I said goodbye yesterday at Dr. Luke’s office here to all the wonderful people. Today I had to rush in for another transfusion and got to see the girls at the hospital where I have that done here and got to tell them goodbye. We’re having lots of goodbye dinners this week with friends we met from here and a pool party on Saturday. The people of the Midwest are as nice as people say they are! We will really miss them.
After conferring with a doctor in India, Dr Sen, I decided there was no way with my PSA elevation during The eight weeks after my first treatment(500%) and my scans Showing all the original metastasis stable and growing and a dozen new spots, That I could rationalize (and she said they would not consider me for) a second treatment.
My blood work at the doctors office yesterday also reconfirmed that I would not be able to start back really soon because my ANC number was still way too low for the infusion.
So we are having a friend fly down on Sunday to help with the drive back which will start on Monday and take it a week( a very slow easy going road trip.)Dr Sen also suggested exactly what my oncologist back in Miami had suggested, as soon as I get my blood work good enough to continue with chemo.
Thanks to all who have been following me on this journey. I’m sorry that Lu 177 didn’t work out for me, but I remember the odds saying 10% don’t do well. I never thought I’d have to be a part of that group but I guess now I realize SOMEONE has to be.
I’m looking forward to our road trip and getting home to my Sparky🥰🥰🥰
gJohn
P. S. People have come to expect food pics. This was lunch... a nice homemade French dip sandwich with sliced sirloin... horseradish and au jus.
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greatjohn
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So glad to hear your update as I thought of you over the last couple of days and wondered how you are doing. I can’t offer much advice to you but I’m wishing you so much more time around to enjoy. Have a safe trip home to sparky but enjoy the lovely road trip along the way GREATJOHN. 💚☘️
Thanks so much for thinking about me! Richard and I think a lot about Ireland where you’re from because we enjoyed it so much on a trip a couple years ago. It and the English countryside were so beautiful we loved it! Every time I see your name it brings back wonderful memories.
If it wasn’t for covid I’d ask you and Richard to book flights to come stay with my husband and I. It would be my pleasure to welcome you both to Dublin. Just know I’m with you all the way. 🙏🏻💙☘️
Dr. Sen sounds like a stand up woman. I think you gave it a great shot and I regret deeply that it didn’t work
She took quite a bit of time a few nights ago talking to me after she got home from a long day at the office. I love her from a distance! She really helped make my decision easy.
I too have been to India and Dr. Sen is my nuclear medicine doctor. There is another treatment offered in India that Fuzzman obtained when he was not a candidate of Lu-177. It was developed I believe by MD Anderson. I stay in very close contact with Ishita and she is and her protocol a up and comer in her field. Her sense of humor is wonderful. She knew I drank a few brews once in a while and after my first infusion she said for me to go back to the hotel and drink fluids. I relented and said I am on the water doc. She replied that she did not say water and that she understood I liked beer....At that moment she became my favorite doctor! GJ all the respect goes to you man. I hope this story makes you smile. God Speed and alway Blue Skies and a Tailwind ..Sky King and Penny (woof)
I was wondering how you were greatjohn and looked at the site to see if you posted yesterday. I am so sorry lu177 did not work for you but I am glad to hear that you are about to enjoy your drive home and are thinking of chemo as the next step. I admire your fighter’s spirit!!
Omaha was a wonderful little side trip in my journey.
Yes Midwesterners are very friendly people, especially us farmers/ranchers. We welcome everyone with open arms as though they are our parents. So John enjoy your week long trip home and regroup for your next treatment sequence. On to the food photos, the wife and me will be patiently waiting to view your Christmas feast pictures. A beggars banquet possibly. We pray for you John.
Arrgh. What a frustrating end to your Lu 177 journey. But, as usual, you approach it with your typical zen-like "life is beautiful" approach - which both lifts my spirits and fills me with melancholy. May your homecoming be a joyful one. - Joe M.
