I am collecting all feedback on Provenge treatment. My MO did not talk further and did not believe in it, so I am now collecting feedback and learning more about it.
I am searching for someone who had Provenge therapy in the past or is planning in the future and is recently taking the treatment.
Could you share your views on it? (In case if you want to learn more : provenge.com/)
Update:
I learnt Urologist is more close to provenge treatment rather oncologist so now searching urologist and seeking opportunity
Update:
Urologist submitted to insurance and here is the form
It increases survival. How would any individual be able to know? You have to look at the survival of one large group of men who used it vs another large group of men who didn't use it.
Agree My oncologist do not want to talk further, He said he never used, he never recommended to anyone and no plan to do it. lol. i think time to change oncologist
Oh, ok, I misunderstood. Did it ever come up in discussions with your oncologist as a choice? I ask because I've never understood where it fits into the range of successive treatments.
I think SOC has a map they follow, I know certain treatments are done in a specific order. As for me I dont think I am there yet so never in the conversation. I am also BRCA2 positive so my treatment will look different from others
Got it, thanks. I think you're right. With regard to Provenge, though, it seems like a poor relation, all but forgotten. I found an article that partially explains why. Apparently, it had a troubled opening act due to price, the company's financial problem, lack of promotion, etc., back over a decade ago. Plus some other treatments came on board shortly after it appeared that were just as efficacious.
Certainly something to consider. I'm still castrate sensitive, but while I see Provenge mentioned here and there, it t does seem to be discussed much more sparingly than chemo, Pluvicto, Xofigo, and other advanced treatments.
I did not use it but I think good place to start discussion. I would say start discussion with urologist first. In USA urologist do believe in provenge more than oncologist
You could possibly rechallenge with Xtandi after docetaxel..then you could work on your MO to do oxfigo and Provenge next...I think there are clinical trials showing synergy
Here in British Columbia, Canada, the government pays for cancer treatments. It is my understanding that they will not pay for Provenge because, in their analysis, the benefit to patients does not justify the cost. It does not work in many patients and, when it does, there is not a significant extention of life.
That is the same ‘attitude’ some doctors in the US have adopted. If they don’t have any means to gage the effectiveness in the individual then the cost isn’t justified. The clinical studies data is deemed insufficient or irrelevant. Total BS!!
I have not read any Provenge studies so I can't comment on that. My partner is a cancer research scientist. He says that, while there can be some benefit with Provenge, it is not nearly as effective as the other approved treatments. That is why it is not paid for here. There is a limit to the amount of money available for cancer care unless we all want to start paying more taxes.
I won’t argue there aren’t other treatments which can give a ‘bigger bang for the buck’ or that financial resources for cancer treatments need to be managed efficiently. But the trial data I’ve seen suggests to me it’s a viable and worthwhile treatment for certain individuals within a fairly narrow window of eligibility; i.e., very early on in the transition from CS to CR status. Widespread application doesn’t seem fiscally responsible, but outright rejection in all cases also seems unreasonable IMO.
I took provenge. I did a lot of research. Interestingly, a breakdown of the Provenge phase 3 trial by PSA level at onset, showed that the lower the level of PSA, the longer the survival. The thinking being that it is more effective earlier. The side affects are nominal and short lived, it uses your own immune system and there appears to be no major risks. It doesn’t preclude other treatments and in fact does best in conjunction with other treatments. If it’s not a cost issue, why not?
I had Provenge about 5 years ago, when I was 56 years old and on Zytiga and Firmagon. I was (and am, barely) still responsive to ADT. I had to argue with both my oncs and insurance to cover it. I had virtually zero SEs. I’ve always done iADT. My vacays prior to Provenge, in five months my PSA would rise to approximately 100. In the two vacays since, PSA climbs to around 25 in the same time. Just returned to Zoladex last week. I give Provenge high marks in my case. Good luck!
I had Provenge treatment a couple of years ago. Beforehand I studied the trial used for its FDA approval which showed a survival benefit, especially for those who had a PSA <5.0 at the time of treatment. I’ve always been a fan of utilizing different therapies concurrently to treat my prostate cancer (something I got from Snuffy Myers).
My Dad was diagnosed stage 4 prostate cancer in 2011, just after Provenge became available here. It had spread to his liver and a couple places in his bones.
He's had some other treatments since, but we firmly believe Provenge has given him years instead of the months they originally thought. The bone and liver tumors went away with Provenge.
He's still overall feeling good, and in 2023 started Pluvicto, which he completed in Jan 2024.
In between, he's had some radiation and chemotherapies. The liver tumors have not come back, some tiny bone tumors have, and one soft tissue tumor.
His oncologist has been amazing and has happily worked with the radiation oncologists and the oncologist for the Pluvicto (only available at a research hospital 2 hours away)
Medicare has covered everything (including Provenge and Pluvicto) except for small copays on some regular Rx's and a less than $400 annual deductible. He does not have Medicare Advantage but does have the BCBS part (sorry, I forget which letter) which covers what original Medicare does not. This does cost an extra $200 or so a month( I think, I'm writing this from memory)
He is not restricted on which network he can use, which has simplified things since he can use Novant & Atrium doctors and sometimes doctors move around.
