I'm New To this Whole Experience

avvjr
avvjr Member Posts: 2
edited March 2014 in Esophageal Cancer #1
Hello, everyone.

I'm 66 years old. Live with my spouse, Edie, in Smithfield, NC. Two of our children and two grandchildren live nearby. Our other child and her family, including two more grandchildren, live in Ashville, NC. All have been very supportive thus far on this journey. I believe totally in the power of prayer and it seems like, according to my emails, I have thousands of warriors out there praying for me.

In hindsight I recognize the years of reflux and that hacking, gagging cough as symptoms I or someone ought to have investigated further. Oh well...

I have esophageal adenocarcenoma, diagnosed 02/15/2010. Also Barretts Esophagus. At least so far, it has manifested as a fairly large malignant tumor on the inside of my esophagus, lower third, and a malignant lymph node ("baseball size") near the top of the esophagus and pressing against my larynx. Apparently that pressing is against the nerve that controls my left vocal chord, thereby paralyzing that vocal chord and rendering my voice hoarse. About the middle of December, when I lost my voice, was when we first realized something was amiss.

A series of referrals to ENT, GI docs and the attendant endoscopies, biopsies, colonoscopies, CTs of my neck, chest, pelvis and abdomen, PET scan, another endoscopy (this time with ultrasound), more biopsies, and finally the bronchoscopy yesterday have pinned down what I have and its extent. And have led me to the Duke University Cancer Center and the team of surgeons and medical and radiation oncologists who are attending to my cancer. My team consists of Dr D'Amico, surgeon, Dr Safar, medical oncologist, and Dr Czito, radiation oncologist.

I have a radiation therapy simulation scheduled for tomorrow and, supposedly, my chemo and radiation starts on Tuesday, 03/30/2010. Apparently I have been included, as of yesterday, in a clinical trial at Duke that consists of a combination of Panitumumab, Oxaliplatin and Capecitabine.

I am to receive 28 radiation hits over some 36 calendar days. Some of the chemo will be oral every radiation day, some will be IV every week or every two weeks.

Ooops! Just got a call from Duke. Based on the comments of a friend that went through much of this, I have asked for a feeding tube to be installed(?) pro-actively. I do think I have a high threshhold for pain and a good appetite. But I DO NOT want to try being be a hero through all of this. I was a little put off by the idea of a feeding tube because I thought it was all or nothing. But Dr Zagar, another of the radiation oncologists, assured me that it does not HAVE to be used at all but that it is there when, and if, needed. Thanks for that advice, Rick!

Tomorrow I shall ask the questions re: X-Ray dosage and attack pattern. However I think I know that the plan is the plan and I won't have any control over that. But forewarned is forearmed. I do have a list (complete?) of side effects of the radiation, including myelitis and radiation pneumonitis, as well as each of the three chemicals.

I was up to around 248 lbs around Thanksgiving and decided that was enough and adjusted my diet. Since then I have lost about 25 lbs. I was thinking it was because I was being so good. Now I believe I know it is the cancer. So now I am stepping up the calories and protein a bit. I have already found that being a cancer patient does have certain perks. I can eat virtually whatever and whenever I want. I can sleep whenever I want. Not bad.

I have been reading through the posts of all you veterans for most of today. That notwithstanding I welcome any discussion, advice, suggestions that any of you all may have for me.

Thanks for the help.

Vic Voorhees

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    Welcome to our CSN family
    Hi Vic,
    Sorry to hear your dx, but it is all too familiar here on this board. I was a caregiver for my dad, who recently passed away 3/9/10. He was dx with ec 11/08, not a candidate for surgery, had oral chemo xeloda and radiation. Did great, went into remission. Fast forward to December 09, primary cancer methastized to his liver. Long, hard 3 month battle. He could not fight any longer. Made it to his 71 birthday, and passed away peacefully on 3/9.

    Sounds to me that you are on the right track with everything. Duke is an excellent hospital and cancer center. You will meet a girl named Kim here, her dad went to Duke, and is doing great. Keep up the positive attitude, keep the faith, and keep in touch. Best of luck to you!
    Tina
  • K_ann1015
    K_ann1015 Member Posts: 500
    my dad went to Duke also...
    Hi Vic'
    My dad went to Duke too--he lives in Swansboro, NC near Camp Lejeune. I "friended" you so you can email when you want---there is so much to share. My parents were really happy with Duke. Everyone was so helpful---even though they live far away (3 1/2 hours) and have to stay in hotel every time they go---they actually feel at home there.

    I was worried at first, because my dad had the younger docs---Dr D'amico is ahead of the program I believe--so of course i thought we should have him! My dad had Dr. Berry for surgery--but had to go through a long treatment prior to that with radiation (Dr. Yoo) and chemo (Dr HOPE Uronis). They seemed so young but very compassionate and seemingly knowledgeable. They also consulted with their senior staff when there wer any questions...

    The thing I wanted to tell you is that he also went thru a clinical trial that also included Panitumumab, Oxaliplatin & Xeoloda. There are some side effects I can share with you. My dad was stage 3, 71 years old but totally healthy before this---he is doing well so far---but small man before--155 max at 5'4"---got down to 125--trying to gain weight now.

    How far is Smithfield, NC form Durham? My parents stayed in Quality INN.

    I have more to share---but will talk more later---keep logging into this site--it makes you as the aptient---not feel so alone... many have been thru what you are going through!
    Kim
  • unclaw2002
    unclaw2002 Member Posts: 599
    Hi Vic,
    Welcome, this is a

    Hi Vic,

    Welcome, this is a journey and you will have lots of support here as well as your family. Although I live in Delaware I was a North Carolina resident for many years and am a dedicated Tar Heel alum--- I am cheering for Duke this year since Carolina isn't in the tourney :) But hey UNC is in the final four of the NIT. Never thought I would be bragging about that . . .

    Back to more serious stuff I appauld you efforts to educate and inform yourself. It helps and, f you are up for it, I believe it helps in the fight. Good luck as you start the treatments - have they staged you yet? It is good you are a surgery candidate - although this is a terrible cancer the doctors told us --- he wasn't a statistic, he was a person and someone beats this disease so it might as well be you. Enjoy the wonderful Carolina spring, I am a little jealous, and eat and exercise keep up your strength if you haven't you should walk some and do some strength training before the surgery if you can. The better shape you are in the better your recovery.

    God Bless,
    Cindy
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