Sorry that LU-177 has not worked for you. I will continue to cheer you from the side as you move to your next treatment. Keep the faith and you will be well. God bless
And this tasted better than it looked because I just kind of threw it together ...but it was delicious! I just realized I forgot to thank you as well... but I really appreciate your help in coming to a decision .J
Thanks for sharing John and I'm hoping you get better results on your next treatment. Looks to me like you are making good decisions about your next steps and not wasting time trying to squeeze blood out of a stone.
Love to see the amazing food too!
Please keep us posted on your journey. You are an inspiration for many here!
Jack Stack is one of my personal favorites. I've also ordered from them and they deliver it frozen in a container with dry ice. Not as good as being there, but still enjoyed it.
I also liked Oklahoma Joe's when I was there, but that's changed names now to something else. I think it's called Joe's Kansas City. I'm a big fan of their ribs.
That was the original Oklahoma Joe's restaurant in Kansas City. They served BBQ items and sides from the back of the inside of a gas station. Probably the best ribs I've ever had. Atmosphere was kind of cafeteria-like, but the food more than made up for that. It was recommended to me by locals when I worked there.
Sounds delicious and I have a Oklahoma Joe smoker which has gotten little used since being dx. DDD had a few gas station/truck stop restaurants over the years. Now that my diet has changed I am less likely to look for one but if I am ever in KC I will be eating some BBQ.
I'm so sorry Lu-177 didn't work for you. I admire your positive attitude during this difficult season. Have a safe trip home and may God put his hedge of protection around you.
My thoughts and prayers are with you John. Good to see that you have your friends supporting you. I hope something else works for you, maybe immunotherapy or something like that.George
Awesome for you to get on this trial and your family moved. Sooo impressive. Safe slow journey back home and we are thinking about you and your sweetie.
I am sure you feel the love from so many of us here. Safe travels home. Hope you continue to feel "ok". I suggest you start posting pics of the ice cream places you stop at along the way.
So sorry your trip didn’t have the results we all hoped for, John. Wishing you safe travel and an enjoyable trip home with Richard (with many good meals along the way). You must be looking forward to lots of puppy kisses from Sparky (who is absolutely adorable!) Pets are such a blessing.
You have a special throne in this group reserved for grace, courage and kindness. No one here could possibly leave one of your posts feeling sorry for themselves. We have all learned much from you.
So sorry it did not work out but once your blood work is good, back home with sparky and do chemo things will hopefully improve, keep fighting you are an inspiration to us all.
G-d bless you. Safe home. If we don’t hear from you, we will know that you started the party in heaven. And one day, we will all join you. Quality of life is so important and with my husband and I it is often about the food😉
Thank you for the update and admire your positive attitude through these tough times. Hoping the chemo will be a great success for you. Goodluck and have a great road trip! 😎
I admire how you make friends…as you travel for treatment; friends who will fly to help drive home, and on this forum. Your zest for life and for sharing this is wonderfully appreciated.
I've seen your name before on posts and perhaps have briefly read them. This post I saw as my eyes opened for the day and I felt compelled to read it. Then I went back and read ALL of your posts again and again. Strange how my spirit needed to connect with you perhaps as everyone in this group that no one wanted to be in has. I think you are extraordinary and if there is a miracle with your name on it which I'm sure there is may it appear to bring you strength.
Ok so now that my spirit found you you are stuck with me and I've been known to pull miracles, husband with keytruda,daughter who can't walk or talk but just came from her college graduation and little Annie our shitese who was dying yrs ago but thankfully almost 13yrs and acting like a puppy. So I'm expecting and praying for a miracle from you!!! I am the one that is blessed now that I know you.
Dear John, I'm sorry to hear this treatment didn't work for you. If only diligence, enthusiasm and a great attitude were curative! You're a joy to follow and I look forward to your posts. I know you'll be happy to get home and here's to the next leg of the journey. Thinking and praying for you and your Richard.
A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us.-Steinbeck
Safe travels. Your journey continues, your passion and spirit still strong...
Thanks for your update to all of us, John. Your dinner engagements ahead sound like a huge testimony to how popular you’ve become there! Everybody is rooting for you. And your experience is now knowledge for us all, though I wish it had been a resounding success. Nevertheless, you’re here to tell the story and you have plan B lined up. How smart to contact Dr Sen and her advice should give you great faith in your Onc here in the States.Have a safe and fun trip home.
