Anyone w/G-9 Hormone resistant having good results w/ PROVENGE?

Husband has G-9 PC, that is already after only 4 mo. on anti hormone Therapy showing that his cancer is resistant. PSA only came down to 7 after 2 mo., 3rd came up to 11, 4th.mo. PSA 17. Started Casodex last week. See Dr. In a couple days. Going to ask about Provenge, but not sure after reading on it if it has real benifits for the cost? Would love to hear from others who have similar diagnoses who have had the treatment and have a report on whether there is benifits and on their experience.

Barb,

Has there been any consideration of Zytiga?

My husband was diagnosed with similar stats as your husband, even though original diagnosed as a G7.

So far, his PSA seems to be staying down.

Wishing all of the best to you both.

Barb1,

I am so sorry to hear that your husband is BCR. I am a G9 as well and I am a Provenge alumni. However I was selected to participate in a small study and received three treatments before surgery and was randomly selected for a fourth post surgical infusion.

Todd1963 on this forum would be the best one to respond to your post. I can't recall if he was BCR but I know his PSA was rising quickly. If Todd doesn't see this post, look us his email address and send him an email. If you can't find an email, let me know and we can coordinate getting his phone number to you. He is an amazing upbeat member and so is unselfish with his time and experience.

You both are in my prayers.

From what I have read, Provenge can slow progression of prostate cancer without always lowering PSA. So there is supposed to be a survival benefit which might be hard to quantify.
Provenge is covered by Medicare Part B for those who meet its criteria and are over 65. Good insurance might also cover.
Good luck.

Sorry to hear about the short response. Your husband and I are the same age and stuck with the g9 tag although I had a mix of 8 and 9's it's still tough stuff. If you have insurance and can afford provenge then why not? The treatment has minimal side effects and may prove to extend our lives. Studies seem to indicate that the lower the psa when treated the better the results. I'm on xtandi not sure if it's working but after weeks of psa climb mine dropped which could be due to the drug or provenge or spot radiation?

Jerry, the scans he's had so far is the MRI w/probe on initial diagnoses of mats. Another in Nov. w/&aw/o contrast with probe. And bone scan. Diagnosis is in signature. We were told by a few Dr.s that radiation or surgery is not an option as "the horse has left the barn". Good news bone scan clear. Bad news AHT is not responding. Came down to 7 in 2 mo. Then up to 11, 17 now 23 ?... Started Casodex last week. Dr. Yesterday wants to see how it responds, retest in 4-6 weeks. Then may try Zitega(not sure how to spell) will do another MRI in March if not sooner if PSA and labs are looking better. He feels GOOD, working out, goes to work everyday. No pain. I felt that Dr. Is saying, basically he will just treat symptoms as they come up..... No problems(symptoms), not too concerned. We want to knock this thing! He's believing he WILL!
I think I need some spouses support. How to deal with the "Roller coaster" it's only been 6mo, already feeling overwhelmed. Is there a group for that?

Barb,

I guess this question is for the group here at HW...If bone scan is clear, what evidence is there that PC is beyond prostate / pelvis area? Why would not radiation be an option here? I would think reducing the tumor load in combination with zytiga and/or xtandi would be very helpful in this situation...

My horse had left the barn as well...showing up in two stalls (to carry the analogy) in my pelvic bone, and we spot radiated these. Why can't radiation be an option?

Thoughts anyone?

Thanks,
Jerry

Speaking of Provenge, I just got this as an email, could not figure out how to link it, so cutting and pasting except for the end that asked for donations ...

"Malecare Cancer Support
Dendreon Corporation submitted to the U.S. Food and Drug Administration request to tell some doctors that a small percentage of doses of Provenge did not meet the potency release specification for CD54 upregulation. The error affected less than 0.3% of PROVENGE commercial doses released since commercial launch. CD54 upregulation is a measure of antigen presenting cell activation and one of two product potency measurements used to release product. All other release specifications for the product were met. You can read more about this on http://advancedprostatecancer.net/?p=4272

Dendreon says that they fixed the "problem" and that the FDA has not placed any restrictions on them. Odds are in the patients favor that you are unaffected by this, but, we really don't know much more than Dendreon told us and what we read on the FDA website,

Dendreon contacted Malecare at the same time as the doctors, on December 19, 2013, to answer any questions. The two questions we failed to ask was how this story managed to "just" appear prior to Christmas holidays, one of the few times during the year when news is least likely to be read, and what assurances they have that this is the full disclosure of this very disturbing problem for advanced stage disease patients.

Prudence and patient safety suggests that ALL patients taking Provenge immediately contact their doctors and ask if they they are aware that some Provenge infusions may be underpowered and if a re-infusion would be appropriate.

Making some lemonade out of this very bitter lemon:

Patients have another opportunity to pose questions to their doctors, thus developing their patient-doctor relationship.

Patients have yet another kick in the butt regarding how important support groups and advocacy nonprofits like Malecare and others and websites like the advancedprostatecancer.net are in providing life saving and actionable information.

Our lives depend on good news, and, knowing what to do about bad news.

Darryl
Darryl Mitteldorf, LCSW
Executive Director
Malecare"

LupronJim

Barb,

Merry Christmas to you and your family as well.

Seminal vesicles are taken out with surgery so radiation to these (if possible) should not be an issue. You might want to talk to MSWW on this forum. Her husband had bladder involvement I think and did IMRT. Several here dealing with possible rectum involvement.

Enjoy the holidays for now and kick this thing next year. Thanks