Fellow travelers: I'm cleared for Pluvicto and my first infusion is scheduled for August 30 at the University of MN hospital.
Therefore, do any of you with Pluvicto experience have any comments, suggestions, tips, etc., to share? There must be a few tips floating around.
Apparently, I'll be the 8th person at the U to get it and so far fatigue is the most often reported side effect. That's fine with me as I like naps.
Thank you in advance!
I had only 1 treatment. Short lasting fatigue and edema were the only side effects. Take mints with you to exercise the salivary glands, if it does anything at all.
Thanks! I assume that you just had one, but that you'll continue to get them 6 weeks apart?
Best of luck to you. There are many here about to embark on this same journey. Hubby is scheduled for his first Pluvicto on August 25. Hoping to read comments and advice from this thread also.
Good luck to you. I receive my 6th and final infusion Aug. 24. Dr. Beltran says my response has been very good. It's a very simple procedure, no discomfort. After each infusion, slight increase in blood pressure. As stated, fatigue. I hike 3 miles each morning. I was instructed to drink lots of water. This past winter I seemed to gain a little weight. I've pretty much stopped eating processed carbs. Dropped 17 pounds while on the trial. I'm 6'4"/ 210# feel better with weight loss. PSA went from 8.2 to 0.2.
We are originally from Minnesota and will be there soon for a visit. My husband used to be treated by Dr. Gautam Jha at the U of M so I am pleased that they have started using Pluvicto.
Now we live in Georgia and Grumpy has received two Pluvicto treatments in Athens, GA. His third treatment is 9/13/22 scheduled six weeks apart.
Amazing to us that PSA has fallen from ~350 to 54. Of course, we are not treating PSA. He will have another PSMA scan after the next treatment. He is taking no other cancer meds. He has no side effects yet. He is improving and walking around the block again and cycling 30 minutes each day. His latest bloodwork shows improvement in platelets from previous labs and nothing of concern. He is 79 with 22 years of prostate cancer under his belt. His QOL has improved from Pluvicto so much that we were able to travel.
After Pluvicto you're supposed to keep distance, use gloves, separate laundry, etc. On the drive home he sits in the back seat of the car kitty corner to me driving.
Make sure you use the bathroom before you leave the facility. He was distracted by the sweet, charming, wonderfully attentive nurses and did not want to bother them with peeing before we drove off.
He requested to stop along the roadside halfway home. The distance rule was broken as he couldn't get out of the seat belt without my help.
Wow. Im happy for the turn around in you and Grumpy's life. Travel again etc.
Thanks. We are heading back to Georgia now after a wonderful stay in Minnesota. This trip was possible because of Pluvicto.
I received dosing #1 of Lu177 on June 22. For two weeks prior to that I had been experiencing deep, gnawing metastatic pain from left hip to knee that tramadol wasn't helping with; one week later I realized the pain was totally gone. Blood tests are not repeated mid-cycle, so one never knows how low one's blood counts go. Some of mine the morning of dosing #2 (Aug. 9) were lower than they have historically been but still acceptable. Mayo follows up each dosing with a SPECT scan. The RadOncs had designated 5 of my lesions as "Index Lesions" and will gauge each one following each dosing with a Standardized Uptake Value (SUV). Dosing #2 showed significant reductions in the SUVs of the five lesions. RadOnc reported: "Index lesions over time:Lesion 1: Left humeral head SUV max 9.0, previously 42.0.
Lesion 2: Right paratracheal node SUV max 1.3, previously 16.2.
Lesion 3: Left hilar node SUV max 1.0, previously 18.0.
Lesion 4: Lower sacrum SUV max 13.9, previously 133.3.
Lesion 5: Left pubic symphysis SUV max 4.2, previously 25.9."
Those #s strike me as significant changes, and the tone of the radiologist's reading seems pretty upbeat. But I wish I had more understanding as to what reductions in the SUVs really imply: 1) metastatic cell die-off and hence tumor reduction?, 2) a diminution of PSMA receptors in those specific lesions but ongoing presence of metastatic cells?, 3) lack of Lu177 uptake now in those lesions and thus less efficacy?.
Also, my alkaline phosphatase #s doubled after dosing #1. I've asked if this is indication of sharply increased bone remodeling ... or possibly detritus of metastatic cell die-off, but I have not yet received any reply.
Those are all really great questions, especially around the SUV numbers. Could you keep us posted with any insights you get?
