Just read a private chat from 2 years... - Advanced Prostate...

Advanced Prostate Cancer

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Just read a private chat from 2 years ago...This was my reply. Lu-177 thoughts (then/now) and the reality of "life in Omaha"

greatjohn profile image

the following words are from a chat with another member here from 2 years ago. Wow...so much has happened...nothing really good...but my prediction of doing Lu 177 was spot on. I had (at this point) viewed it as a miracle drug coming up. Now that I've done it...and had (so far) horrible results and horrible side effects...this post seem so amazing. My oncologist(back home) says she has had two clients who (like me) did the Lu 177 and both did badly (had flare ups) with first treatment. They did the second treatment.....and the results are. "they both died shortly after the second treatment". After getting advice from HER and also from the doctor here to do the second treatment.....well....you know what I'm thinking (LOL). Affairs are already in order...but I do not want to die in OMAHA ! ! ! yipes... Over the next few days waiting for a sign....(and hoping a UFO lands and announces a miracle cure for prostate cancer)

Life is Beautiful.

p.s. still feeling and looking great...hard to believe...but thankful every day! ! !

****July 2/19****I did do Provenge (fairly new) over the past summer. If I don't get a "miracle" remission on just Lupron and Xtandi (and BIRM and melatonin and mushrooms and lighting incense and chanting)....then I am probably seeing the Lu-PSMA kind of thing in my near future. I asked my oncologist for gene mapping a couple of visits ago. She said they could use my biopsied material...I'm waiting to hear if I have any groovy mutations. This Lupron crap (castration) has to be the worse of the things we do...because we know it will NOT end...short of a miracle. Hence I keep plugging along and hoping for a miracle ! I think you were 55 on diagnosis...I was 57 (now 62) ....but I didn't get the added fun of STAGE 4 aggressive and castrate resistant until I almost 60! What a present! I don't think of this as a battle, but rather a "journey"...(mostly up the mountain)...with ever turn a new danger, a new fear...but a NEW VISTA (kind of like the marked "vistas" on scenic highways. A place to go Wow...and then move on.

**I hear more about herbs, diets, etc and combinations of old drugs than I do about new actual drugs...but there are a few in the pipeline...if we can hang on as we scale the mountain...****

71 Replies

Have you heard anybody say or have you read about a bad result from first treatment and a rebound of good results after the second ?

greatjohn profile image
greatjohn in reply to treedown

The doctor here says he has.

treedown profile image
treedown in reply to greatjohn

Did he say how often compared to bad second treatment responses. Is one weighted over the other. Am I right you have decided to go for #2 regardless?

greatjohn profile image
greatjohn in reply to treedown

Yes... If my ANC number is high enough for me to do it I had decided to look at that as an omen and go forward.

treedown profile image
treedown in reply to greatjohn

Here's to good ANC #'s then. Damn, I hope this works out for you and your boys. Assuming Sparky is a boy.

greatjohn profile image
greatjohn in reply to treedown

He’s a boy like me.... we have both been fixed! LOL but still boys🥰🥰🥰

treedown profile image
treedown in reply to greatjohn

So many of us on this site have been fixed. Now we know what our dogs feel like :). Maybe its Karma?

greatjohn profile image
greatjohn in reply to treedown

Sparky was very patient convincing me that it wasn’t a big deal... he slow down for one day and was ready to go the next day... and it was pretty much the same for me! I have truly enjoyed not having to go monthly for Lupron shots🥳🥳🥳

treedown profile image
treedown in reply to greatjohn

For me that's a no brainer when the time comes. and the same for all of my dogs but 1 that have shared my life over the last few decades. One day off, sometimes the same day and back to normal the next. That's a relevant observations IMO. Good, no great luck, John I think it safe to say we are all rooting for you.

