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Can anyone share their experience with Pluvicto?
Prostate Cancer | Last Active: 2 days ago | Replies (245)Comment receiving replies
I am 80 years old with stage IV prostate cancer which has metasasized throughout my bones. Been on various immunotherapy treatments for 3-4 years (most recent being Keytruda). All of them have run their course and are no longer effective.
I tried for several months to get the Pluvicto treatment but they didn't do it due to the FDA saying a person had to have had chemotherapy first. I elected to NOT have chemotherapy as it made no sense to me to kill off everything and hope that the good comes back faster than the bad.
Very recently, the manufacturer began to question the necessity for chemotherapy prior to Pluvicto and I am one of the first people to get Pluvicto without having had chemotherapy.
Pluvicto treatment protocol is an IV injection every six weeks for a total of six times. It is a heavy duty radiation treatment but it is NOT chemotherapy. It targets the cancer cells instead of the shotgun approach of chemotherapy.
I am halfway through my Pluvicto treatment. I have had three injections and will get number four in a week.
You will get detailed scans prior to the treatment, and the doctor will monitor your blood work closely and see how you are tolerating treatment before giving you the next injection.
After the injection, they turn you loose when your radiation level is three at a distance of three feet.
We joke that I "glow in the dark" after the injection but there is a certain amount of truth in that. I wanted this treatment for myself, but was concerned about "collateral damage" of radiation to anyone else around me. The official guidelines tell you to maintain a three foot distance from everyone for three days, and for seven days from pregnant women and small children (and by extension small animals like cats or dogs).
Every radioactive substance has a half-life and decays over time. I purchased a dosimeter (Geiger counter) from Amazon for about $100 to monitor my actual condition rather than simply going by their guidelines.
My personal experience is that, for me, the guidelines are not strict enough. I do not want to cause collateral radiation damage to anyone else, so monitor my radiation level daily at three feet, one and a half feet, and right next to my skin.
My personal protocol is to isolate myself for one week. I am alone in the bedroom, reading, binge watching Netflix, etc., leaving only briefly to get something to eat or go to the bathroom.
During week two I loosen up a bit, allowing brief contact such as a hug or a handshake, but no prolonged contact.
By the end of two weeks from my injection, my personal radiation level is down to zero at my skin, so I no longer have any danger of giving collateral radiation damage to anyone. At that point I resume sleeping in the same bed with my wife and have no issues with personal contact with others.
Everyone reacts differently to different treatments. I have tolerated it reasonably well. The worst side effect has been serious constipation. Also a moderate increase in fatigue.
I would like to get another scan now, halfway through treatment, but insurance won't pay for it. I will get another scan when all treatments are done so I will at least have a before and after reading on how effective (or ineffective) it has been.
Replies to "I am 80 years old with stage IV prostate cancer which has metasasized throughout my bones...."
Thank you so much for your reply. My dad has not had chemo, but the dr said she could write a letter explaining the circumstances and get it covered. We are still undecided. We have a zoom meeting tomorrow with the radiologist. Daddy's cancer first spread to his hip last May. His PSA was around 60. He took Zytiga for about 10 months with good results. His PSA came down to 3. Then it started rising and a scan showed cancer in his femur and jaw. He is now on Erleada. His PSA was 20 in early April and 16 last week. He is not a candidate for chemo. We are unsure if it is best to continue with Erleada or proceed with Pluvicto. I , too am concerned about side effects for him and for my 83 year old mom. Hopefully, our questions will be answered tomorrow. I would be interested in hearing about how your Pluvicto treatment progresses.
redroadtraveler - My experience is almost identical to yours, so far. I have had varioous treatments for 18 years (age 81), and just started on Pluvicto - also with no chemo. I am halfway between #1 and #2, and have been approved to continue. I also purchased a geiger counter from Amazon (on sale for about $50) and my findings were the same as yours. So we stay apart for a week or so, just to be safe.
My PSA actually went up from 15 to 21 after the first treatment, but am hopeful that trend will reverse in time. My most serious side effect has been fatigue - but not unbearable.
I will look forward to comparing notes as we travel farther down that road.
Can you tell me where you were treated.
Is your tumor MSI-H?
Hello. I’m the widow of a Pluvicto treated Awesome Godly Man! He was advised to have the chemo before the Pluvicto. Don’t tell my husband Not to do something. He was Always “game on,” when it came to his cancer treatment. Granted he was a 20+ year survivor of Melanoma-from 2002-do I need to tell you BRCA2. Anyway, he passed away 9/11/2024; yet retired from full time work 9/1/2024, although bedridden Hospice at that point. Driving and working until 8/9/2024. He completed his last Pluvicto #6 on 5/14/2024. He had absolutely no side effects from Pluvicto, especially when we realized Zofran caused constipation and told his team he wasn’t taking the Zofran. The “chemo wrecked me.”
There’s So much more to his story, but fight fight fight is what my husband chose to do and we supported him all the way. He was 68 years old. I was an Emergency nurse for 30+ years and a Hospice nurse 41 years ago. Every single human is different. Godspeed and blessings to all of you.
I'm 83, had prostate removed on 2001, been on hormone therapy since then, also immune therapy, Xteva and now Pluvicto. I've had 3 injections with the only noticeable side effect was a dry mouth for about a week. After the 4 th injection the dry mouth has persisted for 3 weeks, not bad but taste is off a bit. I've been hiking between 5-6 miles a couple of times a week, kayaking and biking 20 miles.Somewhat fatigued but still able to participate. I read that the dry mouth could persist for awhile or even become permanent. I've been very fortunate my PSA went from 8 to .05 after 3 injections. Stopped the Xtandi after the 3 injection and next week will see what blood levels are. Since stopping Xtandi BP has dropped, hope to get off some BP meds.
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Thank you for sharing this. I wish you the best for success with the treatment. I hope you do well and keep us posted with your progress.