Been a long time since I posted. I’ve been in a clinical trial that began in 2014, that was to study the use of TAK-700 with Eligard/Lupron vs the SOC (Eligard/Lupron) plus daily bicalutamide. It has served me well, as I’ve been in the SOC arm, and have made it 6.5 years with just small increases in PSA. However, a month ago, I went for my annual “picture day” (bone scan, CT and Chest X-ray), and got a phone call about 5 hours post test from the NP in my MO office. “We don’t like the look of this met at L4; we need a stat MRI”. Hmmm...
About two weeks prior to this, I’d rolled over in bed and “threw my back out”. This has happened over the years, so I payed in bed for about 4 days, and the pain subsided, so just thought it was a pinched nerve...NBD. However, the NP asked if anything had bern happening with numbness, tingling, etc, and I told her about this. It definitely flipped a few switches for her.
Now - for some history - I was do in 2007; Gleason 9; Open radical prostatectomy; at removal it had escaped the capsule, was in surrounding muscle wall, HP the neck of the bladder, seminal vesicles, and in 2 of 15 lymph nodes tested. Had been on intermittent ADT from that point. Had salvage radiation (38 treatments) to the prostate bed in 2010; then to get me into the trial in 2014 they had to “see” cancer (rather than having it floating in the bloodstream). End up metastasizing to bi-lateral ribs, left clavicle, mid-right humerus, cavernous (back of the skull for us non-medical types) and L4. With only bicalutamide for 6 weeks (before restarting Eligard) my PSA dropped from 24 to 0.06, and all Mets disappeared EXCEPT the one in L4...but it hadn’t caused any issues - until now.
The MRI showed the tumor wrapped around the bottom of L4 and growing up the inside & outside of the spine, causing the first symptoms I’ve ever felt in 14 years with this disease. Rad Onc was involved, and they hit me with 5 treatments (20 gy) and knocked out the problem - immediately felt better!
I’m now beginning Provenge next week now that I’m officially mCRPC. A little freaked out of the unknown for me (the leukapheresis part, which I’ve never done before), but I’m sure I’ll do fine...then it’s on to Zytiga or Xtandi I guess - but I’ve made it this long, so I’m sure I’ll be fine. Just bringing old friends up to date on my progress with this crazy disease.
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Understood - however Tall_Allen & pjoshea have loads of expertise in research, so their comments are always welcomed. The same with Chuck Maack over the years. I have complete faith in my MedOnc - he’s kept me going this long, and he knows that I do a great deal of research as well, so we discuss which way we’re going to go and why. I’ve won some suggestions, not with others - but we work together as a team - definitely not a “you’ll do this” approach. I do wish everyone could have a team of docs that are as good as I feel mine are.
Chuck still maintains his website, The Prostate Advocate - outlines his entire journey with PCa...he was kind of my hero because he made it 14 years with basic ADT (though using triple blockade - I only did 2), but I made it that long as well...so keeping my fingers crossed. I turn 65 tomorrow, and if I can get another 14 years, I’d be a happy man!
I wish Chuck's article I just found: annexpublishers.com/article... was added to this site. It messed me up a year ago with 10 days of levaquin and I'll never be the same.
What is the TAK-700 and why don't I hear about it on this site? Sounds like it worked well for you.
Do you think that Triple Blockade is actually proven to be effective or was it something else that was key to Chuck's success? Does he have a high gleason like you and I or a lower one like a 4+3 or 3+4? Do you need the casodex as part of the triple blockade if you are using an antagonist like firmagon? Wasn't there a study result not too long ago that said the triple blockade technique did not work any better than ADT alone?
First, the trial I was in was SWOG S1216, and I was in the Standard of Care arm, so I DID NOT get TAK-700. From what I’d understood, the TAK-700 had failed in two other trials...so I don’t know how responses had been for those taking that drug in this one. The only change from normal ADT was that I took bicalutamide daily for 6.5 years as well, rather than a just couple of weeks for flash effect, as most of us have done.
I don’t know about Triple blockade - I know Chuck swore by that when I was first diagnosed, and I had a long discussion with my MedOnc about adding Avodart at the time. He felt that there wasn’t enough need for another drug to add at that time in my case - his words at the time were “we don’t need another poison in your system right now”, or something to that effect.. I’m no expert, but I believe the real purpose of the triple blockade was to keep the issue of DHT from coming to a head, as often over long periods the bicalutamide could cause a change which resulted in DHT, which could obviously cause problems, since the dihydrotestosterone is like super-concentrated testosterone, and could cause painful growth to distant mets. It was also supposed to help with reduction/elimination of adrenal testosterone as well. I went with the double, and I seemed to do alright; if I hadn’t had the flare-up in L4, I’d probably still be in the trial, because I was still under the trial PSA limit of 2.0. But my MedOnc was right - the back pain I just thought was a pinched nerve in my back WAS a real symptom of the met at L4 impinging on my spinal cord - and now it’s MUCH better after the zapping...and boy has radiation changed in 11 years!
