Is long-term remission even possible with my stats?

History: Radical in 2000, GS 4+3, remission until 5 years ago. Oligometastic disease (spine and sacrum) treated with SBRT 2 years ago but later found PCa in lymph node. Had radiation to nodes. PSA zero for 16 months, then aggressive recurrence -- PSADT 39 days. Now one PCa spot on lower sacrum which will get radiated soon. Three weeks ago I started Zytiga + transdermal estrogen (instead of Lupron). I will be on this regimen for at least one year but am leery of stopping because of the aggressiveness of this latest recurrence. I'm tolerating this treatment well, except for major fatigue.

What do you think? If my PSA is undetectable after a year, should I hope for a durable remission without any drugs (except Avodart, perhaps)? One oncologist said I need to stay on treatment for the rest of my life, but I REALLY hate the thought of that. On the other hand, I read that "Snuffy" Myers, whom I respect very much, aims for durable, long-term remissions. But, with my last doubling time of only 39 days, maybe that just isn't in the cards for me.

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  • 39 days DT; but what was it initially ? THe PSA was __ and doubled to __? What is your PSA next week when you get your monthly blood draw. More information needed, before making a comment.

    PS: Before you think, how am I doing; you should have at least 3 blood draws for PSA and testosterone. After your hormone treatments of 3 or 6 months, your doctor may order a cat and bone scan. What will they show? You have to give your doctor.s treatment plan time to work.

    Rich

  • The PA was 0.00 then increased to 0.2 in 3 months and then to .94 after another 3 months.

    My testosterone should be unmeasurable after 4 weeks on Zytiga. The doctor does not even measure it, assuming that Zytiga (along with estrogen) does its job. I'm sure I will have no more CT scans unless the PSA goes up a lot. I have already had over 120 Gray of radiation and about 5 CT scans per year over the past 3 years and likely will not be able to have more. (Still anemic from two years ago!) BTW, I've had mets occur twice with a PSA of less than 1.

  • Really doesn't measure T? PSA and T measured together every time for past 13 1/2 years. It's something that I cannot imagine.

    Gourd Dancer

  • I thought gourd_dancer and PaulC2 had good comments.

    Rich

  • All good comments on this thread IMO. “A Dr. placing a man in ADT and not checking T is akin to a dr placing a diabetic on insulin and not checking his Glucose levels” quote from Stephen Strum. Also you should be testing estradiol .How are you doing the patches, and how many a week, are they .1 mg climera? When I was doing patches I always prepped the area with 90% alcohol to increase absorption, as advised by another patient long ago.Congratulations on your long time survival with this disease, You have plenty of options left in your arsenal . I wonder if doing the zytiga at night would alleviate some of your tiredness. I wish you the best.

    Dan

  • I do get my testo measured from time to time ... has always been in the normal range ... but my oncologist said there is no point in measuring it while on Zytiga. He measures PSA, liver enzymes, and other things, but NOT testo.

    I use two 0.1 mg patches which are changed twice weekly. I didn't know about alcohol increasing absorption; will start doing that too.

    Measuring estradiol was important when the main reason was to reduce testo. But Zytiga does the heavy lifting for testo and the main benefits of estrogen are no hot flashes, minimal metabolic effects, increased bone density and improved LDL levels.

    BTW, I do take Zytiga at bedtime, but am still exhausted at times during the day.

  • So I think you are saying 4 patches total, I was using 6 a week, one changed daily 6 out of 7 days.and doing zolodex at same time. Estradiol worked well for me at different times over last 11 yrs.Others try to keep stay away from E2 on this list .T should be under 20 acccording to new studies. I would request t every time as ,Gourd dancer says,as long as you are getting labs. IMO ,from my experience psa test can vary from one day to the next up and down and you are still dealing with vey low numbersIMO, I am not a Dr. just long time patient.

    Dan

  • I agree with the T being under 20, but with Zytiga the T should be undetectable even with ultrasensitive tests. I think that is why my oncologist doesn't bother to check it ... just PSA.

    Guess I could ask my Uro for a lab requisition for T. He usually gives me whatever I ask for and is basically clueless about treating PCa with anything other than surgery or Lupron. He has never prescribed Casodex, Zytiga or Xtandi or estrogen patches and I had great difficulty getting Avodart from him because he had no experience with it.

  • Sounds like a urologist, You may want to seek a medical Oncologist specializing in Prostate cancer, as you say he has never prescribed Casodex,zytiga or xtandi, maybe you should have a Doc that is more familar with these drugs. I have heard T may be UD with zytiga, just not sure if that means always. Have a great day!

  • Oh yeah, I hardly use the Uro for anything...I do have a great Oncologist who deals only with PCa.

  • Remember T is not only produced by the Testes. The adrenals will also produce T, and the Hypothalamus tries to regulate T. It tries to ask the adrenals to make more, when on ADT. Zytiga, I do not believe reduces T, but it prevents T from activation in the Pca cell. I may wrong here--but in any case--I get T, PSA and E2 every 30 days. I want T under 20, PSA undetectable, and E2 just under 20. Medical Oncologists would understand best approach to measurements.

    Nalakrats

  • I believe Zytiga drives T down to zero very quickly. If you are on Zytiga, have you ever had a detectible T (assuming you were on it more than 4 weeks)?

