Lu-177 Second time around

[CJ4J]

Hey fellow warriors and caregivers. My husband just got his first dose of Lu-177 (Pluvicto) or as my husband call's it (Pluto). He had the full 6 doses in the Vision Trial 3 years ago with an excellent response. But, as time went by, the cancer came back again and no more treatments were available for him. So, the timing of it's release and approval by the FDA was very timely for my husband. After the brief delay because of the quality hold, he was able to have a 2nd chance to do it again at Mayo Clinic. Mayo did a scan the day after the injection to see how the Lu-177 took. To our excitement, the findings showed excellent tumor targeting of the Lu-177 PSMA therapy to ALL sites of known prostate metastases. It was seen in all areas of previous noted tumors seen on the gallium-68 Pet CT scan from the day before. So thankful and grateful!!!

For those wanting to know how he felt, he experienced pain in the areas where the mets were, which we know is a good thing. He is already on Morphine and Hydrocodone for his radiation cystitis and the stents that cause him alot of discomfort. So, he is able to manage this pain.

His next hurdle is to get the platelets up. His platelets this week were 78, and in order to have the next treatment, they need to be 75. Praying for what seems to be impossible. Hope remains!!

[Tall_Allen]

Wonderful!

[tango65]

Great, bets of luck!!

[Cynthgob]

Does that mean that insurance covered second round of Pluvicto?

[CJ4J in reply to Cynthgob]

We shall see. Since it is FDA approved, they followed all of the requirements to qualify for Medicare approval. The Dr. said, they have to pay it.

[Hidden in reply to CJ4J]

I like that . I agree with the doc! 👏👏

[NWLiving]

We are on our first round. Yep re pain. Don’t know what the 2nd scan will look like.

[CJ4J in reply to NWLiving]

Hopefully the pain will lesson soon 🙏

[hellohelp2]

You wrote that your husband was at Mayo for the Pluvicto? and that pain in bone mets is good? My husband is taking Xtandi and the pain has gotten worse. At places where there was none before. Is that good? How did he get into Mayo ? We saw a Dr. there 3 yr ago. Do not know if he is taking patients now.Did husbands MO prescribe morphine etc for pain? Thanks for any information and post.

[CJ4J in reply to hellohelp2]

Well, my husband experienced pain after his first time with lu-177. All of his mets were gone by the 3rd infusion per Petscan. The reason I say that pain is good with lu-177 is that's what he experienced the first time and with other SBRT treatments. I don't think Xtandi works the same way, he shouldn't experience pain with that.

My husband has been Dr Kwons patient for 4 years. I still hear of patients still getting in to see him.

His local MO monitors him and prescribes the pain meds. She has an outstanding nurse that responds quickly to our my chart messages.

Hope that answers your questions.

[Willofthewisp in reply to CJ4J]

Dr. Kwon told me he didn’t treat patients with PSA over 1.5 ?

[CJ4J in reply to Willofthewisp]

Never heard that before from him. We are proof that he does treats PSA over 1.5. My husband's PSA was in the 8's when we saw him the first time.

[larry_dammit]

I’ve been watching this treatment, I’m stable at 5 1/2 years on Xtandi but I know that will end sooner or later. Hoping this treatment works as promised 🙏🙏

[CJ4J in reply to larry_dammit]

Wow 5 years on Xtandi, that's awesome!!

[StePeteMN in reply to larry_dammit]

Larry, what's life been like on Xtandi for you? Tired? Any brain fog at all, etc?

[Pjs09011 in reply to StePeteMN]

I was on Xtandi for 6.5 years. Had some pain in mets. Fatigue is issue as well. But I was able to continue working full time and lead a happy, full life.Now I am in Splash trial with Pluvicto. Scans after first injection good.

[larry_dammit in reply to StePeteMN]

Had quit a bit of brain fog early on ,I just figured it was from the chemo, it’s gotten better with time, we’ve been to the ER several times due to medicines reacting with the Xtandi. I’ve finally wised up and won’t take anything different unless I call the pharmacy first. As I push myself more the energy level has gotten better, but nap time is alway nice.

[larry_dammit]

Yes, my oncologist is very happy with me, I am his longest living patient he has that is on Xtandi.

[TheWizardofWesley]

Stay positive, by chance is your husband's Dr, Dr. Eugene Kwon? He's an amazing physician and human being. I'm also a patient there, because at Moffitt they offered little to no help. I'm not up to the 177 protocol, since I haven't had any chemo but I'm hopeful that once I reach that stage I will get the results that you are seeing. Sending prayers for a complete healing of body and spirit 🙏 🙏🙏 only good going forward.

