Topic: Staying Positive

My husband, 58 was diagnosed with cholangiocarcinoma (klatskin tumor) in June 2006. We never go to Columbus Ohio but happened to be there at a meeting when he became deathly ill. He almost instantly became jaundiced and his blood pressure bottomed out. He was taken to the OSU Medical Center. If he had been home in our rural area I am sure he would have died but the fantastic staff at OSU diagnosed him and had his stent in place in no time and performed surgery within 10 days. Unfortuneately his tumor could not be resected. He has undergone 25 radiation treatments in conjunction with Xeloda and even though he has had a few setbacks is doing very well. He will be undergoing brachytherapy in a few weeks. We are also consulting with the University of Pittsburgh Liver Cancer Center to see if they feel surgery is possible now before he has the brachytherapy. I am puzzled by the fact that so many people are given chemo alone with no radiation. Everything I have read says that chemo alone is not very effective. Radiation therapy along with chemo seems to give patients the best chance. I also force my husband to eat well and drink tons of water. He is never "hungry" but I give him carrot juice, green tea, beets and as much good food as he can handle. I have just started giving him maitake mushroom extract. I feel nutrition is incredibly important and that most cancer patients probably suffer from malnutrition. I know he would live on ice cream and cookies if I let him!! He says sugar is the only thing that tastes good! He has lost 50 pounds but luckily had extra to spare so he actually is at an ideal weight. If it wasn't for this horrible disease you would say he looked great! It has been a struggle with many ups and downs already but I am grateful for this site and the knowledge that can be gained from other's experiences. Thank-you!

Re: Staying Positive

Mary,
I am sorry to hear about your husband but it sounds like you are doing a good job being strong and taking care of him.  I will definitely say some prayers for you.  I have recently found out that my dad (who just turned 65) has CC as well.  We have all been on a roller coaster for the past two months trying to find out the real story and just got confirmation from results of his laproscopic surgery on Monday.  My parents live in the Akron, Ohio area and are going to the Cleveland Clinic.  I just spoke to my mom this evening and we all think that the most difficult obstacle is the mental challenge of this disease.  It is so easy to get down in the dumps, especially for my dad. Ironically, my dad has always been the strong one and the "cheerleader" for the family. Your message of "staying positive" really spoke to me.  I know that this is not how the web site works but I am wondering if you would mind e-mailing me at rmenza@hotmail.com if you have the time.  I would like to talk to others who are going through a similar scenario (maybe even in the Ohio area or vicinity).  I just think this will be critical for my mom and dad to pull through.  By the way, my mom is also doing a great job taking care of my dad.  She is being very strong and making him her outstanding pizzas and Italian cooking.  Hang in there. 
- Regina

Re: Staying Positive

Hi, my brother is just now being diagnosed (he goes tomorrow for a procedure where they will place a needle percutaneously, place a stent and get images to see how extensive the malignancy is.)  We live in NE Ohio and he is going to the Cleveland Clinic.  I'd love to hear of any experiences with the Clinic since I want to make sure we're at the best possible place for treatment.  Dr. Vogt seems pretty good, but I can't find any statistics for him or this disease related to the Clinic.  Any advice?  Thanks,
Candy

4 (edited by marions Fri, 11 Jan 2008 12:29:31)

Re: Staying Positive

Hello Mary and Regina and Candy,
so happy for you to have found this site although, as always, sorry for the circumstances leading you here.
Regina, this site does not put out any restrictions on personal interactions in fact, it welcomes it.  As you may have noticed the e-mail address is noted below each member's name in order to facilitate personal connections.
Wishing for the best to all
Marions

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