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Am I the only one that has been treated with Provenge?

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Posted 8/30/2011 5:00 AM (GMT 0)
I am really curious if anyone else has had Provenge treatments? If you have, I would like to hear your experiences and have your share your thoughts with me. I had three treatments in March and April, 2011 pre-surgery and one post surgery in July. I hope that it has made some difference in my results, but it is way too early to know. I feel like I am reaching out to outer space to find anyone that has been treated with Provenge. I look forward to any responses to the affirmative.
Posted 8/30/2011 5:43 AM (GMT 0)

Hi Devasted1. It sounds as if you're new to the site. If that is so, then welcome and sorry that you have to be here. I can not recall any one else on this site having gone the Provenge route for treatment. I do believe that it is a newer treatment and very expensive. I sure hope that it will work well for you. Please keep us informed.

All the best to you in your journey.

Mag

Posted 8/30/2011 5:59 AM (GMT 0)
I also don't recall anyone here having had the Provenge, so you are a trailblazer. It seems a promising class of treatment, so I too will be most interested to hear how it works out.

You didn't mention your post surgery PSA. If you haven't had that yet, you must be due for it soon, and that will be a good indication of how things are going. Good luck.
Posted 8/30/2011 3:40 PM (GMT 0)
Devasted1,
The treasurer of our UsTOO group went through a series last year. Unfortunately he did not respond well. He just stopped chemo last month and is looking at the TAK700 trial. Good spirits though. He keeps on keeping' on. Also the Chairman of the Pahrump Nevada UsTOO also did Provenge. Both of the men that are not doing well had extreme circumstances. Both have been metastatic for years. On the other hand we have a Las Vegas local that is doing very well three years later. He was in the Phase III trial.

I hope this helps...

Tony
Posted 8/30/2011 3:48 PM (GMT 0)
Piano, I have had two post-surgery PSA's, both were the ultra-sensitive and both fortunately showed no detectable cancer. I guess I need to update my signature to include the PSA's to provide me a historical record before it starts to rise.

Tony, thank you, that information is very helpful. I am so sorry to hear about the two that have metastatic cancer and are not doing well. God bless them in their fight and struggles. Could you find out the Chairman of the Pahrump's buddy email information? I would really like to email him and share and compare notes.

Thank you.
Carl
Posted 8/30/2011 4:06 PM (GMT 0)
Carl,
The Pahrump Chairman is Jim Gregory. If you go to www.ustoo.org and click the "Find a Chapter Near You" link enter in Nevada and you will get Jim's contact information. Start there. He'll tell you where he is and try to help. He is a good man who has been in the prostate cancer business since his diagnosis in the '90's.

Also if you send me your email address I can forward my treasurer's number.

Tony
Posted 8/30/2011 4:59 PM (GMT 0)

Devasted1 said...
I am really curious if anyone else has had Provenge treatments? If you have, I would like to hear your experiences and have your share your thoughts with me. I had three treatments in March and April, 2011 pre-surgery and one post surgery in July. I hope that it has made some difference in my results, but it is way too early to know. I feel like I am reaching out to outer space to find anyone that has been treated with Provenge. I look forward to any responses to the affirmative.

 

Try the search engine at the top(right next to Chat) and do a search on Provenge. There are a lot of older threads will the info you maybe looking for. Good luck!

Posted 8/30/2011 5:13 PM (GMT 0)
You might contact Jan Manarite at [email protected] She was active in the grass roots movement to urge the FDA to approve Provenge, and she probably knows a number of people who have been treated with Provenge.
Posted 8/30/2011 5:16 PM (GMT 0)
Glenn

Thank you for the suggestion, I will do a search today and see what data I can find.

I am curious, in your signature you indicate that and I agree with one of your options is Brachy, HT and IMRT.

You and I are the same age with pretty much the same Dx prior to my surgery. Have you explored having an open cut radical prostatectomy where they can and will remove the prostate but also do a wide cut to remove the margins in case the PCa escaped out of the capsule (like mine had)? They also will take the lymph nodes out so to eliminate the possibility of have wide spread distribution of PCa throughout your body, can look at your critical bundle of nerves to see if they are impacted and also examine the seminal vesicles.

