Starting Pluvicto a second time

[Miccoman]

So I'm at it again. The very first at my medical center so everyone is excited to see how this goes.

I tolerated the first round of 6 very well and this time it's starting out the same: I feel fine the week of since I am on steroids, then I have mild exhaustion for a week or so. I've been dealing with dry mouth for years so that's just on-going -- acupuncture has helped, as does wearing a mask all (sell most) of the time.

I thought it would be helpful for all if I put my PSA readings this time along side the ones from last time so one can see how they track.

[NDJIM]

I’ll e really interested in following your progress. Thanks for sharing.

[Krankies1]

congratulations and good luck. Is this a clinical trial as thought this was not common practice ? When did you start your very first infusion of Pluvicto. ?

Sure all will go well

[Miccoman in reply to Krankies1]

This is not a clinical trial. It is SOC but not a common practice, yet. Due to the expense most Medicare Advantage and private insurance plans' benefits manager will require a lot of convincing. Standards Medicare does not have benefits managers (although you want to have supplemental insurance to cover any co-pays).

I started my first round August 23, 2023

[Krankies1 in reply to Miccoman]

That’s excellent. I wish you all the success possible

Ron

[Docker53]

My husband had a phone consultation at London Health Science Center in London Ontario and now Tuesday we have an in person consultation. He has had the required Pet scan and so it looks like he is a candidate for Pluvicto. We are excited and nervous at the same time after reading posts of Pluvicto treatment. I feel a little more comfortable after reading your post here. Thank you for sharing. Is there anything you can offer in the way of how we handle the isolation period. We have a Golden retriever who loves his Dad as much as I do. How to handle isolation period of the 7 days they recommend is going to be a challenge. My hubby just turned 80 in January, however a young 80. He doesn't exercise however has a positive attitude on life most times. Obviously this vicious roller coaster ride gets us both down from time to time. We say to each other "Don't worry about tomorrow, because you lose the joy of today". Sending positive energy to you and everyone of you warriors on this site.

[Miccoman in reply to Docker53]

The most severe isolation is only 2 days. And then, it is only prolonged contact within 3 feet and mostly pregnant women and children (so that would probably include the dog).

I have been told that there is no problem being in an elevator with others immediately after treatment, so the restriction would be sleeping together and he has to sit down to pee.

The new guidance (see pluvicto.com) is "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."

[j-o-h-n in reply to Miccoman]

Shit! Does that mean he has to give up Saturday Karaoke nights? Man what a downer....... If he wants he can call me and we can hum together....(Hit those Homers Homer)....

Good Luck, Good Health and Good Humor.

j-o-h-n

[GSDF in reply to j-o-h-n]

LOL!!! 😅

[Docker53 in reply to Miccoman]

Thank you

[Ampa]

Good luck on your journey! I had success with my first rodeo with Pluvicto. May I ask if insurance will cover a second round?

[Miccoman in reply to Ampa]

Standard Medicare is no problem. Advantage plan will require jumping through hoops to get the benefits manager to ok this very expensive treatment. Probably same for private insurance.

NOTE: you have to have a supplemental insurance (medigap) plan to cover co-pays. You don't get all the "benefits" of an Advantage plan and you have to pay a monthly premium for the supplemental insurance plus a drug plan (plan D). However, the ~$300 a month (as of June) I pay for United Health Care Plan F is much less costly in the long run to any co-pay on what, last time, was $103,000 per injection. So far, aside from Xtandi, etc. my total costs beyond the supplemental premium for all my treatments has been $0.00

[Tinuriel in reply to Miccoman]

I had the same question - My husband is sailing through his Pluvicto treatments and we wonder if it could be repeated in the future. His bio is similar to yours (expect he tolerated 10 sessions of docetaxel, but it wasn't fun). Thanks for sharing.

[gsun in reply to Miccoman]

$103K per? Holy moly! That’s the highest I have heard yet. I can get it privately in BC for $25K CDN. According to a nuclear medicine doctor I spoke to, the cost is coming down to about $5K when the government funds it soon.

[SeosamhM]

Good luck, Miccoman. I'll be following! - Joe M.

