New User. Please Help. Father Fighting Stage 4 Esophageal Cancer.

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Muffiegirl
Muffiegirl Member Posts: 1
in Esophageal Cancer #1
This is my first post. My dad, 67, was diagnosed with stage 4 esophageal cancer this past Jan. It had metastasized to his rib. He is being treated by an oncology team - a thoracic surgeon, a radiologist, and an oncologist. We were told surgery was not an option. They did a biopsy and the histology of his tumor is rare, small cell neuroendocrine - neither adenocarcinoma nor squamous cell carcinoma.

He went through a cisplatin regimen but the disease progressed with new mets in liver, then an ironitecan regimen but again the disease progressed with new mets in shoulder. Given the rarity of the tumor histology, our oncologist did a Target Now test which showed that cisplatin should not have been effective, but ironitecan should have. He's still willing to fight, so he started epirubicin another agent the Target Now test indicated should be clinically effective. Avastin also showed clinical activity, and our oncologist is looking into it.

I'm not sure what to do at this point. I live in San Jose, CA and have two small children. My husband and I both work full time. My parents live in Greenville, SC. I'm traveling as often as I can, but I need to keep my job and care for my children.

Is anyone aware of any cancer centers that specialize in esophageal cancer, particularly difficult to treat and/or advanced disease? Should I be trying to find an esophageal cancer expert for a 2nd opinion? Should I be looking for clinical trials? Are there other experimental treatment options I should investigate?

The Greenville Hospital System and his oncology team seem very competent. I have a PhD in neuroscience and about 10 years working in pharma & medical device industries, so know enough to be dangerous. I just want to make sure that we do everything reasonable and possible before we start to think about palliative care.

Thank you in advance for your support.

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  • unclaw2002
    unclaw2002 Member Posts: 599
    #2
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    Hi,
    Recent information seems
    Hi,

    Recent information seems to indicate that a combination of Irinotecan and Erbitux seems to show promise for Stage IVb patients with mets to the liver. My dad, he was 78 when diagnosed did chemo (taxol and carboplatin) and radiation before the cancer spread to his liver. He then did 5FU and then finally tried the Ironitecan and Erbitux as part of a clinical trial at the University of Pittsburgh Medical Center under Dr. Michael Gibson. Dr. Gibson is also doing a clinical trial with Irinotecan and the humanized version of Erbitux . . . Phase II Study of Irinotecan vs. Irinotecan + Panitumumab as Second-Line Therapy for Patients with Advanced Esophageal Adenocarcinoma. The clinical trial information can be found at clinical trial at the UPMC:
    http://www.upmccancercenters.com/trials/trialDisplay.cfm?id=4979&type=D. (paste into your browser)

    I don't know if your father would qualify or not or be willing to travel. Medicare won't pay for Erbitux because it is an off label drug but we were able to get my dad the drug in Pittsburgh as part of a clinical trial and after 6 weeks his cancer was stable and had not spread. The results have been encouraging. The treatment is fda approved for colon cancer.

    Also you might want to make sure your dad's tumor is tested for the HER2 gene expression - if he is positive then Herceptin may be available to assist in retarding the spread of the cancer.

    You mention getting a second opinion and yes I say you should absolutely go to a "Major Cancer Center" that specializes in treating Esophageal Cancer. If you have any questions please message me and I will be happy to respond privately. This is a difficult journey but make sure that you dad has signed releases so that you and other family members can speak directly to the doctors. That is essential as you go through this. Make sure to ask questions and always have someone at the appointments with your dad --- it is really difficult to take everything in and sometimes the patient doesn't hear what is being said.

    Cherish the time you have with your dad - I understand your situation. My parents lived in New Orleans and I live in Delaware with a very busy career and two daughters (one who just graduated from high school). Going back and forth was a challenge and going to doctors appointments in New York, Houston, New Orleans and Pittsburgh certainly added on the frequent flier miles. I was fortunate and was approved for FMLA time to help care for my dad on an as needed basis --- I had lots of vacation and sick time. So I would take a few days here, a week there etc. but because of the FMLA I was protected at work and able to use up some of my sick leave to spend time with dad. I wouldn't change anything except to spend even more time with him. Dad lived for almost two years after his diagnosis he was a fighter and a wonderful man.

