My Carcinoid Cancer Story

My Carcinoid Cancer Story…..well how does one begin to write that!? I think If I start with “I was born….” you will hit the back button faster than green grass through a goose.  So, let me start with who I am, why I am writing this blog and what I hope to achieve with it.

Who I am

My name is Ed and I’m inching up on my 50th birthday soon. I have a wife and a 5 year old son. My wife is my soul mate. I know it sounds corny in this day and age but, we met in High School, went to the prom and got married in 1987. Since then we have truly become “one”. My son is the love of my life and has seriously stolen my heart…but, I’m a mush anyway.

Why I am Writing this Blog

I have cancer, it’s true, but I deliberately left that out of the “who I am” section because it’s NOT who I am. It is a disease that I have and I plan to get rid of it and it does not define me.

So….I have cancer….that’s why I’m here sitting at this keyboard. My family’s happy life has just been hit with an atomic bomb and I’ve been given a number. The number is 5 to 10 yrs. if I’m lucky (barring a miracle cure). So, I am now forced to put my life’s energy into researching and looking for a possible cure for my cancer even though I have been told there is no cure. You should know, I still have hope and I am fighting. I will fight hard and I will not give up. If you have cancer, or any other disease, don’t give up. Fight for yourself and fight for your family. Life is precious and a gift from God and, although it might not seem that way now, I hope that I can help you be inspired and maybe win your fight as I hope to win my fight.

More About My Cancer Diagnosis

This is my best attempt at explaining what I have come to understand is the rare form of cancer I have. I am not a doctor so I may need to go back and revise this section later.

Carcinoids ~ I have Stage 4 Cancer which means that it has spread to other parts of my body. The cancer has spread and is in my gut, liver, lymph nodes, bones and possibly some other places.

Most cancers are carcinomas but I have what is called a Carcinoid. Most people are aware that Steve Jobs died of cancer but most people are unaware that the type of cancer he had was a carcinoid. Carcinoids can be aggressive, intermediate or slow growers. Typically they are slow growers but mine are intermediate. From what I have been told they are incurable and because they have metastasized to my lymph nodes and bones (think bone marrow) they cannot even be removed from my body.

Neuroendocrine Tumors – The tumors that I have are called neuroendocrine tumors. They typically originate somewhere in the gut although they aren’t sure where my cancer originated.

To be more particular, these tumors usually originate in the cells of your digestive tract that produce the hormones that make your digestive system work. This hormone is called serotonin and because of this, neuroendocrine tumors can cause a number of symptoms such as flushing and diarrhea. My tumors are not actively releasing any large amounts hormones so I do not suffer from these symptoms as bad as some other people. This is called carcinoid syndrome.

The Verdict ~ So that’s it in a nut shell and they’ve given me 5 to 10 years maximum unless there is some sort of miracle cure. I’ve been to a number of doctors and they’ve all given me a similar diagnosis. Don’t get me wrong, I fully trust them and have confidence in their ability but, I cannot accept this conclusion and I am praying that God will grant me more time. Which brings me to my next topic.

Maybe I Can Help ~ I am not a doctor but I’m a smart guy and I’m hoping to use my technical skills (I have a software engineering background) to search the web for information that may not be common knowledge. In doing so, I am hoping that I might find something that will either extend my life, rid me of the cancer or both. I plan to journal my efforts as a way of documenting what works and doesn’t work for me and my intent is to share the results with you. I hope you will find this blog useful and inspiring.

Update: I have an update to my story as of 8/15/2014 – Read More

To find out how to use my images on your blog for free – Click Here

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58 Comments

  1. Pingback: This is My First Post Since Being Diagnosed with Cancer | Carcinoid-Cancer.com

  2. Hey Ed, I am not much of blogger since I unfortunately keep myself way to busy, (I almost had to make an appointment to find time to write this). I think your blog is a great idea, and while Margaret and I may not be frequent posters here just know we read it every day because we really care about you and want to see you kick cancer to the curb. It must be hard with so many friends and family sharing information, and in this case the same information over and over again with each new person that calls or emails. I am glad you have this blog so we can keep up with your progress toward beating cancer which frees up time on our visits, emails and phone calls to focus on all the things we enjoy about you. You are right, cancer does not define you. Keep blogging and Margaret and I will keep following leaving out private emails and phone calls to those things that have always made us laugh. Keep that smile on that you have in the picture of you John and I on graduation day. I think that alone should be strong enough to beat cancer!

    • Thanks guys! I will keep you posted and there’s no need to feel obligated to post! 🙂 This is really meant to help me organize and journal my efforts and, I hope, help others. We’ll give you a buzz soon. 🙂

  3. Best wishes Ed. We are all pulling for you and your family and hope for the best. This blog is very informative, and I hope it proves helpful to you.

    • Thanks so much for the kind thoughts.
      I’m sorry, I didn’t get to say goodbye in person.
      Things changed suddenly so, unfortunately, I left kind of quickly.
      I’m in NY right now…one less yankee now!
      The plan is actually for us to sell our house and return to NC but, things are complicated as you can imagine. 🙂

  4. Pingback: I Have Faith and I Think You Should Too | Carcinoid-Cancer.com

  5. Hi Ed,

    To add what Blanca posted here, is I’ve also found that high dose of Vitamin C helps cure. You can search http://healthwyze.org/
    they also have a video called the cancer report you can view this in youtube
    Hope this helps.

    God Bless you. With God everything is possible.

    • Hi Jem,

      Thanks for the encouragement.

