Topic: Here's the Lowdown...Any Thoughts?

Hi All~~

God's blessings to you all.

My husband was diagnosed with a CC Distal Tumor in 2010.  He had a Whipple in Indianapolis.  Small tumor:  Stage 1b...clean, no invasions, negative (but very close) margins.  Due to margin being a little closer than surgeon's comfort level, my husband followed up in Goshen with radonc (5FU) and chemotherapy regimen of gemcitabine/cisplatin.  His return to the new 'normal' has been gradual but, overall, pretty great.  We've counted our blessings each step of the way.  He finally began feeling well this past July.  Running, gardening, hunting.  Still, continual GI pains:  burning, guts so active, some pain/cramping. It's intermittent.  Doesn't seem to be related to certain types of foods, when he eats, how much, etc.  He takes Creon three times a day.  Recent pain has developed while lying on back...stomach pain that sort of radiates to back.  Occasional.

He graduated to 6-month follow-up CT scans (at least he was supposed to.)  The September scan in Inday was great.  Surgeon was pleased with all.  A little continued inflammation at connection site, but otherwise good.  Then, in March, went to Goshen for blood work.  His medical onc called and said his CA 19-9 and CEA were elevated.  3X what they were in September.  Unexplained.  No physical symptoms.  He had a CT.  Nothing too remarkable...except 2 4mm spots on right lung.  Onc was not overly concerned about CT machine (very sensitive) and they may have been there all along.  Certainly not enough to explain spike in tumor marker.  He met with his peer group and they decided to do a endoscopy on Monday.  Look around the bile duct area.  They were all generally perplexed about the rapid elevation...with no physical symptoms and a clear looking CT.  Our doctor told us it's possible they won't see a thing on the scope.  They don't initiate a new treatment plan based on tumor markers alone (not that we want them to.)  So...

This is where we're at.  I, of course, tend to become gripped with fear at each possibility.  I wish it wasn't so.  I am up and down.  My husband is all about:  no need to panic....we need more information.  He's right.  God is in control.  One day at a time.  This is the new normal.  Wish I could plant myself there and let it go?!!  I have caught myself trying to really overly control other aspects of daily life...of course because this area is so outside of my control.  How do you all manage these up and down emotions?

Also, what does chronic pancreatitis look like?  I've wondered if this might be the cause of his ongoing pains?  And, even more so now that it radiates to his back and he occasionally feels flu-ish.  The oncologist does not think this ongoing gastric upset has anything to do with spiked tumor markers at this stage....would have happened some time ago.  My husband has been a 2-3 glass of wine per night person...and, if we have something stronger, he will partake.  I've asked him to cease all alcohol...he has.  I've wondered if that has contributed to pains and/or increased markers?

What are your experiences?

Thanks for reading and caring.  My best to all of you.  You are all in my prayers daily....along with my Jon.


Re: Here's the Lowdown...Any Thoughts?

Dear Laurie, I just answered you on another post of yours.


Re: Here's the Lowdown...Any Thoughts?

Laurie, This illness is very tough and the emotional side as you and your husband have already experienced is all over the map. Since my original surgery 6/2009, 3 1/2 years what has helped is one mindfully and a moment at a time. Living each moment as a gift, I acknowledge this is time I would never have had. I relish in seeing the sky in the morning when I drive to work, listening to music, and working with kids. On the tough days, I cry and reach out to those available and we laugh and cry together. I feel less alone and scared. Take time for yourself and know you are not alone accept strength from you faith. and spend time together. I occasionally drink socially have not seen a difference, not sure what the standard is for CC and alcohol. accept peace from a moment that is special to you, blessings Wisdom