beating a dead horse? more Lu-177 or... - Advanced Prostate...

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beating a dead horse? more Lu-177 or Sparky?

greatjohn profile image

Sparky's kisses were very therapeutic on my trip home to Ft. Lauderdale a couple of weeks ago (for just 4 days)

I have taken one Lu-177 treatment and in the 8 weeks following my PSA has gone from 217 to almost 600. My scans I just saw have gone from a few spots on bone in pelvic area...and a couple of lymph nodes....to gazillions of spots on every bone in my spine...almost every rib...my sternum, my pelvis, my hips, my clavicle, my head (skull) in 4 or 5 places...and the bone behind my tongue. Oh, and shoulder and thigh bones.

Doesn't sound like a good thing. I'm wondering if I had hit myself in the head with a hammer and had to go to the emergency room for transfusions twice....would I (after healing up) decide to try and hit myself with the hammer again....to see if the outcome was different? to hope for a different outcome?

Is there any reason with such BAD initial results would another shot of the LU 177 suddenly decide to become a "game changer" (as it's being called) for me. So far my game has changed....but NOT in a good way. So sorry this sounds a bit negative, but we all need to be realistic....the News was just touting this Lu177 as a "game changer"....it's certainly not a game changer (in the right way) for everyone. Question...SHOULD I STAY OR SHOULD I GO? ~~I'm 1700+ miles away from home....missing my puppy, my house, my friends....Can this really be a "flare up" that will turn around ? I haven't found anything online that implies this could be the case.

If anyone has seen such...please let me know...as I will be "tossing a coin" soon to determine my fate.

gjohn

70 Replies

I bet the Clash would tell you to stay and give it ONE MORE try. You already have a lot of skin in the game: Roll those bones one more time and go home with no regrets. good luck.

Whoa greatjohn! Sparky looks a fun ride .. I have no advice just admiration for your strength of character .. 🙏🙏🙏🙏

You are in my prayers and thoughts. Sometimes the decisions seem impossible but you've been walking this path for a while. I truly do believe doggies are therapeutic and I too adore their kisses. Peace to you as you navigate this decision. 🙏🙏 Arlis

I agree with Billyboy. I am an optimist perhaps to a fault. Not the same but my brothers PSA took a huge jump up after his first infusion of Keytruda. That wasn’t supposed to happen if it was going to work. Mo wanted him to stop and do chemo. He opted for another infusion and it has now dropped three times in a row. I think you have to look at your options. It’s a personal decision and nobody knows better how you feel or your circumstances than you do. Prayerfully consider all options and I’m sure the right decision will come to you.

greatjohn profile image
greatjohn in reply to Faith1111

Faith...your name which I love and your comment is making me lean towards "staying the course" for one more treatment. I do have a meeting at 4:15 today with the head nurse in the study and I am going to drill her about some things. Thanks so much.gJohn

p.s. "Faith is the substance of things hoped for, the evidence of things not seen."

5to0 profile image
5to0 in reply to greatjohn

Where is that quote from? It’s sounds like a Rush lyric - miss Neil Peart 😞

greatjohn profile image
greatjohn in reply to 5to0

Actually... the Bible🎚

Nukepharmd profile image
Nukepharmd in reply to 5to0

Hebrews 1:1, the faith chapter. We should all read!

I agree with the above comments to give it another shot. From what I can see, you have a lot to potentially gain and I don't see what you have to lose unless the side effects are intolerable or the cost is too high. I can't imagine regretting doing another shot, but could imagine regretting not doing it. Wishing you the best in whatever you decide.

You did so many sacrifices to be there, John, I would personally try one last time but the choice is yours and yours only, do what your heart tells you.You might never know, sometimes things in life can take unexpected turns.

Good Luck and Best Wishes.

Were the scans psma scans? If most of the mets are psma avid it will work. I thought the advice is get a psma scan and another type of scan (chloine?) and see if the mets are (mostly) in the same place….if yes then it should work. If the non psma scan lights up different areas lu177 will not work because those mets dont attract the molecule that somehow binds to psma and the lu177 floats by leaving those mets untouched. Sorry to sound so logical and cold. Thats not what you are after here. But it could help you decide.

I had the PSMA scan before the first injection and I was told I was "psma avid" or I wouldn't have been in the trial. I wasn't allowed to see those scans. My previous scans from a couple of months before were so much better than the scans I just saw "after" the treatment (8 weeks) that this is my dilemma. I only had one PSMA scan. The scans just done are bone scans. Hmmm.

This is what i was talking about. prostatecancerinfolink.net/...

