi Tom,

Great to hear from you again. And how good it is to see you posting about Ben once again in the good news section! Enjoy planning your vacation schedule, and I know that you both will have some good vacations! Hoping that the good news continues for you both and I am looking forward to reading more from you in this section.

My best wishes to you and Ben,


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.