Topic: It's now 2 years ago today,

Just read post I made one year ago- the first anniversary of my husband's dire diagnosis and prognosis. He went for his 2 year check-up on Monday. They did bloodwork and because his bilirubin was slightly elevated went ahead and did an MRI too. The MRI results were stable- everything continues to be clear. He has strictures in his duct where the tumor was and where he received massive amounts of radiation. His onclogist thought maybe scar tissue was closing up the duct but MRI shows no evidence of that. He's had a bit of an infection or virus the past week ( a slight fever and fatigue) and he has not followed a very strict non-dairy diet ( lots of ice cream) lately and I think he simply blocked up a little like he did when he had the stent in place. When he had the stent he would get in trouble eating a lot of cheese and milk fat so I'm assuming he will have to continue to be careful because of the strictures in his duct. He feels great right now and his color looks good so I think he's unclogged!! He looks pretty good for a "dead" guy which is what the original prognosis was, 6 months to 2 years!! Good luck to all and enjoy your summer!!! Best wishes, Mary

Re: It's now 2 years ago today,

When he had his original diagnosis, how bad was it?  Had his cancer spread at all?  I'm just curious on how hopeful I should be.

Re: It's now 2 years ago today,

He was diagnosed with a Klatskin tumor. They tried to resect but were unsuccessful. They did 5 weeks of IMRT radiation with Xeloda followed by brachytherapy. He has not had any additional treatment since Nov. '06, just bloodwork and MRI every 3 months. He did have a stent in place until this past Feb. I personally was more concerned about the stent and problems with infections even during his treatment course. He had a lot of different drains in place and went through a lot of problems but has been great since- a real miracle! Even his Docs think so and tell other patients about him even though as they say, "They're not declaring victory yet!" Time will tell but so far so good. You should always remain hopeful! My husband has a great attitude- he just leaves all the worry to me!! I give him a lot of supplements which you can check out on my other posts. I attribute a lot of his good health to those.Try every thing you can and get 2nd or 3rd opinons.He had no mets and continues to have no sign of any. I'm hoping they nuked the tumor before it could jump anywhere else.. Best wishes and good luck with your treatments, Mary

Re: It's now 2 years ago today,

Congrats to you and your husband, Mary! May the great news continue for you - it's always uplifting to hear about those who beat the odds.
-Joyce

Re: It's now 2 years ago today,

Mary,
May the good times roll on.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: It's now 2 years ago today,

Mary,
  I love to read these posts with happy news - very encouraging. So glad for you.

Joyce

Re: It's now 2 years ago today,

I don't want to bring anyone down, but I was diagnosed March of 2006.  I had a liver resection with no additional treatment as the tumor was very small.  I have been having MRI's and my labwork regularly since and was told all is fine.  3 weeks ago I had surgery to repair an incisional hernia from my liver resection.  The surgeon found a mass and I was confident it would be nothing as my May 1st tests were all fine.  WRONG.....it is a reoccurrence of my cholangiocarcinoma in the abdominal wall.  Has anyone else had this experience where the tests were wrong??  I am leaving for Mayo Clinic where I had my first surgery for tests and recommendation of where to go from here.

Re: It's now 2 years ago today,

congratulations, Mary! Donna, I was advised that for prudent purpose, patients should take chemo/radio right after the surgery, even it is completely clear after the surgery (the cancer cells were removed, and it has not yet affected the lymph nodes). So, for your case, is any treatment suggested by the Doctor? i think they may apply radiotherapy.

Re: It's now 2 years ago today,

Congratulations on your "anniversary". What wonderful news. I believe good news is always needed and received warmly around here! Teddy has gone 3 years now since his Whipple so what we are going through now we term a bump in the road. We will patch it, watch it and keep driving, although he prefers driving at the golf course! Yeah, keep up the good news!!

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.

10 (edited by marions Fri, 01 Aug 2008 20:34:32)

Re: It's now 2 years ago today,

Donna.....thanks for joining us.  Studding in the abdominal wall has been reported by many.  When did you have your latest scans before, the Hernia operation?  Possibly, at that time the tumors were too small to be detected through imaging.  I have been told, seeing a 1 cm focal nodule may or. may not be important since the images generally are 0.5-1cm thick meaning it could easily be missed on past or future studies.  Therefore, we had been told by our physicians that the true extent of the disease can be determined only, during surgery.  I am puzzled though. of your surgeon reporting a "mass" in the abdomen.  And, by the way, you are not bringing anyone down.  Can't wait to hear from you after the consult with the Mayo clinic.
Sending tons of good wishes your way.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: It's now 2 years ago today,

Donna, have you received any news, or kind of treatment? I have been advised that in this case, radiotherapy is the best way to apply. BTW, could you pls advise exactly where the "mass" appear??

Re: It's now 2 years ago today,

Mary,
   I hope things continue to go well for your husband. Thanks for reading my blog and sending the encouraging comment when he was very ill. We still would do it again - Dr. Gamblin and his team are  wonderful - but - as you know - the hospital has its' problems - probably all hospitals do today, with the nursing shortage, etc.

Joyce

Re: It's now 2 years ago today,

Hi Joyce --

Just wanted to say I've kept up with yours and Butch's progress on your blog. Certainly its been an awful and slow progress but there is progress, and I am so glad for your both!

Sounds like if anyone wants to to to UPMC you're better off packing a lunch -- they didn't seem to want to feed poor Butch very much!

Sending all good thoughts!

Irene

Re: It's now 2 years ago today,

Thanks Irene - the food has really been a problem, hasn't it? I have to say - the blog has been my therapy throughout this - I can blow off steam, voice my opinion, and just bring it down a notch in general.

Joyce