Pluvicto: My husband was on Lupron (... - Advanced Prostate...

Advanced Prostate Cancer

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Pluvicto

MsHope profile image
50 Replies

My husband was on Lupron (4 yrs) and it stopped working. His doctor added Xtandi. The first month it dropped his PSA 150 points then it slowly increased. He has been on it 4 months or so. Doctor wants him to get PLUVICTO™ (lutetium Lu 177 vipivotide tetraxetan) treatment. Has anyone had this treatment or have info about it. It has the following warnings, that seem almost impossible to do.

To minimize radiation exposure to others following administration of PLUVICTO, limit close contact (less than 3 feet) with household contacts for 2 days or with children and pregnant women for 7 days, refrain from sexual activity for 7 days, and sleep in a separate bedroom from household contacts for 3 days, from children for 7 days, or from pregnant women for 15 days.

Thank you in advance

50 Replies
joeguy profile image
joeguy

I am currently receiving a slightly different version of Pluvicto in a clinical trial, and I have been told that the initial precautions for Pluvicto were over blown (written by lawyers no doubt). I am told that after 24 hrs the radiation level is low enough to not be a threat. The main concern is to be very careful when urinating for the first couple of days, as urine caries most of the radiation out of the body. I was also told no "spooning" with the wife for a couple days after treatment

MsHope profile image
MsHope in reply to joeguy

Thank you so much for you response. I was thinking the that the precautions were a CYA. As far as spooning, that is not a problem and we have a california king bed with lot's of room. Also it says not to let your pets get close to you, I guess that should be ok in 24 hour period.

MsHope profile image
MsHope in reply to joeguy

I forgot to ask you about any side effects you are having, if any. I know everyone is different but just curious. I hope treatment working great for you.

joeguy profile image
joeguy in reply to MsHope

So far I have only had 1 of 4 planned doses, but the side effects havent bad at all. I had very dry mouth for the first couple of nights, and there was more fatigue than what comes with Hormone treatment.I found a nice hour or 2 nap every day for the first week or so after treatment seemed to help with the fatigue. I have had increased pain in the area of some of my mets, but I hope that is the cancer dying from being attacked by the radiation. They tell me if you are going to have nausea, it usually comes on after the 2nd or third dose. I get another set of scans right before my next dose in 4 weeks, so I hope we can tell if its working or not at that time.

MsHope profile image
MsHope in reply to joeguy

Once again thanks for your great info. I was concerned about the nausea. We will have to go to Houston, a 200 mile round trip and my Husband does not like my driving..lol.

joeguy profile image
joeguy in reply to MsHope

we were concerned about that as well because we are driving 4.5 hrs from Oklahoma to Dallas for treatment. Like I said, no problems with nausea at all after first dose..... we will see what the 2nd, 3rd and 4th bring....

spencoid2 profile image
spencoid2 in reply to joeguy

I am currently doing chemo for MCRPC and could very well be doing LU177 soon if the chemo is not effective or tolerated. If I do get LU177 I will be monitoring my radiation level carefully. I have a a very good radiation detector that I used for all radioactive treatments and could easily track the decline in radiation.

It would be awful to have to spend any more time than necessary not sleeping with my dogs.

When I had brachytherapy I was traveling with my emotional support dog who was very young and had not flown before so I thought she might need to sit on my radioactive lap. I bought a few square feet of sheet lead to put on my lap but never needed it. I guess I could get some more and wrap my dogs in lead. Not very cuddly though :)

joeguy profile image
joeguy in reply to spencoid2

it would be very informative to have real world data like that . They never actually tell you how radioactive you will be, just that you should be cautious for a couple of days

monte1111 profile image
monte1111 in reply to spencoid2

Remember. No spooning the dogs. I'm not sure about forking.

spencoid2 profile image
spencoid2 in reply to monte1111

i have my lead sheet to put in-between. the ultimate cuddle condom.

SkylerG profile image
SkylerG in reply to spencoid2

The half-life of Lu177 is 6 days, just so you know. I had my first infusion almost a month ago. he only real side effect was Radiation Flare where an area of current pain/discomfort (in my case, my right 6th dorsal rib) was a bitch all night long and I did not sleep well. Next time will include ibuprofen that afternoon and again before bed.That strange discomfort is a common but not absolute side effect.My next one is Dec 30th as I talked them into a 7-week cycle. I did not want to have it on Dec 23rd and totally destroy the family Christmas time together.

