A Quick Update About My PRRT Treatment For Carcinoid Cancer

First, I need to apologize for not posting my fourth post regarding the PRRT treatments that I have been getting. I’m so sorry the post has not been written yet and posted BUT….I do plan on writing it as well as a summary of my experiences and some additional posts. Life and cancer has been keeping me on my toes lately and so the final post has been delayed a bit. While we are on the subject of delayed posts, I also do plan on finishing the posts on B17 that I have been writing. The book I have been reviewing chapter by chapter is very informative but a little dry…and so I stopped reading it. Honesty….rare, isn’t it. 😀  So, onward and upward…here is A Quick Update About My PRRT Treatment Carcinoid Cancer…

Update: Also, here are links to all of the other PRRT post I have written.  Post #1 is an intro to PRRT , Post #2 is about my first trip , Post #3 is about trip 2 , Post #4 is about trip 3. There are a few more but they are just little updates while I was writing these main posts. There is one more big post that I am working on but…you know how it is….been sick, fighting insurance companies, fighting airlines…and so on. I will be posting about my last trip which is number 4 and I will post on hotels and restaurants and I will do a “wrap up” post. At least…that’s my big plan. Thanks for being so patient. 🙂

I’m Grouchy

I have been grouchy lately. 🙂 I had plans to go to Excel Diagnostics in Texas to get my follow up scans but I found out AFTER I BOOKED MY FLIGHT that my gallium 68 scan was not covered by my insurance. In fact, they didn’t cover the first gallium 68 scan either. So, there was no point in flying all the way to Texas to get scans that I can get here in North Carolina. Why did that make me grouchy. Well, Excel has a communication problem. They communicate very well to my doctor BUT not so good with me. If I had known that my first gallium 68 scan was not covered then I would not have booked these plane tickets. This scan was done almost half a year ago. 🙁  I lost a minimum of $600 for a re-booking fee to my airline AND no refund for the tickets. My only option is to USE the credit for ALL THREE of us or lose the money. Now, honestly….we don’t have the money to take a vacation and we don’t have the time either. So, we may lose more money. That really makes me grouchy. OK, I said my piece. Oh, wait…I just need to get this in – ha ha ha!!! I hate insurance companies…we are fighting with 2 of them right now. Grrr….grouchy….but that’s another post, right??!!  😛

Less Grouchy

Now, I’m sure most of you can relate to why I am grouchy but, in the same way music calms the savage beast, caring calms the beast within me. 😀  The one thing that I can say about the people at Excel Diagnostics is THEY CARE!!! In fact, Lisa and I were pretty amazed at how much they care. Now, of course every person is unique and I cannot speak on behalf of every employee that works there BUT…overall….what an amazing bunch of people.

From the receptionist to the the ladies in the back to the technicians to the doctors….they are quite an amazing group. Trust me, I know caring when I see it…I’ve had to deal with the opposite too many times. I’ll bet you Net and carcinoid cancer patients know what I’m talking about. 🙂 Any how, you can hold a grudge when people care. How much do they care? I complained about the lack of communication. Guess what they did? They made excuses….just kidding. No! They apologized and explained that they were short handed and were doing their best. Then…they apologized again. Then explained themselves again. Then apologized again and apologized for their colleagues. Um, OK! I’m not angry any longer!!!! 🙂  How can you stay grouchy when they care AND apologize and they didn’t give me some sort of lecture….just honesty and an apology. Thank you for caring so much guys. I have lost more money and been misdiagnosed by doctors and staff that couldn’t care if I lived or died. I was a number…or an insurance payment….or both. Excel stands out…they are Excel-lent. 😀

A Quick Update About My PRRT Treatment For Carcinoid Cancer

27% tumor shrinkage! Yes! 27%!!! That’s almost 30%!! Basically, a third of my cancer is gone!!!  AND…I have read that it keeps shrinking after that! Fingers crossed, right?! 🙂  Here is the email I received just a day or two ago.

After reviewing your records here are the final result of your treatments.You have received a total of 4 cycles of LU-177 Octreotate PRRT with a Cumulative dose of 801.966 mCi of LU-177 PRRT.

The radiologist choose to follow 5 target lesions using an IV contrast enhanced CT of the abdomen and Pelvis. Prior to starting therapy the total diameter of those 5 lesions was 35.3 cm After receiving the 4 cycles of LU-177 PRRT that I outlined above, the Total diameter of those 5 target lesions is 25.7 cm, which is a 27.2% Decrease in size of the target lesions. This is considered STABLE DISEASE.

Happiness and Joy!

So, how about that! Fighting is worth it. I found out about PRRT on my own. I was given a chemo regimen that was ineffective in treating carcinoid cancer. I researched the chemo regimen and then I refused it and found another doctor. I was told I needed emergency surgery. I found out that he was probably wrong and so I sought a second opinion. I was told that he was wrong and so I refused the surgery and found another doctor. I was told I was going to die in 7 then 5 and then 2 years! I have already beaten the 2 years by 1 year and have only 2 more years to go and I will have reached the 5 year survival mark. Only 2 more years after that and I will have reached the 7 year mark that they originally gave me. David will be 12 by then. 4 more years and he’ll be driving a car. Yes, I’m making plans. Can you say “cure”? 😀   In each of these cases I found a doctor who was more educated than the last. Eventually, I found PRRT. I researched it and pursued it. I found doctors to help me make my decision (Duke Radiology) and I went for it.

