Light at the end of the tunnel - 2+ years

So my story is I was diagnosed in July 2012 with PC.  Did fulfirinox (6 sessions) to shrink the tumor and was able to have my Whipple almost two years ago (12/7/2010).  Completed 18 sessions of gemcitabine post surgery in 9/2011.  Have lived an almost normal life (except for the food digestion thing which creon addresses) with the exception of one thing.  I had asked God for 1 year of life when diagnosed and am now coming up on about 28 months.  I know I'm lucky but many a day I'd wake up thinking "I know you're going to  pull the rug out from under me at some point -- so lets just get it over with" (telling God I was ready when he was).  Well, yesterday I had my CT scan, and all is still good.  I think I'm finally starting to feel that maybe I can be one of the lucky 5% that make it 5 years.  We will see...but I'm definitely not ready!

Just an FYI -- when I received gemcitabine post surgery I asked why not do fulfirinox again since I had such success prior to surgery.  At the time, they said they had no data.  What I heard yesterday is they are now trialing fulfirinox for adjuvant therapy.  I would definitely have chosen that over gemcitabine if it was an option ... but I can't complain.

Dave from CT

That's awesome news!!  Do you  happen to know what your tumor marker number was before you had the whipple?  My dad did 2 months of fulforinox, and is finishing radiation next week and then they will re-assess to see if he is eligible for surgery (he was considered borderline when he was diagnosed in July).  His markers keep dropping which is good, and we're just hoping everything is good for him to have the surgery. 

Well-- I'm not a doctor but on my first visit to my oncologist we had a consultation with the surgeon.  I know my tumor marker #s were high (and probably have them somewhere).  Initially they were going to do surgery in a matter of days because they though there was no vein involvment (which turned out not to be the case after additional tests).  So I guess what I'm saying is tumor marker #'s weren't part of whether I could have surgery or not.  The only factor considered was shrinkage of the tumor itself.  Not once did they say, you can have surgery because your markers are coming down.

Hope this helps.

Thanks for the response!  One more question if you don't mind!  Was yours wrapped around a vein or close to it?  My dad is considered "borderline" beacuse its near blood vessels and near one of the arteries.  I'm assuming they just hope the tumor backs away enough from those two things before they operate to get clearer margins....

Near the vein and they wanted to reduce risk.  Once it looks good, I would definitely make sure you choose a surgeon and hospital that does a lot of Whipples.

Great, thanks for all of the information,  really appreciate it!  Thankfully he's 58 and in good shape, so I'm  hoping those are huge in his favor!  He's being treated at MD Anderson and from everything I've read they are one of the leading hospitals along with Sloan Kettering and JH.  We'll find out a few days after Thanksgiving if everything has worked and if he's cleared for surgery then it will happen the beginning of January.  Fingers and toes crossed!

On Nov 09, 2012 2:10 PM DavefromCT wrote:

So my story is I was diagnosed in July 2012 with PC.  Did fulfirinox (6 sessions) to shrink the tumor and was able to have my Whipple almost two years ago (12/7/2010).  Completed 18 sessions of gemcitabine post surgery in 9/2011.  Have lived an almost normal life (except for the food digestion thing which creon addresses) with the exception of one thing.  I had asked God for 1 year of life when diagnosed and am now coming up on about 28 months.  I know I'm lucky but many a day I'd wake up thinking "I know you're going to  pull the rug out from under me at some point -- so lets just get it over with" (telling God I was ready when he was).  Well, yesterday I had my CT scan, and all is still good.  I think I'm finally starting to feel that maybe I can be one of the lucky 5% that make it 5 years.  We will see...but I'm definitely not ready!

Just an FYI -- when I received gemcitabine post surgery I asked why not do fulfirinox again since I had such success prior to surgery.  At the time, they said they had no data.  What I heard yesterday is they are now trialing fulfirinox for adjuvant therapy.  I would definitely have chosen that over gemcitabine if it was an option ... but I can't complain.

Dave from CT

Hi Dave,

I'm glad to hear your good news. 

As for the sense of impending doom thing that comes with this diagnosis and successful treatment, for some of us, it never quite goes away.  It lessens a little with time, or I should say it has for me.  I remember clearly being prepared for my "fate", and then year three rolled around and I had a really hard time because at that point I found myself thinking "what if I survive this?" It seemed harder for me to accept that possibility than death.  Well...time rolls on.  Even before diagnosis, I tried to be mindful and stay in the moment (easier to say than do),  I use the same approach today close to ten years from diagnosis and surgery.    It helps.

 Best wishes for all your todays and  tomorrows. 

Hi Dave,

I just sent you a message because I knew your scan was this month. I am sooo happy to read that you are doing well.

Keep up with the positive thoughts. Mine is next month and I am hoping to share good news with you.

Janet

I am smiling right now.. wish you could see how happy I am for you!!!!

Hi Dave,

Great news..I know it is a tough battle. I am assuming that your tumor was located at or near the head of the pancreas, and not the tail portion....As many here have vein & artery involvement with a tumor location near the tail or body of the pancreas rather the head portion and is not operable at least with clear margins, and typically has metastisized, which I assume yours hasn't.

I am clarifying as tumor location has so much to do with viable treatment options available and ultimately surival.

I know this is a horrid disease regardless! But it does make a difference on where the tumor is located.

Thanks,

Tracy

Hi Dave,

Wonderful news!! I'm about 14 months behind you and I can relate to all of your emotions.  God Bless!

Hugs,

Candy