This is My First Post Since Being Diagnosed with Cancer

Hi, this is my first post since being diagnosed with cancer and so I hope you will be patient with me as I work my way through this. I thought you would like to know a bit about what I plan to post here. If you would like to know more have a look at the “My Carcinoid Cancer Story” page.

My intent is to use this blog to help myself and others with their cancer diagnosis. I also plan to use this blog as a sort of sounding board. You should know that I am NOT a doctor and this blog is not intended as advice but is really only intended as a sort of diary of what I am going through, what I am researching and the results I get from my efforts. This is my path but you are welcome to watch and comment but, please do your own research and find your own path so that the choices you make are your own and a result of educated choices.

For now, to get the ball rolling, I should tell you a bit about myself. I have been diagnosed with Stage 4 Cancer. Typically cancers are carcinomas but the type that I have is called a carcinoid or also a neuroendocrine tumor(s). Carcinoids are a bit different from carcinomas in that they can SOMETIMES be less aggressive. My tumors have been classified as “intermediate” which means that they are not  aggressive and also not slow growers. Steve Jobs had the same thing but he had the tumors in his Pancreas. So, here I am with the same disease Steve Jobs had but with less money. Oh boy. Fortunately for me, they have made some advances since Steve Jobs passed away and maybe, if God permits, I will not share his fate.

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  1. I think this is a great thing you’re doing , It will help people who have this to get information they need in going forward. I like many people had never heard of this type cancer before so yeah way to go !!!!!

  2. This is a great idea. You may get helpful information from other suffers that your Doctor’s can use. Ever thought of contacting St. Judes to ask if they’ve ever had to treat a child for this?

  3. I agree. This is an extremely positive thing you’re doing. Not all people have your knowledge of the web, and won’t be able to research the way you do. I’m sure many people out there will find this helpful. I’ve personally already gotten quite an education on this cancer listening to you, and reading what you find. And if the only purpose it ends up serving is to organize your thoughts, and help you make decisions, it’s still a win in my book! I’ve got you bookmarked. 🙂

  4. This looks great! Not only that, it sounds like a place that will not only be helpful to you, but to others who are battling cancer. Bless you for putting yourself out there and doing this!

  5. Good luck with your journey.You are really going to be a help to so many people who aren’t able for what ever reason to do this . Will be reading your blog and sending you loving thought’s from now on . kitty xxx

    • Hi Kitty,
      Thank you for the kind thoughts. I hope you are right.
      I have a lot of technical skills and I hope that they will be used to benefit everyone.

  6. Good luck with your research. Try to stretch the 5 year life expectancy to 20. is a good starting point and try to get into a carcinoid support group in your area, they will give you a lot of support. If you want to contact me directly you can do so. I was diagnosed in 1992 and have lived with this disease now for over 21 years, so you see there is hope. I have had a liver chemoembolization, a RFA, a blend embolization and a PRRT treatment in Rotterdam, The Netherlands. I am presently on a MiniMed pump using 1000 micro grams of Octreotide Acetate per day 24/7.

    • Hi Henk,
      Thank you for the note. Wow, 20 years. That would be great. Do you mind if I ask what stage you were at? I’m at stage 4. I will contact you privately to discuss some of the treatments you are using and have used in the past. Do you live in the US or the Netherlands? 🙂 Thanks again, Ed

  7. Ed,
    Sorry to hear about your diagnosis. You will do fine and starting a blog is a fine idea that can make you feel like you are not alone. Without getting long winded on you, I have been through the carcinoid ordeal and I am well versed in it. No, I have not had it, but I have been a caregiver for 17 years and learned all about it. We waded through the massive amounts of misinformation out there for some years to find the real facts, the proper doctors and treatment choices. I can tell you my opinion for what it is worth. Start NOW to get in touch with one of the expert doctors. Most hometown doctors don’t know enough about carcinoid and the years they can waste by wait and see tactics can wear on you mentally and phsically. Here is a list of carcinoid doctors you should start with.
    They are all fine doctors but in my opinion, you should start with the biggest and best experts. We traveled the country going to conferences, seminars and user groups to find the best and in my opinion you should start with Dr. Tom O’Doriso at University of Iowa Health Center in Iowa City, Iowa, Dr. Eugene Wolthering at LSU Health Center in Kenner, Louisiana or Dr. Larry Kvols at H. Lee Moffit Cancer Center in Tampa, Florida. We found Dr. O’Dorisio to be the best fit for us and I highly recommend him. These three doctors are all very kind and their staffs are top notch. They have compassion and they will work with you, your insurance and family to find the proper treatment paths for you. They typically work through a doctor that is closer to you in order to make it easier. Any of these doctors on this list could end up being your doctor, but you should do yourself a favor and get an initial consultation with one of the three I mentioned. If you are close to Chicago, I also recommend getting an appointment with Dr. Riad Salem at Northwestern University in downtown Chicago. He is the chief radiologist, but he knows carcinoid very well and he knows what is needed to treat it. He works with the other doctors on this list to create the best plan for you.
    Hope that helps you and please know you are in my prayers.

