Do you have concerns about current Pl... - Advanced Prostate...
Do you have concerns about current Pluvicto availability in the USA? Everyone, Please write out your concerns as a reply after voting.
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I am only on Lupron. 3 years and counting, PSA undetectable, so far.
I am relatively new to this site and prostate cancer. Just 1 1/2 years in at age 67. My biggest concerns with any of these drugs is not only being available but also who can afford them.
Pluvicto currently not prescribed but I am aware of shortages in the USA as well as other anti cancer and hormone blocking agents
Subject: Pluvicto
Hi Darryl. My main concern is side effects and in particular the effect on salivary glands. And is there any way to mitigate?
Thanks.
This US problem is a result of voting patterns unique the US political dysfunction.
Appointment of political supreme court justices that support and protect "corporations are people" and legalized political bribery that is prohibited in the EU and other developed and advanced countries.
Not much can be done to fix it unless and until the pharmas are forced by law to compete on an open playing field against one another.
That can only happen when they are prohibited from buying favor and privilege from lawmakers who should be representing the interests of individual citizens as opposed to the phaad, many of which are not even US corporations.
Just speaking the incontrovertible facts. Any other changes will be just window dressing.
Not using Pluvicto yet, but do have concerns about the shortage. My MO tells me i have 'emerging castrate resistance' which means he will start digging into that toolbox of available additional treatments, and i hope Pluvicto is available when i get to the point of needing it.
I believe a lot of radioisotopes are in short supply due to aging research reactors. For example I was told that the reactor in Chalk River, Alberta is stretched to capacity and worse, may need to be shut down.
Fortunately I am not to that stage yet. Zytiga and Lupton seem to be holding the fort so far. I am 80 years old and stage 4 for 7 years so it may be in my future. It seems that a shortage of life extending drugs of any type should be of critical importance to all of us.
I believe Pluvicto will be my next option if my cancer worsens significantly. I would prefer, for cost and care reasons, not to have to leave the country to obtain it.
My concerns are actually with its availability in Canada. The drug is approved by Health Canada as SoC post-chemo but is neither readily available nor funded. Just yesterday, the president and CEO of Bruce Nuclear in Pickering Ontario bragged that “[W]hen we brought our new production system online with the first few production runs, we made more lutetium 177 than was made everywhere else in the world to that point in the year.” Yet Canadians can't even access it properly because Health Canada has not issued a DIN (drug identification number) or NoC (Notice of Compliance) which means that healthcare programs which are run provincially cannot properly request funding. The cost is prohibitive. I am currently awaiting further information from my MP (who has been in touch already) with regards to how to proceed in a campaign directed to Health Canada. Once a DIN and NoC are obtained federally, my Ontario MLA will move on funding requests.
I realize this might muddy the waters for your US concerns, but there are many Canadians here. Some have accessed Pluvicto through studies and some are paying for treatment privately (I believe in BC and Quebec).
Here is a link to the news story I've referenced: london.ctvnews.ca/federal-c...
If this response just causes complications, I understand you might delete it.
I have no idea what that weird attachment is. Just ignore it.
my treatment did not give the results I wanted since my PSA continued to climb, I was out of the program after 3 treatments. And at that time I wasn’t aware of any shortness of product, but I have read that there is a definite supply shortness. And I have heard that the quality of the product is not up to standard.
I have had two treatments with excellent results but had to go to Germany to get them. My concern is that they do not have enough here in the US so they limit it to a last resort after chemo, when I believe it will not be as effective. Most who would benefit can not afford to go out of country for the treatment.
My treatments were deferred at Moffitt in Tampa.. but I was informed last week that a new supply is available and I was rescheduled for cycles 5 & 6 Sadly my PSA continues to rise, but I am told not to be concerned?? and they are going to continue my treatments.
Husband on Pluvito - has had two treatments (the second last Tuesday which was delayed by a week due to shortage) so definite concern!
I just completed my sixth dose so my only concern is for others who need it
Darryl, Monday I was told results of PSMA and genic testing. Currently on Cabazitaxl, but oncologist is ordering and scheduling Pluvicto to begin in August due to the increased cancer now in organs. Show I be concerned?
Frankly until then I will give up red blood cells during well tolerated Cabazitaxl.
I’ve been scheduled for six treatments and believe Novartis has resolved its supply chain issues. I hope so!
I have managed to stay hormone sensitive for 15 years with LIM plus MDT and I hope pluvitco is not in my near future and when it is there will not be a supply problem or alternatively it will be superseded by actinium 225 or other alpha particle with a cold blocker.
