Nevy Posted June 29, 2015 Share Posted June 29, 2015 G'day I am new to all this having been diagnosed feb this year with Oligometastic prostate cancer PSA 6.4 Gleason 9 metastic deposit in left iliac bone since got on to randomised phase 3 trial of enzalutamide through princess Alexander hospital but first was on consudex which brought my Psa down to .03 along with diphereline. I am now on Enzalutamide and last visit PSA. .01 to witch Dr Cuff seamed pretty happy so I am interested in other people's views on my situation and how long my psa levels should remain low and how the enzalutamide and diphereline go to reducing or removing the metastatic deposit I was 62 when diagnosed and feel fine don't feel the metastic deposit at all and no side affects at all from drugs Link to comment Share on other sites More sharing options...
Charles (Chuck) Maack Posted June 30, 2015 Share Posted June 30, 2015 Hello Nevy, First: DISCLAIMER: Please recognize that I am not a Medical Doctor. I have been an avid student researching and studying prostate cancer as a survivor and continuing patient since 1992. I have dedicated my retirement years to continued research and study in order to serve as an advocate for prostate cancer awareness, and, from a activist patient’s viewpoint, to voluntarily help patients, caregivers, and others interested develop an understanding of prostate cancer, its treatment options, and the treatment of the side effects that often accompany treatment. There is absolutely no charge for my mentoring – I provide this free service as one who has been there and hoping to make your journey one with better understanding and knowledge than was available to me when I was diagnosed so many years ago. Readers of this paper must understand that the comments or recommendations I make are not intended to be the procedure to blindly follow; rather, they are to be reviewed as my opinion, then used for further personal research, study, and subsequent discussion with the medical professional/physician providing your prostate cancer care. I would hope that the only reason you were moved to enzalutamide/Xtandi so early in your treatment was because your treating physician wanted another body for the trail. The plus in doing so likely meant you did not have to pay for the medication, though doesn’t Australia have a national health service wherein you do not have to pay in any event? I would see that under normal circumstances recognizing your known metastasis and Gleason Score of 9, that the GnRH analog diphereline/Triptorelin embonate to shut down testicular production of testosterone, along with the antiandrogen bicalutamide (generic of Casodex) to block androgen receptors from testosterone access, as well as the 5Alpha Reductase (5AR) inhibitor dutasteride/Avodart to inhibit any testosterone that might still access the nucleus of cancer cells from converting to the more powerful stimulant to prostate cancer cell growth and proliferation would be the initial androgen deprivation therapy prescribed (aka ADT3). Usually enzalutamide is reserved for use when these medications are showing evidence of failure. Since I have never heard of Consudex, I am presuming you may have meant Casodex. There are recent protocols that have been successful for long term management wherein both ADT medications as well as a series of chemotherapy with docetaxel/Taxotere are prescribed early on, with a return to just the ADT on completion of the docetaxel/Taxotere series. I would be interested in the intended protocol your treating physician has planned on completion of the enzalutamide trial. I expect while in the trial you are not permitted to be prescribed any other medications. If after the trial you are returned to the androgen medications identified in the last paragraph, the reasoning of this protocol is explained in these two papers: TRIPLE HORMONAL BLOCKADE:* http://tinyurl.com/3ulagd2 The Importance of 5Alpha Reductase Inhibitors: http://tinyurl.com/74bkzam In view of your known bone mets, I would expect at some time in the not too distant future you should be prescribed either Zometa/zoledronic acid or Xgeva/denosumab – or at least the less strong Prolia/denosumab to address the bone issue. If this is being considered, it is important to get all dental work completed since once on these medications it is also important to not have any dental work that requires tooth extractions or root canals that may have an impact on the jawbone since those procedures may bring about osteonecrosis of the jaw (ONJ). Too many physicians fail to advise their patients of this dental importance before starting these medications. Also, in view of your known metastasis, you should begin a bone supplement to aid in strengthening and controlling this bone issue. I highly recommend the following formula developed by Medical Oncologist Stephen Strum, a specialist specifically in research and treatment of recurring and advanced prostate cancer since 1983, wherein when you open you will note that the important products in bone supplementation and general health that are part of the make-up of this formula: DR. STRUM’S INTENSIVE BONE FORMULA http://tinyurl.com/ovnhbj5 It is unlikely there will be any “removal” of the “metastatic deposit.” Metastasis is more brought under control/management rather than made to disappear, though there have been rare cases where very early bone metastasis no longer show up in imaging following treatment. With a future blood draw, ask your physician to include checking your Prolactin level. The important reasoning is explained here: http://tinyurl.com/7w5omeo You are likely experiencing Erectile Dysfunction in view of the ADT medications. This paper explains how to deal with this problem: Erectile Dysfunction; http://tinyurl.com/3oz7u8l This next paper should also be read by your spouse/partner to better understand what you may be experiencing: Intimacy Challenged by Surgery, Radiation, or ADT: http://tinyurl.com/39q2k3a This is enough to have you pretty knowledgeable regarding your current status, what to expect from treatment, and what you, yourself, can do to counter or improve any occurrences. Finally, if interested in my prostate cancer, advocacy, and mentoring background, (my “credentials” if you may) please visit the following www.theprostateadvocate.com where you can also click on the menu word "Observations" and access over 200 papers I have either authored, compiled, or posted from medical friends regarding prostate cancer, recurring prostate cancer, treatment options, treatment of the side effects that often accompany most all treatment options, and more. Always as close as the other end of your computer to help address any prostate cancer concerns. "What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others." Charles (Chuck) Maack - Prostate Cancer Patient/Activist/Mentor (A mentor should be someone who offers courtesy, professionalism, respect, wisdom, knowledge, and support to help you achieve your goals; would that I succeed) Recipient 2008 Us TOO Intl., Inc., Prostate Education & Support Network “Edward C. Kaps Hope Award” Recipient 2012 Prostate Cancer Research Institute (PCRI) “Harry Pinchot Award” Email: maack1@cox.net My website "Observations" http://www.theprostateadvocate.com/observations.html Link to comment Share on other sites More sharing options...