E
Ps did I hear Bocelli and Brightman singing, Time to Say Goodbye, to the MidWest, or was that just my imagination?
Yes it is finally time to say goodbye to Omaha, the great plains, the Midwest, and the amazing people that inhabit this place. We will missed all of it. I can’t think of anyone who says goodbye better than those two singers!
Enjoy your trip home, greatjohn! I just got home from a road trip through Central Oregon for a week. Pretty much all back roads and saw a beautiful part of the world that I had never seen before. So take those back roads and keep off the freeway! What’s the hurry, right? Best wishes!
So many people seem to be going “nowhere fast” I Actually have my calling card printed with my slogan which is “I’m going somewhere, slowly” This is been my motto for the past 20 years! I always enjoy the journey at least as much as a destination.
Last time I got home for a short visit he gave me at least 1 million kisses before letting go of me and when we were sleeping together he kept waking me up to give me kisses through the night. Thanks 🙏🏻
Thank you GJ for the update. I’m really sorry that a second infusion of LU is not an option. Have you had a liquid biopsy to determine what gene mutations you have? If you have a high tumor burden then Keytruda may work for you. Just another option to think about. We know the roller coaster of hope and defeat very well. Fortunately Keytruda is working well for my brother. Even if you have had a previous test it would be worth testing again because mutations develop. Whatever path you take GJ i’m sure you know that there are many on this forum who care about you and are keeping you in their prayers. I will keep the faith for you 💞
Thank you so much! I fairly recently had a liquid biopsy done and they were able to find no defects. I think it was about five or six months ago. I’ll check with my doctor to see if she thinks things might have changed .
Sorry to hear this treatment didn’t work out John. God speed on your drive home. My thoughts and prayers are with🙏🏻
I cannot thank you enough for sharing your info and your positive spirit. This goes for everyone here. What you (and everyone else) are doing just by being here matters to many men. I wish you all the best.
Sorry to hear that you didn’t respond to the LU177 as I was really hoping for great success. Hang in there brother and hope you are able to find a new treatment.
You are a warrior of the first degree in this fight.
Wish I had half the friends you have. And half of your lunch. Sounds like the Lu177 really stirred the cancer cells up. Maybe that will make them an easier target for your next go at chemo, if that is your next decision. I won't throw out any suggestions, that would just be silly. Keep on enjoying. That's what you do best.
These ROs in Canada will zap all your mets with SBRT - provided you have no more than 50 mets: advancesradonc.org/article/...
It’s not without great effort on your part. You always go for it ! That’s why we love you . At least seeing sparky and being back home will be good. Safe travels . I hope that you feel better once home.🙏❤️
If you still have very low neutrophil numbers, be sure to stay masked and sanitary as you wend your way back home through several of the Southern states. Stay safe! Hope you have a good trip.
A while back, I was doing a double chemo protocol for my own metastic melanoma (above and beyond the advanced prostate cancer). Three times in a row my Absolute Neutrophils Count crashed. It was "fixed" in short order by the use of a colony stimulating drug.
My Onc happened to use Zarxio. IF you are now free of any such restrictions associated with the Lu-177 Trial, you might ask about one of these potential drugs.
"G-CSFs stimulate the production of neutrophils and include the following FDA approved products: filgrastim (Neupogen), filgrastim-aafi (Nivestym), pegfilgrastim (Neulasta), pegfilgrastim-jmdb (Fulphila), tbo-filgrastim (Granix), filgrastim-sndz (Zarxio), and pegfilgrastim-bmez (Ziextenzo).
I too will not be sad because I met such a wonderful, caring and food lover man❤️I don’t know you in person but I so grew to care about you. You have one of the biggest heart for your family and friends and Worry more about them then yourself. I am so hoping for chemo
Hey John, it's been a while since we've spoken...I'm sorry that 177 did not work for you hopefully when you get back to Miami seeing sparky will raise your spirits and your levels as well.. Sending prayers for strength, comfort and a complete healing 🙏 of body and spirit 🙏 Your fellow warrior in Tampa...
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