Topic: New Member and Post

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

Re: New Member and Post

Dear Laurie and Jon welcome to our remarkable family but sorry you had to join. My Teddy had a Whipple August of 2005. It is hard to digest certain foods after that. About 2 years later he asked the ONC if he could have a glass of wine with dinner and the ONC said 1 Glass. He only wanted to know as I never saw him drink any or he would pour a glass and just take  a few sips. Perhaps Jon needs something different to help control the "burning" in his stomach. Red wine  has a lot of acid. I am so sorry about what Jon is going through now. My only suggestion would be another opinion. Sometimes a set of new eyes on something has  good results. The way to get through this, Laurie, is to be very strong. Teddy used to say to me all the time, BE STRONG! Yep, this disease is not for the weak. You will see that by reading up on our fabulous family. I love your husband's attitude. One more thing, make sure if you get another opinion that the ONC/Hospital has treated many other CC patients before. I will let others weigh in here now and let's see what they have to say. Best of luck and know that you have come to the best place!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by PCL1029 Sat, 29 Dec 2012 13:36:30)

Re: New Member and Post

Hi, Laurie,

it is just my personal opinion that you should seek 2nd opinion from another institution like Mayo clinic , to see a liver specialist  like Dr.Gores or his peers first to see what they say about your husband's CCA current disease assessment.  Dr. Chapman and his peers are also good at CCA experiences at Washington Univ. at St. Louise . I recommend Mayo clinic just because of my personal experience with them.

it is also , if you are interest, read the links below to understand a few of us ( members on this board) who do research on this disease's current thinking about CCA,which may give you a glimpse of what is in our minds at the stage of cancer which close to your husband's current  situation , I think.
Your description of the timeline about your husband's CCA was not clear to me.
What is the date of 1st diagnosis ,what month of 2010 and what is the date of the last CT scan and the Date of the last CEA and CA19-9 level drawn?

If what you said is correct, distal CCA is the most treatable and the  least of  recurrence CCA among intrahepatic ,hilar and middle common bile duct CCA.
One more note if I were him, I will not drink any alcohol from now on due  to alcohol may increase the burden of the liver.

http://www.cholangiocarcinoma.org/punbb … 176#p65176

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member and Post

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

Re: New Member and Post

Hi,
Have him try to have a PET scan? it can provide additional info for up-to-date condition of the CCA in the functional side in addition to  the physiological presentation of the CCA. Endoscopy may not review anything at this point but a MRCP may be a better choice if they have the expertise of doing so.

John Hopkins is  the #1 hospital in the States for 25 years until this year;in my mind  it is an all around excellent hospital for initial diagnosis and subsequent specialized treatments in one place.
However John Hopkins is not the hospital that is specialized in CCA. but if you like John Hopkins, I will go for it; their multidisciplinary team approach in treating disease is a bench mark of good medical practice.
I do not know much about pancreatitis experience.But I know antibiotics like Levaquin or Cipro helps as well as decrease fat consumption and alcohol drinking.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member and Post

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!

7 (edited by PCL1029 Sat, 29 Dec 2012 14:22:53)

Re: New Member and Post

Hi,
Yes, but it is solely based on my experience. You can start asking Dr. Gores  himself ,(he is one of the top doctor in the research of liver and related diseases,) for consultation first and if needed , he will refer you to appropriated departments for consultation.
Mayo likes to do MRCP so, if you decide to go there, you don't need to have MRCP at IU in order to save some money.
BTW,where do you live?
the link below is related to Pet and CT scan understanding.

http://www.cholangiocarcinoma.org/punbb … 365#p47365

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member and Post

Hi! Wow, I get your anxiety and I totally recommend a second opinion because knowledge is power with this disease. I got like, four second opinions at the beginning of my diagnosis and would never hesitiate to get another at any stage of this journey. I have been treated at Johns Hopkins but am moving to Columbia/Presbyterian in NYC. I would say there is an excellent surgeon at Hopkins, Dr. Choti, but that CC is not the absolute specialty there and you should seek out the very best, the most knowledgeable, but also the docs whose passions match your disease. For example, Dr. Choti is really interested in/publishes on laparoscopic surgical technique and technology so that's his thing. I realized my oncologist's speciality is phase I and II drug trials - that's why she's not gung-ho on radiation and why I, who can't be in a trial since I have too wierd a cancer, am not all that interesting to her. And so it goes. If I were you I would find someone for a second opinion who is absolutely in love with the pancreas. Welcome to the site and best luck to you both!