I don’t know anything about the triple vs ordinary ADT - not sure who began that protocol - Dr. Myers maybe? I can only say the double worked for me, and if I hadn’t been in the trial, I’d have probably continued intermittent ADT as I had been doing, because it always worked for me, as I responded well to just basic treatment, even though my Gleason was high at a 4+5.
I was scared from the outset about going refractory (ie mCRPC) - of course, when I was dx in 2007 (at age 51) we only had three protocols - ADT, then Ketoconazole with Hydrocortisone, then docetaxel/cabitaxel, and that was it...a lot has changed in 14 years, and as we know, more is coming down the pike...
Hey guy! I think that the Tak-700 was a relatively small study . This is only the second mention of this here in the three years I’ve read . I’m the only one on this site that is still using Tak -700 as far as I know . The test failed to promote life ..It was cancelled .. Its working for me almost six years later . I Did the orch in 2017 .The Tak is said to stop the signal between the pituitary & adrenal production .. nothing last forever however ? So we push on ! 😷
It’s cause problems with my tendons and other connective tissue. I couldn’t jog at all last year , no pull-ups. They are still raw and sensitive. Mitochondria damaged abs atp is not being produced very much. Also had heart palpitations, weakened bladder, fatigue and mental damage caused from it.
I dislike the levaquin. I took it for two months straight many years ago for a staff infection. It drove neuropathy in me. They had a class action against it for this .
I never tried it but my understanding is that Provenge is a relatively weak treatment that is most suitable for low grade cancers, but it does work for some men. I have read that it can be more effective when combined with Lupron or other ADT drug, assuming that you are not yet castrate resistant. Provenge might be worth trying, but I would expect that Zytiga, Xtandi, docetaxel, or one of the other advanced treatments are ahead for you. Don't despair however, Your response to treatment so far has been very good and you may have similar good responses to others with very bearable side effects.
I’m definitely now Castrate Resistant, but basic ADT will not end - my 3mo Eligard shots will continue. Plus there’s a lot of new data that has been gathered since acceptance of Provenge in 2010. The Phase III IMPACT study upped the OS rates from only 4 months to up to 2 years...and if it’s followed up with the next level anti androgens (Zytiga/Xtandi/Erleada) things can continue nicely. We will see - but I haven’t heard of many negatives towards Provenge - in my opinion it would probably work much better if it was approved for use during Early treatments, because as a “vaccine” it seems like it would be more effective killing off cells before they’ve had a chance to land and take hold in metastasis - but I’m not a doctor, just a guy who had tried to stay up with what’s happening to my own body. Guess I’ll see how things go for me over the next few months. My PSA right now is only a 1.89, so I’m not terribly concerned at this point really...
Although, as you say, you are not a doctor, I have read statements by doctors that agree with your argument for early treatment. I seem to recall Dr. Charles "Snuffy" Myers said the same thing.
I sprained my back getting off the couch. Suffered through the pain and 2 months later was diagnosed with state iv prostate cancer. T-12 compression fracture. Complication of prostate cancer. I was offered radiation but refused. Now I have L-4 and L-5 issues. Back issues seem to slowly be getting better. I was told Provenge was in my future. 3 years ago. I will definitely go with Provenge when/if offered.
I was just joking I'm really not a badass, my ex-wife (in Ohio) is.....
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 03/07/2021 9:39 PM EST
You have a nice positive attitude . Probably one reason for your 6.5 years . Congrats . You caught my interest with Tak-700. I got on the test did imrt and received tak -700 in 3/2015 . Still have my prostate I’m one of the few still on Tak-from what I’m told.. ..I did an orch 2017 and dropped the lupron . Got osteopenia and have taken prolia for over two years . Had a 10% improvement last dexa scan .. Somehow I’m still here after a rough start .. Strive on tdouds!
It's good to have Provenge on your side. Welcome the opportunity. In the USA it is not paid for before CRPC even though it would probably be even more beneficial.
TAK 700 (Orteronel) is a CYP17 inhibitor so does block adrenal androgen synthesis. It's use has been supplanted by abiraterone + prednisone, which also accomplishes this while also inhibiting AR activation and escape mechanisms.
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