Paul Edwards Posted June 30, 2015 Share Posted June 30, 2015 Hi Nevy A PSA of 0.01! No wonder Dr Cuff is pleased. How long will your PSA remain low? Until your cancer becomes resistant to enzalutamide and diphereline. How long will it take for the cancer to become resistant? It’s hard to tell. The 5 year survival rate for Australian men with prostate cancer is about 94%. This means that the chances of you being around in 5 years time are very high. Jim did a post a few years ago about “how long will I last”. Click here to read it. Some men on hormone therapy go for 15 or 20 years before they become resistant. You’ve got the added advantage that you’re on enzalutamide. We know that enzalutamide prolongs overall survival. But it’s a relatively new drug and don’t know exactly how much longer. They’re still doing clinical trials. All the time lot of new drugs and treatments are being developed. The future now for men diagnosed with advanced prostate cancer is vastly better than 5 years ago. In 5 year's time it will be even better still.. As part of your clinical trial, it is likely at a some stage they will do more scans and these will show what effect the drugs have had on the metastatic deposit. I want to make some comments on what Chuck has said. Chuck, at present enzalutamide is only available on the Australian Pharmaceutical Benefits Scheme after chemotherapy. Chuck suggests that Nevy should be on ADT3 (Triple Hormonal Blockade). Even in the capital cities of Australia (let alone Northern Queensland where Nevy lives) doctors who use ADT3 are very rare. It’s very hard to get doctors who’ll prescribe Avodart. Whilst Chuck states that “Usually enzalutamide is reserved for use when these medications are showing evidence of failure”, the use of enzalutamide and abiraterone is becoming more common before men become castrate resistant. At the present time there is no hard evidence or consensus as to the best sequencing of the various drugs for men with advanced prostate cancer. I agree with Chuck that it’s important to make sure that your bones are strong. A bone supplement is important. Whilst Dr Strum’s formula is good, it has the disadvantage of being fairly expensive and requires you to take 10 tablets a day. You'll probably also need a Vitamin D supplement. Exercise is very important for bone strength as well as general health. You'll find lots of posts about exercise in the forum. Link to comment Share on other sites More sharing options...
alanbarlee Posted June 30, 2015 Share Posted June 30, 2015 G'day Nevy (and Chuck), Welcome to the Forum. I think your doc was spot on in getting you enrolled to the enzalutamide (Xtandi) trial while the opportunity was available. This drug is a 'super' version of the traditional anti-androgen Cosudex (bicalutamide / Casodex in the USA), and inhibits testeosterone (the hormone that feeds prostate cancer), which acts at a number of levels. Diphereline (or Trelstar) / triptorelin) also acts to inhibit testosterone production, but via the pituitary gland, in a similar way to Zoladex (goserelin) and Lucrin (luprorelin). These two classes of drug are commonly used together - but since Xtandi used pre-chemo is not yet on the subsidised PBS listing in Australia, I think you're lucky to have access to one of the cutting edge drug combinations, as well as top-shelf monitoring - especially while the metastasis is apparently 'oligo', i.e. minimal number and minimal mutation, both of which equate to better treatability. There are additional possibilities if you do happen to have recurrence down the track. There's the new and equally successful drug Zytiga (abiraterone), which blocks other testosterone synthesis pathways, and is on the PBS listing for post-chemo use (hopefully with likely listing for pre-chemo use before too long): however, at present you mightn't have PBS access to both Zytiga and Xtandi unless there's an exception for having used Xtandi in the context of a trial (good question for your docs). There's 'SABR' (stereotactic radiation), which very precisely targets PET/CT-imaged bone or node mets with high-dose radiation. Taxotere (zoledronic acid) chemotherapy is increasingly being used with great effect at an early stage in treatment, in conjunction with androgen deprivation therapy ADT), with few additional side effects in most patients. Immunotherapy is a rapidly evolving treatment, which is most effective when administered while the tumour load is low. (Keytruda (pembrolizumab) has just been added to the PBS listing for melanoma, and it and a number of related products are currently in trials for advanced prostate cancer. I support Chuck's suggestion of Avodart (dutasteride - 5 AR inhibitor), which blocks the conversion of testosterone to the dihydro form utilised by prostate cancer cells. You would need to discuss this with your docs once you're no longer bound by the trial protocol - but it is a useful additional blocking mechanism. You are clearly n a good place with a rapid and barely detectable PSA response, and with imaging likely to follow to confirm the effectiveness of your current treatment. Don't forget to help things along with a good program of resistance exercises (along with calcium, vitamin D3 and fish oil suppements) and periodic DEXA scans to protect and monitor bone mineral density, and to prevent / minimise muscle and cognitive losses. Good luck - and keep us posted! Alan B Link to comment Share on other sites More sharing options...