[CJ4J in reply to TheWizardofWesley]

Yes, his Dr is Kwon. He's the best!!! We always leave his appts positive and with hope when we were down coming to see him. We love his personal stories and his humor. He fights hard for you, and looks for ways that other Dr.s won't or can't take because of their limitations. His first words to us this week were, I really worked hard to get you this Lu-177. Others at Mayo confirmed how many phones calls he made to get this going again after the quality hold.

Thank you for your prayers!! We have framed in big letters a verse, "God is able to do exceedingly, abundantly, above what we ask or think"

You're in good hands with Kwon in your fight!!

[TheWizardofWesley in reply to CJ4J]

My sentiments exactly, if I may ask where do you guys travel from, we are traveling from Tampa Fl. continued success 🙌

[CJ4J in reply to TheWizardofWesley]

We are in Kansas City, MO.

[TheWizardofWesley in reply to CJ4J]

Got ya, it would be a long drive from Tampa , lol I'm trying to arrange my next PSMA scan here in Fl. at the Jacksonville campus. Each little trip to Rochester Minnesota costs us upwards of 2kfor a day or two.. Whew.. Jacksonville is only a 4 hrs. drive and we have friends and family along the way.

[CJ4J in reply to TheWizardofWesley]

That's pretty pricey. Make sure you get the right psma to qualify with your insurance. He had the F18 and had to get Galium just to check off the box for Medicare.

[TheWizardofWesley in reply to CJ4J]

Thank you, yes I do have Medicare and Plan F so that picks up what ever Medicare doesn't. I've been pretty lucky so far as out of pocket expenses they totaled $0.00 for the last 10 years .. but my monthly is around 400.00 total with Medicare and my Plan F .

[johnscats]

I think it's ridiculous that you have to have chemo before lu 177 why not go straight in if it works that well chemo knocks the crap out of your immune system which you surly need

[Seasid in reply to johnscats]

You can get it in Finland without previous chemotherapy. One member arranged 3 Lutetium infusions in Finland. After that he had 3 cycles of docetaxel chemotherapy. He was in an early phase in his cancer fight.

[Seasid in reply to johnscats]

I received 6 cycles of early chemotherapy and can't even remember any side effects. Believe me it is much easier on you than the ongoing ADT what we all receive.

[CJ4J in reply to johnscats]

My husband didn't want chemo either. Dr Kwon said, you have to change your thinking. So, my husband got the two chemo sessions to qualify for the vision trial. It really wasn't like he imagined, pretty easy treatment.

[TheWizardofWesley in reply to johnscats]

I agree, .. we were just talking about it the other day.. but it seems that the powers that be on either side of the isle just don't care about us the common man.. Ibet when they go to Arthur Reed they don't have to jump through hoops like we do 😞

[Hidden in reply to johnscats]

We were told you don't need a full cycle of chemo, just one infusion to qualify.

[CJ4J in reply to Hidden]

In the Vision Trial, they required 2 infusions of chemo. I don't know what insurance requires now for Pluvicto.

[paige20180 in reply to johnscats]

Agree John Cats. Dr Kwon sent my husband to Germany for LU177 without ever having chemo but we went to Fortis Memorial with Dr Sen in India late 2021. My husband had a fantastic response and on no medications for almost 3 years. The issue is you have to pay out of pocket and circumvent SOC in the US. Great question and all the best to you!

[Brysonal]

This is great to read. Good luck on the bloods. My 3 x Lu-177 was non SoC early use whilst hormone sensitive so no pain or side effects at all. My onco followed up with 3 x Docetaxel to mop up any PSMA negatives. Fully iced with white blood cell injection after I had no side effects.

Very interested to follow your journey of second use of Lu-177 and huge positive thoughts going out to you from here in the UK.

[CJ4J in reply to Brysonal]

Thank you Brysonal!!

[StePeteMN]

Great to hear the news. Can you comment on L177 delivery? Such as, is it administered in Rochester and if so where? Did he have overnight stays at St Mary's after? ... My dad may be a candidate for L177.

[CJ4J in reply to StePeteMN]

Sure, everything was done at the Charlton building in the Nuclear dept at Mayo Clinic. We stayed in Rochester for 3 days. Labs and Consults the day before, treatment on the 2nd day. 3rd day they ran a scan to see how the lu-177 was recieved, which he had an excellent response. The actual process was quite simple, they gave him an injection for about 15 minutes, then he walked out and I took him back to the hotel and he slept alot. Separate beds and he was really careful in the bathroom as we shared it. The precautions for after the treatment have been lowered since the vision trial. Mainly stay arms length away from children for atleast 24 hours. Sit in back seat and opposite sides of car as the driver. I drove the 6 hour trip home and he rested in the back seat. Pretty easy treatment.

