Provenge

[wrando]

I'm about to receive Provenge. Has anyone had this treatment, and would like to talk about it?

[mshariff]

Obviously everyone has their own experience with each drug, having said that, mine was not the best with Provenge! I don't see any tangible results with Provenge as you might see with other drugs. Now we can all talk about study results, but following all these postings, people with provenge ultimately move on to other drugs to combat this disease!

Too expensive, too cumbersome. In my time, insurance companies were not allowing secondary PSA treatment as well. Thus PSA did spike up during the treatment. But I guess in our case, we are so desperate we would try anytreatments!

Having said all that:

-Keep hydrated

-Expect fatigue and weakness

-Don't drink too much where you would have to use the bath room, as its kind of difficult undertaking during the treatment.

-Mike

[wrando in reply to mshariff]

Thanks Mike...I'm already fatigued from the Zytiga. I guess I'll see.

[DewayneH in reply to mshariff]

I had Provenge and have seen no visible results. In fact my cancer has spread since. It is too expensive, inconvenient and had a drastic affect on my calcium level.

[mshariff in reply to DewayneH]

So, DewayneH, at this point, are you doing Kemo?

[DewayneH in reply to mshariff]

My PCa progressed to my bladder and liver. I am still on Lupron and Jevtana. I had a CT scan yesterday to be followed with a visit to my oncologist tomorrow. If the Jevtana is not effective. the oncologist had previouslysuggested I consider carbonplatin with Etoposide. I understand this can be pretty nasty. Anyone had this for treatment?

[DewayneH in reply to DewayneH]

Last Friday I had the Y90 radioactive beads procedure to my PCa that had spread to my liver. I have been off Jevtana and Lupron for a couple of months but plan to start back on Lupron the last of this month. Will have scan later to determine effectiveness. So far no problems with the procedure. Anyone had this procedure or know of anyone else who has? Thank you!

[YostConner]

I had Provenge in September 2014. I moved on to Zytiga two months later, which I expected. It's nearly impossible to prove Provenge helped with any individual person, but in my case I think it helped. Like Mike said, keep hydrated and expect to rest the rest of the day when they do pheresis. If you get the shakes during pheresis, they can inject calcium, so watch for that. The re-infusion is not a problem. They will likely give you an IV pain preventative about 30 minutes in advance. If you want more details about my experience, give me a shout.

[wrando in reply to YostConner]

Yea thanks...not to put you out, but anything more would be even more helpful.

[wrando in reply to YostConner]

BTW...how is your experience with Zytiga?

[sgrama in reply to YostConner]

I'd like to know more about your experience with Provenge treatment because my husband is starting this next week.

Thanks

[YostConner in reply to sgrama]

Provenge was easy. If he gets chilled during cell collection, he should accept the blanket offer. If he gets jittery, he should accept the calcium booster. Otherwise, it was pretty non eventful for me. I was still working then. I took off collection day and infusion day for comfort but was otherwise able to work. Good luck to both of you!

[YostConner]

You know what--that wasn't a pain preventative--it was for fever. Same drug. Different target. The provider takes care of most of the complication of Provenge, so for me, the process went well. I needed blankets during pheresis to keep warm, and I needed the IV calcium to stop the shakes. Infusion was uneventful. I actually liked seeing my cells go back in--it was like little soldiers going in to do battle. I had someone go with me to each pheresis and infusion--mostly for moral support. I also did not try to do any work those days. Pheresis especially can be fatiguing. The only complication for me was that I had to have a central line put in for pheresis. I did not have a large enough vein in my left arm to accept the blood. Installation and removal weren't bad, but that meant six weeks of taking care of it and avoiding infections. I was still able to travel--including flying.

Zytiga can be tiring, and the prednisone that goes with it can complicate blood pressure, weight, blood sugar, etc. I've been able to take my weight down a bit, actually, but I had the other complications. All are under control with even more drugs. I sometimes have days when I just don't want to do anything--and I usually allow myself that room.

[wrando in reply to YostConner]

Thanks a lot...it's always good to know something about what you're getting into. Did they allow you to bring something to watch in for the pheresis. I heard that takes a few hours.

[YostConner in reply to wrando]

My center provided a laptop DVD player and movies. You could also use an ipad.

[GAdrummer]

My husband had Provenge immediately followed by Extandi. The Provenge did not change the PSADT over the course of that treatment, but it enabled the Extandi to do a better job, creating the lowest PSA nadir of all the treatments so far and allowing three good years on Extandi before moving on to VT-464. Having someone with you is important, especially if the pheresis occurs in a busy center. My husband needed TLC due to nasal issues. When both arms are strapped down, you can't blow your nose. It helps to bring your own music & earphones.

[wrando in reply to GAdrummer]

Thanks for the information...arms strapped down...for how long? That sounds disturbing. How is the VT-464 working? I know the wife of the CEO of the company developing that drug, but they won't give out any info.

[GAdrummer in reply to wrando]

2 1/2 - 3 hours depending on how thick your blood is. The return was in the local doctor's office (urologist or oncologist, I don't recall which) and only took 1 1/2 hours with only one arm strapped down, but needed extra blanket to cope with the chills.

The first check at 2 weeks showed no change in PSADT ( 2 months). The doctors said not to worry. The second check at 4 weeks showed PSA slightly lower than just before starting the pills. He's been dancing ever since, (still no sense of rhythm). At the 8 week checkup, scans will be done to measure the change. He goes to NIH for the clinical trial. Side effects (memory loss, using wrong words without noticing, tremor, balance), caused a drop in dosage at 2 weeks.

[wrando in reply to GAdrummer]

That seems like a lot of side effects....thank you

Clinical Trial sounds interesting

[GAdrummer in reply to wrando]

second paragraph referred to VT-464

[wrando in reply to GAdrummer]

Oh OK thanks...sounds like a mixed bag

[Scoop65]

Please take a look at my post "Provenge poster child".

Scoop65

[Magnus1964]

My scans found some nodules in my lungs last year. I went on the Provenge treatment and the nodules are gone. That was my experience, I think it would be different for everyone else. Walking around for six weeks with tubes sticking out of chest was not pleasant and it was hard to sleep, but the results were good. Well worth it. There are a lot of other treatments that are worse.

[Cancersucks]

Did Provenge in April. Be prepared for no effect on PSA. PSA went from 30 pretreatment, to 160 now. Was taking Xtandi as well, now on Zytiga. Had no effect on radiologic progression either. But again, how can one be sure? Studies show an average of 4 month prolonged survival. Procedure well tolerated, just some mild flu like symptoms on the third treatment. BTW, tolerating Zytiga/Prednisone better than Xtandi, even though cancer is growing. Surprised Medicaid approved treatment as cancer is widespread, pain present. Blood work normal throughout treatments.

[BobChanin]

I believe that some physicians are compensated for writing Provenge prescriptions.

[mshariff in reply to BobChanin]

Indeed they do, so goes with Xofigo. While its good for pain. Xofigo does nothing for PSA. However, the Nuclear radiologist I had was too eager to administer it and claiming its also effective for PSA. As it turned out, it was not, and during treatment, I developed cancerous soft tissues on my spine. Stopped Xofigo and went for radiation.

Bottomline, trust but verify!

-Mike

[wrando]

I just finished my last infusion on Friday. What would you like to know?