advanced prostate cancer - I'm new here and need some advice

advanced prostate cancer - I'm new here and need some advice

Hi there,

Just found this site and was excited there is a forum to share and get advice. Everyone seems so very supportive - happy to join such a caring group. I guess we are all in this together. :)

My short story: I was diagnosed with advanced metastatic prostate cancer almost 2-years ago (May 2015). Was playing golf and had a lot of pain on a swing - thought it was a muscle pull. Kept getting worse and finally figured out it was PC.

PSA was 227. Found that cancer had spread to one spot in my spine and a couple of spots on my rib cage. Gleason score of 9.

Immediately began Lupron. Had multiple rounds of radiation on my spine to alleviate pain (spinal compression). Then went thru 6 rounds of chemo (docetaxal).

Responded well - PSA dropped to 9 in the first month and became undetectable in about 3 months. Over the last year (2016), PSA began to climb gradually. It went from 0.1 in January of 2016 to 0.7 in January of 2017. Since the summer of 2016 it has basically been climbing about 0.1 points per month.

I know my PSA is still in the 'normal' range, but it is slowly creeping up. And I'm worried this is a sign I am slowly becoming androgen resistant.

I have my next oncologist appointment in a couple of weeks and want to get prepared. He is apparently doing everything according to the book (validated by everything I have read in Dr. Walsh's book) and is very encouraging because my PSA is so low. But I do want to make sure I'm doing everything possible. I'm still in good health - age 55 and still able to work full time. But the wear and tear of Lupron is starting to sap my energy level and strength. And I have some chronic back pain from the damage from the cancer and the radiation. So I'm currently considering leaving work to go on disability. Want to focus more on myself, my beautiful wife of 30-years and our kids

Anyway, if anyone has any insight into a slowly but relentlessly rising PSA, I'd appreciate hearing about it. I can't get a clear answer as to when I'm no longer in remission or when augmenting my treatment with new therapies should be considered.

My best to all of you, too! Happy to share insight into what to expect from chemo or radiation. I certainly consider myself experienced in those areas. As well as what being on Lupron for 2 years is like.

Best regards,

James

29 Replies

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  • Welcome and sorry to hear your PSA is rising. From what I have learned through my fathers journey is I would ask for a full body bone scan. Have a good look to see what's going on or not, then make a decision on what treatment options. They waited on my dad's scan and the bone mets took off rapidly and were widespread. Best of luck. Added to our prayers.

  • Thanks for the prayers and advice. Very helpful! :) It reinforced what I was thinking I should do. Just don't want to wait too long and regret it.

    Best,

    James

  • Slow rise is good. Sure, no rise is better, but you're nowhere near spiking. Has you doc discussed provenge with you? When I became mcrpc, I did provenge then started zytiga a couple of months later. I responded well and got a longer response to Zytiga than average.

  • Thanks for the response. Yes, he discussed both Provenge and Zytiga last visit. We decided to watch my PSA a while longer (as you suggest it is not spiking yet) to keep as he said 'more bullets in the gun'. I guess he doesn't want to start the next line of treatment too soon.

    When did you start your next line treatments and what triggered it? A spike in PSA?

    Can't thank you enough for sharing!

    James

  • James,

    Either spikes or clearly rising PSA have been my triggers for changing treatments. As long as my oncologist does not get twitchy over my numbers, I trust him to hold off on changes. Now that I've been on Zytiga for 27 months, the rising PSA is less important than pain and bone scan results. My next check is in two weeks. We'll see how it goes.

  • Thanks! And I hope the upcoming tests go well!

  • Hope the tests went well!

  • Thanks, James. PSA is rising at a faster rate, but bone pain is under control. We stay the course for another three months, and I'll get new bone and CT scans. In the meantime, I had an AUS implanted last week, and my recovery is slower than I expected it to be. But still, life is good.

  • patandemma@jamesAtlanta

    Do you still have your prostate?

    If so,that could be the culprit.