Its a long post but at the bottom was this advice. “Based on this new knowledge, it is recommended that patients who are good candidates for Lu-177-PSMA radiotherapy have both a PSMA PET/CT scan and an FDG PET/CT at around the same time. FDG PET scans are generally covered by insurance; “

And I’m having a bad day, and I really want to just go home.😞

Right now my brain is tired, as I tried reading it it wanted to explode. There’s so much to know and so little time. I am feeling a little discouraged from parts of what I read sent only 1/3 of people have my bad PSA tripling. And it doesn’t sound like a good thing. I’ll look over this more tomorrow.Thanks

Best wishes, greatjohn. Tough choices for you. You qualified for the trial so see it through?

GJ, sounds like a tough choice. When I don't get the result I am hoping for I get disappointed, sad and then angry at the world. That anger soon disipates and leaves me feeling helpless and depressed. So what to do now. You could give up and go home to warm hugs or you can stay and fight. I'd take a walk around my new surroundings and take in the interesting sights. Get a bite to eat, smell the coffee, have a drink and try to be my old self for a few hours-what ever wags your tail. Then I'd make my decision on whether to have more treatment or to go home and see what happens. There is no wrong decision and either way it's the right decision for you. Thoughts and prayers brother 🙏 😎 DD.

greatjohn profile image
greatjohn in reply to Doseydoe

Wise words. Thank you so much!

What was Dr Nordquist’s advice? You seemed to trust his counsel.

greatjohn profile image
greatjohn in reply to Jmr11820

He’s advice that I got a couple of days ago when the results first came was that I should stay and hope for the second treatment to turn around. He said he believed that this could be a flare up. He is currently on vacation in Africa for a couple of weeks. I’m going to watch my blood levels and make a decision with his help when he returns. If my ANC levels are not improved soon I will not be able to stay in the trial anyway, it will be out of my hands.

Jmr11820 profile image
Jmr11820 in reply to greatjohn

Man I wish you all the best. You’re an inspiring guy.

greatjohn profile image
greatjohn in reply to Jmr11820

Thanks so much and all the best to you.

Manohar11 profile image
Manohar11 in reply to greatjohn

Sending you many prayers!!! Hope things turn around!!! 💙💙🙏🏻🙏🏻🙏🏻

Sleep on it- your answer will show itself in the morning.

All great advice - especially the sleep on it. Listen to some great music. Then decide. Faith's response was particularly heartening. One more shot, then home. Unless your gut is telling you otherwise. Then home first. You know where you are, you are the greatjohn.

You can try to increase the PSMA expression with enzalutamide/Xtandi and thus make the PSMA therapy more effective:

eurekalert.org/pub_releases...

It apparently works even if you are already resistant to Xtandi.

gjohn, I am very sorry to hear about what you are currently dealing with. Obviously some difficult decisions to make. I read all of your replies and didn't see one from TA which is unusual since he usually answers most posts. Whatever path you choose you are in my prayers and thoughts. Best, Ron

A single PSMA Lutetium treatment doesn’t do any tricks. You need at least three or four treatments four weeks apart to have a serious reduction of your disease. That being said, in my experience (with now 11 cycles over five years) it does not work as well with bone mets as with ie lymph nodes.

My experience.My lesions were PSMA avid pre-treatment. My PSA was 1.0 pretreatment went up to to 1,3ng after the first Lu177 treatment and down to to <0.1ng after 4 treatments. 6/7 PSMA avid lesions disappeared 12 months after 12mo, See my bio, NB, All mine were were soft tissue lesions,

Difficult decisions.

greatjohn profile image
greatjohn in reply to immunity1

Thanks... I checked your profile out

You really like your Doc there. I think I would lean to his counsel upon his return. He surely seems to care about you and what would be best for you at this point. Some say we should not ask Docs this type of question, for they have different priorities than we do, Still, were he in your position, what would be his thinking? Or advice to a brother or Dad? and why? Then, follow or discard his advice!

greatjohn profile image
greatjohn in reply to maley2711

I’m definitely waiting for a chat with him.... Plus my hand maybe Dealt already as I am not able to get back into the trial for another injection until my ANC numbers go up from about .9 to 1.5 which is the minimum entry-level amount.

maley2711 profile image
maley2711 in reply to greatjohn

I admire your persistence!!! Not sure I will have it should I someday be in your position. Good luck sounds so trite...excuse me, but what else to say in situations like this. Others are more fluent.