The extra cost for the BCBSNC has more than paid for itself since he was basically diagnosed right after joining Medicare. No surprise bills along the way to be paid and they have, in a timely manner, approved all treatments the oncologist prescribed.
Thank you for sharing his story with us. I was De-novo stage 4 in 2020. I am starting a B.A.T./provenge trial next month. 14years with this disease and doing well is inspiring.
I have had four treatments in 2023, in Germany. I am 84 and have prostate cancer discovered in my lungs and in pelvis in2019. After last treatment, developed neutropenia and platelets crashed but recovering with little physical side~effects. There are test to predict if it should work for you, so I would get an oncologist who is open to it before doing chemotherapy.
Dr Josephin Meister at Zentralklinik, Bad Berka was the attending physician and is the or a Senior physician, Department of Nuclear Medicine there. All arrangements for my treatment were through Dr Frankis Almaguel, who attended there, but has his practice in Loma Linda California with an office in Miami, Florida also. The contact info for Germany according to my paperwork is "nuk@zentralklinik.de" and tele# +49 (0) 36458 5-2101. I worked entirely thru Dr A, Biogenix Molecular, Mobile +1 (909)-648-2037, so I have not tried to set up anything directly there.
Dr A has been taking patients to Bad Berka for 7 or 8 years but is currently trying to set up treatments here in the states. Of course you pay more for the treatment in Germany as he flies over and attends. I met him when trying to get into one of the trials he monitors here in the states. Best wishes Clay
Finished my Provenge cycle of treatments last month. Minimal side effects. After the 3rd infusion I had flu-like symptoms for about 36 hours. Much less so with the 2 prior infusions. There’s really no way to gage how well it works from individual to individual. Overall the studies data indicate the lower the PSA and T when administered the better the likely effect.
My MO supports delaying any other subsequent treatments which disrupt the immune system until they become necessary. The idea being that the longer the enhanced immune system has time the work on the cancer cells the better the chance of a positive outcome.
I had the 3 treatments in November in 2023. No side effects. Hardest part was sitting in the chair for 3 to 4 hours while they extract the cells. My local MO was not enthusiastic about, but it was recommended by another MO that I use for 2nd opinions. My thoughts were "no harm, no foul" in other words there appeared to be no downside. Good luck.
My original MO at Moffitt Cancer Center, a Dr Zhang (a research guy), told me at the very beginning of my treatments that after bicalutamide/Casodex and enzalutamide/Xtandi or abiraterone/Zytiga stopped working he recommended Provenge.
He said it would have no effect on my PSA but would, based on his research, increase quality and length of life.
So I had to just tell my current MO that I wanted it, and since standard Medicare doesn't require pre-authorization, he really had no grounds to deny me it after he explained that he didn't believe it would benefit me and the hurdles my local teaching hospital has erected to discourage it. And my current MO is the "golden boy" at the hospital so crossing him was the beginning of poorer relations. But I'm terminal so eff him and his attitude!
I went ahead and had the treatments even though I had to travel 2 hours to get the leukapheresis (where they spend 3 hours with you immobilized while they strain out white blood cells -- very strange experience, also Depends highly recommended At least I got the infusion locally.
Started in late April with PSA at 2.57 and ended mid-May with PSA 2.37. PSA rose through the 3.xx in June and July and jumped to 8.0 in August. My MO put me back on Xtandi which kept things lower until the following April.
Then came docetaxel = bad experience, stopped after 4; cervical radiation = worse experience.
Pluvicto has worked very well for me. Don't know if Provenge is playing a role but I now feel better than I have in decades (also, I had an orchiectomy just before the Provenge so I don't take Lupron any more = no chemo brain, few hot flashes, no mood swings).
Hello miccoman where can I find provenge treatment in the USA? What is the technical process to begin with?I'm interested and my mo is supportive but we dont have the treatment here and he doesn't know where i can get it, so he sent me to do my homework and he will prescribe it for me and help with the insurance to pay for it.
Hi Niso. Provenge is available at most major cancer centers and big hospitals around the USA. You may have to push to get it as it is not highly regarded by many MOs because it does not reduce PSA -- but I am sure it has helped my QOL.
I would start here: provenge.com/hcp/contact/ Call the manufacturer and they should be able to get you what you need. As always, they have to list all the SEs but I had exactly none.
Otherwise search for Provenge [your state] and start calling.
Process is not much, for a change!
You get approved, then go to a center and sit for 3 hours, completely still with a metal needle in each arm, while they filter out T cells (don't worry the place is set up for this and will make it as comfortable as possible).
Then a few days later you will return (or, in my case go elsewhere) to have the T cells, now sensitive to prostate cancer, infused back into you. That takes an hour or so, IIRC
Wait a few weeks, then do it again. Wait and do it one last time.
I had the treatment about 10 years ago and they said it failed? I'm still here and I say it might have not cured me, but I think it did something for having the most aggressive type of prostate cancer.
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My oncologist do not want to talk further, He said he never used, he never recommended to anyone and no plan to do it. lol. i think time to change oncologist 
At least I got the infusion locally.
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