Lulu700 profile image
Lulu700 in reply to treedown

Karma? Being fixed is a hell of a thing .

treedown profile image
treedown in reply to Lulu700

Just a stupid joke about having castrated 5 of my dogs. Sorry if it offended.

greatjohn profile image
greatjohn in reply to treedown

Being fixed compared to what I am facing, what we almost all are facing dare I say what we ALL are facing is really still a piece of cake. 🥳🥳🥳

treedown profile image
treedown in reply to greatjohn

I agree John, at times its hard to see so many fine people dealing with this beast. Each new treatment brings hope and danger and all we can do is hope and pray and wait it seems.

You are such a breath of fresh air , brother, the entertaining way you write. I so wish for no. 2 to be successful

greatjohn profile image
greatjohn in reply to Anomalous

Thank you so much that means more to me than you can imagine and I am humbled! Trying to be realistic and optimistic at the same time is kind of schizo LOL, but I’m used to that!

gyancey profile image
gyancey in reply to Anomalous

Well said Anomalous!!

No doubt that Lu-177-PSMA-617 was oversold on this forum, and without proper recognition of potential side effects. That's why I wrote this a couple of years ago:

prostatecancer.news/2019/12...

But many patients derive great benefit from it, even more than from chemo. Also, many patients suffer minimal side effects.

greatjohn profile image
greatjohn in reply to Tall_Allen

This appears to be true and according to my doctor here the fat lady hasn’t sung yet. He still thinks I might get a great result from the second treatment based on what he sees.

Tall_Allen profile image
Tall_Allen in reply to greatjohn

I think it's a reasonable precaution to get an FDG PET scan in addition to the PSMA PET scan.

CountryJoe profile image
CountryJoe in reply to greatjohn

Walking on thin ice close beside you, my brother. Stay strong and be thankful for the beauty that awaits us all.

Life is beautiful thanks in part to a few true believers such as yourself. Home is where the heart and mind longs to be. Cancer cells be damned. You don't need a UFO sighting to get there.

I truly hope that the second Infusion is successful ! Your keeping a positive attitude which is a key component to survival. Have a huge Omaha steak and look the cancer dead in the eye and chuckle. Looking forward to hearing from you and your culinary choices years to come!

Was wondering how you were….Hoping for the best for you. What a journey. Hey is Ted and Wallys Ice Cream 🍨 really that good? Feeling like going out at all?

greatjohn profile image
greatjohn in reply to NWLiving

we went to Ted and Wally's a few times when we first got here. It's good. We found a place we like even better in a mall (OakView) very near us. NO lines...and much more convenient. I'm still getting out...it's just very hot here so not a lot of walking...with my hemoglobin so low I'm short of breath a lot and just not full of energy. Happy 4th.

Hang in there. Don’t know if you can do the 4 x4 breathing. Four counts breathing in, four to hold, four to release, 4 to rest. Grab as much goodness out of each breath as possible. Our dog’s birthday is on July 4th. We got him right after My hubby was diagnosed and now he is 7. He wants you to feel better too.

Dog on patio
greatjohn profile image
greatjohn in reply to NWLiving

So cute and he is the same age as our Sparky

Fangs also sends all her love😽

LaFanga
Lulu700 profile image
Lulu700 in reply to Fanger1

La Fanga!

We all yearn to go back home at some point in our lives. Maybe it's time to go back home John.

Prayers for you my friend. As you go back to your home may that joy carry you like angels wings to what is next for you. 🙏🙏🙏 Arlis

Good luck with everything. Your attitude alone means you deserve the best. Whatever happens your attitude and fight has been an inspiration to me.

Wishing you all the best...🕊️🙏❤️🕯️

John,

I read all of your posts and I'm hoping that something is about to help you in your "journey". I wish that I could offer some kind of encouragement; however, I feel that your positive attitude will keep you going for many more years.

As for dying in "OMAHA", perish the thought! According to my uro who performed my biopsy 17 years ago, I was destined to expire in Chicago ~12 years ago. I said, "Screw That", when I go I want my ashes to be scattered in the Gulf of Thailand right in front of my condo!" My Thai GF who was not familiar with the word 'cremate' asked me if I want to be "barbecued" in the local temple?