As I did my research and as others have posted on this site, you can always do hormone and ratiation therapy post surgery, but once you do Brachy, it usually eliminates the option of surgery since it has caused so much scar tissue. I am not a doctor and have no medical training but I was really intrigued with the radiation route versus surgery but the more I read about it, it causes massive scarring, does cause IC and ED (however on a delayed basis versus surgery which is automatic) but it is less invasive than surgery.

So many people come to the conclusion that since it is the host for the cancer, why not get the darn thing cut out and removed so it can't generate more cancer cells.

I wish you the best in your journey and education in determining your options to treat this disease. You may want to solicit input from the plethora of experience that is on this forum.
Posted 8/30/2011 5:33 PM (GMT 0)

Devasted1 said...
Glenn

Thank you for the suggestion, I will do a search today and see what data I can find.

I am curious, in your signature you indicate that and I agree with one of your options is Brachy, HT and IMRT.

You and I are the same age with pretty much the same Dx prior to my surgery. Have you explored having an open cut radical prostatectomy where they can and will remove the prostate but also do a wide cut to remove the margins in case the PCa escaped out of the capsule (like mine had)? They also will take the lymph nodes out so to eliminate the possibility of have wide spread distribution of PCa throughout your body, can look at your critical bundle of nerves to see if they are impacted and also examine the seminal vesicles.

As I did my research and as others have posted on this site, you can always do hormone and ratiation therapy post surgery, but once you do Brachy, it usually eliminates the option of surgery since it has caused so much scar tissue. I am not a doctor and have no medical training but I was really intrigued with the radiation route versus surgery but the more I read about it, it causes massive scarring, does cause IC and ED (however on a delayed basis versus surgery which is automatic) but it is less invasive than surgery.

So many people come to the conclusion that since it is the host for the cancer, why not get the darn thing cut out and removed so it can't generate more cancer cells.

I wish you the best in your journey and education in determining your options to treat this disease. You may want to solicit input from the plethora of experience that is on this forum.

 

Hey Devasted1,

  According to my URO, I was not a suitable candidate for surgery mainly because the cancer was too close to other organs and nerve endings and too aggressive......knowing what I know now, even if I had the choice I don't think I'd go for it.....for one, I don't trust the surgeons and secondly my older brother had surgery and still had to have the radiation and is still suffering from the effect of surgery. Thanks for asking though.......and as I stated in other threads, I did not(knock on wood) experience any side effects from any of my radiation treatments and hopefully that will remian the same!

Posted 8/30/2011 6:33 PM (GMT 0)
So many people come to the conclusion that since it is the host for the cancer, why not get the darn thing cut out and removed so it can't generate more cancer cells.

the herd doesn't always have it right cool .  the cancer cells that are usually the problem after combination therapy have already left the prostate.

ed

 

Posted 8/30/2011 6:38 PM (GMT 0)

F8 said...
So many people come to the conclusion that since it is the host for the cancer, why not get the darn thing cut out and removed so it can't generate more cancer cells.

the herd doesn't always have it right cool .  the cancer cells that are usually the problem after combination therapy have already left the prostate.

ed

Good point Ed......I noticed you too only went for the 3 shots of Lupron. What was your or your Dr's reasoning for 9 months only?

