What are your concerns about the re-s... - Advanced Prostate...
What are your concerns about the re-start of Pluvicto supply in the USA? Everyone, Please write out your concerns as a reply after voting.
DarrylPartner51 VotersI will advocate to the Pluvicto company for your concerns this Friday morning, so please respond. (sorry for the short notice. I just learned of this meeting opportunity.)
Please select one:
I will be starting it May 18th, earlier than the July I was told earlier. Apparently, I’m taking over from someone that was unable to go past the first treatment
I am concerned that there will still be a long delay before men who are not in a clinical trial but who need Pluvicto are able to get it.
Not relevant to me in Northern Ireland
My husband starts on 5/22 when it became available. My concern is , half the men that have taken it has become worse. Was that the reason for the sudden stop of this drug?
where did you get this info from that half I’ve gotten worse. That’s a concern for all of us particularly myself as I have only done 2 so far.
A voted not relevant to me, although as we all know it may become relevant in the future. If I was taking this treatment, I would like to ensure that a steady supply of Pluvicto was available. It would be tough to be mid-treatment, and find that supplies for you are no longer available.
I'm a bit concerned by the actions of the FDA, in that apparently the plant making Pluvicto in the US, is also making another cancer drug, Lutathera. Somehow this is also labeled as not for use in the US, for quality reasons, but it is being shipped and used in Canada.
I am in Ontario Canada and can’t get Pluvicto. Does anyone know if you can get it here
I don't know about this drug.
Timely availability.
I feel like we are dealing with a very unprofessional company. I received a call from Oncologist end of Feb to schedule 1st treatment, already had the PYL scan.
Received a call 30 minutes later that I have to wait 2 months. Its 2 months later and now im being told its June.
Reading from other sources indicate august to end of year. I read lame excuses that Novartis did not expect such demand which is BS.
My Onc did not even tell me about the SPLASH trial. He wants me on chemo and change off of xtandi and orgovyx. F it im done with this crap. F Novartis.
My husband was in the middle of his 6 treatments and was given 3 days notice that treatment #4 was cancelled for supply problems. The RO was fighting their patients' corner continuously after that and he was started again 12 weeks after the previous dose. It left him devastated because it was working so well and he felt so great. The delay meant PSA started to rise again and almost doubled. We both felt as if he was back to square one. Back on track now but have absolutely no confidence that the schedule will be adhered to.
I had 5 treatments ending in Feb. 2023. It helped reduce my PSA and significantly reduced cancer lesions. I am back on chemo now as and am holding my own. I hope others can get treatment. I may need again in the future. But right now I am looking for alternatives.
My husband died on Tuesday, 4/25/2023 from his seven year fight with advanced pc. Not relevant to me .
Condolences
my deepest sympathy so very sorry for this great loss .
Condolences, it is a terrible disease that hopefully will get more treatments that work .
I’m so sorry..
My sympathy for your loss
I’m sorry
I am truly sorry for your loss. I pray that God will give you strength to get through this. It’s not easy and will take time, but you will get through.
I'm.so very sorry. Condolences
How do they determine what facility gets the drugs? By state, cancer center designation? My husband was slated to begin Pluvicto in March/April. We’re still on the waiting list. On this forum someone posted that a FL clinic had administered the drug to someone on the wait list for 6 weeks. Severity of illness certainly merits triage of patients, but I’m concerned the this may end up being the Hunger Games and may the odds be ever in our favor. We’ve not received a call for any future scheduling.
I started abiraterone after my PSA started to rise 2.5 years ago. My PSA is still undetectable. This is much longer than I expected. I am hopeful that it will be easily available when my PSA starts rising again.
I voted not relavent to be because I started pluvicto last July 2022 and finished up in February 2023. But my concern for those getting started is simply availability and not having to start/stop/restart.
Did Novartis stop the supply because of complications? Some have reported they got worse taking this drug. Is this the new and improved formula?
I don't know enough about Pluvicto; that said, if the warriors on this platform and beyond can benefit from it then it should be made available in the US. Moreover, if Pluvicto is helpful then steps should be taken to ensure that there is consistent supply for those who might need it. Part of the discussions should include support for those who might need it but may need a little help in order to afford it. Best to each and every one of you my brothers and the few sisters on this platform.
is it possible to establish with Novartis what the results are so far with patients who have completed treatment in the last 12 months. Most Pluvicto and cancer forums are expressing concerns about success rates so far but nobody can back that up. I was fortunate to have had my 2 treatments so far but the 3rd is an 8 week gap due to ‘supply issues’. Can Novartis assure us that the patients who have received treatments are doing so without quality concerns.
