I am going to be starting Pluvicto over the next few weeks and before I meet with my doctor on Wednesday, I was hoping to get a better understanding.
I was diagnosed 5 years ago, ADT the entire time and chemo twice. However, my numbers started going up again my scans show increased size and new larger lymph nodes but stable bone mets.
I understand the treatment will be 6 infusions, 6 weeks apart.
I am wondering about the side effects:
I most hear about fatigue and dry mouth/eyes. How does this compare to chemo?
Any other side effects?
Is the fatigue worse after the infusion but then you feel better until the next one?
What about travel or family events? Understanding the need to isolate after each infusion for 3 days, can you move the infusion by a few days to avoid special occassions?
Thx in advance,
Greg
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I had 5 rounds of Pluvicto last year. To be honest, I jump from treatment to treatment so I can’t say whether it fatigued me or not.
My main issue is it killed my salivary glands. I am constantly drinking water. I need to drink water to ensure I swallow dry foods. I have found that drinking water while chewing food brings out the flavor. Certain foods I cannot eat. They taste like salt. I stay away from beef. I was told to buy Miracle Berries on Amazon, which I did. They help with the flavor of foods. I do find that symptom is dissipating a bit.
If I don’t have water nearby while talking, my mouth dries up and I start to sound like I’m drunk!
WRT changing the schedule, that would be between you and your physician. I try to keep to schedules.
Provenge or Pluvicto? I ask because I've never heard of anyone getting five treatments of Provenge. I was just on a clinical trial to test the safety of getting a fourth dose (almost six months after getting the normal three doses).
There are those who will minimize the side effects. I do not regret trying Pluvicto although it did little or nothing for me and was discontinued after maybe three treatments. Everything was done right, just didn't work.
Some say that Xerostomia (dry mount) is temporary and that permanent xerostomia is rare. Well I guess I am rare. I Have persistent xerostomia and one might think, no big deal you are alive.
Until you have extreme xerostomia you just don't understand what it really means. It means that you sound like a moron or drunk barely able to get words out if you are not constantly drinking water or sucking on oranges or using tubes of Biotene. It also means that eating becomes a chore not a pleasure. Everything is like cardboard and gets stuck to the roof of your mouth. What is edible and enjoyable is reduced to a very small fraction of what you could enjoy before.
Here are things that still are OK some of which should be wonderful but there is little joy left in eating at all. Lobster properly cooked as well as juicy fish, flaky doesn't cut it anymore. Junk food that you would never eat before like Burger King fish sandwich Costco $1.50 hot dogs.
Smoked salmon including the best Lox any delicate fish or delicate anything for that mater is like eating paste. Forget about spicy foods. I wish I could get good old salt pickles I think they would be good, vinegar pickles are horrible. I put mayonnaise (Kewpie) and extra thick balsamic vinegar on everything. Catsup is OK unless it is acidic. I do not appreciate great tomatoes anymore although those are so rare it doesn't matter much. Forget about most berries and fruit unless perfectly ripe and flavorful and again that is so rare today ???
I doubt I will ever enjoy a ripe juicy peach ever again if I could get one.
Do I sound bitter, well yes!! I am losing weight and trying to eat enough to check this is almost impossible. Bacon, chocolate, forget it.
There are ligands that are supposed to be less destructive on the salivary glands than what was in the Pluvicto but we are so far behind the Germans and Australians that if you live in the US yo uare not likely to get alternatives.
I did not investigate ways to minimize xerostomia because people said it was so rare) Now it is too late. If you careaat all about food, do your research maybe there is some way to avoid salivary gland destruction.
My husband had no side effects through 4 rounds of Pluvicto. He actually felt great starting a few hours after infusion and started declining at 4-5 weeks. Then he bounced right back after the next one. Dry mouth was not a problem but he did suck on hard candies during infusion just in case that helped and he loved candy anyway.
Mayo did not have him isolate at all. He just had to flush three times after voiding. He also had to avoid pregnant women in close proximity but that wasn’t a problem.
My husband has had 3 out of 6 infusions so far, and he has found it way more tolerable than docetaxel. Everyone is different, but I'll share his experience. Your questions:
I most hear about fatigue and dry mouth/eyes.How does this compare to chemo?
Yes and yes, but both subsided within a week of treatment. Chemo was 2 weeks of fatigue out of every three - some people sail through it, but he did not.
Any other side effects?
Nope.
Is the fatigue worse after the infusion but then you feel better until the next one?
Yes.
What about travel or family events?
He is feeling almost normal between treatments. We have traveled and spent time with family - though you should wait a week or more if you will be around small children or pets.
Treatments are every six weeks, but our RO says we can push it out two to three weeks extra in case of schedule conflicts (we had to do that to work around some back surgery he needed).
I completed 6 rounds of Pluvicto last summer with a good response.
- Fatigue was manageable with daily naps, and with exercise.
- My sense of taste changed noticeably. Foods that I used to love lost their appeal and are just now getting back to normal.
- I isolated strictly for at least 5 days, slept in a separate room, did my own dishes, used my own linens and towels and did my own laundry. I extended the isolation for 7 days if there was going to be any contact with grandchildren.
- Otherwise, I had no side effects that I could feel but there was some effect on my blood counts, especially red blood cells (hemoglobin and hematocrit) and lymphocytes, so those should be watched. None of it needed special attention, but they bear watching.
- It was way better than chemotherapy side effects from docetaxel that I experienced several years ago, but the side effects from Pluvicto are more persistent. On the other hand, seven months after completing Pluvicto, my PSA was still going down. The benefits clearly outweighed the problems in my case.
