Considering Provenge: Has anybody had... - Advanced Prostate...

Advanced Prostate Cancer

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Considering Provenge

rogerwegner profile image
21 Replies

Has anybody had good results with Provenge?

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rogerwegner
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21 Replies
Tall_Allen profile image
Tall_Allen

How would anyone know? You have to just trust the clinical trial data that it extends survival.

Daddyishealing profile image
Daddyishealing

The only thing I know is my dad had very few side effects and is feeling good as he just finished. Some tiredness. No other symptoms. I hope to see scan changes

Mathes72 profile image
Mathes72

Had provenge last fall,no side effects,the only neg,thing was a cath.put in my chest for the treatment time,provenge does not do anything for psa,so if I am still alive in a couple of years it worked,

Magnus1964 profile image
Magnus1964 in reply to Mathes72

Amen, I hated that tube sticking out of my chest. I too had good results.

rogerwegner profile image
rogerwegner

Thanks for the responses.I am still undecided.

GAdrummer profile image
GAdrummer

The combination of Provenge immediately followed by Xtandi made the Xtandi work for *three years* and gave the lowest nadir of any of his seven lines of treatment so far. Provenge was his third line treatment. He has not had surgery or radiation nine years from diagnosis with nodes only mets, Gleason 9.

I was diagnosed in 2008 (Gleason 4+4), had prostatectomy, recurrence, IMRT, recurrence. ADT in 2011 kept PSA at undetectable. Provenge in 2014. Continued ADT till 2016. Stopped Lupron in 2016. PSA remains undetectable. Cured? Time will tell. Currently on Nilutamide 75mg daily, Avodart 0.5mg (every other day), Cabergoline 0.25mg (every other day).

rococo profile image
rococo in reply to

Considering nylutmide 75 mg but whats cabergoline 0.25 carbergoline for. Thanks for a response. Rocco

in reply to rococo

Medical Oncologist Stephen Strum provided information on prolactin levels at the 2012 PCRI Conference on Prostate Cancer:

Prolactin hormone is an additional growth factor to the prostate gland, and rising prolactin levels correlate with progression in advanced prostate cancer cases. Prolactin receptors are found on prostate cancer cells, and these receptors MAY facilitate the entry of testosterone into the cell. Even with hormone ablation therapy, detectable androgen remains in the blood from adrenal sources. Blocking prolactin secretion may therefore be another method for slowing progression of the disease. It is recommended that prolactin levels be kept below 3 in all patients with hormone-responsive cancers.”

If the fasting prolactin is 3.0 or higher, start

Dostinex (cabergoline) at 0.25 mg every Monday, Wednesday, and Friday. A month later recheck the prolactin level.”

I am not aware of any prolactin trials and I have not tested my prolactin level in years, but I am not suffering any apparent side effects and my PSA remains <0.006. Until my PSA increases, or I develop strange side effects, I will continue to follow my regimen.

rococo profile image
rococo in reply to

Thanks for this info clintmeek. Seem like a well toleratted treatment keeping your testosterone intact. Will discuss carbergoline as I think my prolactin level may be high. Rocco

Kat95 profile image
Kat95 in reply to

If you’ve had your prostate removed do you still have prolactin receptors?

in reply to Kat95

There are no prolactin receptors. The androgen receptors are on the cancer cells themselves and "feed" on testosterone. The prolactin sensitizes the receptors on the cancer cells to any testosterone available.

With any luck, all of the cancer cells are removed with the prostate gland. If PCa cells have escaped the prostate capsule, however, the patient may be faced with recurrent PCa (no prostate gland required) and keeping all testosterone from the PCa cells is the goal.

I take 0.25mg of cabergoline every other day to reduce prolactin levels and, hopefully, desensitize the androgen receptors.

Please note that all of the above is just my understanding from this forum, Dr. Myers and the site theprostateadvocate.com/obs....

Magnus1964 profile image
Magnus1964 in reply to rococo

Rococo, I was on nilandran (generic). The explaination sheet says 1 percent have lung issues with it. I did. My doctor said it's more like 10 percent. Just be aware.

rococo profile image
rococo in reply to Magnus1964

Thanh magnus. Keeping our lungs clear is important with some of these treatmen. Think they call interstitial lung disease. Rocco

jdm3 profile image
jdm3 in reply to

Interesting. Where were/are you being treated? Glad hear this is working for you and wish you a long durable remission/cure. Keep up the fight!

Josh

in reply to jdm3

I had the Provenge treatment in Austin, Tx.

in reply to jdm3

I forgot to mention that I had no aderse effects from the Provenge treatment. I did have a port installed as insurance that my veins would not be a problem.

jdm3 profile image
jdm3 in reply to

Thanks

rogerwegner profile image
rogerwegner

Wow that is impressive results. Thanks for letting me know

If your insurance covers most of it, get it. You have nothing to lose and everything to gain.

Turn the page, a new chapter awaits.

David20451 profile image
David20451

As others have mentioned. Who knows. If insurance covers you have nothing to lose. Had focused radiation to an enlarged lymph node in 2012, again in 2014. Changed from Zytiga to Xtandi. Stopped Lupron. September of 2014 did Provenge protocol. Have had undetectable PSA since 7/14. Still only on Xtandi.

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