    • Phew! That was a lot of good information. Thank you for the added information. I am actually in touch with some doctors in the University of Iowa Health Center. I think they are interested in having me participate in a clinical study but we need to converse more. Thanks for the prayers, I’ll take ’em! 🙂 I will try to touch base with you a little more later via your email if you don’t mind. ~ Thanks again, Ed

      • If you are in touch with UIHC that is great. Just knowing that they are experts should ease your mind. Now you can work with them to find what is best for you. Don’t shy away from the clinical studies in my opinion. The extra attention you get in the studies can only help you. Feel free to contact me at this email address. I do not check it as often as my primary email address, but if you contact me there I can get you my main email to make it easier. Best of luck to you.

        • Thanks again Jim,

          They seem really good at UIHC. I hope that I’m accepted into the study. Thanks for the offer, I will definitely contact you at a later date. I’m still digesting your first post! 🙂

        • Hi again Jim, I was not accepted into the clinical study because my tumors have grown. I have consulted with Dr. Warner in Manhattan. He is doing DNA testing on the tumors to find the best meds for me. I’m still waiting to hear.

        • Hi again Jim,

          I have been working with Dr. Warner in Mt. Sinai Hosp. in Manhattan. My local Dr. is in North Carolina. It is very difficult to get good medical care. I feel like I have wasted a large part of my year bouncing from Dr. to Dr. who only follow a protocol designed by people who never met me. They push Sandostatin as a treatment….and my cancer has now spread. They all seem not to care and just guess at treatments.

          Dr. Warner recommended that I have DNA testing done on the tumors and has recommended a chemo regimen (with some other meds) as a result of the test. Why is it, in my experience so far, that nobody else does this? It is very worrisome.

          I think these other Dr.s are “writing me off”. and therefore putting less effort into my case. It’s very troubling and I think something should be done because I am sure that I am not the only one dealing with this.

  8. Ed, You’re off to a good start with wanting to research carcinoid and already people are pointing you in the right direction. I was diagnosed in 2003 with the classic presentation of mid-gut and by 2008 had liver mets. I’m on Sandostatin LAR and rescuing with Octreotide now. There are also some online groups on Facebook if you’re interested. Contact me via email and I’ll get you in. These are closed groups, so your posts don’t flow out to all your friends. You can be as discreet and as curious as you want and there is lots of friendly folks. Best advice above is get on and find yourself a specialist who will work with your local oncologist to tackle this. Best wishes, Dal

    • Thank you so very much for the invite. I’ve never been a social media guy before but, I think I will take you up on the Facebook invite. Thanks again! Do you mind if I ask what stage your in? I’m stage 4 and so that kind of skews how I see things. I read about people who took extreme measures to beat the cancer but, they always seem to have a lot less tumors than I have. 🙁 I think I might start every post with “I have Stage 4 Carcinoid-Cancer” so that people will know right away as they read my article if the article applies to them or not. I think it’s time to open a Facebook account for the first time. 🙂

    • I just wanted to follow up with you about the FB thing. I did ask to get in but I was never acknowledged. So, I deleted my page. I don’t really use FB or things like that. Thanks again for the invite. 🙂

  9. You truly amaze us, Ed, and we are so very proud of you and your positive attitude. This method of sharing info so others can gain from your research is typically thoughtful and kind of you. We pray that the info will help you (and others), that you will connect with the right doctors, and that God will guide and help you in this process. In addition to all of the expert treatment and advise you receive from the doctors, may He lay his healing hand on you.

    • Thanks for all the prayers and kind thoughts. You know. I really feel that when you help others it takes your mind off of your problems. I hope my little blog does actually help others and, if I’m lucky, me. 🙂

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