Provenge: I'm at the 5-year mark on... - Advanced Prostate...

Advanced Prostate Cancer

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Provenge

dhccpa profile image
29 Replies

I'm at the 5-year mark on Lupron only (except for moderate demos man). All-time low PSA was 0.5 in 4/2021. This year 1.01, .98, .97 (two months ago). PSA up and down over the years. Axumin PET scheduled for January, last 9/2021. At least three bone Mets, two in vertebrae, one inside hip socket.

Am I a candidate for Provenge (among other things)? Can it be combined with AA, Radium 223 (I have no pain)?

Thanks.

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dhccpa profile image
dhccpa
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29 Replies
6357axbz profile image
6357axbz

Why an axumin scan and not a PSMA PET-Ct scan?

dhccpa profile image
dhccpa in reply to6357axbz

My previous scans have all been Axumin. A PSMA wouldn't change anything at this juncture.

Tall_Allen profile image
Tall_Allen

Your MO may be able to make a case for your insurance that you are castrate resistant, especially if your Axumin PET shows progression. Even a small report of back or hip pain should be enough to get Xofigo approved.

dhccpa profile image
dhccpa in reply toTall_Allen

Thanks. And I should have clarified that I was asking for whenever it is first determined that I am castrate resistant.

Which treatment or combination did you mean? Just Provenge? Or something else or a combo?

Tall_Allen profile image
Tall_Allen in reply todhccpa

They are both approved only for castration-resistant men.

dhccpa profile image
dhccpa in reply toTall_Allen

One more question. I'm sure my MO, if he adds anything, will try AA initially. Is there any case to be made for also adding either Provenge or Xofigo at the same time? Or instead of AA?

And where does chemo fit into that mix?

Thanks

Tall_Allen profile image
Tall_Allen in reply todhccpa

Here are some combinations with Xofigo:

prostatecancer.news/2021/02...

dhccpa profile image
dhccpa in reply toTall_Allen

Thanks

robert570 profile image
robert570

I think you are. I had bone mets on my rib cage, back side of my neck and spine in the middle of my back. I had Provenge 10 years ago and they told me it didn't work. I've had all possible treatments that worked for awhile, but then those nasty cancer cells find a way to get around it evetully. I'm currently on Jevtana and Carboplatin. The best treatment that I had, put me into remmision for almost 4 years. That was Aibiterone Acetate with Prednisone. My PSA ranged from a low of .18 to a high of 2.0 for 9 years and now has spiked to 22.83. The spiking was caused by Pluvicto, which failed me. I had to stop after 3 infusions becaus it kept doubling each time. The most important thing I tell everyone is that each of us are different. What works for me might not work for you. Good Luck and keep fighting.

dhccpa profile image
dhccpa in reply torobert570

Thanks. That was helpful. Sad plus Prednisone probably will be next, just wondering how to make it even more effective.

Seasid profile image
Seasid

My MO recommended me this Clinical trial with the latest none toxic parp inhibitor from Astra zeneca and Nubeqa from Bayer until it fails.

I am also on ADT alone for 5.5 years. Maybe you could first SBRT your visible Mets if any. (I don't have any visible Mets only CRPC in my prostate.)

I was polymetastic in my bones at diagnosis. My PSA is rising rapidly now, last PSA was 1.42 this week.

Study of AZD5305 When Given in Combination With New Hormonal Agents in Patients With Metastatic Prostate Cancer (PETRANHA)

classic.clinicaltrials.gov/...

Seasid profile image
Seasid in reply toSeasid

Maybe you could get a PSMA pet scan as it could determine the SUV max of your metastasis if any. I just had one very recently an I had to pay 700 Australian dollars what wasn't a big deal for me for a peace of mind. I am not even sure if I could get here in Sydney your pet scan? I also had a nuclear medicine bone scan and it was free. I paid 500 dollars for the mpMRI of my prostate to see if I have a recurrence there.

dhccpa profile image
dhccpa in reply toSeasid

A PSMA scan wouldn't change treatment, although I'll probably have one eventually.

Radiation has never been recommended. Too many possible Mets before treatment began.

