I've been on Zytiga three months today. A month ago my testosterone was undetectable, but the result I got yesterday was 39. (I haven't received the PSA value yet.) My questions run along these lines:
1. Does this indicate that Zytiga is no longer working?
2. If the PSA has also increased (will find out Tuesday), would that indicate castrate resistant PCa?
Would like to hear others experience in similar situations.
My PSA was 15.7 and testosterone 38 in November, and in December it was PSA 9.5 and testosterone was 44. I have been on Zytiga and Presidone and Lupron for 2 months. I sent an e-mail to my MO, and I am awaiting a reply.
Rich
Hi Rich. One doc mentioned my husband may be CR with a T of 69. He has not been on Lupron for nearly a year. Did your MO answer you? These numbers are very valuable. Thanks! Hope you are feeling good.
From what I've read, Zytiga should bring your T to around 1. I'm wondering if it ever worked. Are you still also on Primary ADT? In order to determine whether you are castrate resistant, you must first be sure you are castrate. A testosterone level of less than 20 is now the standard for "castrate level" of T. I'd be focused on getting the T down, then looking at PSA after.
Hi gregg57
This is Roland.
I was out of the Hospital on 22 Dec 17.
I have delayed conventional treatment so far and if things did not improve I had an oncologist appointment on 15 Jan 18 to discuss Zytiga and ADT treatment, Since been on the forum the feed back on Zytiga was impressive but a few days ago Neal who has been on the treatment for 18 months found the drug has failed again and he has advanced to Provenge.
So best of luck on your journey and who knows you will fair better. In the research apparently some has been able to maintain for 4-5 years.
So with this new information I decided to do another Lab Rat run.
If successful I will award myself Lab Rat Honorary Doctorate.
It had been an intensive treatment for me over the last 5 days and I will keep up until 2 Jan 18.
I am amazed by the recent events and findings.
Happy New Year to you and Rich.
Let me correct that. Zytiga worked for almost 3 years for me. There were no changes in mets & my T stayed under control.
As to what Gregg said, ideally you want Zytiga to bring you down to undetectable. However, I was at 160 when I started it. We were pleased to see a steady drop to 13. Then it wavered & began rising before it was considered to have failed.
I'm also being told that PSA scores themselves are not regarded as the critical measurements anymore as to whether a drug is working. What counts is whether or not you are progressing on scans.
ShortPSADT & BigRich, it is certainly concerning that your T is rising, & it's likely you'll need a change in meds. But let your doctors interpret it for you. I hope they won't keep you waiting. I know how that feels, & I really appreciate doctors who communicate rapidly about this sort of thing.
Neal
P.S. Happy New Year, guys. May your doctors respond promptly & give you encouraging info.
Neal, Happy New Year! I have been waiting for my doctor reply to my e-mail for 11 days.
Rich
Rich, I couldn't live with that. I'm a Kaiser member & their doctors are expected to reply within 2 days. I have the power to change doctors online. The ones I have now respond much faster than that, often right away. They are friendly & encouraging. They are not prepared to try anything that's not proven, like the (now retired) Snuffy Myers & others. Do they have Kaiser where you are?
Neal
Neal,
11 days ago, the medical assistant said she gave the e-mail to the doctor, still no reply. In an additional 9 days I will get face time and ask her the question. I don't know if Kaiser is in my area. My former employer would not be involved with Kaiser.
Than you for the concern.
Rich
Is there an employer-covered plan you could switch to? I'm in Kaiser thru my former employer (I'm retired). I really feel for you in not getting timely responses. I "fired" doctors who didn't reply within 2 days. The system showed if if they were out, & until when. I only fired them if they were there. Best of luck!
Yes, my T level was undetectable just one month ago when my PSA was 0.03.
I shudder to find what it is this Tuesday. And, I continue to be on primary ADT but in my case it is estrogen.
Good luck tomorrow. Any side effects from estrogen?
I really like estrogen -- I had a several months of Lupron a few years ago, and estrogen is terrific in comparison. NO hot flashes, no weight gain (in fact, some weight loss) and absolutely no side effects that I can identify. I've had more side effects with Zytiga, but nothing serious; I think it is the prednisone that causes most of the side effects.
Thanks. I agree about prednisone. I had easy bruising, & cut back from 10 mg to 5 mg to make the bruises less deep.
shortPSADT
I'm sorry but I can't answer your inquiry.
Hang in there.
Good Luck and Good Health
j-o-h-n Sunday 12/31/2017 12:21 AM EST
Although you have joined us in October 2017, you have a great story behind you as your RP had been done in the year 2000 and the treatments have helped you to survive beyond 17 years. Not given in your posts at what age with what PSA level you were diagnosed and also the other important pathological factors including the Gleason Score. I understand they are not relevant now after such a long period, in asking your present questions.
As far as I understand the first line ADT drugs such as Lupron and Zoladex suppress the production of Testosterone by the testicles and the second line ADT drug Zytiga (Arbiraterone) which is used when the first line ADT fails is much stronger and will suppress the production of androgen by not only testicles but also from the adrenal glad and other tissues as well. Extandi ( Enzalutamide ) is also included in the second line but its action is different. It is a very strong androgen receptor blocker similar to Cassodex ( Bicalutamide ). They are called Anti-androgen drugs.
