What is your recent experience regarding Pluvicto treatment and availability?

[Darryl]

What is your recent experience regarding Pluvicto treatment and availability? This is your opportunity to tell Novartis (the manufacturer) the good, bad, and ugly. I'll report ALL of your concerns to my Novartis contacts, whom I will connect with in a few days. Please don't hold back.

[Kayakbob]

I have had 4 of 6 infusions so far, no issues with supply other than an ice storm in December that prevented my first dose from being transported from the airport to my local oncologist's clinic.

[Nigel2023]

I have completed 6 Pluvicto infusions at Fred Hutch, Seattle. Would like to continue with more here once FDA approved. Otherwise I plan to go to Heidelberg for more Pluvicto or Actinium.

[Biobro in reply to Nigel2023]

Hubby is thinking of doing same. Final Pluvicto today in US. Do you have a contact at Heidelberg?

[strummer]

Pluvicto is currently not available at UColorado. Our oncologist in Vegas said they will be starting it next week. Hoping Colorado catches up. But on Jevtana and will add Carbo. -due to liver mets.

[Clydesdale2022]

I have 4 of 6 treatments of Pluvicto at the Mayo Clinic in Rochester MN. My treats were suspended due to quality of product and low supply of Pluvicto. My experience with Pluvicto was favorable for the first 3 treatments and non-favorable on the 4 th treat session. That treatment product may have have had quality issues and did seem to work. In addition, the side effects with dry mouth, loss of tasting, and raw mouth and tongue. Also loss of appetite and energy levels. Hoping to restart the Pluvicto treatments soon, when supplies become available and wishing to take 3 treatments!

[Clydesdale2022 in reply to Clydesdale2022]

sorry, treatment did not seem to work….

[meowlicious99 in reply to Clydesdale2022]

couldn't gather from your profile, did you already get chemo ?

[Clydesdale2022 in reply to meowlicious99]

Yes

[Ollie1948]

It didn't work in my case... doing Chemo now

[Yank66]

So thankful to be in Pluvicto program. 89% decrease in PSA, so far. But after 4 treatments, the fatigue!

[Biobro]

Spouse has had great experience on Pluvicto. Only treatment so far where his QOL has been good. Just waiting for his 6th infusion today. Like a few others he felt that the infusion after the supply issue hiatus (4th) was not near as effective as the other 4. He had almost no reaction to it and the 5th one he could feel in all his bones.

[RunThru]

I had 6 treatments 6 weeks apart. Initial PSA 15, final 35.5. After treatment 5, I began to lose steam. Hemoglobin dropped down to 8 just before last one. Now 6 weeks after HGb has not done well, about 6.5 at lowest and needed transfusion. Also PSA is 170. Wondering if pluvicto had this bug effect on bloodwork.

[RunThru in reply to RunThru]

No trouble getting. Once in the queue I was always set for next. Ohio State university

[profsailor]

hi Darryl!

I had to go to London for Lu-177 treatment in May since I couldn’t get it in the US. It was quite an expense out of pocket. My second treatment will be Pluvicto at Duke on July 5th. Novartis has apparently made it available again. Only side effects with first treatment were fatigue and minor waves of feeling nausea first couple of days.

[meowlicious99 in reply to profsailor]

curious why weren't you able to get it the US ?

[TTJJ1]

I have had 3 of 6 treatments of Pluvicto at Dana Farber. The first treatment was canceled a few days before scheduled infusion and then on the scheduled day I was called to rush to Dana Farber that the Pluvicto arrived. My experience with Pluvicto has been overall favorable for the first 3 treatments session with some SE. The side effects are, dry mouth, loss of tasting, bad taste all food, and raw mouth and tongue issues. Tried many remedies which did not help. Just started taking Pepcid, vitamin B and Zinc which seems to help with taste issues. Also loss of appetite and energy levels. Next infusion scheduled late July. The good news is that I have had a 72% drop in PSA (68.37 to 19.36 today). Next PSA level will be day before next infusion. Have not had any further issues with availability so far.

Darryl, Thanks for taking the time for all this, much appreciated.

Best Wishes to ALL - STAY STRONG.

[LongTimeRunning]

I'm in PSMAddition trial. Was originally scheduled for my 2nd treatment June 29, but they rescheduled for June 28 (yesterday as of this writing and I was treated). I was told it wasn't available on the 29th, but was on the 28th. Assuming they are juggling availability. I was told the Lu177 was coming from New Jersey,

[db1966]

I’m nearly 8 years in with my journey so have competed just about every treatment and with chemo have started my 3rd go around. Pluvicto did not work for me. After 3 treatments the pain became unbearable and scans showed that disease had progressed quickly into all of my right pelvis. I started to doubt the quality of the Pluvicto as I was being treated in between the shortages. Has the quality been compromised? I’m only 57 yrs old and I feel I am running out of treatments and at the back of my mind I wonder if Pluvicto in some way progressed my disease.

[Yadifan]

My husband received all 6 treatments of Pluvicto at Banner in Gilbert AZ. He did well during the treatments with little side effects or issues. We were concerned about his HGB levels which were low but never got below 9.4. His PSA at the start of treatment was 108.5. At treatment #6 it was 1.98. Now 3 months after treatment it's back up to 8.45. We're discussing cabitaxel as our next treatment-which is discouraging. I am grateful for his doctor and the staff that fought so hard to get him on Pluvicto. He was the only commercial patient able to receive it at that time. There was one other that was a clinical trial there but unable to complete all 6 doses. Not sure why. My husband was able to receive all 6 doses timely when there was such a supply issue. They put a high priority on the patients that were in the middle of treatments. I believe that all doses came from Italy. It was a smooth 6 months for him with very little problems. I know that many do not get this far and I'm grateful for this time. My only negative is that I would hope with the cost and the problems getting qualified for it that the positive effects would last a little longer. And maybe they do with some. I absolutely hope so. Such a promising drug.