My Xtandi experience was not fun. My love of food changed as the idea of a number of dishes and flavors turned south on me. I could also detect a level of depression setting in. I am so glad I was able to stop. I had been on Zytiga (Abiraterone) for over a year before that with absolutely no side effects at all.

Good luck to everyone on this forum!

GP24 profile image
GP24

Most patients can organize things so they can adhere to these warnings. Otherwise your husband could stay two days in a hotel. Pluvicto is a very effective treatment and your husband should get it to improve his situation.

Tall_Allen profile image
Tall_Allen

I don't know where you' re located. If you are in the US, there are a few clinical trials that allow Pluvicto (or similar) without docetaxel:

prostatecancer.news/2020/08...

MsHope profile image
MsHope in reply to Tall_Allen

We will have to have treatment in Houston. It is a 200 mile round trip from where we live. The doctor says he can probably get treatment without husband having to have chemo treatments. In Jun 09

398.016 NG/ML. He started on Xandi and it worked good the first month, then PSA started going up per below.

Dec 301.651 NG/ML

Nov 247.631 NG/ML

Oct 208.335 NG/ML

Sep 220.539 NG/ML

Jul 218.936 NG/ML

June 398.016 NG/ML

Tall_Allen profile image
Tall_Allen in reply to MsHope

These have sites in Houston:

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

spencoid2 profile image
spencoid2 in reply to Tall_Allen

I am not sure I trust clinicaltrials.gov to list all current trials. I have been waiting for a LU177 trial for castrate resistant PC without the prior requirement for chemo and the only one I found was at UCSF and it kept getting postponed so my MOs both suggested starting chemo. Now there are at least three open trials not requiring chemo and at least one excludes prior chemo use. How did I (and I would think others would have noticed earlier too) miss all these trials including some that are active and have stopped recruiting. I did not check every day but fairly frequently.

lokibear0803 profile image
lokibear0803 in reply to spencoid2

are you using the “Subscribe to RSS” feature in ct.gov?

spencoid2 profile image
spencoid2 in reply to lokibear0803

I was not aware of that feature. Thanks. I can get LU177 now that I have had chemo without needing trials so I am not that interested in a trial right now.

Tall_Allen profile image
Tall_Allen in reply to spencoid2

They list them all. In fact, they list them even before they start recruiting. Here is my current list (taken from clinicaltrials.gov):

prostatecancer.news/2020/08...

MsHope profile image
MsHope in reply to Tall_Allen

Do you have any information regarding Xtandi causing severe knee, leg and muscle pain. My husband has been on Xtandi for several months and now has horrible pain in right knee, leg and shin. Pain medicine does not help. The only help to relieve pain is ibuprofen, aspercreme and heat. Thanks in advance for any info you have

Tall_Allen profile image
Tall_Allen in reply to MsHope

Arthralgia is fairly common with ADT and may get a bit worse with Xtandi. Celebrex might be a safer long-term alternative to ibuprofen.

noahware profile image
noahware

We all got trained to "limit close contact" by socially distancing during the pandemic. If you did that well, you can do this. For most of us, those restrictions regarding radiation are a breeze to follow, and yes, to some degree they are a CYA. I certainly would strictly follow the ones about children and pregnant women. But when I told my sixty-year old friends (and wife) the details of me being a radioactive hazard, most didn't give a crap, even as I did try to keep some distance from them. (My wife tends to be distant from me anyway, so that one wasn't a problem.)

Side effects of early treatments might include nausea and a few days of fatigue. But the effects of radiation are cumulative, and after my fifth infusion the fatigue never went away. I was slowly becoming more and more anemic the entire time. My blood counts still continue to drop (6 weeks later) after deciding to pass on infusion #6. Today's numbers are RBC 2.99, HGB 9.4, and HCT 27.2.

My MO today said he would not prescribe Procit. Apparently, the "plan" is to hope the numbers improve or to start blood transfusions if they get worse. Meanwhile, I cannot make it to the (nearby!) mailbox without getting winded.

