Provenge Alternatives?: I was referred... - Advanced Prostate...

Advanced Prostate Cancer
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Provenge Alternatives?

DrWrite
DrWrite

I was referred to a urologist who specializes in Prostate, Kidney and Bladder Cancers (whom I shall call Dr. U) by my original urologist. Dr. U subsequently sent me for a second bone scan and CT and then determined I should go in for the Provenge treatment. He also told me to quit going to my original urologist (who provided my Eligard injections) and quit seeing my oncologist (who provided my Xgeva injections) and come to him for everything.

At first I thought this would be good since it cut down visits to multiple docs, but I have since begun to wonder why he did that. So tomorrow I am going to talk to my oncologist and get his opinion of the situation, including whether Provenge is the best way to go.

The problems are that (a) I don't know what the alternatives to Provenge are and (b) the cost of the Provenge routine is going to put a serious crimp in my budget.

Comments? Advice? Concerns?

26 Replies
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Provenge is the only FDA-approved immunotherapy. Medicare covers it for men with metastatic castration-resistant prostate cancer. There are other immunotherapies in clinical trials. If you have had distant metastases, you should be seeing a medical oncologist rather than a urologist.

Would all metastases not be distant metastases, I'm asking because during my RP several lymph nodes were tested for prostate cancer and one showed traces of cancer.

I'm sorry I know what I am asking is very elementary, but trying to understand all I can, thanks for reading.

It's a good question. Metastases to pelvic lymph nodes are considered to be REGIONAL, not distant. They are staged N1. Metastases to distant sites are staged M1a (if in distant lymph nodes), M1b (if in bone), or M1c (if in visceral organs).

We are very fortunate to have a person with your ability and knowledge to help us, I thank you.

So can I assume stage N1 is stage 4 prostate cancer.

According to the AJCC Prognostic Stage Group, N1 M0 is Stage IVA. Some argue that it should be demoted to Stage III because it is often curable.

Great info!

Provenge is a wonderful treatment. It, like all Prostate cancer therapies, does not work for everyone. Provenge works very well for some people. I am one of those people. Dendreon offers a patient assistance program. Feel free to email me if you would like more information. You can also read my most recent post on the other Provenge thread

How do you know it worked for you ? I had the provenge treatment and have no idea if it is working...all it does is expend life a bit....no way to know if it worked....doesn't affect psa or anything else measurable....

Ron

My oncologist told me that they expected my PSA to continue to rise after receiving Provenge. They said the hope was that it would level off and rise at a slower rate. Prior to Provenge, my PSA was rising despite Lupron injections. Upon receiving Provenge my rising PSA concerned me to the point where I was losing sleep. I had heard that a person could see a PSA response after If they reintroduced casadex even after failing the drug previously. I convince my doctor to re-introduce the therapy and my PSA dropped like a rock to less than 5.2. Or use the Casey decks for one month. After that my PSA rose but at a much lower rate. Prior to Provincia my PSA doubling time was approximately six weeks. After Provenge my PSA doubling time was approximately six months. When my PSA reached 25+, I started taking Zytiga. I have now been on Zytiga for five years and my PSA continues to remain at less than 0.01. You asked The question how do I know it’s working. The answer is I don’t but I feel good I have been on Zytiga as long as anybody ever has I suppose and yet despite having a serious disease I continue to remain in remission. My oncologist believes that having Provenge prior to the Zytiga has enabled the Zytiga to remain effective. There is much discussion about cost. I have been on Zytiga for five years. To date my Zytiga treatment has cost over $300,000. You can do the math

Why would you not get a second and third opinion.

If you don't assert that right now, how will you ever assert it later.

Seems to me that there is some form of grooming occuring.

ok i just finished my treatments with provenge. the bill ( not sure if the cost was for the first treatment or all three). 74,000 and i paid 0 u didn't state what treatments u been through so far,what your psa score is,how long have u been treating your cancer. my personal thinking with oncologists to me or maintenance that's all. mine is a specialist in breast cancer not prostrate cancer.

Medicine is very specialized today. You will (if not now) at some time need to see an oncologist and a radiologist. I do get my Xgeva shot from my Urologist.

The Patient Access Network can help with Provenge expenses. I went though this and did not pay that much. You urologist should be able to get you through the paper work and find out if you qualify. The

Provenge is being pushed HARD because the patent is expiring. At an AVERAGE 4 month increase in life expectancy, it is the least effective standard of care. There are serious questions about whether the drugs required for apheresis actually decreased life expectancy for some patients. It sounds great, because there are few medical side effects, but the cost, scheduling apheresis and injections, and that it on average doesn't work (think of it this way, if the average is 4 months ...what's the most effective it was?) made it a NOPE for us. And I'm really glad we passed on it....because Degerelix and Zytiga have now eliminated the prostate tumor and we're now going to address the two remaining bone mets in what WAS being treated as....untreatable. Third opinion got us there, and two oncologists at different hospitals that dont mind working together. Good doctors don't mind you getting information from other doctors (quack remedies and the internet. .maybe..). Best wishes to you!

Actually, when used in men with metastatic castration-resistant PC, it is one of the MOST effective standards of care - +4.1 months is more than docetaxel (+2.4 months), Jevtana after Zytiga (+2.4 months), Zytiga after chemo (+3.9 months), Xtandi after Chemo (+4.8 months), Xofigo after chemo (+2.8 months). Most therapies work better when used earlier.