GlennK


Posted 8/31/2011 7:49 PM (GMT 0)
Piano,

You asked about my PSA's, and they are as follows:
PSA History:

Pre-Dx 01/17,2011 5.5
Screening Visit for Study: 02/17/2011 13.0 (close to biopsy)
Repeat PSA 03/02/2011 6.5
Prior to Leuk. #2 03/25/2011 5.9
Prior to Leuk. #3 04/08/2011 5.2
Pre Radical Prostatectomy 04/25/2011 4.2
6 Week Post Op Visit 06/02/2011 <0.1 PSA Ultra = <0.01
12 Week Follow-up 07/21/2011 <0.1 PSA Ultra = <0.01

I would like to be able to quantify when my PSA kept dropping. The logical explanation is that I had my biopsies on February 4th which explains the jump up to 13.0 less than two weeks later, and I assume that as the inflamation went down from the biopsy my PSA levels dropped accordingly. Maybe Provenge had something to do with it, but I guess I will never know. Maybe, if my PSA continues to show non-detectable cancer, one could make the argument with my pathology, that it clearly made a difference. My skeptic personality is saying that it is only a matter of time before my PSA alarm goes back on and then my quest with HT, IMRT will begin, and then probably all the other treatments that discussed on this forum.

I hope that helps.
Posted 9/1/2011 12:39 AM (GMT 0)

Carl:

One of the guys in our PC support group just started Provenge after being on Zoladex for a few Years.  He receives an injection monthly and started in June.  We broke for the summer and the next meeting is next week. I will be anxious to hear how he made out over the summer months. I'll keep you posted.

Jack

Posted 9/1/2011 1:20 AM (GMT 0)
Carl,

It has to be a good sign that your PSA dropped prior to surgery, and let's credit the Provenge in part for that. It's also good that your PSA dropped to undetectable after surgery ~ that means there if there is still PCa in your body, it isn't very much. And the Provenge may continue to work on that.

After my surgery, my PSA at 7 months was <0.05 (undetectable) and at 13 months showed 0.07 ~ uh-oh. Which turned out to be the start of a trend.

If you are thinking about lifestyle changes ~ like diet, exercise, stress reduction ~ now is the time to do them. Casey calls it "stacking the odds in your favor", and it seems reasonable to do it before your hand is played out and not after! That is: before BCR and not after.

My only regret is that I didn't start my dietary changes soon after surgery. Then I was firmly of the "diet has no effect" school, but my opinion has changed. If diet can slow a rising PSA, as now seems likely, it may stop BCR from ever getting established ~ something to consider.
Posted 9/1/2011 4:45 AM (GMT 0)
Thanks Piano, Great advice on taking advantage with the time that I have to work on physical conditioning and improvements on the diet front. Would you please share what you have done with your diet changes (foods to avoid, foods to incorporate into every day). I would appreciate any insight you could offer. I just think I am a ticking time bomb, and it will be just a matter of time before my PSA will start being detectable. I promised corvetteman that I would start my cycling and I have. Prostate region has healed enough to sit on the hard saddle for a period of time. Any ride, whether it is short or long is a great ride.

Skate, I would be very interested to follow the progress on your friend in your PC group. Please have him post his thoughts and experiences on this forum. I have found that many are interested in Provenge and want me to keep them posted, which I will be more than glad to do.

I need to focus on the present and what I have now and start blocking what my sub-conscious is thinking that the cancer will return in its full glory and kick the %$#@ out of me over the next few years.

Thanks to everyone for your support, encouragement, and sound advice.
Posted 9/1/2011 4:27 PM (GMT 0)
One of the best books for diet is by Dr Snuffy Meyers titled Beating Prostate Cancer through Diet and Hormone Therapy. My wife and I are following it very closely. Of the restricted or banned foods that my wife and I used to eat regularly, we started a Once a Month List. We recently reviewed it and found that many of the items have been more like once in three months or not at all, peanuts and peanut based items for example. Thus it has been very easy to follow. She had her second bout of breast cancer while I was going through PCa treatment so we are in this together.
Posted 9/1/2011 10:25 PM (GMT 0)
Carl,
I am basically on a vegan diet, the one exception being oily fish, like salmon, once a week. Vegan means no meat, dairy, or eggs and normally no fish. My story is here: Vegan diet - some early results.

I'm now avoiding added sugar. That means I have cut out vegan cookies and no longer eat or drink things with a high glycemic index, like dates, raisins, and pomegranate juice. Also in this three-month period, I am testing Essiac tea.

As always, what works or doesn't for me won't necessarily work the same for you.
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