Pluvicto

[Neathuh1]

Hi Bros.

I’m to begin my Pluvicto protocol in a view weeks. I would sure appreciate hearing from those who have gone through it what their experiences were, positive or negative.

Thanks for anything you can tell me.

Bob ([e-mail])

[j-o-h-n]

Member at least 7 years and no bio? Add bio for yourself and for members to help with your treatment(s).......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/03/2023 5:48 PM DST

[PacMan1950]

Please read my Bio.I had Lutetium -177 treatment early this year (2023). It didn't work for me and I'm now back on Chemo (Carboplatin).

It was worth a try and I'm so grateful that the health system in Australia gave me the opportunity to try it.

I'm running out of straws to grasp now...

Paul

[FionaElbourne in reply to PacMan1950]

Hi, Is the Carboplatin bringing down your PSA. My husband is going to discuss this treatment at his next meeting as the tumours are spreading significantly. Are you suffering any side effects of this treatment. I hope it’s working for you.🤞

[PacMan1950 in reply to FionaElbourne]

No, I saw my MO today and my PSA has climbed to 1100 (not a typo).My last chemo was a double-bagger (Carboplatin plus Docetaxel).

The double Chemo made me so sick that I ended up in hospital for 3 days with a blood transfusion and anti-viral drugs.

I'm in for chemo tomorrow but I'm only getting getting Carboplatin this time.

I'm not expecting my PSA to drop anytime soon.

Paul

[Neathuh1 in reply to PacMan1950]

Hi Paul. Sounds like you’ve had a tough go of it. We’ll all be hoping for your improvement soon.

[FionaElbourne in reply to PacMan1950]

Thankyou for replying, I’m sorry to read your latest update. I hope pain is still under control and perhaps after another chemo things will start to improve. My husband will get a second opinion in London at the end of the month as our consultant in Scotland has told us he is out of options, but he hasn’t had Carboplatin yet so I’m hoping that’s an option. That said he is very weak so I’m not sure he could take more chemo now.

[Hidden in reply to PacMan1950]

Hi Paul - Sure praying for your brother.

Tom

[Hidden in reply to PacMan1950]

How is the chemo working this time around

[PacMan1950 in reply to Hidden]

No better. PSA has climbed to 1100 now.See my comments above.

Paul

[Russ506]

My first experience was 4 weeks ago. One or two days with decreased appetite (I need that), otherwise no side effects. Being radioactive for a few days was a pain though. We'll see if it works after next PSA and another round.

[SeosamhM]

Hey, Neat. For me, Pluvicto side effects were not good - over time it felt like a goon squad was working me over every day. I was alarmed because this was contrary to the official literature, but my labs were okay and I pressed on.

After hearing other experiences, I think I was in the spectrum of likely benign side effects. Pluvicto is "targeted treatment," but it kills cells and there is collateral systemic damage. If you havea certain mindset going in, i.e., "as long as my labs are good I can get through this" - you'll be fine. You may have no side effects at all!

As Pluvicto is used more frequently, we are learning more and more. For me, it was a "meh." For others, it is a great treatment, and for others it seems to be toxic bomb. Seems about right for all of our treatments, yah?

Good luck! - Joe M.

[chipspesto]

Just completed second Pluvicto treatment; after first treatment PSA flaired but now down to 83. Side effects after first treatment include some bone pain, fatigue not much else. After second treatment a little fatigue that's all. Eat well and exercise. Best to you!

[Lunbo]

Pluvicto is last resort. Twenty two yrs w/PCa and been thru all but RP. Did 3 infusions, few SAs and PSA dropped 95% over 90 days. Put on hold until PSA rises then restart. Miracle for me!! Good luck!

[Yadifan]

My husband tolerated it well. Was able to complete all 6 treatments and had a good response while on it. The results weren't long lasting though. Back on chemo - Cabitaxel this time.

[PC-22]

I was admitted into the PSMAddion trial in January this year at Mayo Clinic. Just completed my 6th and last infusion a couple weeks ago. My PSA is considered “undetectable” and the Nurse Practitioner (rarely ever actually see the doctor) says my cancer is “Dormant”. Yet, I still have considerable pain in my shoulders, lower back, pelvic area, knees and feet but I manage.

Nuclear medicine doctor says I need another PET Scan but insurance won’t cover it. Other side effects I have is very dry mouth, thick saliva, extreme fatigue and the pain I already mentioned.

Nevertheless, I still have a measure of QOL. I take Oxycodone for the pain, I take a nap prior to any function my wife and I want to do and we make the most of it.

