2018 Is Off To A Bad Start

I knew 2018 had some nasty surprises for me but I expected to make it out of January before I got hit by the truck of life again! In my last post, I wrote that I suspected that my PRRT was starting to near the end of it’s effectiveness and, as it turns out, I was right. I had a scan about a week ago and was hoping for good news but unfortunately, the tumors in my liver are growing again. 2018 is off to a bad start.

The Bad News

I had my scan last week and yes, the tumors are growing again. It’s so disappointing since the typical person often gets around 3 years of stability (no growth) after being treated with PRRT and I’ve only gotten 2 years. I know everyone is different but I was hoping to be normal for once. πŸ™‚Β  I was even hoping to squeak 5 years out of the treatment. Such is life. You can read about my experience with PRRT here. It was a very effective treatment for me.

My Plan For 2018

Well, I just wrote a blog post aboutΒ my plans for 2018. I guess I will need to revise some of that! Still, I am doing what I can. My plan is to play the cards that I’m dealt to the best of my ability and to be the best husband and father that I can be. I plan to fight as hard as I can to beat this cancer and to live my life to it’s fullest. Nothing in life is guaranteed but that’s my plan.Β 

My Options

I haven’t gotten the discs for the scan yet but I will be sending them off to Dr. Liu at the Rocky Mountain Cancer Center as soon as I get them. I will also be sending the discs to Texas where I got my PRRT. Finally, I will be meeting with my Oncologist at Duke Cancer Center in early February. I am hoping to get some sort of plan in place. I think that I have 4 options which are chemotherapy, embolism, surgery or my last 2 doses of PRRT. As most people know who have been reading this blog, chemotherapy doesn’t typically work on neuroendocrine cancer. Carcinoid cancer is a type of neuroendocrine cancer so, it didn’t work for me. I’ve also read that there are some new immunotherapies available. I’m going to look into this as well.

There Is No Silver Lining To Cancer

There is no silver lining to cancer but good can come from bad. Well, I have a story of good coming from bad. I hadn’t gotten the bad news for more than 2 hours and the wonderful leaders of my church were at my house praying for me, Lisa and David. So many people in my church have been praying for us, so many friends on Facebook have supported our little family and, of course, family and close friends. It was encouraging to have the leaders of our church support us so visibly. I was so happy that David was able to see that people care for us in our church. There are so many bad examples in the world. I’m glad he saw some good examples. I’m glad he got to see good men putting their faith into action. So, no silver lining but definitely good coming out of bad, wouldn’t you agree? πŸ™‚

I will keep you posted,
Ed – To find out how to use my images on your blog for free – Click Here
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  1. Hi Ed, thank you for sharing your news. I’m glad you have such good support from your church and you have support from your followers too. I’ll be praying that your medical teams guide you to the best next steps. Sending zebra hugs to you and your family from Philadelphia.

  2. Agreed Ed, agreed. I am Praying for YOU, for your family and we KNOW Prayer works . .

    I am putting my “Bet” on you Ed! You have what it takes to survive and to thrive. You have the Spirit, the Love! and the Support! There are options too and that is a VERY good thing

    All of our Love and Prayers Ed, my Zebra Brother . . .

  3. Ed, i’m so sorry to hear that. I pray that they go down. I left you a message on facebook and sent you a friend request. You won’t recognize the name though.

  4. George. Hello! I am a newbee with a Lung Net(s). Trying to make sense out of all this info. This post seems to be the latest with lots of info dating 2015. I don’t know how to navigate “blogs” so forgive me if I am stepping on toes. Things are changing so fast that old stuff is really old stuff. PRRT is now approved in US and that is what I am thinking about. My oncologist and other “team” doctors have not even heard about it. So I am on my own. Dr. Wollin in NY has a program if I can get to it. but you mentioned a problem with your NY adventure. Please email me if you think I will have a problem too.
    I was diagnosed in May 2017 and I have been digging for info ever since. I live in SC and went to UNC Chapel Hill. No one there has offered the name of a Carcinoid Specialist like you found at Duke. Appreciate hearing from you. GAP

    • This is a recent blog but I have been blogging consistently since at least 2014. πŸ™‚ You can see the most recent blog posts by clicking http://www.carcinoid-cancer.com – it will take you to the home page.

      FYI, I am fairly sure Duke has PRRT. There is no Net Cancer / Carcinoid Cancer specialist at Duke but my Oncologist is Dr. Abbruzzese and he is great. His email is: james.abbruzzese@duke.edu also, my specialist is Dr. Liu in Colorado. Here is his email as well: eric.liu@usoncology.com

      I had a lot of bad experiences in NY BUT, Dr. Wollin has never been my Dr. so….. I cannot offer you any guidance in this case. So sorry. I only share my experiences, both good and bad, so even that is just my opinion. πŸ™‚ Still, I share my experiences because nobody helped me when I was first diagnosed. Let me know if you have any questions. πŸ™‚ Also, Facebook has tons of great groups. If you contact me, I can point you to some other Lung Net patients who can probably help you. πŸ™‚

  5. Thanks Ed for all that good info.
    I do not subscribe to Facebook…I can just about make my way around a computer. My wife’s facebook overwhelms me. I hope I can connect with a lung net blogger some other way. Perhaps you can forward a link.

    Dr. Wolin has left behind a number of NET centers as he advances in his career. The closest one to me is at the University of Kentucky. I am attracted to NY (former NYr) because of the trials at SK and other hospitals. PRRT is very expensive and codes have not been generated for Medicare and other insurances. I hope it will be covered.

    As we age other comorbidities come into play. Lanreotide combined with Metformin creates a very similar syndrome to yours. Ugh so many drugs. Sometimes I am a dancing man too! It seems that having a good team is the best answer to dealing with this type of cancer. Removal of the tumors is always best, but mine are inoperable. So I have to deal with the conditions it creates….like breathing or not. so far so good.

    UNC has a pulmonologist that uses PDT. These light sensitive little bombs can destroy tumor on contact with minimal invasion. PDT can be used on a number of different tumors and locations. Might be worth looking into if you have not already done so.

    Best Wishes and High Hopes…..GAP

      • Hello Ed:I know spring is in the Carolinas somewhere. Just when I thought that flowers were here to stay…it snows in the North country. Man you just can’t count on anything anymore. Its like trying to find out more about Carcinoid. Your question…PDT or Photo Dynamic Therapy is simply a light activated chemo treatment. It is similar to PRRT which I know you know. I am including a link from Wiki to give you all the tech stuff then explore in Carcinoid data. The Drs. were considering it for me but tumor too close to major artery. https://en.wikipedia.org/wiki/Photodynamic_therapy. Hope this helps….GAP

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