    In adition , advanced imaging for not only new bone mets but also peri-prostatic lymph node involvement

  • Yes I still have it. I'll suggest having a scan to look for that.

    Thanks for the ideas and insight!

  • Advanced imaging is for locating spots of cancer, followed by local treatment of those spots. I think you should think of those two things at the same time.

    Systemic treatment could possibly drive the PSA below .1 (a nice target), using drugs that aim at additional hormonal targets. I have no experience with these however.

    There are articles online that talk about the PSMA/Gallium scan.

  • I was diagnosed with PS in 2004 and had 4+3 Gleason, proceeded to have a radical prostatectomy, followed by radiation of the bed of the prostate with (I demanded prescription of Zoladex (slightly different spellings in USA and other countries) before during and after the radiation. Pathology tests on the removed prostate indicated that the cancer had broken through the capsule in one area - thankfully no metastaces (cancer infecting the bone) have been identified.

    Trials done on the use of Zoladex (as I demanded) after my being prescribed it has led to it being used as the treatment of choice. (I mentor PhD students in BioMed at Uni and am a compulsive researcher). My PSA started to rise and I was placed on 'spaced' Lucrin (again slightly different spellings for the same this - due to copyright). Lucrin has ghastly side-effects but at least it keeps cancer at bay until (eventually) resistance occurs and you have to go on to other anti cancer treatments - usually chemo. Earlier patients were given continuous Lucrin treatment but 'spaced' treatment - you wait until the PSA starts to rise again - was introduced because it extended the effective time before resistance set in.

    Incidentally, I had asked for some lymph nodes to be taken during surgery and they weren't!!! Apparently I had a major bleed - 6 to 8 units off blood needed - now, that's a major bleed. Surgeons work to a time-scale (for monetary reasons ... from their point of view surgery is a business) and obviously stemming the bleed and administering the transfusions took some time so the surgeon didn't take the lymph nodes as requested.

    The scans you need are the Gallium (60?) and a dexa ... the Gallium is the very latest and can detect cancer in the cell walls down to 2-5 microns. Previously 10 microns was the most sensitive. You might find sourcing the Gallium scan a hassle but persist because it's the latest and best. The half-life (that's when you are radioactive and need to stay away particularly from pregnant women and children) is only 58-9 minutes which is a very short time. They ask you to flush the toilet twice is you use one because other people using the same toilet could receive radiation.

    The generator for the radioactive particles which are injected into you (they take 30-40 minutes to spread throughout your body) costs about $Au64,000 and is generally not approved for use except in research studies because of cost. You have to have a precisely timed appointment because the particles are generated just for the particular patient each time you have a scan (you probably only need one. Persist and get a Gallium scan even if you have to travel because it's the most sensitive scan available to detect cancer. The previous best scan was choline based and only lasted about 6 months because the technology is advancing very rapidly. I've had the Gallium and Dexa scans and the Gallium scan identified cancer in several new spots which could not be detected before the Gallium scan. At 2 microns (millionths of a metre) no treatment is recommended because they are so small but you keep an eye on them. Any treatment, such as highly localised radiation, would cause more damage than leaving these minute indicators of cancer untreated.

    Cheers, Aussiedad.

    p.s. Go for a Mediterranean type meal regime, stay physically active, mentally positive and start taking Astragalus 8 which has been used in Chinese traditional medicine for centuries - it boosts your immune system.

    A very large, reputable Japanese hospital carried out a large scale double-blind study (scientifically the best method) in which half of all patients were given Astragalus 8 and half a placebo ... regardless of what the patients were in hospital for, those on the Astragalus 8 were up and out of hospital much earlier than those receiving the placebo.

    Often Astragalus is often combined with a variety of other components - all of which have not recorded any negative side effects. One brand I've taken is Astra Plus Immunise Tonic by Healthy Care ... Australia (See on the web). Currently I'm on another brand the maker of which I need to look up and let you know ... merely a sourcing issue.

