This is my second Christmas.  I'm not decorating.  It's just me.  Its a lot of work.  I can't bring myself to look at our Christmas boxes of memories and treasures.  This is the one bridge I've yet to cross....other than not taking off my ring.

I just came back and read my post.  It's been a year and a half now.  You know what I didn't like when it pushed past the one year mark?  I could no longer say, "Last year we...."  It gets further away from me.  No new pictures to look at.  I miss him still, everyday.  The house is overwhelming.  I still can't make decisions about the future.  I'm torn and sometimes feel paralyzed.  I cry at the cemetery, or when I walk my dog.  I'm used to being alone.  I'm forging a life, reinventing myself.  It's okay...but I feel so many decisions loom ahead.  I still wear my wedding ring.  So, is this it now?  I go through my last 20 years remembering him, alone, still feeling married and trying to keep myself busy?  Yes, I do keep busy.  Winter is brutal...long, dark. But, I'm okay,.  I'm doing okay.  I'm bored, though, and in a rut of a routine and talk my friends' ears off because I rarely have adult conversations.  It's hard to feel whole.  I don't.  People say I will.  I don't know that I believe that.  many many people posted on my sister in law's facebook page...in response to her sweet statement about thinking of her brother that day and the things she'd like to tell him.  90% of them said:  go ahead, he hears every thing, he's right there smiling and listening.  I confess...I got a little angry.  There's no evidence to suggest he's here, hearing me.  He's in my heart, yes...fills my mind.  But, no, those words sounded hollow and unknowing.  They meant well, I know.  So...I keep moving forward.  Seeing kids.  Working hard.  Painting.  Just living forward...

I miss him.  We were married just five years.  We were happy; we found each other; so much life ahead of us.  I was a handful.  He rolled with me beautifully.  He was brilliant, committed, steadfast, strong, loving, tender.  I've done all I'm supposed to do:  grief group, grief counsel, back to work, journal.  I laugh, there are okay moments.  But he's always in the back of my mind...mingling there with the laughter.  When his loss hits me again and again, it's like a tidal wave.  It washes over everything and leaves me raw.  I'm better, yes.  But, nothing is the same, nothing feels right.  The future is not appealing.  Close friends?  Just a few, they live out of state.  My daughter says to move back to michigan near her.  Leaving our house would feel like leaving him, like closing a chapter as if it didn't happen.  The house is a lot to keep up; we heat by wood., very natural.  I still want him to come home; isn't that silly.  Almost a year.  I can't look at the future without him in it...or, I don't want to.  When I do?  It feels painful.  I'm not sure how we get through this grief.  I suspect it's by doing what I'm doing.  I smile, I love on the at risk kids I work with, I adore my grand babies....but the emptiness is right.  here.  often.  Missing my Love....

One month.  Not one Monty.  My goodness.

Hi all--

After a Whipple (2011), chemoradiation, gem/cis regimen, metastatic recurrence to lungs and questionable (probable) on liver, another regimen of oxaliplatin, ca19-9 rising from 300 1 year ago to 3140 on April 8th, we were told my husband is in line for palliative care only, no cure, look for clinical trials.  We found Dr. Raymond Chang in NYC who, I think, is quite a man.  He has many, many metastatic success stories. We also went to Germany for New Castle and dendritic cells.  Jon's cellular breakdown shows high concentration of NK cells, which makes for good prognosis. Suppressor cells are out of whack, big time.  That's our target.  In one Monty's time, on off label treatments, his marker dropped to 1688. Both doctors do not feel this is just a fluctuation; they think the treatments are at work.  It's expensive.  Jon is extremely fatigued, no appetite, some pain issues. But we feel very hopeful right now.  Doctors have told us to feel optimistic.  Our doc in Germany showed us a lung ca case...stage iv with poor prognosis of about 4 weeks.  After just 8 weeks of dendritic/treatments, he is cancer free.  Dr. Chang also shared similar situations.  They have presented at conferences.  All medicines are backed with published evidence-based research. Jon also takes low dose chemo.  Anxious for CT in 8 weeks.  For those ready to break from conventional chemo that really doesn't cure, and can afford costly treatment, I wholeheartedly recommend you take a look.  "Beyond the Magic Bullet" is a great starting point. Research dendritic cells. I just want to encourage you; wish we had pursued these treatments sooner.

Thanks for checking on this!  His previous treatment involved 5-FU and radiation.  The lesion is small.  I need to double-check the size.

I appreciate you asking around!

Laurie

Hi all --

My husband is Stage IV...mets to lungs. He also has a lesion near porta hepatis on liver.  If he has ad previous radiation therapy...  Could he potentially still have theraspheres? I can't find that answer! We leave for dendritic cell therapy on April 30th. And are being treated by Dr. Chang now in NYC. COOL things happening with that. Have to go....more later. But, if you know about the spheres....pass it on? Thanks!

