Going on hospice: Well, after three... - Advanced Prostate...

Advanced Prostate Cancer
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Going on hospice

Stegosaurus37
Stegosaurus37
86 Replies

Well, after three infusions, I've been taken off the VISION (Lu-177) trial. It wasn't doing me any good and there was starting to be damage to my liver and kidneys as side effects. My cancer was doing quite well, however.

So, for me, there are no further treatment options. My cancer has proven to be far tougher than anything that could be thrown at it. You really have to admire it.

I'm going on hospice now (one criterion is no further treatments). At least I'll be rid of the side effects! It's all new territory now so I don't have a clue what's next. What is, is and we deal with it as it happens. I have the most wonderful wife any man could ever ask for with me on this trek. There aren't words to express how much her love and help mean to me. I am truly blessed.

Courage, mes braves! The way is forward!!

86 Replies
oldestnewest
LearnAll

Sorry to hear this news. The greatest truth of life is that any one who was born..will have to die some day...cancer or no cancer. No one can be immortal.

At this point the goal is to have as much comfort ...as possible...I hope your doctors are compassionate enough to keep you 100% pain free and anxiety free in this news phase of your life. Lots of good wishes and prayers for you and your family.

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ctarleton

I recall that you've obtained permission for some of the atoms from your ashes to make their way to a quite lovely place on Earth after you die. We all should be so lucky as to be able to look across such a lovely view as we remember our dearly beloved ... and even the occasional Stegosaurus. Peace to you and yours.

goo.gl/maps/TQbMspgbYBD6QRcKA

Charles

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Lyubov

Oh, how very sorry I am to read about the unsuccessful Lu-177 effort! How admirable you are! You fought valiantly & move on to the next step with great dignity & reconciliation. You are blessed indeed to have your devoted, loving wife who has stood by you throughout & will keep you in her caring embrace. You & your wife are in my prayers.

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Stegosaurus37

Thanks to all for your concern and prayers. This site is a "band of brothers" and your support means a lot to me.

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Tall_Allen

I'm sorry it didn't work for you. I also am impressed by the power of cancer to use unconstrained evolution to work around almost everything we throw at it. It would be immortal if it didn't kill its host. There are many palliative therapies. One patient I corresponded with got a lot of pain relief from Mitoxantrone, an older kind of chemo that did not increase survival but did relieve pain. Of course, radiation does wonders for pain.

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Fairwind

Have you thought about giving BAT a try ? Low / No side-effect load, and half the time it works ! It usually resets the ability of Zytiga to work again too...Whats your PSA history while on Lu-177 ? Best of luck to you regardless..

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Stegosaurus37

I've thought of it, but I'm not sure. My cancer seemed to be doing fine before ADT and has certainly been doing fine since. So I'm not sure whether the presence of testosterone would make a difference. Still, it doesn't hurt to ask so I'll bring it up with my oncologist.

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Currumpaw

Stegasaurus37,

Use your search bar and find out what you can about BAT. f you decide it would be worth trying be aware that many doctors will denigrate such a treatment. You have nothing to lose and a chance to extend your time and meaningful as well. You might have to find a doctor that will be open minded enough to --go to BAT for you.

You might wish to speak with another member on HU, Oct18.

You say your weaponry is in short supply. With a wife such as you have been blessed to have can you gird your loins one more time?

You know about the Right to Try Act don't you? That could possibly open a door to another treatment, which shows promise, that is at this time undergoing trial.

If nothing seems feasible or promising then be at peace that you have done more than many of us would have done.

My best to you. I will be looking for your posts.

Currumpaw

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snoraste

I admire your strength. Do take some time to look into vaccine/immunotherapies if you have not already. City of Hope had a patient with an extraordinary response if I remember correctly.

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Stegosaurus37

I've been through the immunotherapy treatments I'm eligible for. No good for me, I'm afraid.

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Lulu700

😫

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Christopho

I pray for your continued strength fighting this battle. Do not lose hope. Take time to laugh and make the most of every day. Your posts have added greatly to this website and I hope you continue with your thoughts here.

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AlanMeyer

I believe that we all wish you the best and hope, that when our turns come, we'll be as prepared and at peace as you seem to be.

Your contributions to this group were significant and much appreciated.

All the best.

Alan

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tom67inMA

I'm saddened to read your post, but we will all reach a point where laying down our swords is a better choice than continuing the battle. I do hope that you will continue to post as long as you are able.

