Time to say goodbye— to Omaha and LU 177 - Advanced Prostate...

Advanced Prostate Cancer

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Time to say goodbye— to Omaha and LU 177

greatjohn profile image

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.

124 Replies

I really admire you man.You have helped so many here.

All the best.

greatjohn profile image
greatjohn in reply to dixiedad

Thanks for your kind words

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. 💚☘️

greatjohn profile image
greatjohn in reply to dublin1717

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.

dublin1717 profile image
dublin1717 in reply to greatjohn

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

greatjohn profile image
greatjohn in reply to Anomalous

I love her from a far! She took the time to speak extensively with me after a long day of work.

GreatJohn,,,If Dr Ishita Sen says it...close your eyes and believe it...She is a super trooper when it comes to Lu177.

greatjohn profile image
greatjohn in reply to LearnAll

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.

pilot52 profile image
pilot52 in reply to greatjohn

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.

Jim & Nancy.

You guys are the best! Thanks so much for all your wonderful words. They are greatly appreciated.

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.

greatjohn profile image
greatjohn in reply to SeosamhM

Thanks for such kind words Joe! Life is a journey and beautiful!

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

greatjohn profile image
greatjohn in reply to bellyhappy

Thank you so much!

Great John,

Difficult decision was put upon you and I think you made the correct call. Enjoy your trip back to Florida.

Please keep us informed of your next treatment decision.

P.S..If you encounter a man with no balls on a bicycle after crossing the Florida border, that'll be AddictedToCycling. Don't run him over.

greatjohn profile image
greatjohn in reply to TomTom1111

I’ll try to stay alert for just that! LOL. Thanks so much for your kind words of encouragement.

treedown profile image
treedown in reply to greatjohn

Speaking of A2C did you ever talk to Dr Onik. A2C the only one on this forum I can think of who was put on a outside the box treatment plan from a Dr.

my STRAVA name says it all 👍 for better or worse

Maybe, but so far its hard to argue about the results IMO.

Always surprised to wake up so just taking things one day at a time the best I can. My new mantra --- "I will strive for 145 if still alive" 👍👍

Me too on the one day. I like the new motto it has a nice ring to it :)

It is dinner time, and you just made me so hungry!

Nal

greatjohn profile image
greatjohn in reply to Nalakrats

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!

greatjohn profile image
greatjohn in reply to gregg57

Thanks Gregg! And all the best to you.

If you can stop in Kansas City on the way back, they have amazing BBQ.

Boywonder56 profile image
Boywonder56 in reply to gregg57

Jack stax .....uhmmmmm

gregg57 profile image
gregg57 in reply to Boywonder56

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.

Fuzzman77 profile image
Fuzzman77 in reply to gregg57

Hell yes to Oklahoma Joe’s and the place on 95th and Metcalf, Jack Stack BBQ!! Love both of them!!

gregg57 profile image
gregg57 in reply to Fuzzman77

My favorite restaurant is in a gas station.

treedown profile image
treedown in reply to gregg57

What kind of food? Was it on DDD?

gregg57 profile image
gregg57 in reply to treedown

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.

treedown profile image
treedown in reply to gregg57

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.

SPEEDYX profile image
SPEEDYX in reply to treedown

I can see you as a Pittmaster!!!

treedown profile image
treedown in reply to SPEEDYX

Before dx I twice smoked a full brisket, full pork shoulder, and a lamb leg roast. I dropped the lamb after that.

SPEEDYX profile image
SPEEDYX in reply to treedown

Sounds Good...I always like traveling down south and tasting best BBQ...Only now getting some decent BBQ places here on Long Island

treedown profile image
treedown in reply to SPEEDYX

We don't have much here in PNW which is why I started smoking my own. Prettt sure it won't compare to what I could get in KC,MO though.

SPEEDYX profile image
SPEEDYX in reply to treedown

Yea they have some great recipe's handed down from generations

greatjohn profile image
greatjohn in reply to gregg57

We found a place accidentally in downtown St. Louis they had amazing barbecue.

To a safe and happy homecoming, and reunion with your precious pup, surrounded by gossamer wings!

🐶👼🌈🐦🐤🦋

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.

greatjohn profile image
greatjohn in reply to Lasered

Thanks so much !

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.

greatjohn profile image
greatjohn in reply to NWLiving

Thanks so much 😊

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.

greatjohn profile image
greatjohn in reply to GoBucks

That sounds like a plan! Thanks for the kind words.

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.

greatjohn profile image
greatjohn in reply to Dett

Yes yes yes....Thank you

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.

Schwah

greatjohn profile image
greatjohn in reply to Schwah

A comfortable recliner will do... lol. So much for your kind words!

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.

Let me add i respect your wonderful posts and have a delicious trip.

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.

Thankyou so much for sharing your experience. Which hospital did you attend to see Dr Sen? If you dont mind to share. God bless you

greatjohn profile image
greatjohn in reply to Big_Mcc

His own center, which is called Urology Cancer Center. Also called Xcancer. And in Omaha.