Obviously not all men will get anemia this severe. But do consider the possibility.

Also, talk to your doctor about getting an FDG scan along with the PSMA-PET, to help gauge how likely the treatment is to be successful.

Rhalo profile image
Rhalo in reply to noahware

Did you have anemia prior to Pluvicto? My husband has been having hemoglobin 7-8 prior to Pluvicto due to cancer in his bone marrow and crowding out his RBC.

noahware profile image
noahware in reply to Rhalo

My anemia goes back to 2019, but was quite minor right through my first one or two Pluvicto infusions. It began its slow but steady decline through the summer as I got the next few doses (but my team did not really keep me informed on this, or warn me... it was my daughter who noticed me slipping from"mild" to "moderate" anemia!).

My numbers crashed over the past month (after I declined my 6th and final Pluvicto infusion a few months back): from 12/2 to 1/2, Hgb 9.4 to 7.2, HCT 27.2 to 22.2. Then from 1/2 to 1/9 in just one week, Hgb 7.2 to 6.5, HCT 22.2 to 20.3. Just got a two-unit transfusion.

Apparently, anemia from PC progression to bone marrow is not that common but also not but also not that rare, following Pluvicto failure. That appears to be where I am, awaiting next treatments (seeing MO today in fact).

noahware profile image
noahware in reply to Rhalo

Has your husband started Pluvicto yet? Where is he in terms of prior treatments?

Rhalo profile image
Rhalo in reply to noahware

so happy you are replying to me!!! He had his first infusion October 28, 2022!!! We had been trying to get this since May 2022!!! It was considered our last HOPE. He was diagnosed in 2012 at age 50. According to him he has always been anemic. August 2021. Hemoglobin was 9-10. April 2022 he had his first transfusion. We are scheduled for 2nd Pluvicto infusion January 16, 2022. His PSA HAS DOUBLED since October 28, 2022. From 326 to 703‼️ I am told it may take two to three infusions before the bone marrow clears out. The unknown is terrifying for me.

noahware profile image
noahware in reply to Rhalo

Hope it works! I would say if he has always been anemic, maybe some iron, B12 tests etc. to see if any diet or supplement can help. But keep an eye on those numbers... mine fell so fast.

I had a PSA drop with my first infusion, but it then rose with every one thereafter. Yes, maybe you will know after 1 or 2 more, hopefully. My doc said an initial PSA rise, when it happens, may mean dying cancer cells.

I have a few options left but am going to try BAT. I know the high-T route is risky and only works for about a third of men who try, but we'll move on if it fails after a few months.

Best of luck!

PS - It may be helpful for you to fill out a profile with history and start a new post... you may get useful input as you proceed, especially from Tall_Allen, as well as a few others here quite up to date on Pluvicto.

Rhalo profile image
Rhalo in reply to noahware

what is BAT?

noahware profile image
noahware in reply to Rhalo

Bipolar Androgen Therapy... you try to alternate high-dose testosterone with low-dose (one month on, one off) and some men get a response.

You can search on this site, and here's some intro by the one guy in the country who runs most of the BAT trials:

urotoday.com/video-lectures...

onlinelibrary.wiley.com/doi...

leebeth profile image
leebeth

My husband has had 3 doses of Pluvicto at Mayo. His precautions are much less stringent. I am attaching them.

Pluvicto precautions
meowlicious99 profile image
meowlicious99 in reply to leebeth

i have this post saved from Tall_Allen

healthunlocked.com/advanced...

found this extensive and excellent.

leebeth profile image
leebeth in reply to meowlicious99

Mayo revised their instructions this past summer, based on current safety evidence.

meowlicious99 profile image
meowlicious99 in reply to leebeth

oh yea they do look much more relaxed that previous instructions. Thank you for posting those here!

leebeth profile image
leebeth in reply to meowlicious99

They are. My brother is starting Pluvicto in Wisconsin and it is much more strict there. I suppose because I will actually be exposed to both of them, I might need to be more careful as my cumulative exposure will be higher.

MsHope profile image
MsHope in reply to leebeth

Thank you so much for info.

MsHope profile image
MsHope in reply to leebeth

Thank you so much for your info.