    Cheers,

    Keep up the positive attitude etc., and best wishes.

    Aussiedad

  • Good Morning James,

    Ask your Med Onc for a Guardant360 genetic blood test. It requires only 2 vials of blood but the results may give you access to new drugs, like Lynparza, which target cancer at the DNA level.

    Also the current gold standard for imaging soft tissue mets is a C-11 Acetate PET/CT. Done only at Phoenix Molecular Imaging.

    Have you had either Zytiga or Xtandi? I have had both and they could buy you more time.

    The goal with Stage 4 Prostate Cancer is to stay alive for the next breakthrough set of drugs, treatments, scans. My mission is to live long enough to be saved by the new technology!

  • I have not been on either yet. They would be my next line of defense.

    I share your mission - wishing you the best of luck with it and many prayers!

    James

  • James sorry you've joined our tribe but welcome. Your rising psa is appears slow which is good! I agree that a bone scan is necessary, I have one yearly. My first was a sodium flouride pet scan which detected my first two mets. My psa upswing lately is 2-3 pts. a month. Original psa at diagnosis was 35, after prostate removal went to 7. Gleason 8. 3 years later continue to receive lupron & exgeva, gone thru casodex & zytiga. Currently on Xtandi. At 58yo my psa is just a number or a reminder. Have had recent radiation to right hip for bone met growth pushing on nerve. My only side effects to date are loss of strength, so I'm thankful. My fear is the chemo, what was your experience with side effects?

  • Obviously everyone responds differently, but I did not find chemo to be nearly as bad as I expected. You just gear up to feel a little under the weather for a few days after each round. You don't feel bad at all during or I mmediatly after it. The side effects hit 1-2 days later. And they go away in a few days.

    Make sure you force yourself to exercise and eat right. All you need to do is walk a couple of miles a day. Helps a lot!

    Let me know what other questions you have - happy to share my experience. :)

    James

  • I was diagnosed at age 55 also. Now age 73.

    PROSTATE CANCER TREATMENTS:

    1999 PSA 2.7, Radical Prostatectomy, staged, T2a N0M0, Gleason 8 (4+4), Age 55

    2006 PSA .4, 7 weeks external beam radiation of the prostate bed plus Casodex and Lupron

    2008 PSA 1.0, to 2011 Intermittent (9 months on, 9 Months off) Lupron Androgen Deprivation Therapy

    2011 PSA 3.5, to date Continuous (injections every 6 months) Eligard Androgen Deprivation Therapy

    2012 PSA 1.7, -2013 PSA 1.8, Two Xgeva injections, then stopped Xgeva

    2013 PSA 3.2, 10 days Palliative Radiation of Mets T7 thru T10 Vertebrae and left 10th rib, PSA .2

    2014 PSA 1.29, 3 Provenge (Sipuleucel-T) infusions, PSA 1.8

    2016 PSA 9.1, 15 days External Beam Palliative Radiation Tumor on left femoral head, PSA 1.0

    2016 PSA 1.1, six monthly Xofigo injections, multiple metastasis spine, ribs,femur,sternum, PSA .66

    2016 PSA 1.15 Resumed monthly Xgeva injections

    Through 2006 treatments were largely based on rising PSA. Started whole body bone scans every 6 months or so in 2006. First bone met appeared on left 10th rib in 2007. Minor aching and pain initially, gradually increasing. Treated with naproxen sodium 220 mg as needed. First severe cancer pain episode in 2012 in thoracic vertebrae requiring Hydromorphone 2mg every 4 hours as needed. Golfed, bowled, swam, shuffleboard and bocce through 2015. Now pretty much constant level 2-4 pain treated with Naproxen Sodium as needed. When pain increases to level 5 or higher, treat with Hydromorphone, as needed. Activities now pretty much limited to bocce, movies, cards, tv and enjoying the company of family and friends. This has been my experience. Hope it is helpful to you.