You and your wife will be in my thoughts. May this last stage in your journey be peaceful.

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Stegosaurus37

I haven't lain my sword down. The fight still continues; I'm just running a tad short of weaponry. You can lose but you are never defeated until you quit. Attitude is everything; don't lose that.

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tom67inMA

Sorry, I guess I misunderstand hospice, as my only experience with it was when my father-in-law went on it. In that case, have you thought of BIRM or fenbenzadole(spelling?) or any of the other supplements that people here have tried?

Once more into the breach! Fight on!

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Lulu700

You are a strong man ... I’d like to blow APC up with a cannon ..

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tom67inMA
tom67inMA
in reply to Lulu700

That would definitely kill all the cancer, but rumor has it the side effects are a bit rough :-)

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Lulu700
Lulu700
in reply to tom67inMA

Kim Jun Un shot his own uncle with a cannon .. APC deserves no less . We are trying to save the host however .😂. Just a metaphor for my distaste for our mutual nemesis APC .

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Stegosaurus37

I thought that was Quaker Oats.

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tallguy2

You’ve been through so much. I’m sorry to read that you had to come off of the trial. Bless you as you continue life’s journey.

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gregg57

Sounds like you are making the right decision for where you are right now. That's the key: what is the best kind of care for me right now? Often people endure terrible side effects for no gain and deprive themselves of the best care they can get. By being on hospice, you can focus on being comfortable and making the most of the time you have left. If some great treatment option comes up, you can go off and persue treatment.

Really hoping for the best for you. It takes a lot of courage to go through this journey through uncharted territory that we are all on. We are with you in this.

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bitittle

Everyone else has relayed my same sentiments. I admire your ability to realize what is best for you and your wife. You are truly blessed. When my day comes I hope I can approach my waning days with such dignity. You and your family are in my prayers.

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Dachshundlove

Love and peace to you and yours on this journey.

We came from the mystery and we return to the mystery... a giant circle.

I hope you regain a better quality of life through freeing yourself of the treatments— Sending light energy to you

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timotur

Tough soldier, sorry to read that, wish you all the best, stay close to your loved ones. TT

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ucladany

Hang tough my Brother. You and your wife are in my prayers.

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NancyWorld

We were able to get my father a palliative radiation treatment for pain while he was in hospice care at home. His pain was from cancer in the sacrum and hip. It took a little doing to swing it, but we had a great hospice team and got it done, including getting advice from them on transport to and from the radiation clinic. We think it bought him some time, but are certain it helped delay pain. The key word is “palliative”, since hospice doesn’t cover curative treatment.

Best wishes to you!!

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dmt1121

You have an attitude that we all can learn from. You have made choices that you believed right along the way, assessed your viable choices for treatment and when you and your doctors believed that all useful treatments had been exhausted to decide to end treatment and move onto hospice care. You do not seem to be profoundly sad or unhappy with your choice but seem to be more accepting of where you are.

I hope you have been able to enjoy your life along this journey and that now, as you move into this new transition, that you are accepting of what is ahead.

I think you are a model for the rest of moving through the phases of our lives and our disease that follows us. It all seemed summed up by your comment "My cancer was doing quite well, however." This matter-of-fact observation shows your respect for how it can impact your life.

I wish you continued clarity and a peaceful transition. Thank you for sharing your experience and outlook with us.

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Karmaji

Life in our physical robe is an instant in the infinity....

No body is born no body dies......as Life is eternal

Shedding the physical robe is part of journey.....

For the living one never dies.... switches to mental space...

Any way all this creation is creation of our mind.....

If you have energy try to scan book of Jane Mclelland.....

How to starve cancer

An extraordinary journey of Jane and a will to meet cancer face to face thru her own fight....

An old saying

When immersed in Life force

all is joyful

In infinity we are all connected.....

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boseley

Hi Stegosaurus, Sorry to hear that Lu did not work for you. It did not work for us either. My husband was only able to have two infusions, very little side effects and we were hopeful, but the results were mixed and I believe that because the cancer was in his bones quite extensively it was going to be an uphill battle. So now we are in a similar situation and I intend to try and look after my husband at home. He is going to be discharged from our local hospital this coming Wednesday and hopefully with the help of health assistants and equipment from Hospice, and my amazingly supportive adult children and friends it will all work out. Good Luck with the rest of your journey I will be thinking of you.

