DX 4 years ago with PC Gleason 6...Did Radiation, HIFU,...Then found it had spread to bones just about 12 months ago. Did Lupron and then 6 sessions of Taxotere. PSA went down a lot but not to beow 1.3~~~~NOW, just a few months later...my PSA since Late Jan went from 1.33 to 1.83 to 2.4 (every six weeks). **this classified me as Castrate Resistant Advanced Stage 4....NOW I'm starting Provenge AND Xtandi. These both sound like BIG GUNS...I'm just wondering if anyone is taking both now? / took both? / took both this early in the journey? How it was?
Being in the "fast lane" is a bit scary!
--John
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greatjohn
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I had a pretty good run on initial ADT with Lupron (and Zometa) after an initial Stage IV diagnosis with a PSA of 5,006 which got knocked down to 1.0. Never had any surgery nor radiation treatments. When castrate resistance established, my local Oncologist tried a short re-challenge with Casodex, which knocked it back down from about 5 to 3 for a couple of months. As it kept going up I did some consulting with some specialists at a couple of different places. As my PSA was going through 60 I did Provenge. As it hit around 95 two or three months later, I added Xtandi. That was about a year and a half ago. Xtandi brought my PSA back down to a nadir of 1.2. Latest PSA was 1.8. I'm now about 4 1/2 years out from initial diagnosis. Will be 70 years old next month.
The Provenge for most people is pretty easy to get through. The three harvest/infusion cycles go pretty quickly. My experience with added Xtandi has been some added fatigue, a little above the general trends I already felt after 3 years on Lupron. I adjust.
Husband 15 years into this horror with G9 was on Xtandi for a couple of years trying to reach a durable remission a la Snuffy Myers. Got to .051 and couldn’t get any lower. Side effects are different for everyone. Most bothersome fatigue and brain fog. Check with your oncologist regarding apalutamide which I believe is the next generation of Xtandi minus the brain fog. Husband might try that next. Just completed Provenge: process is not bad. The harvesting of the white blood cells is time consuming, about four hours. Bring a movie or two to watch because there is an intravenous in each arm and is difficult to hold a book. The infusion is only about an hour and is the easier part of the whole process. Husband’s PSA actually went done afterwards which is surprising. Good luck & let us know how you do.
Did both 4-5 years ago and have had non-detectable PSA since. My Mets were in lymph node. Combo therapy a good thing I believe but hard to predict outcome or reasons for success.
I will pray for YOUR same outcome....I am hoping by dong this early...my PSA has only gone to 2.4 and my few bone mets were almost all gone from Chemo as were most of my lymph nodes...to get a break from more heavy treatments for a while
oh, well...I'm keeping my fingers crossed to be around 4 or 5 years after these treatments to pass the good news along!
Hi great John... I like your attitude and the little parable. Thanks for the post... Useful to me because I'm just entering the castrate resistant category myself, so I'm newly tuned in to what folks have to say about Provenge and Xtandi and I've learned from the responses here.
I got a little over 3 years out of Lupron/Casodex. I've adjusted to my circumstances such that I feel like I am already receiving and living my "more time", and I am blessed for that. So far my biggest symptoms are from the drugs and not the cancer: I'm not looking forward to the hard part of actively dying, but as my dad always said, "I'm as ready as I'll never be." I'm open to all possibilities, and I would happily make good use of another 4-5 years of life and love, and I wish at that and more for you too.
Yes..this new "phase" we are in sounds like the "fast track"...but I've always tried to keep a positive spin on things...I'm hoping for crazy (for the books) great outcomes from the Provenge...sounds crazy to say...but YOU'RE LUCKY....btw...I only got 4 months on Lupron before I did Chemo...and only a few months rest after that before I am starting this new leg of the journey. I was really hoping for 3 or 4 years on JUST (really, it's a wrong word for castration) ....Lupron. LOL. Life is Beautiful. Takk-Druk...what part of the country are you in? what age?...you seem in picture...young for this fun. I started at 57 with first diagnosis of prostate cancer...and am just now 61...
~~all the best in the near and hopefully far...future.
Hey John... lucky indeed! It is crazy, and I really do feel lucky for so many reasons - even though the irony does not escape me that I wouldn't know just how lucky I was if I wasn't 'unlucky' enough to get cancer in the first place! It's like totalling your car or having a shark eat your leg off, and feeling 'lucky' to be alive. Irony is not dead. Good luck-bad luck: who knows?
I tried to make the most of my time with ADT, even as I fretted the whole way through that it was coming to an end sooner or later. In the end, I was grateful to beat the odds a little bit with that one. With the encouragement of my beloved partner (now wife), I quit my job and we made a 9 month journey around the globe via Indonesia, Sri Lanka, and Europe. To stay current with my treatment I had to find a hospital and get injections in both Sri Lanka and Germany... the Lupron was a lot cheaper in both places! And going through those medical systems provided some very interesting cross-cultural experiences. There is much to appreciate with the specialized care that is offered here in the US; and yet, no doubt the end result will be the same. As my experience has unfolded over these years what has shown itself to be more important for me than any fancy medical treatment, is to be recognized and treated as a whole person who is intrinsically worthy of care and attention. This is not at all specific to any one country. I definitely have emotional scars from some of the early doctors who I consulted with here in the US, when I felt so vulnerable, my fear was overwhelming, and I was still getting oriented to this disease and figuring out what my options were.