    Best wishes,
    Cindy
  • cher76
    cher76 Member Posts: 292
    #3
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    Welcome
    Welcome to our site. I am sorry to hear the circumstances of why you are hear, but I know you will find this site most helpful. Everyone here is struggling in some way, shape or form with the same things you are, and the wealth of information to be found here will help you feel enpowered on this journey. As I explained to our doctor one day, "I am talking to people who actually live the same disease as Rickie, day in and day out." My husband is also a stave IV ec patient. He was diagnosed in Oct of 2010 with esophageal cancer with mets to the bones at MD Anderson in Houston. He has been on T-FOX, then a clinical trial, and presently Erbitux and Irinotecan. After his first round of Erbitux and Irinotecan his CT scans came back very good. Many of the nodes were resolved as well as places in his spine where it had spread. He is now on his second round of this combination and is doing fairly well. His doctor at MDA is suppose to be the "world authority" on treating esophageal cancer. We travel there for all our scans and the doctor there prescribes the treatment, then we take the prescription home and receive treatment here. Our hometown doctor has been great and has help us manage the side effects. If you press on my name beside my post you can read our "About me" page. Good luck on your journey.
    Cheryl
  • oriontj
    oriontj Member Posts: 375
    #4
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    It is a rare tumor
    One of our friends had the same cancer in his bile ducts. They did a Whipple and the surgeon said, you're fine...do a ct in 6 months..that's a tricky cancer from what Tom's oncologist said..and our friend's went to stage 4 in his liver.

    Many times a big cancer center is the place to be..and other times maybe not. It depends on how far away it is..who can drive your Dad to treatments. We have good friends that stay in town when Chicago is 35 mins away.

    I think whatever your Father and Mother feel comfortable with is the best. A second opinion is always good...but my husband just stayed with the first one.

    We will keep you in our prayers

    jan
  • Unknown
    Unknown
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  • LivingFaith
    LivingFaith Member Posts: 74
    #6
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    dad
    I haven't been on the boards for some time now, but decided to check in. Your post reminded me very much of my own story.

    My dad was dx last July 13th ECIVb with mets to his liver. I scrambled, researched,looked for every combination of chemo, better doctors, studies, ect. Looking back, it was more like a dog chasing it's tail, never ending and what do you do if you catch it? I'm sorry to say my efforts were almost all in vain. My dad, age 65, died exactly 5 months later on Dec 13,2010 after trying chemo and getting a stent.

    I'm not trying to discourage you or take away all hope. My point is to try and make every single moment count. Pray, Pray,and Pray some more for him and your family. Leave no words of love and admiration unspoken. Tell and record as many stories and family history as you can. Take pictures, video, write a letter to him and if he is up to it, have him to the same.

    I have no advice on what chemo is best. I am just a girl who watched her dad/hero be taken by this beast. He suffered and we did watching him become a shell of who he once was. The scariest part of all was when brain mets made an ugly appearance robbing him of memories and dignity. It was all so fast and I wish I would have spent more time doing the above activities instead of fretting over chemo and treatments that only caused him more pain and misery. Some people have few side effects and get more time, but at stage IVb every treatment is palliative.

    Hindsight is 20/20. I wish someone would have told me these things a year ago. I wouldn't have believed them at the time, but just maybe, I could have spent more time with my dad instead of trying to fix my dad.

    Prayers being sent.

    Deb
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #7
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    Welcome
    Hello Muffie and welcome to you and your dad. I was a caregiver for my dad. He was dx in 11/08 with EC. He had 6 weeks of chemo and radiation, Did quite well. In December 2009,the cancer went to his bile ducts in his liver. He had to have a stent put in his esophagus due to scar tissue. Had to have a stent put in his bile duct. Came home right before Christmas. He did so so. Started chemo again in Feb for liver cancer. Had many side effects. Had no quality of life left. He passed away March 9, 2010. I am not telling you my story to discourage you, but I just want to tell you my experience. Your dad is in South Carolina, I know there is an excellent cancer hospital at Duke University. I do not know how far away this would be for him. Do the best you can. Do your research. Try everything, and then always go with your gut feeling. You and he will know when enough is enough. God bless you and your family throughout this journey. Let us know how things are going.
    Tina in Va

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