Damn John. What does the doctor say 😢. It doesn’t sound like a winner to me but maybe it’s knocking the stuff loose and just showing up on the tests now 🙏. Keep up the faith John. 🙏🙏🙏🙏

Thanks Larry, that’s what I have to figure out with his help

Hey gjohn, although my PSA isn't nearly that high, I went down the Lu177 path also with negative results. Got my first does in Frankfurt in July 2020 with PSA of 1.2, it then dropped to 0.6 and thought, this is working. Went for 2nd shot in Sept 2020 and scan showed lymph mets shrinking by 60%....fast forward to Feb 2021 and PSA jumped to 3.4 and PSMA scan showed 5 new lymph mets and original 3 mets tripling in size. So for me, not a game changer and back on the ADT train with lots of sleepless nights and all the other side effects that make life suck at times. Lu177 can help a small number of us, maybe 5-10%, but for the rest of us, our genetic profile will likely allow the cells the Lu177 targets (and hits) to repair themselves. If you do go back, you may want to increase your chances of success by taking xandi (link.springer.com/article/1...), and possibly using a radiosensitizer (pubmed.ncbi.nlm.nih.gov/186...) along with the Lu177. Good luck!

Have faith John, don't lose hope🙏🙏. You are very brave, a great warrior. Do not stop until you have no strength left. A big hug 😘😘

GreatJohn, I deeply feel for you and understand both disappointment and fear. Yet, you have worked so hard and did so much to enter this trial. After living with my own bone mets for more than 10 years now and working my way through ten treatment stages, I'd ask you to consider doing the 2nd dosing of lutetium. Remember that PSA is not your cancer. At the NIH during 5 years my clinical trial used NaFl PET scans for the first 3 years, but their readings and lightups were always far more extensive than the "regular" scans, and my Principal Investigator discounted them and eventually dropped them from the trial. Those PET scans, he felt, indicated cancer cells that just were not there; some of my normal cells were also gobbling up the NaFl. I have no idea, of course, if anything similar is even possible with your scans. I'm also sorry that I have no knowledge of initial "treatment flare" with lutetium. // You may have other treatment options awaiting you back home in FL, but if they are limited or ended, then a 2nd dosing of lutetium should bind and radiate many of your cancer cells, and it's hard for me to understand how that could be a harmful thing. // But please, know the love and support you are receiving from this group! Peace to you, our brother.

greatjohn profile image
greatjohn in reply to RJ-MN

I’m humbled

Your fate will never be decided by a coin. In reading your post, I already have your answer. You are not surrendering, you are in need of peace. The spirit transcends the flesh always. There is a universe of comfort in Sparky's kiss. You have done everything you can do; you have no need for second guessing or future regrets.

Medically you are making your own decision with a physician you trust. On the support side I know this group is all there pulling for you but it is impersonal since we do not know each other well. Do you have a support group of close personal people in your life? Religious leader? Close family? I find even a few close friends who you can share honest concerns with works. It is okay to be vulnerable and share your fears as well. Since you are in Omaha and they are elsewhere consider a "daily Zoom over a cup of coffee" even if for 20-30 minutes. For me, conversation with good listeners and people with compassion has been very helpful.. We all operate in such different ways, but being alone at a time like this is deadly for me.

I have been in a leaderless Men's Group for 38 years and they are my safe haven for such conversations.

If you like baseball get a ticket for the College World Series in Omaha right now. If you like such things drive out to the SAC museum about 30 miles west and while there drive thru to Zoo's wild animal exhibit. If you are a car crazy, go to Speedway Motors in Lincoln for one of the greatest car collections in the country. These don't cure PCA but they sure help clear the mind.

Do dude have u had it with herbs?

greatjohn profile image
greatjohn in reply to Kevinski65

I tried a bunch of stuff a couple years ago or so like berm. Nothing seem to make any impact. I especially hated the fenben (acquired medicine for dogs)

Kevinski65 profile image
Kevinski65 in reply to greatjohn

Yeah , I remember reading that.

As Fannie Flagg would say, "Don't give up before the miracle happens." Hope you will be able to stay with the clinical trial. But if not, maybe consider going abroad to a country where they have already approved the use of Lutetium with Actinium infusions specifically designed for bone met treatments. Consider contacting Dr. Sen at Fortis Memorial in New Delhi. She will tell you if she thinks you would be a candidate for the treatment options available there. Best to you John.

GreatJohn,

While you need to make your own choice you have put so much time and effort to not give it a chance to work.

I do know some people in the Vision trial saw a rise in PSA before a reduction. I know seeing scans where you look like a Christmas tree, I had that several years ago before I did the Vision trial.

Hang in there and you make the right decision for you! Know all of us are praying for success.

A perspective, John: certainly the Lu you treatment did not cause all of the known and previously unseen mets to grow very rapidly. It seems to have caused them to light up on PSMA scan. This might be reflecting a treatment response. The big jump in PSA might also be reflecting a big dump of PSA from dying PSA cells.I would stay the course. At least for another round.

I am in no position to offer advice, just support. I do believe in you and give you my best thoughts . I have faith in your decisions.

