My Latest Scans and an Update

I’m sorry that I’ve been so remiss with this blog but my plate is so full. In addition to my cancer symptoms and my garden, I am now homeschooling my son, David… and Lisa and I have a business that we might try to execute. πŸ™‚ … sooooo…. I dropped the ball on my blog and I’m so sorry. πŸ™‚ I decided the best way to get rolling again was to post an update.

My PRRT Treatments

I finished my 5th and 6th PRRT treatment and there is growth but not everywhere so, I am basically stable. Unfortunately, since my 4rth treatment the cancer shot from the base of my spine all the way up my back, up my neck and into my skull….AND .. .my shoulders, legs, ribs and they’ve found some in my lungs … these are just the new areas. UG!Β  I have been suffering from fatigue and pain but not consistently. They were worried that I had fractures in my legs but none were found.Β  The good news is….. should I have asked if you wanted good news or bad news first? … the good news is that since my 6th treatment the cancer has been held at bay for the most part.

The Plan

Well, to be honest, so far there is no plan except the existing plan that was in place which was PRRT and if that becomes ineffective then maybe surgery. I am scheduled to have another scan in about 5 months. I have to be honest, surgery scares me. I did not recover very well from my liver embolization which is supposed to be an “out patient” procedure. I ended up staying there for about a week and I was in a huge amount of pain.

Plan B … and Maybe Plan C

My plan B is Targeted Alpha Therapy (TAT) which I was told should be available sometime in 2020 … maybe even the first quarter? My understanding is that TAT is more effective than PRRT because it uses Alpha radiation rather than Beta radiation and the wave lengths are longer. I was told that instead of killing only a single strand of DNA it kills both.

Plan C is surgery I guess? There’s so many things happening now!Β  Some of the treatments that are still hopeful are Immunotherapy and Anti-CD47.Β  I keep hearing a lot about #RSO which is Rick Simpson’s Oil which friends have told me worked to shrink some of their tumors.Β  We shall see if any real research is done.

How I Feel

Well, I can safely say I feel worse. Fatigue and pain have increased and just walking around has become difficult. I can drive 5 minutes to the bowling alley but even that is pushing it. πŸ™Β  You know, I miss those “normal days” where you don’t feel like you have cancer. They are coming so much less frequently now. BUT at least my house is filled with kids. πŸ˜€ That makes me happy. πŸ™‚Β  All of David’s friends are over and in and out of the house like wild little monkeys!!! πŸ™‚Β  We have a permanent badminton / volley ball net in the front yard and the freezer is stocked with ice pops. πŸ˜€

Life is for living so have fun,

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  1. Never apologize for being busy with living life! Good news about the TAT -going to look at that more too for a Tony. His PRRT finished #4 the end of January and the end of July he had Reverse Shoulder Replacement with Radical Humeral Replacement-from elbow to shoulder he now looks like a Terminator…and the bone pain from his cancer there is Gone.
    10 days post-op from that he had a cardiac event, #2 stent placed-thank you long term side effects of Affinitor!
    All in all we continue to live with carcinoid cancer (now nearly 18 years) and are grateful for each day and each new adventure.
    Blessings and hugs, Mari

  2. Sad that things are not better for you at this time. Love your attitude! Life IS for living, let’s keep on living it.
    May you have the best possible outcomes.

  3. I am sad to hear about this. It SUCKS!! I hope from my heart that the cancer can be held at bay. Research goes on and one day hopefully not too far away there will be a cure for this nasty disease. In the meanwhile, keep your head high and make sure you get your rest. And eat well.

    • Thank you, Ingrid πŸ™‚ I will try to do all of those things πŸ™‚ such good advice. Keeping my head held high is difficult sometimes but friends who care make things easier. I hope you’re feeling well.

  4. Hi Ed, So glad you posted an update. I have Carcinoid Cancer that spread to my liver and I was told I am not a candidate for surgery. I had Y-90 seed implants and it made zero impact on my situation. I had PRRT treatment. (4). I think it was helpful but I have to admit I really feel the fatigue on a daily basis and I wonder everyday will it be my last? My friends and family laugh at that, they say you have been dying for a couple years now and you’re still here. I think of how your fatigue must be with a young son. I wonder if the kids force us to push through the fatigue. Wishing you well.

    • I know that laughter… πŸ™ I guess we’re not dying fast enough for some people. Yes, the fatigue is terrible and I feel so bad that I cannot do more for my sweet, little David. I do my best and I DO push through because of him. BLESS YOU!!! Regarding surgery, Dr. Liu had a large tumor in my liver embolized. He also suggested that there are others that he might “pluck” out for me. All other doctors had said the same thing as yours, “No surgery”. You may want to give him a call?

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