      Yes, healthwyze is a great website!
      I’ll look for the video that you recommended..

      I had watched a number of videos on YouTube about vitamin C and they were saying it worked really well for some cancers and not so good for others. They also supplemented with oxygen treatments. I’ve been reading that cancer is basically anaerobic and when you flood it with oxygen it damages the cancer. Hey, so how did you find my blog? (If you don’t mind me asking)

  6. Hi Ed and God Bless through Jesus. I saw a documentary where a woman used cannibas oil that completely killed a tumor in her lung. If it were me, I would get my hands on some. You can put it in pills manually. It’s all natural anyway so I am not sure the harm.

    The suggestion on Vitamin C is a good one. You can make Liposomal Vitamin C. Good information on YouTube is available. I would also be taking heavy amounts of Vitamin C daily.

    Those two above are solid suggestions I believe. God Bless.

    • Hey Matt,

      Thanks for the suggestions. I actually contacted some organizations that have healed cancer with marijuana but they said that they really couldn’t promise results because they had never treated this type of cancer before. 🙁 They pretty much said it was a shot in the dark because only certain types of marijuana work on only certain types of cancer. It’s very disciplined and they didn’t want to mislead me.

      Liposomal ? Never heard of that. I will look into it.

      Thank you for the info! 🙂

      Oh, forgot to ask….how did you find me? 🙂

  7. The benefits of the Liposomal Vitamin C is the process allows for much better absorption than pills. Some studies even show its better than IV Vitamin C and you can take massive amounts without the digestive problems because the process binds the Vitamin C to your cells rather than through the digestive tract.

    Again, Its Liposomal Vitamin C.

  8. hi my friend
    have you tried or researched RADIATION HORMESIS………..Its worth a try, i have used this on cancer of the lymph nodes(lymphoma)……it worked for that person, since you have time, its worth a try…..GOOD LUCK my friend

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  10. Pingback: My Carcinoid Cancer Story Update - Carcinoid-Cancer.com

  11. Ed, I ran across your website when searching for grapes and carcinoid. As a fellow carcinoid techie I am sure you have found http://carcinoid.org/ and some of the other NETs websites. They can provide a wealth of information. There also is ACOR.og where you can ask questions. To sign up go here http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=carcinoid&A=1.

    There also is the 2014 National NET Patient Conference in Charlotte, NC on September 18, 2014 you can find more information here http://events.r20.constantcontact.com/register/event?oeidk=a07e8qwahml5687feb3&llr=hbloa4dab. You ought to attend if you can to find out the latest cutting edge clinical trials, specialists, etc.

    Wishing you well.

  12. Dear Ed, just read your blog and I am impressed that you, until now, have the energy to share your experiences with others! Last week I read different articles about Backing soda with lemon juice! It says that it kills cancer cells! Try to Google it. All the best and I hope you win your fight against cancer! Greetings from Denmark (Europe). Frank

    • Hi Frank, Thanks for the info. I will look into it. It seems that there are a lot of “cures” that work on this cancer or that. It seems that the trick is finding what might work on yours. I’m still searching.

  13. great site Ed, do you have a ‘follow’ button anywhere so I get notifications when you publish new content? I had a good look but …… I just ticked ‘notify me of new post via email’ – perhaps that will do it?

  14. Pingback: I Need To Make Money As A Cancer Patient - Carcinoid-Cancer.com

  15. Ed, thank you for putting up your blog. I hope you are well. It is always good to meet others who are fighting neuroendocrine cancer. There is so much to say and share. I am fighting it with diet before going on to chemotherapy. My oncologists have recommended the Cap-Tem regimen. I have Stage 4 also – metastases to liver and brain from the gut. My wife discovered your site a few months ago. I am re-discovering it now and plan to be attentive to it.

    Enrique Ortiz

    • Hi, it’s good to have company, right?! 🙂 Cap-Tem worked for a little while for me but stopped after awhile. Have you heard of PRRT? I am doing pretty well on that. 🙂 I’m glad the blog is worth reading for you. 🙂 ~ Ed

  16. Pingback: What Carcinoid Cancer Is Like For Me - Carcinoid-Cancer.com

  17. G’day Ed! Very good of you to put yourself out there to the interweb. Just wondering HOW did you come about being diagnosed? Was it incidental? Or did you have symptoms? I hope that you are feeling good and keeping strong.

    • It’s a long story but I had a lot of symptoms…all which seemed to point to something other than cancer. I had a colonoscopy and they found a growth which was biopsied and diagnosed as cancer. Do you have carcinoid or net cancer as well?

      • Thanks for answering, Ed. I’ve been having symptoms for over 3 years and most doctors just shrug and say, “I dunno, you are just weird!” FINALLY after having too many times of too many botty problems, I found a great doctor who basically informed me on my sitting down in his rooms, ” I reckon you’ve got carcinoid!” I nearly hugged him. I’d been reading up about it for years, and this guy actually KNEW about it? Anyways, about to do all the wee wee bottle, poo bottles etc, so fingers crossed it either IS and I hopefully can get some treatment or it isn’t and they wrap my arms in the extra long sleeved white jacket. 😉 Cheers from Australia!

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  20. I have carcinoid tumors. Dr says they started in my rectum and moved to liver. In August of 2016 when they were found, Dr said my liver was 75% full. I was put on Sandostatin injections every three weeks. A new scan recently in May 2017 said they have grown and liver is 95% full now.So i have stopped treatment. I have not given up but chose to let nature take its course.Let go and let God.(of course,this is a short and to the point summary).

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