    Remember it's not the years in your life, but the life in your years that matter.

  • I am early in my journey. My initial readings matched yours exactly: PSA 2.7, Gleason 8, stage 2. Dx'd back in July '16 at age 66. I was told that, after prior TURP surgery, I was not a candidate for RP and I was steered toward 45 IMRT treatments. I opted for HIFU instead. My six month ADT (eligard) shot is wearing off so I am hopeful that the HIFU procedure did the trick. Your history with the disease brings hope. You and your doctors have held it off for 18 years.

  • I am curious about how your TURP procedure affected your PC, and also whether the HIFU was directed at specific targets in the prostate, or whether you attempted to heat the entire prostate.

  • My TURP surgery was 10 years ago. My PCa diagnosis was only 7 months ago. My prostate cancer was only in one half of the gland. I discussed 'focal' therapy with the HIFU surgeon. He could have targeted just that part of the prostate but he convinced me that 'whole gland' targeting would be better -- just in case the biopsy missed something on the 'clear' side. I remember my TURP surgeon cautioning me that I could still get prostate cancer after that procedure. TURP, by opening up the restricted channel typical of BPH, is a benefit for HIFU. I was told that TURP complicated a prostatectomy surgery and so I was ruled a poor risk for RP after TURP.

  • Ah, thanks.

    Did the doctor say how close to the edges of the gland he treated? There is always the issue of hurting adjoining tissue unnecessarily. He could of course feel that the edges were not cancerous, so that gave him some "room" for adjacent damage but still contained in the prostate. But my question (in general) is do they use a spacer (SPACEOar, or others) to push adjacent tissue away from the prostate?

    Good luck, by the way.

  • I didn't discuss the details of my treatment afterwards. There's no spacer used or needed. The thing to remember about HIFU is the focus part. The energy is non-destructive until it focuses to a small blip that heats up a small bit of tissue. He also gets to see where he is in the prostate and even the temperature the target reaches. I remain continent. I believe that I am still sexually functional but I am waiting for the 6 month eligard shot to wear off.

    Good luck to you too.

  • ok

  • Thanks for sharing your journey ... and the wisdom of what matters at the end of your message. Truly words to live by!

    Quite a journey you have been on. And inspiring in terms of the years you have battled PC. Clearly with the right mindset.

    Greatly appreciate your note!

  • JAMES

    All these responses miss your very important question, are you castrate resistant? This is an important question because it will dictate all of your next actions.

    To know if you are castrate resistant you need to know if you are actually castrate. Before You see the oncologist arrange for a testosterone blood test and make sure your levels are below 20 ng/ml

    If you are castrate then Provenge is your best next option. The earlier you have Provenge the better you will be.

    Joel

  • I think we assume that only prostate cancer cells (and not healthy prostate cells) will be biologically active in low levels of testosterone. But do we know this? Is a "hormone resistant" prostate cell always a hormone resistant prostate cancer cell?

  • Thanks Joel! I have not had a testosterone test in a while. I'll schedule one. Appreciate the sound advice!

  • I'm 55. I was diagnosed 3-15 -with stage 4 metastic ,blown out of prostate into bladder,2 pelvic lymph nodes lit upand tumors blocked urethra into kidney failure,emerging from hospital with tubes surgically implanted in to kindneys and foley..1 1/2ys of that hat nighmare.did firmaron ,eleguard,Lupron,9-15 orchioectmy,Fit into tak-700 test up to now still on it.But I've also done many naturalpathic remedies from day one to present..my urologist said they rarely see this advanced stage at this early age. So you and I are members of an elete club. Woo hoo! Macho men.

  • Certainly not a club either of us wanted to join. But we will both put up a good fight! And most importantly enjoy every wonderful day!

    Hang in there and don't get discouraged. So many new things under development that I'm convinced they will have new treatments or a cure soon!

    I'm doing much better because I'm forcing myself to exercise daily. Really helps.

    Have a great day!

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