I would guess that definitive answers will be found with comprehensive scans, i.e. to cover both PSMA-avid and FDG-discordant, etc. Many others here know much more than I about imaging, but my impression wrt SPECT is there is a lower signal-to-noise ratio than PET (since it is single-photo emission vs double with PET)…and that resolution is only about 1-2cm. I could be misunderstanding things here.
Regardless, it seems to me that decreasing SUV after treatment is a good thing, and your theory about detritus causing the ALP bump seems plausible.
I have had three infusions so far. After the second one, I experienced only minor fatigue, but after the 1st and 3rd I had nausea in addition to fatigue. The onset of the nausea was probably 4-6 hours after infusion, lasting through the following day. Even though this is reportedly not that common, it might be good to have an anti-nausea med on hand, just in case. Best of luck with the treatments!
Pwipp55:Please keep us posted on your progress. I am going to start this fall.
Battling the beast for 20 years.
Tom
Will do! And wow, you have 9 years on me. It's been a slog, but I, like you, are still in the game!
The KEY is NEVER give up, exercise when you are tired, wake up every day being thankful for another wonderful day on earth, love those around you and keep challenging doctors for solutions. Please keep us posted on your results.Good luck,
Tom
Hi TC! I've now completed 5 Pluvicto sessions. After 4 my PSA fell from 42 down to .3! I had my 5th the end of February, so I'll get my next blood work in a week. My last dose is 3/29 and then the real fun starts (watching how long it lasts). I assume you're getting it now? How are you doing with it?
Pw - Great news!!!! How were the side effects????? You are a mirror image of me.
My PSA is 30 and I start treatments April 7th. I hope I have the same effect. You are right, then the waiting begins to see how long it lasts. Please keep me posted. TC
My side effects were minimal. A couple of days of fatigue and that was about it. My 3rd and 4th doses I had "unfortunate" GI issues, but my 5th one was nothing. I do have anemia, which impacts my energy level, but I'm still in the game!
Where are you getting yours?
Mayo Phoenix - how about you?????
U of MN hospital. It's pretty slick. I'm in and out in less than 90 minutes! One cautionary note - 2 weeks after an infusion I was stopped at the US-Canadian border because I tripped the radiation detector, while I was in my car! Be certain to get your "notice of radioactive treatment" card, if you're planning on traveling, and follow the recommendations for staying away from people for the first few days. Let me know how you're doing and good luck!!!
Will do. What do you mean stay away from people???
According to the instructions you need to stay at least 3' away from people for four days, so you need to sleep by yourself. You need to stay away from pregnant women and kids for, I think, 10 days. Something like that, but they'll go over all of it. My wife actually leaves for a few days, so I go without supervision. 😃 But I'm a pretty fun guy, so being unsupervised isn't much of an issue for me!
what about a dog?
I don't know, but I was cautious around my parrot. They'll go over all this stuff with you. I met with a radiation protection specialist and a radiologist to insure I understood it all. Or look into it online. Remember the bottom line - it works!
I sure hope so. I’ve had every treatment known to man and most of them have partially worked. I had my 20th anniversary with the beast last year. The Lord has been good to me. God bless you keep me posted.
Wow! 20 years!? I'm a newbie - It's only been 12 years for me. Like you've probably been, I've been cut, chemoed, radiated, and ADT'd. It's been a slog and a pain in the butt, but I'm still in the game too!
Yyou just have to keep ducking and swinging. Trying to stay in shape by walking even though my neuropathy from my chemo is a pain in the butt. Keep a positive attitude and never read any stories about how long it might last you can think about that before you take your last breath, hopefully in 20 more years.
Well said! Thank you and best wishes for your newest treatment!
Had 1 treatment mid June. Major fatigue for 2 days w slight nausea. Pain from mets stopped within 12 hours. Amazing. After 7 days felt much improvement actually better than before the pluvicto. Have no test data yet. Have 6 scheduled one every 8 weeks.
Good to hear. Thanks.
Is it part a clinical trial or now a standard treatment?
Part of SPLASH trial. Pre chemo treatment
In the plane now flying home to US from my 3rd Lu-177 treatment. I would say bring something to keep your salivary glands working, (gum, mints, hard candy, etc.) use them for a few days after treatment. Drink 3 liters of water a day for first several days to clear out your system.
Rest and relax. I haven’t felt much in terms of side effects besides slight dry mouth.
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