I did 6 rounds of Pluvicto 2023-24 and, due to the risk of rebound pain, was on a light course of steroids for the week of the injection. I also sucked on ice chips in case that might help prevent further damage to my salivary glands.
So I didn't have fatigue, didn't find the isolation a big deal and had no other side effects. My saliva has come back fairly well but I still keep a bottle of water around at all times to keep my throat refreshed (it was damaged by radiation to spine). Staying well hydrated is, I guess, a good thing according to the 8 glasses of water a day folk.
I am now awaiting approval to do a second round to see if it will knock the disease down far enough and long enough so that something better comes along. Cabazitaxel is waiting in the wings...
Waiting for something --- been 3 weeks so I'm contacting RO to check on status.
I called Medicare last fall and he guy I spoke with (who was familiar with Pluvicto) said that he could find no restrictions on it. I know others have had second rounds.
Then labs have to pass nuclear medicine docs, but they are no worse than last time.
And, finally, there has to be a schedule set up that fits into the available treatment slots.
I'm guessing it is the last factor that is the holdup. I'll know soon.
That makes since that the radiologist would have a say in the analysis of the blood labs. Glad it sounds like you have decent labs.
I've had excellent Pluvicto results. Next month is a year since my last infusion. It dawned on me the other day that unlike the last 5 years of multiple treatments now that I'm riding the Pluvicto wave the only PC med I'm on is Eligard and its showing up as an improvement overall in my blood labs.
The thought of when things go downhill again will Pluvicto be an option again is appealing. I'll leave that to my MO thouugh. For all I know the good response to Pluvicto represents a possible benefit from another treatment other than Pluvicto.
I was on a clinical trial partially to have a treatment time bridge before the Pluvicto shortage was not in the way of scheduling or got scheduled while on the trial. I would think that yes even without a shortage the ramifications for the hospitals to acquire Pluvicto and get everything and patient openings all lined up could cause a bit of a delay.
Hey, Greg. For me, Pluvcito side-effects were cumulative and worse than Taxotere - towards the end of the course I ached so much it felt every day like the day after a contact sport - likely because my bone met burden is high. But I don't regret it - it worked and got me 18 months of clear sailing. Only now is my PSA moving up.
Yah, my PSA is just now starting to rise. There are future options, so I'm just going to celebrate living through another winter. Keep surfin', brother!
I'm biting my tongue. I don't want to jinx myself lol.
I'm optimistic too about future treatments. My MO always has good trials to recommend that have always been a fit for me and not too far out in left field.
I have had 4 treatments of Pluvicto with very little side effects. Some bone pain flair ups which may or may not have been caused by Pluvicto that were treated with radiaion. I'm not sure if Pluvicto is working as the radiation after my 2nd infusion is probably what brought down my PSA from the upper teens 17.65 to 5.18. Now after my 4th infusion my PSA went up from 5.18 to 6.3. I'll get scans in 2 weeks but feeling some more sore spots. Overall, very tolerable, some dry mouth.
my husband dx 3 years ago started with triplet therapy worked for 18 months. then went to daro/Abema trial that didn't work at all. Last June - january 25 was on a pluvicto with carboplatin trial. It was a 1/2 dose of carbo(chemo) but 6 full doses of pluvicto. Nausea for 4/5 days after treatment and fatigue which got worse over time . It has been 6 weeks since last treatment and fatigue is getting better. He had great results psa started at 90 went to 5. Also lesions on liver and lymph nodes gone and bone disease reduced.
What causes xerostomia (dry mouth) when taking Pluvicto.
From Alpha & Iota
When taking Pluvicto (lutetium-177 PSMA therapy), xerostomia (dry mouth) occurs because the radiation emitted by the drug can damage the salivary glands, which are responsible for saliva production, as these glands also express a small amount of the targeted PSMA protein, leading to reduced saliva output and a dry mouth sensation; essentially, the radiation inadvertently affects healthy salivary tissue while targeting prostate cancer cells.
Key points about Pluvicto and dry mouth:
Mechanism:
The radiation from Pluvicto can directly damage the cells within the salivary glands, impacting their ability to produce saliva.
Prevalence:
A significant portion of patients treated with Pluvicto may experience dry mouth as a side effect.
Management:
Strategies to manage dry mouth from Pluvicto may include increased hydration, saliva substitutes, and discussing potential mitigation options with your healthcare provider.
Thanks for asking the questions and thanks to all for the great replies.
My Psa moved down from the harmonies and chemo but the lowest it went pwas 58 . I’m scheduled for PSMA pet scans this Friday and will meet with the doctors towards the end of the month . Pluvicto has been discussed as a very probable next treatment provided the scans show positive and I get accepted
I just finished 6 rounds of docetaxel chemo 21 day cycles and the side effects suck worse than the ongoing liberals and daroltamide harmone treatments . I barely taste food as it is from the chemo so hopefully my salivary glands get spared .
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Best of luck with the treatments and please update on future progress.
I did Provenge last September. Side effects were minimal overall, but after the second infusion (but not the first or third) I had very bad chills when I got home. I had to cut off the A/C, bundle up in multiple layers, and hit the bed and get under covers (and September is very warm in Florida). About three hours later, I woke up sweating as if a fever had broken, and I felt better. The next day, I felt like I was recovering from a bug/virus(low energy, achiness), but it passed by mid afternoon.
However, as part of a clinical trial, I got a fourth dose on Monday, which had to be stopped midway through because of a reaction. That's a dose most people never received.
I've never had chemo, but I suspect that the side effects are generally significantly worse or last longer. Others can weigh in on that.
You can search my posts under my profile for the ones I did earlier on Provenge.
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