Not if pre-chemo. As always, Dr. assistance in weighing options is best. We were sold a bad idea because Dandreon was funding a study. The nifty backpack certainly isn't worth the $100k and letting the cancer grow. If others are satisfied with the recommendation, more power to them, but there's renowned oncologists without funding at stake that aren't afraid to say its ineffective (and then there's the ethical inquiry into whether some test subjects were harmed further by the leukapheresis).

That's the point - ALL medicines work better in less pre-treated patients. The only problem with Provenge is that traditional biomarkers don't work with it. PSA, for example, is unaffected. One just lives longer.

I suspect it combines particularly well with chemo or radiation of mets because more cancer antigens are presented to the activated T cells. It also counteracts the immunosuppressive effect of chemo.

Drug manufacturers always fund studies of all new medicines - how else would clinical trials get done?

Well, I'm not going to pretend to debate this here (misusing my words and suspecting something might work aren't debatable statements), the poster asked about alternatives. The cost and efficacy are important. Understanding the funding motives behind the pharmaceuticals is important when deciding where to put your trust. I'm sincerely hoping for an effective immunotherapy, and there's several more being studied. Keytruda looked promising, but the study didn't support it. How else do they get done? Funding independent organizations and universities (hard to raise that much capital). Right now, we are on a treatment plan that has been used successfully for decades and you'll never see a completed study on, because there's nothing new involved.

I wrote "suspected" because the evidence so far is only from lab studies. We are awaiting the outcomes of clinical trials. You can read about it here:

pcnrv.blogspot.com/2016/08/...

What treatment that has been used for decades are you using? I know estrogen is getting a second look. Unfortunately, ketoconazole was never tested against Zytiga.

Best to take any specifics outside this thread. But I HIGHLY recommend that PET scans with more accurate tracers (PSMA and Axumin) be used. After wiping out everything you can with ADT (even a combo approach) one might have none or only a few lesions...which can then be addressed directly. Rather than dealing with widespread mets, we're dealing with ...2.

Big red flag when you are told to drop your previous providers and seek care only from one. You need to know his credentials, training and expertise. I would seek an opinion from a urologic oncologist, usually found at a major medical center.

Provenge did not work for me, it took a lot of time and some reactions. All the cost was born by Medicare. My cancer had already changed cell type so I have moved on to other therapy.

Tall_Allen
Tall_Allen
in reply to DenDoc

How did you know that it didn't work for you - did your T cells fail to get activated?

DenDoc
DenDoc
in reply to Tall_Allen

Tall Allen,

Excellent point. I have no way of knowing since PSA is not a good marker. My mets and pleural effusion grew enormously just after finishing the Provenge. I have responded to chemo with Carboplatin and Etoposide for four months and my effusions have decreased and hopefully my tumors have not grown. This could well be because my TCells were activated as you say. It is frustrating when there is no good marker but I am long past the 4months so as I approach a year from Provenge, the chemo has helped and I am feeling great right now off all treatment except Lupron. PET next week will tell us more and guide the future. My PSA at 26 is at a lifetime high but no obvious bone mets.

I am planning to celebrate the holidays with my family!!!!!

If you want to learn more about Provenge I suggest that you read the three blog posts on the Cancer ABCs web page:

Joel

A doctor supporter of Provenge pointed out that the cost for Provenge is a one time total of ~100k with few side effects. Compare this to ongoing cost of Xtandi or Zytiga with lots of SEs which add about the same number of months of survival. He made Provenge seem like a bargain but other than still standing there is no way to measure response. Dendreon is not following up and neither was the doc as there is no way to know what other treatments patients received.

About 13 years ago I had the "pleasure" of doing a full month of 5 per week high-dose adjuvant Interferon after the resection of a significant and rare type of melanoma. Some of the side effects I felt during that treatment (probably involving regulatory T cells) were eerily similar to what I felt during the week after each of my Provenge infusions in 2016. For whatever it's worth, it certainly "felt" like my body's immune reactions were kicked up a notch. Hopefully, it "took" enough for some continuing benefits down the road. I'd do it again.

Thanks to those who responded to my inquiry about Provenge. I definitely appreciated DenDoc's comment about the red flag raised by the doctor telling me to drop previous providers and seek care only from one. Others have told me the same.

So...I went back to my Oncologist and we discussed the situation. To the point of the red flag, he said "Urologists don't play well together in the sand box." He reviewed my case again and said that chemo is likely to be the best bet, but that I was in charge and he would wait for my decision on it. I liked that.

My only concern now is the side effects of the chemo, hair loss and fatigue being the 'biggies'; the former is no big deal and neither is the latter, but I teach part-time [2 classes on Monday and Wednesday] at a community college and asked if he thought I would likely be in good enough shape after chemo on a Thursday to go to classes on the following Monday. He said it's likely I could handle that.

Of course, he can't say for sure about side effects, but I gather that I'll also be getting drugs that take care of much of it.

Does that sound right? And of those who have had the chemo, I'd like to know what I don't know.

Here are my details: My last PSA was 20. I'm currently getting Eligard (Lupron) injections every six months, Xgeva every other month, and as mentioned, likely to start Taxotere [Docetaxel] in the next month or so.

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