If you go on this treatment, be sure to consume lots and lots of liquids before and after each treatment. It’s important to flush it out of your body as quickly as possible

[Neathuh1 in reply to PC-22]

PC, Thanks for the info. It will be very helpful. Good luck to you going forward.

[Leps in reply to Neathuh1]

Neathuh1,

Don't let the reporting of negative side effects and negative results with Pluvicto turn you off.

My experience with two courses of Pluvicto so far has been good, and the same was true for a good friend who had all six doses. I'm concerned that not enough people with positive experiences with Pluvicto are posting here. My understanding is that it works well for most people. My MO for Pluvicto said that the main side effect was dry mouth, and that's all I've had along with a little fatigue which sure beats my experience during nine courses of cabazitaxel.

One big Pluvicto plus for me is that food has begun to taste good.

Good luck with whatever you do.

[TTJJ1]

Bob,

Responding to your inquiry about Pluvicto.

I just had my 5th infusion last Friday.

When I started my PSA was at 68.37.

When my PSA was tested day before my 5th infusion it was down to 6.

My last PSMA-CT after 4th infusion indicated significant response to Pluvicto.

I am still working full time and up at 5am to do 3 mile run every day, with light weight lifting.

The SEs include dry mouth and tongue, some taste issues - these have been the most significant SEs. They recommend using ice chips before, during and after infusion. This did not help me and I was told that it generally does not help with this issue - but it is different for everyone and is probably worth trying; I still do it at each infusion day.

The fatigue is tolerable and usually subsides on the fourth or fifth day after infusion, with some mild fatigue between infusions.

Yes, drink a lot of water before during and after infusions.

But, as you know if you are following this issue, the results and SEs will vary significantly for each person.

You first should have a PSMA-PET to check if cancer is PSMA avid - not sure if you have.

Let me know if you have any further questions.

Wish you all the best - stay strong.

[Neathuh1 in reply to TTJJ1]

Hey TTJJ1, thanks so much for your information! Most helpful. My PSA is only 1.7, but the mets in my lungs are growing, so PSA hasn't been a reliable marker for me. Yes, I've had two PSMA scans, the 2nd one was just yesterday and I get my first Pluvicto infusion on the 29th. I so appreciate every piece of info that all have passed on (should I say "passed on" here?) to me. I'm going into this expecting nothing but the best. I'll be sure to post how it goes.

Thank you again for taking the time to respond.

[TTJJ1 in reply to Neathuh1]

Hoping for the BEST for you.

Don't forget, water, water, water to flush it out.

Don't hesitate if you have any questions.

Let us know how you make out,

[Neathuh1 in reply to TTJJ1]

Hi TTJJ1. Had my first Pluvicto two days ago. Absolutely no ill effects whatsoever. Am I blessed or what? I thank you again for your helpful reply to my previous post.

[TTJJ1 in reply to Neathuh1]

That's great to hear.

My 6th will be in three weeks.

Please do not hesitate to contact me any time.

All the best to you.

TTJJ1

[Neathuh1 in reply to TTJJ1]

Good morning TTJJ1. A question for you: did your MO keep you on other meds while going through the 6 Pluvicto infusions? Mine wants me to continue on Lupron. Just curious. Hope all is well.

[TTJJ1 in reply to Neathuh1]

Yes, I stayed on Lupron and Nubeqa. Seems that data indicates the triple therapy is best. I actually did not have my 6th infusion of Pluvicto (it was scheduled for last Friday). My MO thought it would be best to hold off since I had a good response with five infusions and will test blood levels after 6 weeks. The major SE is very dry mouth and tongue issues. In part that is why MO is holding off on the 6th. My PSA went from 68.37 before starting Pluvicto and 6 weeks after the 5th infusion it was 3.7, my scans showed substantial response.

Please do not hesitate to contact me anytime.

Stay strong - All the BEST to you.

[Neathuh1 in reply to TTJJ1]

Hi TTJJ1. Have you had your 6th infusion yet and if so, how did it go?

Did you see the report out today that Pluvicto will now be available to guys within two weeks of their diagnosis? What a blessing for so many. I get my 2nd dose on the 10th and consider it a blessing that I am receiving it

Hope you’re doing well!

[TTJJ1 in reply to Neathuh1]

Neathuh,

Yes I did see the report.

I did not get my 6th infusion. Since I had such a good response my MO thought it be best to hold off on the 6th infusion. He thought there may be more harm than good. He will be doing more blood levels in about a month and then make a decision whether or not to go with the 6th infusion. Hope all goes well with your next infusion.

Do not hesitate to reach out if you have any questions.

Best Wishes.