I have recently completed Pluvicto treatment #4 and found availability the easiest so far. My previous 3 treatments were done after having had just 24 hours prior notice, and was told if I didn't accept they would not be able to tell me when it might be available. This is no longer the case. Scheduling is now much easier, including for patients wanting treatment #1.
I am supposed to start treatments with Pluvicto in September so I hope there is not a shortage.
Availability is definitely a concern. My husband has had 4 treatments which appear to be working (89% drop in PSA from 194 in December to 22 Monday). He had one delay because of unavailability, and it remains a concern. We were fortunate he began treatment when he did and remain concerned for those that need it.
this is an odd survey, as there is no way to show those who are not having problems with supply. I currently have no 'concerns' re supply, have completed 4 of 6 infusions so far, and supply has not been an issue. I do understand that for some there are current supply issues, but understand that additional production capacity is being brought on-line fairly soon.
It is not clear to me if Pluvicto is now readily available in the U.S., outside of a clinical trial. It is clear that a number of men are still seeking Pluvicto overseas, which indicates to me that there are still limitations for me who need it.
I find it concerning for those currently on this treatment. Although I haven't heard I of anyone specifically who has not been recieving if they were currently being treated.
IT also concerns me that I might not be able to get, if my Medical oncologists decides this is my best treatment path in the near future ( which is a possibility)
I have been on Orgovyx since 10/2021 and it has been going well with PSA consistently undetectable, so currently Pluvicto availability is not a concern for me.
pluvicto, according to my doctors in SoCal have told me that getting pluvicto is no longer a problem. Orders and shipments have been made in required quantities the past 1-2 months.
My husband had his first dose today after waiting several months due to supply issues. Praying others can get their doses when they need them.
I do have concerns for others. I completed my pluvicto treatments in February 2023, but it appears that many other have had their treatments interrupted or unable to start.
this is not relevant to me at this time but I am very thankful for you tracking this and many other meds and treatments on our behalf.
Hi Darryl- I was on the Pluvicto treatment until March 2023. That was my 4th treatment of 6 and my Pluvicto treatment was discontinued. The reasoning was the “quality of manufacturing of the product “ was not meeting the standards and the supply was greatly reduced. I am currently checking with Mayo -Rochester and my Oncologist to get an update on Pluvicto quality status supply and my ability to reconvene the treatment plan to complete the remaining 2 or more treatments.
I have just completed treatment #4, I'd hate to see it come to a screeching hault with just 2 treatments left. But my oncology is being serviced by the Cleveland Clinic, so I'm guessing they have some pull.
I thought there was a war on cancer, let’s get this resolved
I worry about future shortages for my husband and for others who may need it someday.
I have had two Pluvicto treatments. Four more to go, I hope the supply will continue to be available.
For those concerned about salivary gland damage. I was given ice packs around the jaw during treatment and two hours after.
Hi Darryl,
I know that at some point my PCa will advance to the point that Pluvicto will be one of my choices. It's important to know that it will be available when its my best choice.
Very concerned about the shortage of Pluvicto and other lifesaving drugs.
My husband is on Jevtana due to Pluvicto shortages.
Currently my son is taking generic Zytiga and prednisone along with Lupron injections and has finished radiation. PSA dropped from 20 to .07. PSA test coming up in July. I hope if he needs Pluvicto in the future that it will be available and of high quality for him and everyone else.
This may be the last line of defense for many of us. I have been on Zoladex for 4 years and Xtandi for 1 and my PSA is rising Oncologists are treating me like a number already dead just hasn't laid down yet
Cost and availability are huge concerns. Given hormone resistance and PSMA expression, it is a critical option which may not be available.
I was fortunate to have only one delay in receiving treatment from Mayo Clinic. I wish these supply issues would be resolved quickly as I know many are waiting for this treatment.
I am concerned about all drug /treatment shortages our medical system has run amok and the pharmaceutical companies are only interested in profit.
I am now scheduled for Pluvicto in August. Originally it was April. This is the treatment of last resort for me so, yes, I am concerned about supply issues. Without treatment, only pain management, my MO guesses I have a year or two left. And if Pluvicto doesn't work for me, then...
I’m currently on Pluvicto going into my fifth treatment. There has been one treatment temporarily postponed due to shortage, but was caught up within a week.
I had an appt on 6/30/23 and my Oncologist said the Supply was now getting straightened out for the US...so No! I will be starting the New clinlical trial for ARV-766 As I have become mcrpc!