  • If I read correctly, you've calculated PSADT based on only two values — 0.2 at some point and 0.94 three months later. Two data points is insufficient to provide any quantiative confidence. After two or three more tests, you'll have a better idea whether your PSA is rising at constant exponential rate (i.e., constant PSADT) or bouncing around all over the place.

    I am not a doctor, so don't place too much weight on my opinion. That said, it seems pretty clear to me that the cancer became systemic some time ago, and that you are best off considering it a chronic condition requiring lifelong treatment. A durable long-term remission is quite possibly achievable, but (in my opinion) only with ongoing treatment.

    For me, ADT started nine years ago. Every time I've taken a holiday, my PSA becomes detectable after a while, and thereafter I have a constant PSADT of 60±2 days. There's now no realistic hope of my testosterone ever returning to normal levels, and so it's not something I even bother to look at (although my oncologist keeps testing it); now that I'm on Zytiga, I'm much more concerned with my potassium and with my kidney/liver functions.

  • I won't have any better data on PSADT for quite some time. I'm on Zytiga now (4 weeks Friday) and most likely my PSA is very low.

    Zytiga is planned for 1 year (that's all my insurance approved). After that time, I would be happy with Casodex and Avodart. Meanwhile, my oncologist wants to throw the kitchen sink at it ... he suggests chemo soon and possibly Provenge. I definitely don't qualify for Provenge and paying $100K for it is out of the question.

    BTW, after the previous rounds of radiation, I had a PSA of 0.00 for around 16 months, then something went wrong.

    Thanks for your input.

  • If your experience on Zytiga is like mine, you'll have a good run on it. You said your insurance approved Zytiga for one year, which is standard; it is also standard that, if the first year is successful, they'l re-approve another year. (But you might want to check.)

    Like you, I don't yet qualify for Provenge, but I'm keeping it as backup for when the Zytiga stops working. Perhaps ignobly, it has occurred to me that I could game the system by reducing my Zytiga dosage from four pills daily to three in the month leading up to my quarterly PSA test, and then, if my PSA has increased a smidge from its baseline of 0.03±0.01, reduce further to two-and-a-half pills in the month leading up to the next quarterly PSA test. If that fetched a second small rise, then with "two successive rises in PSA", I'd qualify for Provenge (even though the Zytiga is still working fine), and I'd have stockpiled a few weeks' supply to guard against future interruptions. So far, I've not put such a plan into action; but with the possibility of early retirement late next year, I'm continuing to mull over the moral and medical drawbacks of gaming the system.

  • That's good to know that insurance might cover Zytiga for an additional year.

    That's an interesting way of "gaming" the system to qualify for Provenge.

    I've been retired for many years and just hit 79 y.o. this week. My dad died of PCa at age 86 (during the 1980s) when treatments for PCa were very limited. I'm hoping to do at least 86. My mother is 99 and going strong. I am in excellent health (except for PCa), eat a Mediterranean diet, jog 4 -5 days a week, play chess weekly, and generally have little stress except when the PCa acts up.

    Time for a jog now!

  • Good on you for choosing forebears wth good genes, but much more so for stewarding them so well b staying fit.

    My dad died with prostate cance (and longstanding ill health unrelated to PCa) at age 73, twelve years older than I am now. As you age, you tend to compare/contrast yourself with parents at similar or comparable age.

  • One thing I'm wondering about is whether the Provenge will do more good now than it will if and when Zytiga fails. We have seen that a number of therapies do better in combination with each other than when administered sequentially. The immune system might be more effective in attacking Zytiga weakened tumor cells than in strong tumor cells. However, it's also conceivable that you will get more total benefit by letting Zytiga run its course without developing any resistance to Provenge, then starting Provenge.

    One possible course of action is to get more frequent PSA tests so that, the PSA does start to increase, you can go on Provenge as soon as possible.

    Alan

  • I was listening to a video from Snuffy Meyers yesterday about this very subject. He indicated that no one really know yet whether to use the combo or sequence them and which go use first in the later case. I'd give you the reference if I can find it.

  • I also had surgery in 2000 with a Gleason 3+4. The 3+4 was revised to a 4+3 after surgery. Recurrence followed a little under 2 years later and I have been on one type of treatment or another ever since. Today I am on Casodex and Avodart and my PSA is 0.073. Perhaps if you followed the same treatment regimen, your PSA would be 0.073, but I seriously doubt it. We all have individual cancers that are somewhat unique. It is very difficult to anticipate what tomorrow will bring. I am resigned to the fact that I will have to manage my cancer the rest of my life. I have seen tremendous advances in the past 10 years. and I am extremely optimistic about managing my PCa in the future. I had a conversation with Dr. Myers about durable long term remissions. My impression was that the prerequisite is achieving an undetectable PSA. Feel free to contact me if you want to compare notes. I wish you the best possible outcome.

  • Winston and short PSADT, Thanks for the very informative posts, guys. I always learn something to ask my onco at our next meeting. He, too, is a believer in aggressive therapy following return of disease. I was diagnosed in 2005, treated with radiotherapy and seeds and had a near-ten-year run. But my PSA did start that dreaded rise. I had a brief cryo treatment that gave me an additional 2 years. I feel blessed and have accepted that I will be on a life-long course of treatment. Started Lupron and Zytiga 7 months ago. So far, so good. Keep posting. You are doing a world of good.

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