All my best Bro!

greatjohn profile image
greatjohn in reply to ronronHU

Thanks 😊

Many of us on this forum have been following your journey. Your posts are greatly appreciated and useful, especially about Lu177. It may possibly be a viable treatment option, but clearly not always. A huge reality check for all of us. As with a lot of treatment options, no one knows their effectiveness until after the fact. But we all keep trying.

After everything you've experienced, it's good to hear that you are feeling great.

🙏💪👍

Very difficult decision indeed. All in. You need more information. And it might not be forthcoming from inside trial protocol. I would try to get a prompt telemedicine consultation with a very experienced Lu-PSMA clinician. GenesisCare in Australia as one example who provide these. To answer the question of what portion of those men who do badly after the first treatment go on to do well with the second? 💪💪🙋‍♂️💕

slpdvmmd profile image
slpdvmmd in reply to MateoBeach

What was your experience with GenisisCare??

greatjohn profile image
greatjohn in reply to slpdvmmd

I have had no experience with them.

MateoBeach profile image
MateoBeach in reply to slpdvmmd

Genesis Care AU seems very good to me. Progressive yet careful. They were willing to treat me even while still hormonal sensitive. And upon my request we’re willing to arrange Veyonda with treatments. That also can arrange authorization to enter Australia during COVID restrictions. All in all 👍🏼👍🏼👍🏼 However my OSMA scan showed only pelvic lymph nodes and no mets elsewhere. So they agreed with my RO that pelvic LN RT was best treatment plan. This has worked well so far so I have not gone there for Lu-PSMA treatment yet.

GJ,You certainly seem to be a wise-old-soul with a sobering yet funny light heart. I am hoping those ANC numbers rise and that a second round of this Lu-117 is a success.

Besides this, is there a plan B? rechallenging anything from the past?

Best always-E

greatjohn profile image
greatjohn in reply to Lavender22

My oncologist back home says my big option is going back to another round of chemo if my ANC numbers improve as well. With these numbers I can’t even qualify for chemo.

I Will be cheering you on to a second successful infusion of LU177...The Angels will be with you and they will protect you from any harm. As I had said before, your positive attitude is half the battle won. And all our prayers here will do miracles for you.Amen

Dear John, I think about you often. Your posts are something that I look forward too so I can understand the realities of this disease. Oddly I found myself waiting to hear from you after you ventured to Omaha. I don’t know you but I was worried about you. You are an amazing person; such a force of nature. It’s hard to imagine how you care for yourself while caretaking for your dependent lover and sweet loyal dog. I try not to contemplate my beautiful husband entering this stage but I know one day it will come. He is my oxygen and to think of life without him is most unbearable. Anyway, I am sending you BIG hugs. Stay strong my friend.

greatjohn profile image
greatjohn in reply to Sam1962

Such beautiful and kind words. Thank you. I am back to feeling my crazy optimistic self today. Taking one day at a time and enjoy!

John, hoping you catch a break soon brother. In the meantime, your courage, strength, and the way you lay your soul out there for everyone to see, inspires me to be a better and stronger person, thank you so much for that! Stay strong and take care brother, we're still pulling for you!

greatjohn profile image
greatjohn in reply to ocman

Thanks! And I am still pulling for myself! As I said just above I am back to my crazy optimistic one day at a time kind of happy self!

As Rocky would say "go for it." We are on Lu-177 in our household, My husband and I wish you the best. You are AMAZING. And Bodhi, the border collie sends you all hugs and kisses.

greatjohn profile image
greatjohn in reply to zengirl

I was just reading up on your profile and I don’t see you mentioning when your husband started the Lu 177? How’s he doing? Is he in a trial or going abroad? Happy 4th.John

zengirl profile image
zengirl in reply to greatjohn

Oh, sorry. So much going on around here. I only join in sporadically. He is in the UCLA trial. So, he has been fighting PC for 24 years. He has been through everything you can think of. We were told when he was diagnosed at 52 that he might have 1 1/2 years to live. First treatment of Lu-177 in early June. Blood taken in late June, first, then received two days later his PSA. CBC is low from Lu177 treatment. However, PSA went from 42.9 to 4.2. They checked results of the PSA several times to make sure that is what it is. I have to tell you that he lost his sense of taste and smell from Lynparza back in May of 2018 and we almost lost him that summer. Severe dehydration. He has lost over 40 pounds since then. However, we started acupuncture (finally until years of begging him to go) and he is a very disciplined patient. Since then although no sense of taste still, he is eating a whole lot more. I believe that acupuncture and being off of chemo and Keytruda has helped. If you ever want to talk with him in person, let me know.