Report

[StePeteMN in reply to CJ4J]

Okay good to know! I thought I remember hearing a hospital stay was needed and the hospital nurses wore the Homer Simpson nuclear power plant protective gear. Your story is much easier. If my dad gets it I wonder if he could stay with my sister an hour away...

[CJ4J in reply to StePeteMN]

Lol on the Homer Simpson outfit 🤣Actually during the Vision trial, my husband had a fall in Maui and needed a few stitches. Because we told the ER of his Nuclear treatments, they left him waiting awhile and before they would stitch him up, they came into his room with protective suits on.

He should be fine to stay with your sister.

[j-o-h-n]

Good News. Keep it coming....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/02/2022 10:38 AM DST

[Hidden]

Go Pluto! Knock it back again! I too had those painful stents . I pray for miracles for us all…. A limit to his pain would be nice . He is suffering much . Best wishes moving forward! Thank God , that he has your love ! ❤️🙏

[CJ4J in reply to Hidden]

Pluto rocks!!!

[Hidden]

No one better than Kwon🙏

[CJ4J in reply to Hidden]

Agree 100%

[Quick2019]

Good news! I will pray for strong platelet count.

[CJ4J in reply to Quick2019]

Thank you Quick!!!!!

[Doodahday]

I am so happy to hear about your encouraging results! May God bless you and your husband.

[CJ4J in reply to Doodahday]

Thank you 😊

[Johnstonearch]

Thank you so much for sharing your experience so far. After 23 years of Stage IV and metastasis, this is my first glimmer of hope of actually vanquishing my cancer. please share side effect experiences and how you dealt with them. i go to DUKE in September and find out if i am eligible. All the best to you!

[CJ4J in reply to Johnstonearch]

23 years, that's quite a long run battle. My husband has been fighting for 6 years.His side effects from this treatment have been minimal. Pain the first 24 hours and then some fatigue. His mets are throughout his upper body, spine, shoulder, ribs, sternum and skull. Those were the areas of discomfort. His pain killers worked effectively for that. Similar to his first treatment in the vision trial. After the 2nd treatment in the vision trial, he didn't feel anything, which is probably because the Mets were gone. He has more extensive mets this time than he had in the vision trial. And his platelets are much lower to start with this time. So, hoping he gets #2 and will see how he does with the 2nd go round.

[ShenStone in reply to CJ4J]

Thank you for checking in and sharing. See my Oncologist in September.

[docbulldog]

Thank you for the encouraging news on the LU 177 therapy. Praying for good positive results continuing. I live in northern Idaho and cannot find a facility close by that would offer this treatment. University of Washington Medical Center in Seattle is only caring for their own patients right now because of lack of product.

The good positive feedback on this issue is very encouraging.

I am currently on the second line of chemo but my PSA has moved up to 141 and if I don’t see results after this third infusion I think it’s time to move into something else.

[CJ4J in reply to docbulldog]

I'm sorry to hear there isn't any availability yet in your area. Maybe make a 2nd opinion appt with the University in Seattle, then you will become there patient. We were told they have scaled back the lu-177 and are releasing it slowly. They mentioned there were 60 patients at Mayo on the list for it and only 9 had gotten it by the week my husband got it. So, very fortunate to be that 9th patient.

Hope you can find the treatment when you need it.

[docbulldog in reply to CJ4J]

Thank you for the reply. I have made contact with a Dr at U of W that was involved in my initial prostate problems in 2006 with surgery and later with a decision to do External Beam Radiation because surgical margins were positive. That Dr suggested I do the EBR in Lewiston, Idaho which was in my local vicinity.

Two years ago I did the Gentleman Study through him and have had 2 Zoom conferences over decisions on treatment in the past year. I asked to get on his list for Scans and LU-177 treatment but was told his local patients are all they have product for. Also I’m part of the Seattle Cancer Alliance here at St Joe’s Cancer Center.

I guess I’ll just continue to keep my fingers crossed for word I’m on the U of W Cancer Center LU-177 treatment list.

[Bvilkid]

Such good news. 🙏

[Grumpyswife]

Thank you so much for posting the details of your husband’s Pluvicto experiences. Very encouraging to us.