I think that you are feeling the tug of exhaustion, and a bit of hopelessness. If your choice is about whether the treatment makes you feel worse and whether your oncologist is telling you that it often takes a few doses before seeing results, I would consider continuing. Unless the treatment is going to make your quality of life terrible for the foreseeable future and the oncologist says it isn't working, I would stay the course.

If it really doesn't seem worth it from those standpoints, I would head home to see all your friends and your puppy. For me it's about long-term quality of life and the likelihood the treatment helps in a substantive way.

We will be here for you, whatever decision you make. May you be guided toward what is best for you. Take care and take plenty of deep breathes! 🙂

You are a fighter and have been very proactive fighting this horrible disease. You've made great decisions and you will continue to do so in the future. Don't let the disappointment and exhaustion overwhelm you. Talk to your Dr. when he gets back from Africa then make a decision. Which ever way you go, we are here for you. Keep the faith 🙏.

Praying for you, John, beloved of God.

Praying for you Brother Great John. You have been through a lot., just remember there is always hope! That little doggy is rooting for you..So are all of us..pure love brother!

Wings aka Dan in So Cal

Thanks so much Dan and all the best to you🥰

John, whatever your decision, I'll be thinking of you. Your updates are much appreciated.

greatjohn profile image
greatjohn in reply to RayF

Thanks Ray! And good luck to you on your journey.

We don't know each other, but you have had an effect on my life since I joined this world last year. Your words and deeds have given hope and vital knowledge, whatever situation you find yourself in now. Now, I can't begin to know what is right for you and those you love, but you and others on this site have hardened my resolve to fight to the very very last for my family, my 12 yo son, and my dog (though he does not appreciate kisses as a big tough deer hunting mutt...). I would want them to know that I bravely took that chance, while in an ambiguous and scary position, to try to be around. For them to rest easy, not for me. I wish you would have another go, but I would support you to the ends of our earth if you didn't. Just my early stage 4 and immature musings. I don't pray, but I will throw a few words and wishes into the ether for whomever to catch tonight. My very best wishes, clear skies and following winds to you.

greatjohn profile image
greatjohn in reply to Dban

I am humbled by your kind words. With the new day I have decided to go for another infusion of lu177 if my blood numbers get back up to an acceptable level. It’s a bit out of my hands, but my decision is what you have wished🥰Thank you so very much!

gJ

More Lu-177 and then Sparky? I like MateoBeach's reply. Most seem to advise giving Lu-177 at least another chance. Is partner with you? Such a horrible time to be alone. Hopefully your doctor can give you the guidance you need when he is back from Africa. I hope he doesn't give you a case of Ebola. Don't let him touch you.

greatjohn profile image
greatjohn in reply to monte1111

I have decided to go further in the trial as of today if my numbers get better and they reach acceptable levels for staying in the trial. My husband, Richard, is here with me. We will persevere. Thank you so much!

dmt1121 profile image
dmt1121 in reply to greatjohn

We will be there with you!

nereabg profile image
nereabg in reply to greatjohn

Wish you the best😉. And thank you for sharing your experience with us

I wish for the very best with the numbers and the forthgoing trial! Glad your husband is there with you.

I will add my prayers and if your taste buds allow I suggest a hot fudge sundae with some great ice cream. Thanks for your update.

greatjohn profile image
greatjohn in reply to GoBucks

Your suggestion has been noted and I highly approve of it. We will work on making it come true.

Aussiegu profile image
Aussiegu in reply to greatjohn

Hi greatjohn just wanted to say HELLO.

The decision of course is yours and yours alone. I just want to wish you all the best in whatever that decision may be.

I know you will use all the resources available to you to aid you in making this decision, I hope they bring you great help, peace and comfort.

All the very best. Hope you have had the time to enjoy that hot fudge sundae with the great ice cream, as suggested by GoBucks. For what is life without enjoyment.

My Best Wishes

Ian.

greatjohn profile image
greatjohn in reply to Aussiegu

Thanks Ian and all the best to you

Listen to your heart....it will tell you what you need to do next. Let the doctor handles your body and lets God handles your life...God be with you .

John,We live and die by the sword. I completely agree with Mateo Beach above. A rise this dramatic must be a response to the LU-177. We know if you are PSMA avid, there will be a penetration of thousands of cells. That must give off a response. Only you know how you feel. Go with your gut. If you go down, you went down swing’n. No one could possibly fault you for what a strong and brave warrior you have been. See what the Universe has in store for you, and enjoy the journey.

Our best to you and yours,

Mike and Barb

St Pete

greatjohn profile image
greatjohn in reply to Spyder54

I have put it into the hands of bigger than I....I WILL continue IF my blood levels get high enough and they let me do another treatment.

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