Howard's wife

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Lulu700
Lulu700
in reply to boseley

Peace to you both on this journey also .🙏

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monte1111
monte1111
in reply to boseley

So sorry to hear. Do wish it all works out. Take care of yourself. Hospice is always there to ease the burden.

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Collarpurple

This is the journey no one wants to go on

But we all will because of this c or something

As a wife I don’t know your pain at this point

But my heart does ache for you Prayers

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immunity1

Indeed the way is forward; you are truly inspirational. You have fought it from every angle and I believe you and your wife will address the next chapter with grace. Thanks for what you have given our group.

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Tmetz

God Bless you, my friend

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RobertReny

We all admire your strength. May God bless you and give you strength, as you continue life’s journey.

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Cmdrdata

Stego, I just prayed for you as you start a new phase of your PC without meds. I pray that you will have time to take care of personal family affairs, time to tick off a few more bucket list, time to spend with your loving family and wife, and most importantly accept Jesus Christ as your Savior. At 77 (my guess after reading your older post), this decision may not be as bad as one would think. If you are able consider each day alive as a gift of God and that He still has a purpose here on earth to do His will and give blessings to others you encounter. Someday, I will also be at the same stage where QoL is more important than life extension by giving up on treatments. I am currently at 73, I have began to think about these things too.

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Lulu700
Lulu700
in reply to Cmdrdata

Christ is King !

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Fitzbruce1

Your strength and acceptance brought me to tears. You are truly a role model for this group. I wish you the best!

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TFBUNDY

A whole bunch of people who don't know you are very saddened by this. I even shed a tear for you, and they take some squeezing out these days. But never give up and think positive through whatever cards are dealt to you. You've seen a lot of good years. My daughter saw 13. Rejoice in what you've achieved over many great times. I wish you well

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j-o-h-n
j-o-h-n
in reply to TFBUNDY

13? Oh Geez.....If I understand your post, you lost your daughter when she was 13. Oh Geez... If that's so, may she soar as an angel..... God Bless...

j-o-h-n Thursday 09/26/2019 5:50 PM DST

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TFBUNDY
TFBUNDY
in reply to j-o-h-n

One of life's many kickers. Accounts for my weird sense of humour like many old souls around here. It's not the length that counts it's the quality. I tell my wife....

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j-o-h-n
j-o-h-n
in reply to TFBUNDY

NOW I sadly tell my wife "it's not the length that counts"....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/26/2019 6:21 PM DST

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Kaliber
Kaliber
in reply to j-o-h-n

when I was young I had to count on my fingers .... now that I’m old and trashed ...

I have to count on them again ...

Just say’in .....

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j-o-h-n
j-o-h-n
in reply to Kaliber

I know..... using all my digits I used to count up to 20 +1, now I can only count up to 20 + 1/3... and on a good day 20 + 1/2....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 09/28/2019 10:43 AM DST

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Lulu700
Lulu700
in reply to j-o-h-n

1/2 of what?

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Kaliber
Kaliber
in reply to Lulu700

Xactly...... ewwwwwwwwwww yayahahahaya

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Lulu700
Lulu700
in reply to Kaliber

😂

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Lulu700
Lulu700
in reply to j-o-h-n

What length?

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Lulu700
Lulu700
in reply to j-o-h-n

🙏

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Lupronzytiga

Praying to God 4 a supernatural healing.

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Lulu700

🙏

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ronnie1943

So very sorry to hear the Lu-177 did not work for you. My husband had qualified, but was denied. He's still in the trial and is now on Xtandi , standard of care.??

So nice to hear you have have a wonderful loving wife by your side. It's so hard to watch your loved one go through this.

Never give up hope.

God bless 🙏🏻

Prayers coming your way. Lynn

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WayneSC

May God forever bless you brother. Earth is only a whistle stop on life’s journey.

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Litlerny

Hey Steg. I am really sorry to hear the Lu-177 didn’t work for you. I really admire your strength and positive attitude in dealing with that news, and what the future holds. When I start running out of viable treatment options I hope to emulate you and become an honorary “Stego-man.” 😎 Meanwhile, I will keep you in my prayers. 🙏. Stay strong.

Mark

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Wdoug

Blessings to you and your wife. You seem as prepared as one can be. Peace!

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Tak-Druk

Thank you for sharing this about your journey. Dying is one of the greatest tasks of living. Bless you and all of us all on this path.

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Bob10

God bless you and your family. I'm praying for you

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sujkap

Acceptance is strength, god bless, will pray for you and your family.

