PSA Never Below 1.9 After RP, Now Rapidly Rising

sblome
sblome Member Posts: 10
edited March 2014 in Prostate Cancer #1
I'd like to explain my situation to the group and ask for your thoughts as to where I might go from here.

I was diagnosed in May of 2007 at 48. My only indication was a PSA of 8.0 caught at my company's health fair. I opted for a da Vinci radical prostatectomy. Negative bone scans, PSA right before surgery: 10, Gleason: 7, tumor type: T3a, one positive margin, negative lymph nodes.

My wife and I hoped this would be just a bad memory, but after surgery, my PSA never dropped below 1.9 and soon began rising again rapidly. This obviously hit us hard, but we got going on Plan B.

I did a lot of digging and opted not to go to hormones right away, but instead to try an aggressive treatment in a clinical study. The study administered salvage radiation + chemo (Taxotere) + steroids (Prednisone). My PSA did go down from 2.7 to 1.7, but has begun rising again rapidly, at last check 3.2. This gives me a PSA doubling time of about 3.5 months, which puts me at high risk for future metastaic disease.

We saw our oncologist last week and heard the word "incurable" for the first time. We suspected this was coming, but we are reeling from the news. At my age, given the survival statistics, this is very frightening.

My wife and I are now at a huge decision point for Plan C. Our goal now is to hold off metastaic disease as long as possible and hope that treatments improve in the future.

I've not had further scans, but assuming the bones are still negative, we're trying to decide whether I should:

- Begin hormone therapy right away

- Wait on hormone therapy to put off experiencing its side effects (based on the school of thought by some doctors that there is no survival advantage to early hormone use)

- Go to another clinical trial (I think I've read ALL of them on clinicaltrials.gov - I actually don't qualify for most of them)

- Try to get an unproven but legal "off label" prescription of some other drug, either alone or with hormones (my oncologist is not very comfortable with off label prescribing, so any thoughts you might have on medical centers more willing to be aggressive would be appreciated)

I am doing many of the common sense things, such as eating better, more exercise, attending support groups, taking supplements such as selenium, eating tomato products, etc. Any advice in this area would be appreciated.

Thanks for reading a long post. I posted to this group when this first began and several users were very helpful and encouraging.

Comments

  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #2
    S:
    This is an unfortunate
    S:

    This is an unfortunate situation. You are right that the trials options for men without hormone treatment are limited. Hormone treatment can be effective for long periods for some men and the side effects are widely variable. Some with few or nearly none, others miserable. It is impossible to predict. I started at 58 and had impotence, but little else. I have leaned on the experience of those at http://pcainaz.org/phpBB3/ and found them most knowledgeable and helpful. Chat is on Saturday pm also, if interested.
    You are seeing an oncologist, a good sign, and off label prescribing for cancer is a regular thing, though I am unsure what you may be asking him (her) for. Common off label drugs for men in your case would be Avodart, Crestor, Leukine, celecoxib, among others. Not all at once. If you can locate an oncologist specializing in PCa then you will have a head start to some imaginative pathways for treatment. Several sites offer such information.
  • nodawgs
    nodawgs Member Posts: 116
    #3
    This is a terrible thing to happen after surgery, but my first thoughts are you can't just sit idle and do nothing. Cancerous cells are replicating as you read this. Have you thought about an off-label treatment such as bicalutamide monotherapy (Casodex only)?

    Like you, I had a recurrence but it was after cryoablation aka cryosurgery. Due to my relatively young age and numerous other factors, M.D. Anderson's Genitourinary Center placed me on "Casodex only," a little 50mg pill protocol more popular in Europe than the U.S. I thoroughly enjoyed nearly 3-years of near-assymtomatic living as if I had no cancer.

    Well, let me back up there a bit...a correction. My party was rained on by non-small cell lung cancer, followed by squamous cell carcinoma of the epiglottis. I guess I'm an over-achiever.

    I can't help but wonder what part of your bod is host to the cancerous activity responsible for your current PSA assay...a lymph node?...tissue in the area of the prostate bed? The reason I ask is that M.D. Anderson is treating certain stages of PC with proton beam therapy, but here, again, the location question is the same.

