After 5.5 years on Lupron (no Zytiga, Xtandi, Daro, etc.), my PSA hit its highest points ever (1.92), although I'm still not 2 points above my lowest reading of 0.5 (only one of those). I'm metastatic and was at diagnosis, so still have prostate.
I've been researching Provenge a bit, and understand that it is best done with low PSA, no symptoms, and before chemo.
What about doing Provenge, then chemo, then on to the add-on hormone therapies? I've never heard of that particular order of things, but wondered if there was any problem with it.
Thanks.
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Your PSA is still low. I would not use a valuable tool like Provenge until my PSA got a bit higher.I know you will ask how high. That is up to you. My answer would be when you feel uncomfortable with your PSA
My understanding is 2.5 would be my magic number (2 above nadir). As for holding back on Provenge, everything I read seems to at least indirectly indicate the earlier the better (low PSA, no symptoms, castrate resistant, no chemo). Plus all other treatments can be used following it. That's my reading so far.
Btw, the part about using before chemo is in PCF's annual guide.
I agree that earlier is better. My favorite combination when there are bone metastases is Provenge+Xofigo+Docetaxel. They are all more effective if used earlier.
• Xofigo and docetaxel increase antigen presentation that activates Provenge. The combination of Provenge and Xofigo has been shown to improve outcomes:
Thanks TA, I was hoping you'd weigh in. I need to read up more on Xofigo, as I'm vaguely aware but not knowledgeable.
I'll bring your article to my appointment on Thursday.
I've located at least two providers in Daytona Beach area that Provenge's manufacturer says have administered it, but they couldn't say for certain when they last used it.
Provenge is a highly marketed but rarely effective (the supporting studies are seriously flawed and there is an increased risk of mortality for patients over 65). There are more effective treatments.
The severe ethical issue with the marketing and misuse of statistics after one study was that the makers claimed a large difference in survival rate when used on younger patients....but that gap was because the apheresis procedure increased mortality in the older patients.
Thanks again, just read it. I didn't read it nearly as negatively as you did. In fact, there were some additional positives in there, such as that the original clinical trial results may have actually been much better than initially reported.
I know it's not a cure, but nothing else is, either. But one can proceed with every other treatment after using Provenge: second line ADT, chemo, Xofigo, etc.
When did you use Provenge, and where in the journey were you? I didn't see anything in your profile.
That was a quick perk since someone asked for an article regarding the flaws in the claims. We didn't use it, before even knowing that the test result delta for younger patients was based on the treatment method killing older patients. The doctor (a world-renowned expert) that recommended it as part of a trial participation failed to disclose how dependent the hospital was on funding from that trial. It's a quick $100k based on science they don't disclose and a rush to maximize profits before the patent expires. The more intense monitoring of patients can accoubt for a lotcof the survival 'increase', since no change in PSA or disease progression has ever been documented. Buyer beware.
The article actually suggests that the benefit is understated because of the dilution of positive effect on survival by "crossover" of the control patients into the treatment arm.
My husband has just completed his 3rd and final round of Provenge.
His onc regularly confers with others and they pow wow/profile their patients to discuss treatment options.
It was because his PSA numbers were still relatively low (below 5) and his bone metastasis also low volume (3) that they believed this treatment could be effective.
To share some of his experiences with it: it is an 2 part proces conducted 3 times, 2 weeks apart. Each round consists of first “harvesting” his own blood at a local blood bank. It is quite a long process and both arms are occupied. You can listen to music or books on tape through earphones to stay distracted. In 2 of the 3 sessions his blood pressure dropped enough to make staff concerned. They had him eat salty snacks they had on hand and that solved the problem. Upon completion he sat at their snack station for awhile and ate their Girl Scout cookies and drank coffee. He gets bad headaches without coffee- so coffee afterwards was a big help.
The 2nd part is the infusion that occurs 3 days later. What they’ve done is taken his own blood and souped it up with an immunotherapy component. I think this happens in a lab in Georgia, For this 2nd procedure we go to the Monter Cancer Center here on Long Island. First they give him Tylenol and a stomach ant-acid and he waits about a half hour. Then they give him the infusion itself— which is into one arm only and takes a little over an hour. The main thing he’s learned is that the “elixir” has been refrigerated and he gets the chills, so they had to pack him up with heated blankets to keep him from chattering.
In the aftermath of the infusions he feels a little crappy— flu like symptoms m, which he was told to expect. And his appetite is off. And I would note— his pallor is off. This was true when he did chemo in the past. But all in all he said this is not nearly as difficult as his 6-sessions of Dox-chemo.
Anyway. Of course we asked after this 3 and final go round, how do you know if it’s working? His onc said, they’ll wait some months and do a psma scan. So we’ll keep you posted!
Yes, the process (with snack time) about 3.5 hours. The first time I drove him home (20 min. ) but other 2 he felt confident. For the infusion I came along for the process and drove halfway home— we stop for lunch at a diner- then he would drive the rest of the way home. It’s an hour today total to that hospital.
Do some more research about it has been used in studies and the results. I have not seen it used early in the disease in this way. My experience was adding Abiraterone after a had a couple of tumors. It has worked for 7 years. I would suggest incremental treatments that do not negate future options, unless your disease is very advanced.
You might have anoteh rocnversation with your oncologist botu options and get a second opinion from a prostate cancer oncologist at a well respected institution, known for prostate cancer care.
Thanks. My understanding is that Provenge is best if used earlier, and using it does prevent any other treatment including taking abiraterone afterwards.
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