You are perplexed because the undetectable T level about a month ago has suddenly gone up to 39 which is above the standard 'castrate' level whilst you are on Zytiga. IMO there can't be any difference between surgical castration ( orchidectomy ) and chemical castration ( ADT induced ) as far as the production of T is concerned. They should bring about the same result ( proper castration ). The former is permanent and the latter is temporary and effective only during the ADT period. Therefore it would be advisable to test your T level again from a good lab and the quality of Zytiga you are taking.
If you are concerned with the 'castrate resistant' stage of PCa your question should not be directed to the T level. It will be based on a biochemical failure meaning rising PSA above the undetectable level despite all treatments that you have taken ( first line, second line, chemo, all combinations, trial drugs etc. ). Therefore you should certainly look at your PSA which is a good indicator of PCa progression.
I would like very much to know your age.
My congratulations for the success you have achieved in a long battle exceeding 17 years and
Peace, Happiness and Good Health in the New Year 2018!
Sisira
Thanks for your input. I'm really looking forward to Tuesday when the latest PSA arrives.
My current age is 79 and I'm working hard to get another 5 or more years. My dad died of PCa at age 86.
In all other respects, my health is excellent. I'm at optimal weight, jog 2-3 days a week and go the gym 3 times a week, and eat a Mediterian diet. Very little stress (except for PCa worries from time to time), have a wonderful marriage and generally am optimistic.
Sorry, I have to make a correction regarding the meaning of CRPC in the last paragraph of my reply. One way of arresting the growth and progression of PCa is by castration ( either surgical or chemical ) lowering the T level below 20 ng/dl. This is to deprive the cancer cells its main food supply. However, after some time the PCa cells develop resistance to this treatment and begin to grow again which will be normally indicated by rising PSA with or without symptoms. At this stage your cancer is said to be CRPC. Rarely PCa can progress without showing PSA increases due to the presence of PSA negative cancer cells. ( Mistake : I have mentioned 'all treatments' some of which are not related to castration ).
Currently in the UK Stampede trial arm G, Zoladex and Abiraterone are given at dx.
This has had quite remarkable success amongst the 1900 of us on this trial - I speak from my personal experience. PSA at dx a little under 600, 7 major bone Mets, Gleason 7.
That was 6 years ago, PSA currently 0.1. Quite healthy apart from the effects of no testosterone, muscle wastage etc.
Good luck all in the New Year, hopefully new drugs to trial for us.
That's great, Tommy. I wish to hell I'd had those treatments at dx in 2003.
Neal
Good Morning shortPSADT,
In my 5 1/2 battle I have had every drug except no bone mets (please see bio for treatment history)
I was prescribed Zytiga/Prednisone in 1/13 as soon as it was available prechemo. It was added to my then triple blockade of Lupron, Casodex, and Avodart. It worked for about 18 months before PSA stalled out in the .041 ultra sensitive scale. Only major SE was face swelling from the steroid.
I would be very surprised if Zytiga has failed for you this soon! If you are also taking Lupron, Trelstar, or one of it cousins to suppress T, than your T would remained suppressed. Castrate resistance is PSA rising even with low T, so if your T is rising, the cancer will be happy and will start to like the new higher T environment.
Bottom line is your doc needs to suppress T with Lupron, Trelstar, or Firmagon. Firmagon will immediately bring your T to castrate level, but it is a troublesome drug with every 28 day injections into your stomach, but it does the job!
Best wishes. Never Give In.
Mark, Atlanta
My oncologist started me on Zytiga in August 2014. PSA went from 12.2 to 0.7 in 5 months then started to rise and is now at 96! Despite this he has kept me on the Zytiga since the CT scans appear to show stable mets. He bases his clinical judgement mostly on scans and symptoms and lastly on PSA.
A good T level used to be <40. Now the wackos in the white coats say it's <20. What are they going to change next? Trust your scans, MRI's etc. The white coats deal with more numbers than a card counter in Las Vegas. Enough numbers to drive the average human into a psych ward. In the last 3 years my T level has been up, down, everywhere. I even found it hiding in my closet one time.
If you have a good oncologist, let him/her push the panic button.
Thanks! Those are good points.
You are very welcome. I use three different oncologists. I Picked three for one reason and one reason only. When it comes to making a decision regarding my treatment there can't be a tie, majority always wins. I let them rummage through the data that's way over my head. That's why they all drive a BMW and I drive a pickup truck. You can't mentally walk a tightrope that doesn't exist so why worry?
Of course what do I know?
What was your PSA? Also, my MO was not concerned with the rising Testosterone.
Rich
Bloody good point nameless. Have a Happy & Healthy New Year to all from down here in OZ
I have doubts from PA that Zytiga is working
Testosterone and adrenal glands 
Testosterone- Should I be tested and monitored?
PSA dropping