    There is a new drug on the horizon called, "abiraterone acetate." However, it is still investigational and so new that clinics in Australia, Europe, Canada, and the U.S., only recently started recruiting for Phase 3 trials. I read a few words about its application for early stage PC, but the trial focuses only on end-stage, metastasized HRPC (hormone refractory prostate cancer)...which, unfortunately, is where I now am. My clinic (previously mentioned) stated they would submit an application to the FDA for "Compassionate Use," allowing my access and treatment with abiraterone. That's where I am, now...the cliff-hanger of all waits.

    In addition to a great QOL, early estimates from Abirasterone's Phase 1 and 2 trial results caused a flurry of expert opinions claiming that abiraterone could provide as much as 18-extra months survival. How this fits within a treatment strategy for very early stage PC such as yours, I have no clue. I just thought I'd throw it out there for you to investigate.

    Optimistically...at your age, I'm thinking a drug or chemo will surface that will enable prostate cancer to merely be managed as a systemic, chronic disease a person can outlive.

    Man! I really hate to hear post-op results like yours. That's a bad deal if there ever was one!

    You and yours take care,

    Perry aka "nodawgs"
  • Oldenbear
    Oldenbear Member Posts: 1
    #4
    Similar situation, treatment includes hormone therapy
    I was diagnosed in June 2007 when my PSA rose to 24. Biopsy confirmed aggressive prostate cancer. Scans revealed activity in local lymph nodes. I began hormone therapy which included Lupron injections and Casodex. My PSA dropped to 2 after several months, but then began to rise rapidly to over 300 and scans revealed bone metastasis. My oncologist started me on chemo once every three weeks (taxotere, zometa) and daily prednisone. My PSA has subsequently dropped to 14 and I do not have any pain. I am continuing my Lupron injections.

    My doctor has also told me that my cancer is incurable, but feels it is manageable. I am not a doctor, but I would think that some of the rise in PSA may be due to the non-hormone resistant cancer strain. In other words, the testosterone in your system is feeding some of your cancer. It may be worth discussing with your oncologist or getting a second opinion.

    Do not lose hope my friend.
  • nodawgs
    nodawgs Member Posts: 116
    #5
    Oldenbear said:

    Similar situation, treatment includes hormone therapy
    I was diagnosed in June 2007 when my PSA rose to 24. Biopsy confirmed aggressive prostate cancer. Scans revealed activity in local lymph nodes. I began hormone therapy which included Lupron injections and Casodex. My PSA dropped to 2 after several months, but then began to rise rapidly to over 300 and scans revealed bone metastasis. My oncologist started me on chemo once every three weeks (taxotere, zometa) and daily prednisone. My PSA has subsequently dropped to 14 and I do not have any pain. I am continuing my Lupron injections.

    My doctor has also told me that my cancer is incurable, but feels it is manageable. I am not a doctor, but I would think that some of the rise in PSA may be due to the non-hormone resistant cancer strain. In other words, the testosterone in your system is feeding some of your cancer. It may be worth discussing with your oncologist or getting a second opinion.

    Do not lose hope my friend.

    Non-mutant Population of Cancerous Cells
    I'm not a medical person, either. The following is just a bunch of rambling, unqualified opinions:

    You are precisely correct about the existence of what you are referring to as "non-hormone resistant cells." I refer to the same type cells as a "non-mutant cell population." I think we're talking about the same thing.

    Hormone therapy for adenocarcinoma prostate cancer (as opposed to neuroendocrine PC) usually consists of a gonadotropin-releasing hormone (GnRH) agonist such as Lupron and an adjuvant such as the anti-androgen, bicalutamide, aka Casodex. Unlike Lupron, Casodex doesn't reduce testosterone output, but "blinds" the hormone receptors of prostate cancerous cells to testosterone's presence, regardless of its origin. This is important because the adrenal glands also produce testosterone, though in a lesser amount.

    I've noticed that when a refractory response is eventually indicated by a rapidly rising PSA assay, some clinics would jump the gun and take patients off Casodex, Lupron, or both. Just a guess, but I presume they did this on the thinking the cancerous cells were no longer hormone dependent, but hormone independent...no longer requiring the presence of testosterone for cell replication. That was probably true for much of the cancerous cell population, if not most. However, my bet is, there were cases where a population of cancerous cells still lurked around that would respond to any traces of testosterone.

    You didn't mention whether or not your doc took you off Casodex. If so, you might ask to get back on the stuff to see if it impacts your PSA assay.