greatjohn profile image
greatjohn in reply to zengirl

It sounds like he’s had pretty amazing PSA results with the first round. You might’ve read my PSA went up from 217 to almost 600 after the first round. I don’t know what the right thing to do is, but I’m pretty sure I’m gonna stick with it and try one more round if my blood numbers get well enough for me to do it. Right now all of my numbers are low especially my ANC. Best of luck to you both and I hope he does very well on the second infusion.

zengirl profile image
zengirl in reply to greatjohn

You get well. I know this is a difficult decision. Is there anyway we can help? I believe in the power of prayer so you are in my prayers. But, please you can message me if you need our help in anyway.

slpdvmmd profile image
slpdvmmd in reply to greatjohn

Greatjohn, I am new to forum and exploring Lutetium. If possible could you tell where you are receiving therapy.

greatjohn profile image
greatjohn in reply to slpdvmmd

Dr. Luke Nordquist, Omaha Nebraska

Life is beautiful because you are beautiful! Thank you for posting this!

Humbled

Like so many others here I appreciate you and your spirit more than you can imagine. I think of you often and am always glad to see your updates. You have such a beautiful soul. 🙏🏻❤️

greatjohn profile image
greatjohn in reply to SuppWife

Thanks 😊

hey greatjohn ... possibly consider checking-out envita.com ... best wishes ... Nous :)

greatjohn profile image
greatjohn in reply to Nous

Will do

Thank you so much for updating.

I enjoy your writing and think often about what you are going through in Omaha. No need to reply but just know that you and your husband and dog, and your Omaha adventure, are in my thoughts.

Might want to stay in Omaha, GreatJohn, where six months seems like 5 years.

greatjohn profile image
greatjohn in reply to reb77

time has been going slow as molasses

Your first post reflects hope, please keep that hope with you now. 🙏

greatjohn profile image
greatjohn in reply to Mikeski

well...I'm reading this comment at a most poignant time. I just got my latest PSA from my Oncologist in Miami just an hour ago.....in just two weeks it's gone from just under 600 to 932. It seems like it's time for "re-evaluation"...There is always hope but exactly what one is "hoping for" changes. Thanks so much and I looked at your profile...It's so much like mine SHOULD have been...LOL...I caught the cancer super early....but, alas, it was NOT my destiny to ever have a PSA under 1.0 after radiation....it's still been a crazy climb over the 7 years since diagnosis to 932...(ouch)

Have a great night and good luck and continued good fortune on your journey.

J.

Lavender22 profile image
Lavender22 in reply to greatjohn

J, Is there anyway you can boost those ANC numbers? Then perhaps you can move forward with a treatment? -E

greatjohn profile image
greatjohn in reply to Lavender22

I have an appointment to speak with the doctor and have blood work done this morning. But since my PSA has gone from under 300 to over 900 while on the trial with just one treatment I’m having a hard time believing that is a flareup that will be fixed by a second treatment.

Lavender22 profile image
Lavender22 in reply to greatjohn

My husband goes in for tests this Friday- so I know how nerve wracking this must be for you. Find out what all your options are going forward. Best not to put all the eggs in one basket if it can be helped. Especially now.Best of luck!

Again, saddened to read of the recent numbers, just wondering if you had contact with Dr. O. in Ft. Lauderdale? If not and you might like me to see if I can help out, would be glad to do so.

He is just Around Corner from us in Fort Lauderdale...I am planning to check him out upon our return

👍 good luck

Mikeski profile image
Mikeski in reply to greatjohn

I think of hope as giving you the power to make decisions that are best for you, whatever that may be.

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