Big_Mcc profile image
Big_Mcc in reply to greatjohn

Thankyou

greatjohn profile image
greatjohn in reply to Big_Mcc

I spoke with her by phone from Omaha. She listen to my history and gave me her advice.

Admire your courage and attitude. Love how you enjoy life. Wish it could rub off on me. Best of luck with your journey.

And to you. Best advice I can give is to always (every day) give thanks. If you feel blessed, you are blessed. Good luck on your journey!

John, I am saddened by your news. Hoping all the best for you.

Magnus

greatjohn profile image
greatjohn in reply to Magnus1964

Thanks so much, but don’t be sad and as I am not. The show must go on!

I love French dip with horse radish.

Travel safely and well, my friend, on this trip home and on all of them!

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.

greatjohn profile image
greatjohn in reply to Vindog29

Omg ... your amazing and kind words brought tears to my eyes. I feel blessed 🙏🏻gJohn

Vindog29 profile image
Vindog29 in reply to greatjohn

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.

Drive careful my friend. Never give up 🙏🙏🙏🙏

As I said above, the show must go on!

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.

🙏❤️

greatjohn profile image
greatjohn in reply to SuppWife

I thousand times thank you for your kind words!

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...

greatjohn profile image
greatjohn in reply to Jvaughan0

I have always loved Steinbeck perhaps now I love him even more. That was a wonderful quote and so poignant.

Blessing and prayers sent your way!

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?

greatjohn profile image
greatjohn in reply to Lavender22

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!

greatjohn profile image
greatjohn in reply to bean1008

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.

bean1008 profile image
bean1008 in reply to greatjohn

Especially in first or business class! 😉

You just know Sparky is going to be sooo happy to get you home John. Enjoy

greatjohn profile image
greatjohn in reply to Willydad

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 🙏🏻

Have a great trip home and I am sure you will enjoy every moment !

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 💞

greatjohn profile image
greatjohn in reply to Faith1111

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 .

J

Faith1111 profile image
Faith1111 in reply to greatjohn

Yes, especially if you’ve had a lot of new Mets. Worth a shot

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.

Jack

Thanks for sharing your journey. Get better soon so treatments can continue!

Be safe on the road my friend. God will be with you. please remember this is the end of a chapter but not the book.

greatjohn profile image
greatjohn in reply to Canoehead

Definitely 😊

Wishing you luck and peace on your continuing journey. We appreciate the updates.

greatjohn profile image
greatjohn in reply to JPnSD

Thanks 😊

Hello, GJ. Not to be redundant but just want to echo everyone's wishes and sentiment. Best of luck to you in your journey.

Thanks 😊

John, I am really sorry for all your troubles and I wish you the best of luck. Keep us posted. Love your pictures of food.

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.

greatjohn profile image
greatjohn in reply to monte1111

Thanks Monte....Got to keep on keeping on!

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.🙏❤️

greatjohn profile image
greatjohn in reply to Lulu700

Thank you so much!

Lol, I'm sorry, but when I seen the steak, I immediately looked for the horse radish!

You're spot on in your tastes ;) it looks good and like others has now influenced my taste buds!

My wife has complained to me all too much lately that it's ALL (life) about the food! Hahaha...

As noted by so many, I'm sorry to learn that the LU-177 option is off the table for you. Be safe on your journey and godspeed traveling home!

Best Regards

greatjohn profile image
greatjohn in reply to Cooolone

Thanks so much and happy eating!

Hey brother, thanks for keeping us updated, we appreciate your positive insight. Have a safe trip and we're still pulling for you!!!

John

You are a warrior who fights a good fight.

All our treatments take courage and you have shown you have that in abundance.

Enjoy your trip back home, recover and I wish you the best with future treatments.

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).

greatjohn profile image
greatjohn in reply to ctarleton

I will be getting neulasta when I get home. Thanks 😊

Wishing an easeful trip home. May you find a way to cultivate joy along the way. Stay safe on your way home. 🙏

I'm sorry John for you that this wasn't the one for you. I'm praying for you as I do for all of us daily. Good luck and God bless you . Randy

Thanks Randy 🙏🏻

Greatjohn my friend Thank you for being a friend to many of us here

The many times your messages lifted me

Even now

Do all the things you love

But most of all

LOVE

Wishing you all the best and thank you so much for your such kind words!

I too am very sorry this treatment did not work for you. Wishing you a safe trip home, bet you can't wait to see Sparky !God bless

Kim

greatjohn profile image
greatjohn in reply to 16starsky

I’m ready for his thousand kisses.🥰

God bless you on your cancer journey

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

Will work 🙏❤️ Sharon

Thank you for your beautiful and incredibly kind words! U2 seem very special as well! Good luck on the journey!

Best on your trip home and find some great food! Very special. When you get home enjoy Sparky’s kisses!

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