Anyway, I can hope for good fortune in the next roll of the treatment dice, but I know that with or without cancer, the odds are always and forever with the house! My deepest joy comes from playing the game at all. I feel like I've already won for being alive and healthy for so many years, and for the beautiful life I am living. Amidst the beauty, I also worry about the world and the people I will someday be leaving behind. I feel like dying may be the easier job. My wife has at least as much work to do as I. I love and respect her more than I can ever say. In that I am luckier than anything else I can think of. And as difficult and unsavory as it is at times, and will be, I can still be grateful for the work and struggle that we are doing <together>. I have found that there are gifts hidden in the most unlikely of places if I know how to look.
So along with my worries and with what suffering comes to me, I make the effort to live in the fullness of gratitude; even when doing the hard, but necessary work of grieving, sorrowing, and letting go of hope and fear. I say this because I feel the need to acknowledge that it's not all positive, and cannot be so. The paradox of luck, and the paradox of joy share some resemblance. Before cancer, and still today, I have drunk my fill of heartache. Lucky/unlucky, hope/fear, positivity, joy, sorrow, anger, despair... there are seasons for all of these; and for dying too. I try to remember and cultivate gratitude for all, because they are all woven into the fabric of my living. Excuse me for waxing philosophical, but for me that feels like another symptom of this disease.
I was diagnosed at 42 with a gleason 8, ductal adenocarcinoma (supposedly a bit more aggressive than your everyday, run-of-the-mill PCA, and perhaps with a tendency to give off a lower PSA.) About a year after going through SBRT/cyberknife I found out that the cancer had most likely escaped the prostate at a microscopic level before treatment: my PSA started rising around 9-12 months after radiation, and scans showed that I was metastatic with a bone lesion and spots in my lungs. (As an aside: It's a catch-22, but I swear that I believe the biopsy is what let the cat out of the bag and allowed the cancer to get into my bloodstream so that it had a chance to spread. I totally think that they should do some kind of prophylactic treatment in conjunction with biopsies.)
I started lupron and docetaxel concurrently, and my PSA dropped to undetectable by the end of chemo and stayed there until early this year.
I am now 49. I live outside Seattle. It's good to share. Thanks for asking.
Thanks so much for that amazing story (your amazing story)...and by the way...you are in my favorite city! I used to go every year for the whole month of August...to get away from the dismal heat and humidity of Miami. I had hoped to buy a place there for a summer escape pad...but that didn't work out...unfortunate because the years I went were around 1990 and prices were MUCH better there than now...LOL. I got back for a visit again a few years ago...but my "months of living there" (about 4 years) were some of my best memories. Seattle in August is magical. Miami in August is H E L L. ! ! ! SO, AGAIN, YOU ARE LUCKY~LOL...ENJOY MY FAVORITE CITY!
It sounds like you have a great attitude of gratitude. I post a needlework my sister did that says "give thanks" about once a month on Facebook. I just like to remind myself (and others) to always be thankful! ~~have a GREAT summer!
There are lots of postings about Provenge. Husband had it last August and I believe there is a certain window of opportunity or stage of cancer where Provenge can be effective. The problem is there is no way to know or measure if Provenge is working other than guessing or positive thinking.
I am certainly hosting some crazy positive thoughts on it as I am about to begin...hoping for complete eradication...positive, complete, eradication! ~~so I hope the "positivity" will amplify it's efficacy! Thanks! I think having a great attitude is the secret for a happy life...no matter what "slings and arrows" come your way. Life is Beautiful! Having been a Boy Scout for a very short time in my youth...the thing that STUCK with me, was "Be Prepared"...so, sometimes that comes across as being "negative" as I "plan" for side effects, slowing down, death, etc....It's not Negative on my part, but rather a "positive" Preparedness" for the future!
17 years ago I was more positive about each treatment but have become more negative/skeptical over duration due to maiming from treatments. That means 17 years without erections and incontinence after surgery. Not sure what else can be blamed on treatments. Provenge seemed to do no harm as long as it’s not out of pocket. Same for Xtandi and that can be stopped quickly or tapered to your side effects.
My husband has always been more negative but goes along with what I drag him through. He is getting tired of it though but I think you are much younger.
Yes, I can understand..but...if he has had 17 years of treatment....I'd call that positive...I'm only just turned 61...original dx at 57...stage 4 at 60. If someone said I was going to make it to 74 for sure...I'd be dancing for joy!....
I know it doesn't get easier...good luck on the journey.
P.S. I just looked...it appears your husband was 57 also when this began....I'm assuming he didn't take the fast track like me and jump right into castrate resistant stage 4 within the first 3 years.. did he? If so...it would give me hope.
He had no known Mets until ~3 years ago but became castration resistant on ADT quickly.
Looking back one regret is not being more aggressive which is what you are doing. Seems wise at your age and stage. It’s great to see men involved in their own plans as so many women seem to take the lead for them and I think the more involvement by the patient the better outcome.
This post was two years ago... still standing and doing amazingly well. Starting radiation treatment this week on the two lymph nodes and one bone metastasis and the doctor has used the term “cure” possibility or at least a durable remission. Thanks for reminding me about this post.
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Preparing for Provenge
PSA drop after Provenge.
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