It is not relevant to me at this time but it is highly probable that it will become my next line of treatment in a year or two. I hope this issue can be resolved in the near future.
Will delays in receiving treatments affect the success of the treatment? My husband had a 2 week delay between first and second treatment.
I’m concerned that the factory is sterile and efficient and the supply line be stable. Just had #3.
My concern is what safeguards have been put in place to avoid future supply shortages.
I am concerned that treatment might be interrupted again if there are manufacturing issues with the facilities.
I cannot wait, it is a game changer and will help ease the supply. Hospitals need it to treat us that nothing else works or on the brink of getting it.
It is not applicable to my husband yet, however, based on the studies I have read, I hope that it is available to anyone that needs it especially since it is targeted and not full out chemo. So many studies using targeted or low does chem seem to be much more effective and definitely have less side effects. This just seems to be the logical route to take and everyone should have access to it when they need it and for as long as they need it. We are talking peoples' lives.
I completed 5 courses, the last course in December. PSA responded very well, to <0.1. Post treatment labs for first 4 doses fairly stable. However, after the 5th course, my HGB, HCT and platelets dropped dramatically, with resultant severe renal failure. My choice at this time is dialysis or death.
I believe the last dose may have been problematic. I suspect an inadvertent overdose, as my MDR (measured dose rate) measured at 1 hr after infusion, and at 1 meter, was 7 mrem/hr, a level twice that of any other treatment that I had received. MDR on first four treatments measured 4, 5, 5 and 3.5 mrem/hr. I believe something went wrong, either the supplied dose from Novartis was excessive, or perhaps the assay was in error. In any case, the fifth treatment resulted in severe damage, perhaps lethal.
It is the next drug that I am likely to get since I am PSMA positive. Just completed chemo required before Pluvicto and in a wait to see status until next PET scan. The drug was unavailable in Denver last Fall except for research institutions.
I am not to that place in my journey yet but I am very concerned for my brothers that are. As we ALL KNOW, time is of the essence for us!!
Not available in UK
I’m concerned that it won’t be available in smaller communities. Also, what is best way to find Pluvicto? My husband is on chemo until Pluvicto is available.
I completed my 6 doses in March, but I know people waiting to start.
My biggest concern right now is getting scheduled for my treatment, then I will be concerned about the availability of supply so I can keep my schedule. I hope that intensive research will continue with this drug and others like it so we understand who are the best candidates for successful treatment — at this point, feels a bit like a crap shoot but I’m eager to give it a try.
As a patient who has had 3 treatments so far, I hope there will be more flexibility as to when I will receive the remaining doses. To date, I have only been given 24 hours advance notice as to when the treatment is available and must be done at that time.
Would also like to have availability of more than 6 treatments as appropriate
I just saw my Joe’s PSMA report last evening. Although I don’t know what it all means, I believe I accurately read of multiple spots in his body that lit up on the test. (Some at his ribs where fractures appear to have happened. Did cancer land there since he fell earlier this month, or was the cancer there and caused the fractures when he fell? Why didn’t fractures show up on the X-rays he had after the fall?)
We don’t see the onc till May 5th, and I’m already concerned because of the Pluvicto shortage, as that’s what his doctor suggested would likely be the course of action.
I would ask that the manufacturers produce more of the drug as if it was the next step in the care protocol for their loved ones.
Thus is further evidence that our healthcare system uncluding Bug Greedy Pharma is broken.
praying for every possible Rx for this terrible disease
Absolutely relevant! Was planning on Pluvicto between docetaxel and carbazitaxel. Had to go straight to carbazitaxel due to shortage. Pluvicto will be “last chance” barring any new clinical trial.
1) how are/will patients be prioritized (after those currently mid-treatment)? First-come first-served? Through trial vs not? Where on treatment timeline (ie oral meds, chemo etc)
2) how will they ensure no stop/delays once patients start cycles this time?
3) would like them to make public the data they’ve collected since out of trial. (Safety, efficacy, side effects, etc) as it may change as more people use the drug
4) will NJ product be for US only or will it ship out of US to help world-wide shortage?
Cost and Insurance approval always a concern as well as the fact that there are very mixed results.Also pluvicto needs to be produced at multiple facilities.
Also what is status of clinical trial that was to complete this spring for treatment much earlier in the disease. As in hormone sensitive.
Second company also had trial to get their version hopefully approved this spring 2023 and news on that?