It pays to fight, to keep a positive attitude when you can and try to hang in there for a cure. Don’t believe everything they tell you. Sometimes they’re just reading from a paper or reporting what the “data” says. Sometimes, they don’t care enough to look at you as a person. I know a lot of things are out of our control as cancer patients but take back control where you CAN control things. Educate yourself, try to stay positive, enlist others in your “struggle”…I know you can do this. 🙂

Don’t give up and fight with courage and determination for your life,
Ed – To use my images on your blog for free –
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17 Comments

  1. if anyone has cause yo be grouchy it’s you! But you are keeping negative emotions under control ..
    Negativity is toxic! It leaves us weak! But you are trying to stay positive and strong!

  2. Call the airline. Happened to us nice. They needed a letter from medical specialist saying there was an issue with your appointment. Could save you lots of money. Good luck!

  3. I’m going to quit reading your posts if you continue to make me cry. (haha) You know I’m the cheerleader in the group. The one who refused from day one to accept that this will win, and I won’t have you. When my resolve gets shaky, I look at your strength and your faith, and I pick up my pom poms again. I love you!! Keep making plans, keep fighting!!!

  4. Yay, Ed! You have such a good attitude! Have you tried telling the airlines you have cancer? I have submitted receipts before for trips I have had to cancel due to medical reasons and have gotten refunds etc., wouldn’t hurt to ask.

  5. CONGRATULATIONS Ed!

    I really LOVE the partS where you fired, hired, fired, hired differant doctors and proceedures!! This, I have found out as welll, is the BEST and probably the ONLY way to stay alive in this game of LIFE.

    We are so very happy for you and GRATEFUL that you have been sharing your important journey with everyone. People really need to HEAR THIS in order to make better choices in doctors, procedures . . all of it.

    I will not be surprised when you hit your 20 year mark . .Really! ( I know you will, I’m at 17. I know what it takes and Man O’ Man YOU GOT IT!)

    Great Job Ed!

    All the Best to you and your family, Xochi

    • Thanks…I really do try to share everything for the benefit of others. 😀 I would share all of my medical records if it weren’t for the evil insurance companies lurking and looking to steal from all of us.

      20 years….I will see you there…God willing. 😀

  6. My hubby in Scotland has presacral nets. It was removed in 2007 but returned 18 months later as 2 small tumours. Another op is out of the question so he receives monthly octreotide monthly injections which so far have kept it stable. He was given 5 years then another 5 years. Who knows? We Just live and are grateful. Hope you have many years.

    • Thank you so much…what an encouraging story! 5 years…and then another 5 years. I will keep fighting and I hope you and your husband have many years together. 😀

  7. I consideer you an inspiration , For most of the time I try to stay positive but then, wake up in a Panic, but I do these exercises ..deep breathing with my hands and arms by my side after i take a vallium , Most time i go back to sleep and start my day off by taking my meds and my little packet of meds that help me with the bathroom issues, Then I open up facebook as I am eating breakfast and there you are working in that garden or playing with that little cutie David, I sometimes get up and get busy around the house unless like yesterday, I bent over to pull a little piece of grass out of my layered flower garden and threw out y lower back, Geeez , now i am sitting on a heatong pad doing nothing, and reading your good new about the 27% shrinkage and i get full of hope, I had the g-68 at maryland i;ast Oct, 30th 2015, I sent Dr, Liu the copy and went to Colorado did the MRI , He is going to try the PRRT on me when the time comes, I have to be honest Chemo was offered at my previous DR, then surgery, Second opinion Dr, Liu said didn’t agree with the surgery and did not know why the recommended chemo? Suggested I stay on the Lanreotide and come back this year for my 2nd G-68 scan which I will have to pay for, NIH was free because of Clinical Trial, Dr. Liu said my tumors will respond to PRRT wants to keep me monitored but waiting on G-68 to be set up at Colo. i am calling tomorrow to see when i can go back to Colo and get check up. I am hoping PRRT is managable for me, and i get the results you have gotten, Thanks you for writing and answering my questions, I have to admit I am a little nervous about the PRRT and how expensive it may be before medicare covers it, That’s if Donals Trump gets elected, LOL Hillary gets elected may not be any medicare for anyone over 70, Have a nice Day , Keep up the good work and good sense of humor, <3 Betty O

    • Well, I consider you an inspiration as well. You always encourage me to keep going. 😀 You have no idea as to how much that means. 😀 When things calm down a bit we will be headed to see Dr. Liu as well. 😀 David goes to his second self defense class tonight! 😀 He is so excited….gonna pick him up right now. 😀 Talks soon!!!! ~ Ed

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