Seasid profile image
Seasid in reply todhccpa

I was thinking about visible Mets. maybe you don't have any? Maybe your cancer is only visible in your prostate? At least it was my situation. You are still hormone sensitive. I don't want to rush with treatments. I would gladly take Provange if I could. Why do you believe that the Mets in your bones are not stable? Why do you think that it is not your prostate? Do you have any symptoms?

Find out if you have any visible cancer and then make a decision. If you have any visible Mets try to SBRT them if it is safe. And get Provange as soon as possible. (I would if You could).

Seasid profile image
Seasid in reply toSeasid

My MO requested PSMA pet scan. He was on the hunt for Mets to put me into that clinical trial. The inclusion criteria is to have a met. That is logical to me. If you don't have a visible Mets why would you change your treatment?

Seasid profile image
Seasid in reply toSeasid

I will rather convince myself that my treatment is still working and if it is not working than I would like to know where is it not working. Xofigo is better to avoid if you don't need it. My first MO said that Xofigo should be the last treatment option as it is not a system treatment (it is a local treatment only for the bones.)

I am hot showering my Mets and that acts as a vaccination, therefore a system treatment.

dhccpa profile image
dhccpa in reply toSeasid

I have three bone Mets, but at diagnosis time I had as many as ten. At least, that's what the radiation oncologists told me, thereby excluding me from radiation.

I will only change treatment if needed. Still learning about Xofigo, Provenge, etc.

Seasid profile image
Seasid in reply todhccpa

I would myself do Provenge but it is out of my financial rich now. I would need more than 120k US$ and I don't have that amount of money. As I said Xofigo is only a local treatment plus it could cause bone fracture. Are you on any bone strengthening medication like denosumab? (I don't recommend it until your bone Mets are healing and you are in a hspc phase of the prostate cancer. ) Without zoledronic acid or denosumab it is not recommended to get Xofigo as it can cause bone fracture. It is Alpha radiation and can cause fracture. If you don't really need it better to avoid it. I would only take if for bone pain palliation or if I would run out of other options. I was doing my PSMA pet scan when someone on the actinium PSMA clinical trial was that day doing his nuclear medicine bone scan and PSMA pet scan. He had a year and a half before Xofigo. He is fighting prostate cancer for decades.

Seasid profile image
Seasid in reply toSeasid

are you doing a DEXA scan? Do you know your bone mineral density? Ideally the scan should be performed on the same machine and by the same operator of the machine.

Seasid profile image
Seasid in reply todhccpa

Which machine detected 10 bone Mets? Was it a nuclear medicine bone scan? It can detect other than bone Mets. It has lots of fauls positives. PSMA pet scan is better.

dhccpa profile image
dhccpa in reply toSeasid

It was a combination of nuclear bone scan, 2 CT scans, 2 MRIs, and a PET Bone Scan, over a 2-3 month period.

I am on denosamab every 90 days.

I've had two bone density scans, Sept. 2020 and 2022, both normal.

Seasid profile image
Seasid in reply todhccpa

Which one was the pet bone scan? Which machine? I would like to see.

dhccpa profile image
dhccpa in reply toSeasid

I'm not sure.

Seasid profile image
Seasid in reply todhccpa

Well better find it out. I was talking to professor Emmett about my PSMA pet scan results and she said that the alternative bone scan can produce fauls positives results and that the PSMA pet scan is a most reliable scan. Get the PSMA pet scan next time instead of the Axumin pet scan. So you could see if the Lutetium PSMA treatment is possible for you, I am not saying to get it, just to see the SUV max values of your PSMA avid lesions.

dhccpa profile image
dhccpa in reply toSeasid

I haven't even had AA or chemo yet, my friend.

Seasid profile image
Seasid in reply todhccpa

I know that very well

Seasid profile image
Seasid in reply todhccpa

My prostate MRI just arrived PIRADS 5 score.

dhccpa profile image
dhccpa in reply toSeasid

How will that impact your treatment?

Seasid profile image
Seasid in reply todhccpa

Maybe new radiation of the prostate.

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