TWTJr profile image
TWTJr

I have completed 4 doses of Pluvicto, in Houston. Gleason 7, 22 years of prior treatment, running the entire gamut of various prior treatments. After LU 177 treatment, same clinical symptoms as the rest of patient's descriptions. Tired, moderately dry mouth, which gets better after about 5 weeks. No significant osseous pain, PSA started at 10, and after the fourth dose is 0.13 , about a 98% drop. 2 doses to go. FDG PET shows very little or marginal activity in 2 lesions, otherwise clear. PSMA PET shows minimal activity in same 2 lesions. Hct 30, Hgb 9.9, and stable over last 2 treatments. So far, most pleased.

Ramp7 profile image
Ramp7

I completed 6 infusions at Dana Farber of LuPSMA177 under a Trial Study. My PSA went from 8.1 to 0.19. Currently 0.5, just completed 5 sessions of radiation therapy to my tail bone. The treatment was well tolerated. A mild case of fatigue. Stepped up my morning hikes to 7 miles, dropped close to 30 pounds, avoiding Carbs, feel very good.

Biobro profile image
Biobro

If you can get Pluvicto without having to do Docetaxol you've hit the jackpot! Hubby went into Pluvicto pretty much hanging on by fingernails after the Docetaxol. He's a different man after 2 treatments. PSA dropped to 365 from 485. Alkaline phosphatase also dropping. He's a little fatigued but back working out with trainer. Feeling better than he has in 15 months. Precautions are easy to manage. We do 3 days of really careful, then go about normal life. We bought a Geiger counter just to be absolutely certain. Far as we're concerned for someone with an aggressive cancer, this should be one of the first treatments and not the last gasp.

spencoid2 profile image
spencoid2 in reply to Biobro

Of course it is difficult to determine how effective LU177 is overall but if I had gotten LU177 at the time of diagnosis and brachy etc, I would probably have been cured while there were just micro mets easy for LU177 to kill. I only encountered one doctor who agreed with me. She was on some forum sponsored by this group or malecare. I just don't understand why LU177 is not used early for anyone with high grade PC.

What did your Geiger counter show at various times after infusion and how hot was your pee? Difficult to know what is dangerous radiation from the treated person but the Geiger can at least show you how intensity drops off with distance.

noahware profile image
noahware in reply to spencoid2

"I just don't understand why LU177 is not used early for anyone with high grade PC."

Cost. Insurance. The "SOC" system that requires docs start first with cheapest SOC therapy before moving on to others, even if those others might be more effective. Sad but true.

But of course, if men go abroad and pay out of pocket, it CAN be used early for anyone with high grade PC.

Biobro profile image
Biobro in reply to spencoid2

The Geiger counter was at 350 units and rising at 3' 24 hours after infusion. 4 weeks later at about 60 units stable . Unfortunately we still haven't figured out what a "unit" on this machine is! Will sit down later and find out. 100 and above registers as "high". Below 30 as "normal". These days we just use it to identify any inadvertent hot spots in the house.

spencoid2 profile image
spencoid2 in reply to Biobro

mine reads in counts per second.it would be interesting to know how this translate to something meaningful.

Biobro profile image
Biobro

Just to make it a bit clearer, PSA drop above was after the first treatment. We'll get post 2nd treatment numbers this coming week.

MateoBeach profile image
MateoBeach

Doing sensible, not extreme precautions for a couple of days: Very easy.

200 miles if weather ok with a gas, food, stretch break: Also easy enough. ( Many have travelled across the world to get treatments.

The opportunity is precious, especially without having to do the chemo (which is not actually related to its efficacy). Wonderful!

noahware profile image
noahware

A note I forgot to add to my post: Zofran seemed to be very effective for me, as regards preventing nausea.

monte1111 profile image
monte1111

Good Lord. Now I have to buy a Geiger Counter.

Biobro profile image
Biobro in reply to monte1111

$80 on Amazon.

Ollie1948 profile image
Ollie1948

On 11/29, I had my first infusion of Lu177, SPLASH program... negligible side effect if any.

RusLand profile image
RusLand

Hi, MsHope! In a series of publications, I cover in great detail my experience of undergoing radioligand therapy using PSMA protein on the surface of malignant cells as a target. Find these publications on this forum and it is possible that you will find something useful for yourself.. Good luck and God bless us all!

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