[Ian99]

Have been following you for a while Miccoman. Thanks for posting. Good luck.

[Islandboy2021]

Great news for all us guys at this stage. I appreciate all your posts of your treatments with Pluvicto. It is real life experience of these treatments that can inform all of us guys that are going to go through this.

I was lucky enough to get my first shot of Pluvicto a couple of days ago. I am feeling positive that I will have the same results as you have and hopefully I would be able to continue with the treatments beyond the 6 rounds if needed.

I will add that having steroids before and during the treatments are working well. I was fortunate that I was already on steroids and pain meds before my first treatment. The only side effect I have is fatigue.

[Mbnm in reply to Islandboy2021]

In BC Canada Abiraterone Lupron working my PSA very low …if my PSA increases crazyrule say I have to try chemo before Pluvicto

Are youon a trial ?

What steroid are you taking..is it different than prednisone?

[vintage42 in reply to Mbnm]

"... crazy rule say I have to try chemo before Pluvicto."

That has changed. FDA has approved Pluvicto before Chemo in men who are metastatic and castration resistant. healthunlocked.com/advanced...

[Mbnm in reply to vintage42]

Yes…so far where I live in Canada no change it is still chemo first

[CAMPSOUPS in reply to Mbnm]

When that was the SOC not too long ago in the states some guys and even with a nod from their doctor sometimes said after one infusion of chemo "I just cant tolerate the chemo, etc., etc." Then it was ok to move forward with Pluvicto. "Patient cant tolerate chemo". "Will initiate Pluvicto treatment".

[gsun in reply to Mbnm]

I think that may change soon. Funding for Pluvicto is coming very soon in BC and that chemo rule may change. Hopefully…

[Islandboy2021 in reply to Mbnm]

I had to have chemotherapy first because that was all that available as SOC at the time. Pluvicto has now been approved in Canada for SOC. You might be able to get it instead of chemo now.

Not a trial.

I am using Dexamethasone as the steroid.

[Miccoman in reply to Mbnm]

Same as Islandboy2021, I am on Dexamethasone. And this is not a trial.

[Neathuh1]

Thanks for posting and please keep us up to date.

I completed the 6 Pluvicto infusions just a year ago and PSA is still under 1. Pray the same for you!

[CAMPSOUPS]

Thanks for posting. This crosses my mind often. My anemia has been improving over this past year too so the idea of repeating Pluvicto which I too tolerated well and continues to bring my PSA down (now about 5 two months ago) since my last infusion a year ago (April 2024).

Thanks again. Hopin this goes well brother.

[Pwjpp55]

Wow! Where are you treating? My MO indicates that you can only get a course of Pluvicto treatments once. I had Pluvicto, without a problem, and everything was under control for over a year! However, I did trip a radiation detector when reentering the US at a land border crossing!

[Miccoman in reply to Pwjpp55]

I am at the University of Rochester (NY) Medical Center. It is my understanding that Roswell Cancer Center in Buffalo also will do more than one round of Pluvicto (was told that by an MO there).

[Pwjpp55 in reply to Miccoman]

Interesting! I'm at the U of MN, where I thought they don't do it. Thanks.

[Cateydid]

this is awesome!! I’ve bagged my Joe’s onc long enough to explore a second round, it looks like that may happen.

They finally were able to do a biopsy on a new enlarged lymph node. It tested positive for prostate cancer, and is being sent off for additional tests. Wonder what they’re looking for and what our treatment plan will be….

[Pwjpp55 in reply to Cateydid]

A 2nd Pluvicto round? Where are you treating?

[Miccoman in reply to Cateydid]

They're probably doing DNA on the sample to see if there's an especially effective treatment for any particular mutation they find. Hope Joe's MO comes around! I think the initial hesitance was actually about scarcity. But with both US factories now in production they're even advertising on TV/Web now.

IIRC, the initial study had three branches: 6 injections, 12 injections and 6 injections followed by a pause then 6 more. I seem to remember that the 6-pause-6 was most effective but the 6 vs 12 was same result. Initially they had a lot of trouble getting Pluvicto so they went with just 6. I may have mis-remembered, though.