• Registered: Fri, 29 Sep 2006
  • Posts: 466

Topic: Once again , so far so good...

My husband had what amounts to his one year MRI and evaluation today. Dr Saab at OSU  was so happy with his progress he kept shaking his hand every time he walked by, at least 4 or 5 times. The nurse practioner just looked at him and said "Wow, you look better than I do!"I don't know who or what to credit for what I feel is a miracle. I almost feel guilty writing about our good fortune up to this point when so many others have lost their battle. My heart literally aches for those that have passed and their loved ones .I know it could be us next and I can't imagine going through the loss and grief that I know I would never get over. I couldn't imagine it a year ago when the first Dr. sat on the side of the bed and basically said there was no hope. Or when my husband told me one of the radiology technicians told him that if it was in the ducts to go home and make your funeral arrangements! Could anyone be that cruel? My husband had been medicated so he wasn't totally sure someone actually said that- but isn't that what the statistics say? Unfortunately yes and as I have been active on this site the statistics have been proven to be true. In January the Dr. we saw at the UPMC told my husband 99% of the people who get CC die from it. My husband's response-" I'll just have to be that 1 %. That means around 400 people a year that are diagnosed survive." What an attitude! He's my hero, my best friend and my complete partner in all things including our business and I can't imagine life without him. I would literally prefer that it be me instead of him that has this horrible disease because I don't want to live without him. I feel for everyone that is going through the grieving process because I CAN imagine exactly what you are feeling. It was touch and go several times the past year but we made it and I'm going to try to quit worrying so much and just be thankful for our continued blessings! I'm thankful to OSU and the Docs there, for all the prayers and the internet so that I could look up all the information on supplements and diet that I'm sure have really helped! Take care everyone and best wishes to you all.  Mary

  • Registered: Sat, 09 Dec 2006
  • Posts: 514

Re: Once again , so far so good...

That's wonderful to hear your husband is doing so well!!! We all need to hear good news and know that the odds CAN be beaten!!! May you both continue to have great results and long lives together - you are an inspiration. - Joyce

  • JeffG
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  • From: Kansas
  • Registered: Mon, 16 Oct 2006
  • Posts: 1,242

Re: Once again , so far so good...

Mary.......As I said in the reseach section Grrrrrrreat! on your Husband's good news.  I was trying to imitate Tony the Tiger commercial.  I better not give up my day job thats for sure.  My wife over heard me from the other room and asked if I was ok? Ha! Jeff G.

Take it to the Limit,One More Time! (Eagles)

4 Reply by marions (edited by marions Thu, 14 Jun 2007 17:14:32)

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Once again , so far so good...

Dear Mary,

Thank you for sharing this wonderful news with us. 

We, the ones having lost a loved one to this disease, more then anyone, are hoping and wishing for no one else to be joining us in the Remembrance section of this forum.

We will always be together in this fight against CC.

Yes, our pain is unbearable however, sharing the joy with those of you who are responding successfully to treatments whatever they may be, eases  our pain immensely. 

Thank you for warming my heart,

MarionS

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
  • Registered: Thu, 12 Apr 2007
  • Posts: 36

Re: Once again , so far so good...

Excellent to hear that your husband is doing fantastic!  I wish him continued success.  I don't mean to be of bother but could you let me know again the supplements that your husband is taking and exercises / what he does, as hopefully we could really use some good advice.

Thanks and all the best!

  • Registered: Fri, 29 Sep 2006
  • Posts: 466

Re: Once again , so far so good...

Dear JLIU,
   My husband as been taking Maitake Mushroom D Fraction capsules( the recommened dosage), Fish Oil capsules, Beet Root extract( this specifically mentions being for bile duct health), Milk Thistle( I believe this has really helped his liver regenerate after being zapped with alot of radiation!), and a daily multivitamin.He drinks 16 oz of fresh carrot juice every day and lots of spinach, broccoli, greens and fresh fruits. You can look up these supplemnts on the internet and see what you think. I believe that we were just extemely fortunate to catch his tumor in time before it spread. He has a klatskin and it had blocked off both ducts to the point of him collapsing with what we thought was a heart attack just a few blocks from OSU Medical Center in Columbus Ohio.The weird thing was he turned yellow almost instantly. They did a super job of diagnosing him and getting stents in to relieve the jaundice. He had unsuccessful resection surgery, it was too advanced into the right duct to be removed so they looked around, removed his gallbladder and moved on to the next treatment which was a fairly high dose of Xeloda along with 5 weeks of IMRT Radiation and brachytherapy. After all of this they were no longer able to see signs of the tumor( we even went to Pittsburgh to get a scan there) and they said the same thing. The tumor is gone and the area just shows dead cancer (or scar tissue). They are pretty amazed as this does not happen very often as we all know by reading this site and others. I really am an advocate for radiation first along with chemo rather than as a last resort. I know the radiation caused some damage but I believe the supplements and diet have helped repair the damage. I concentrated on things that were good for the liver rather than just being anti-cancer. Optimum liver health is the most important no matter what treatment regiment you are on. As far as exercise we are just working outside alot now. He's going to start doing some biking and he did lift weights and work out about 45 min a day during the winter. He had lost 70 lbs during the fall and is back to a very healthy weight now and feels great.
   I am just thankful that he was treated where he was because it is the only facility that I know of that uses radiation the way they do. He would have received an entirely different treatment in Cleveland or Pittsburgh and if he had been home when he became ill that is most likely where he would have gone.Keep doing research and read as much as you can so you can keep on top of things. I learned that no matter how good the Docs are and the hospital you still have to make sure things are getting done like they should be and ask lots of questions sometimes to the point of being obnoxious.Things get overlooked otherwise. Take care and best wishes. Thanks to all above. We appreciate everyones continued prayers and support and are sending them as well. Mary

  • From: Kalmar, Sweden
  • Registered: Sun, 20 May 2007
  • Posts: 1,951

Re: Once again , so far so good...

Thanks. I just had a terrible meeting with my ocologist (now nicknamed "The Hope Snatcher") and I just needed some news like yours. Someone should really tell you in the beginning that the mental struggle is as difficult as the the physical. Good luck on keeping this little dickens of a disease in its place.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope
  • Registered: Thu, 12 Apr 2007
  • Posts: 36

Re: Once again , so far so good...

Dear Marylloyd,

Many thanks for detailing out the info.  I will be sure to pass it onto my father.  We are juicing him apples / lemons and I have heard carrots are very good so will start with that as well.  Appreciate you taking time, and also wish you / your husband all the best and continued success.

Best Wishes,

Jliu