I’m Not A Quitter

OK yes, I’m thinking of a joke. You know the one. Somebody asked a guy why he won’t stop smoking and he responds, “Hey, I’m not a quitter”. πŸ˜€ I know it’s a terrible joke but I can’t help it. Any how moving on to the point of this blog, I am in the process of getting up on my feet again. I mean that literally and figuratively. What a blow to my psyche it was to learn that my tumors had started growing again before I expected them to…well, before I had hoped they would at least. You can read about my 4 doses of PRRT here. Physically, it has taken it’s toll as well. I am extremely fatigued. Still, I’m not a quitter. πŸ™‚

I Have Good News And Bad News

First, the bad news. If you read my last post 2018 Is Off To A Bad Start, then you know that my cancer has started growing again. Well, I just found out that the 30% tumor shrinkage I had gotten from my 4 treatments of PRRT at Excel Diagnostic has almost been totally erased since September. I have been going for regular follow ups and as of September I was in good shape. Unfortunately, it returned very quickly and erased all of my progress in between scans. Deep down I knew it. I could feel it physically and a lot of my pain and fatigue has returned. Lisa knew it as well.

Now, the good news.

Well, I sent my CD’s out to Dr. Liu and to Excel Diagnostics in Texas and as fate would have it, Excel called me up right away. They looked over the the scan a second time and confirmed that my tumors had grown. Also, they checked my kidney functions and told me that I am still able to get PRRT. I am allowed to get 2 more treatments. Thank God! πŸ™‚ They suggested that sooner was better than later since it seems to have been very aggressive in coming back. They suggested that I should respond just as well as the last 4 treatments but, of course, could not promise anything. πŸ™‚ Just a side note, the price went up in the 2 years I’ve been stable by $2,000.00.

My Plans Keep Changing

Well, I am ready to fly down there but money is a thing. Also, David is in school so we have to get his school work so he can take that with him. It cost me about $12,000.00 per trip including medical expenses, air fair, hotel, meals and so on… so, I am expecting about $14,000.00 per trip now. Unless things change I will be going soon but I still need to speak with my Oncologist and Dr. Liu. I don’t foresee them changing things but they’re the doctors so, I will wait for their opinion. πŸ™‚

I will keep you posted,
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13 Comments

  1. Wow, shrunk, now growth. I’m sad to hear this news. I pray for better news and for the next round of PRRT to perform a miracle of healing for you. Following.

  2. Ed, I understand your concern. Consider that NET does not go in a straight line. It can slow down for no obvious cause. That has happened to me a couple of times. Like you, I know when the disease is picking up speed. I hope your zebra stalls out for a while and then – maybe – PRRT will be available in the US, covered by Medicare and insurance.

  3. Keeping fingers and toes crossed for you! Hoping everything works out in getting these two treatments! Maybe it’ll be approved and insurance will cover but you know how that goes.

  4. Sorry that progression is happening, Ed. With the FDA approval of Lutathera, let’s hope you have the best possible outcome both with the costs and the treatment.

    • Thanks, Cy πŸ™‚ I was speaking with Excel and that had high hopes for me based on my history. πŸ™‚ The cost – oh boy, now that’s a different story! I hope you’re feeling well! πŸ™‚ I miss your posts on fishing – LOL

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