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MateoBeach

Dear Stego, I live in Oregon (as you mentioned in one post you do also), in Bend specifically. I mention it as I have been living with death upon my shoulder too, since my diagnosis in 2007. That ignited my exploration to find the deepest understanding of life and its meaning altogether. I undertook the study of deep meditation from the Kashmir tradition. This has proven to be the greatest gift, providing great understanding and supportive peace, such as I cannot even describe. After 7 years of study I am now a teacher of this form of deep and effortless meditation. And I offer it for free to those approaching the end of life, such as yourself. I am offering this to you if you would like. It takes just one or two sessions to learn and to have the whole practice for yourself. The gifts of such a simple practice are great. My personal blog/website with more info is meditationbend.com.

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Lulu700
Lulu700
in reply to MateoBeach

👏

Reply

Good luck as you take this journey with your wonderful wife. Prayers for lots of good days!

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billyboy3

Sorry pal, but it is the journey most of us will face, sooner or later. That said, I would still make up a short bucket list of some things that you would like to go while here and try to do as many as you can. Even hopped up on Oxyi will still allow you to enjoy some things. Our group here has a drag strip hot rod that we take cancer patients on short tours around town and perhaps others can likewise think of ways to make the last days of our comrades better.

See you on the other side!

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dadzone43

I think that all of your brothers wish you a happy journey.

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Lulu700

May God bless you with love Stego .. I am put a back by your news friend . Whoa nelly .. I too have this type of love at home . Nothing else matters . I am reeling from this news . 🙁😫.. wtf?

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monte1111

As many others are, I am stunned. There are those who went on hospice, and then came back. I seem to detect some hope in you yet. I really hope you stay with us for a while. We'll keep the light on.

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Lulu700
Lulu700
in reply to monte1111

Hell yah monte . We want Stego around ..

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Bunkerboy

Really sorry to hear this. My prayers are going out to you and your family. God Bless you.

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jfoesq

Steep- I admire the way you expressed yourself in your post and hope to be able to deal with my future as gracefully and brave as you are dealing with yours.

All the best

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grahaminator63

Be well my friend. Tough news to hear but your chin is up and you got the love of your life next to you. That all one needs. Prayers for your journey (we're all going there someday)

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dockam

My best to you Brother on this new chapter of your journey. Yay! to no more d*mn side effects. May you have a long and uneventful hospice stay. So, glad to hear that your wife has been/will be with you.

Aloha

Randy

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Collarpurple

I have heard from others that feel like it’s the end. Not that they wanna go they have a peace about it I hope that’s the case that you have peace🙏❤️

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gleason9guy

I salute you. Your spirit remains victorious!

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j-o-h-n

Hey Stegosaurus' are extinct...... But you are NOT.........

A little humor for you:

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/26/2019 5:57 PM DST

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Lulu700
Lulu700
in reply to j-o-h-n

Go Stego!

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Myhubby58

Wow,so sorry to hear that..Myhubby58 is on taxotere.He going for his 3rd treatment..But it ain’t over yet Stegosaurus37..Stand tall and strong..God gotcha..

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SeosamhM

"Courage, mes braves! The way is forward!!"... point taken, Steg! I've been following you since joining this forum last year, and wish you the best... I won't forget the vinyard post... To quote the Kingston Trio (yah, there's a Sinatra version), I hope "It Was a Very good Year"...

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greatjohn

Peace be with you.🌷

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Schwah

We all find Out just how strong we are at our most difficult times. Your strength is an incredible inspiration! How awesome to have a spouse by your side that you feel so strongly about. That is truly a blessing

Schwah

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blueCello

Wow, stegosaurus, you are incredible! What an amazing positive attitude about this nasty disease. So sorry 177 didn't seem to work. You've got to admire the strength of the human cancer cell--too bad we can't launch it into space and blow it to smithereens, permanently!

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j-o-h-n
j-o-h-n
in reply to blueCello

"launch it into space and blow it to smithereens, permanently".

Good Idea but each fxxking cell would probably mutate and return back to earth with an "O" at the end of their names. 👀

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/27/2019 7:00 PM DST

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Lulu700
Lulu700
in reply to j-o-h-n

O noooo!

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Lulu700
Lulu700
in reply to blueCello

“To the moon “!

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j-o-h-n
j-o-h-n
in reply to Lulu700

and beyond...........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 09/28/2019 6:20 PM DST

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