    Oddly enough, after a refractory response is established, some patients can get off Casodex without any noticeable effects. Perhaps a lot of this has to do with low vs high Gleason Scores...dunno. After I demonstrated a refractory resonse to androgen ablation, my doc knew better than to take me off Lupron, but at my request, briefly allowed me a break from Casodex to see if I could do without the stuff. In my area, we're talking about 560-bucks/month for 30 little pills the size of baby aspirins. That's 560-bucks a month I could better use for gas in my Harley, at Hooters, or other fine arts activities. WHOA! That didn't work! My PSA immediately jumped back in gear with an exponential rise! Whew! Bad idea, but it was mine, not his. At the time, I didn't have all this wunnerful Medicare Drug coverage that hits the donut hole in early May.

    At any rate, I'm still on Lupron and Casodex, have already been through the docetaxel (Taxotere) chemo gauntlet, pooping out with a refractory response on the 7th infusion. These bc gals can do Taxotere for months on end without a prob, but that stuff nearly killed me. I was switched to mitoxantrone/prednisone infusions. After the 1st infusion, my PSA dropped from 1,075 to 795, but after the 3rd infusion, jumped up to 1,087!! I'm still rattled by all this because I was just informed of this refractory business this past Thursday, August 21, 2008...a date I won't soon forget.

    That really pulled the rug out from under me because I was confident I'd get 6-months or so out of the mitoxantrone. I just didn't expect it this soon...the realism that mitoxantrone chemo was the last treatment available for PC, period. There are other chemos out there, but none that I'm aware that are proven to have any real clinical value. In terms of "clinical value," I mean any drug or chemo that has provingly demonstrated an ability to slow progression and ease symptoms for an acceptable QOL.

    Right now, I'm in a holding pattern...the mother of all waits. My doc is submitting a "Compassionate Use" application to the FDA for my treatment with Abiraterone Acetate. Currently, Abiraterone is considered investigational because it's still in a Phase 3 clinical trial that select clinics in Australia, Europe, Canada, and the U.S. are now recruiting. It's expected to run 3 years, making the product available for public consumption by 2011. The successes of the Phase 1 and 2 trials caused a flurry of expert opinions that Abiraterone had the potential to add up to 18-months survival with a very acceptable QOL. I don't pay much attention to those type statements because the originators may have very well been persons having much to gain, such as holding large blocks of stock, etc.

    We're going down the same paths at about the same time, although compared to your results, I feel like the canary in a coal mine. I wish I understood why your doc feels your disease is so "manageable." I say that because the mean tolerance for Taxotere for PC was only 7 infusions in the trials before a refractory response was demonstrated. He may have a card up his sleeve we don't know about. I sure hope so. I'd be extremely interested in hearing more about your treatment as time moves along. Please do that...and...

    Best of Luck!

    "Perry" aka nodawgs
  • fjessup
    fjessup Member Posts: 6
    #6
    To Sblome - re Eating right
    On your though of eating right, I do think this is one thing that you can do and go at full tilt that won't hurt you, and may well help you, as you continue to look for other treatment. Effectively, it seems that lots of soy, green leafy antioxidant vegetables, green tea, vitamin D, immune system boosters like Beta Glucan, etc. may seem to offer at least some help in providing a systemic cancer suppression effect similar to hormone suppression and chemo, but more mild and natural. Maybe not at all as effective in dramatic way as hormones and chemo, but gradually may have some positive effect and not destroy your immune system (but actually in fact *build* it) as chemo does. Suggest trying deliberately to really embrace this immediately while you continue to look for medical treatment. See Michael Milken's prostate cancer diet books (formerly Wall St. junk bond king; now founded Prostate Foundation.) Good luck and prayers with you.
  • 2ndBase
    2ndBase Member Posts: 220
    #7
    Stess Less
    I'm now 59 and was given a 50% chance to survive 2 years in 2004. Psa was 24 and gleason 9. I took one shot of Lupron to shrink prostate and 40 rad treatments. Psa now is well over 100 and I'm doing fine. The radiation killed all the cancer in prostate but it had already spread. Knowing there is no cure and that treatment has nasty side-effects I have chosen to live on with no further treatment. I got all the stress out of my life, continue to work part time and do not worry about the things I can't change. There is no evidence that further treatment will extend my life by more than a couple months and plenty of evidence that treatment will make my quality of life worse. Obviously we all need to eat right and exercise but we don't have to stress about our problems. Stress kills more people than cancer, always has and always will.

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