8

(3 replies, posted in Hospitals)

My husband had a distal bile duct tumor and whipple surgery in September, 2011.  He followed that with radiation and 5FU; and followed that with gem/cis.  Now?  It  there are very very very small multiple nodules in the lungs.  Just got back from MD Anderson; we were very disappointed.  After bungling a CT scan and being very bluntly told:  there's no cure, we can only try to buy more time, without having even SEEN any scans at that point.  Now what?  They advise back on gem/cis.  My husband doesn't want to go the chemo route...Anderson told him those lung cells were probably there at the get-go....so, why go back on a chemo regimen that didn't work in the 1st place?

Help!  Any alternative treatment ideas?  Anything?

Dear Jim~

First of all, thank you for your post.  My husband and I are sitting in a hotel room in Houston (MD Anderson.)  We learned nothing different here than we had at home:  there is new mets to his lungs and the only treatment option right now is gem/cis.  He gave us a death sentence yesterday....no cure, chemo will work for awhile.  Neither of us are excited about repeating the same chemo that doesn't seem to have worked in the first place, knowing it's only going to be effective for a short time.  In addition, our practices and medical beliefs tend to be on the nutritional side of things (well, that is, after our faith in our God) and so we've been looking into alternative nutritional methods.  We spent the day yesterday researching all of them:  Gerson, Gonzales, Optimum Health Institute, Budwig, and a few more.  We prayed about it. We feel inert....like we're all dressed up with no place to go....ready to begin but not sure which group to throw ourselves into.  We do need a program, guidance...so, hopefully today, before we go home, we will have a wise decision in place.  If anyone else has experiences to share....please do.  We're not interested in bashing alternative therapy methods now...we're interested in hope.  Thank you all.....blessings on your journey...

10

(7 replies, posted in Introductions!)

Thanks!  I will ask these questions and make some requests.

And.........so.......just to clarify and confirm....your recommendation for CCA is Mayo?  I will pursue that one.....

Again....thank you!  So much!

Interesting thread........my husband is post-whipple.  I will mention Xeloda t his oncologist....

Laurie

12

(7 replies, posted in Introductions!)

Thanks to all for your encouragement and input!

PCL:  Sorry; I wasn't very concise.  The following fills in the blanks:

1st diagnosis - September, 2011

Whipple - September, 2011 (result was distal tumor, no invasion, small.  The only issue was the cells were a little closer to margin than he would have liked.)

Radiation - December, 2011 w/5FU

Chemo - mid-January, 2012 - May, 2012   w/gemcitabine and cisplatin

Multiple CT scans - all clear (every 3 months from December, 2011)
Continued abdominal discomfort - all along (inflammation noted on CT scans, but nothing alarming, just part of the recovery)

Recent routine follow-up CT scan in September, 2012 - all clear
  CT scans always accompanied by blood work - no issues in September,  2012


Goshen - Blood work - mid-December, 2012 - elevated CA 19-9 and CEA (noted that CA 19-9 was tripled from September, 2012)

Goshen - Follow-up CT scan as a result of elevated CA 19-9 - mid-December, 2012) - nothing remarkable to explain elevated markers. 2 4mm spots on Rt. lung....oncologist did not express concern over these and remarked they are not related to elevated markers.

Goshen - Tumor Board Meeting this past week - group recommended Endoscopy to check bile duct area

Goshen - Endoscopy scheduled - Monday morning (12/31/12)


His surgery was at Indiana Univ. hospital by the hepatobiliary specialist, Dr. Pitt.  Dr. Pitt was a long-time surgeon at Johns Hopkins and is chairman of the medical school at IUPUI.  He has contributed multiple research articles on hepatobiliary cancers and surgery in various journals.  We have a high level of confidence in him.  Unfortunately, he has retired from the surgical side of things; his fellow has stepped into his shoes.  We also have confidence in him.  Johns Hopkins and Duke background.  They have both expressed a lot of confidence in a good long-term prognosis.  They think he will do really well. 

But......a 2nd opinion has been on my mind now that this elevation has occurred.  I'm glad to hear that confirmation from you.  Perhaps we see what the endoscopy shows and then pursue another opinion?

His medical oncologist was referred to us by the Indianapolis medical oncologist.  He practiced in South Bend and recently moved back to the cancer program at IU Health - Goshen.  He has been a great advocate.

So.......2nd opinion is in order?  Mayo?  Does anyone have experience with Johns Hopkins?  It's hard to determine where to go....but I am very appreciative of your experiences at Mayo.  Thanks!!!

I'm still wondering about undiagnosed chronic pancreatitis.  Course, I feel like I have a medical degree after all of this!  smile  Anyway...I'm going to bring this up as well.

Thanks so so so much for your feedback.  I REALLY appreciate your comments.  Feels like light.

Laurie

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 those...new 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.

Blessings,
Laurie

14

(7 replies, posted in Introductions!)

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 those...new 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. 

Blessings,
Laurie