Charles (Chuck) Maack Posted June 30, 2015 Share Posted June 30, 2015 Me again, As regard's Paul's post: Dr. Strum's bone formula, though appearing expensive, is actually not that expensive when you take note of the ingrediant included - Potassium, Magnesium, Calcium, Boron, Vitamin K2, and Vitamin D3 all in the appropriate dose for most effectiveness. Add up the cost of purchasing each of these ingredients separately and the "expense" is ot so expensive after all. The suggested ADT3 is to begin when the trial for Nevy is concluded. I explain why this protocol is recommended and if physicians would do their due diligence and research, they would, hopefully, recognize the important role of a 5AR inhibitor when ADT becomes the primary form of treatment. In the U.S. the use of enzalutamide and abiraterone requires known presence of metastases before approved for prescribing when men become hormone resistant. We are hoping that one day soon this prescribing will become available at the point the patient is becoming hormone refractory without requiring "metastasis" as a prerequisite. In view of the expense of these medications, the more often prescribing of ADT medications are followed and continued until such time as the patients prostate cancer becomes hormone refractory. Alan, you only made "one" error: The chemotherapy medication Taxtotere is docetaxel, not zoledronic aciid. Zoledronic acid is the generic for Zometa prescribed for bone issues. Of most importance is that we are all in this together trying to provide newly diagnosed men like Nevy, or those with recurring disease, information sufficient to educate them wherein they can play a dual role with their treating physician in making the right decisions for treatment, rather than simply "following the doctor's orders" which we have found too often have not been the most appropriate. Link to comment Share on other sites More sharing options...
Nevy Posted July 1, 2015 Author Share Posted July 1, 2015 Wow. Thanks for the response as I am still working I will study this information over the coming weekend as I mentioned I feel fine and Have no notable side effects and still lead a fairly normal lifestyle I will indevour to keep all informed Link to comment Share on other sites More sharing options...
Nevy Posted August 26, 2015 Author Share Posted August 26, 2015 Latest PSA score is.027 and three monthly visits to PA Brisbane so far so good still feeling pretty good no noticeable side effects don't feel any pain or discomfort from my ( metastatic deposit in left iliac bone) take vitamin D and fish oil tablets and always start day with a juice. ( Carrot ,spinach ,turmeric apricot kernels ,grapes ,and any uther fruits around) not sure when next bone scan etc will be but keep hoping drugs etc are doing something towards shrinking or killing off this problem I am always keen to see how low my PSA levels will go and how long they remain low Link to comment Share on other sites More sharing options...
Charles (Chuck) Maack Posted August 26, 2015 Share Posted August 26, 2015 Nevy, are you still in the Enzalutamide trial? Any other medications? Link to comment Share on other sites More sharing options...
Nevy Posted August 27, 2015 Author Share Posted August 27, 2015 Yes still on the trial enzalutamite with3monthly diphereline injections Link to comment Share on other sites More sharing options...
Nevy Posted August 28, 2015 Author Share Posted August 28, 2015 Whoops just realised my original PSA score decimal place was wrong total PSA readings as following 15/9/14 -6.7. 27/11/14 -7.9 30/03/15. - 5.2 (before Enzalutamide etc). 19/05/15. 0.38 19/06/15. 0.12. 10/08/15. 0.029 Link to comment Share on other sites More sharing options...
Nevy Posted November 20, 2015 Author Share Posted November 20, 2015 Hi all just a quick update. Still going well. Traveling to Brisbane(P A hospital) every 3 months as per drug trial still working full time still feeling fairly good. Latest PSA <0.01. Still on 3 monthly Zoladex inj +dailyEnzalutamide capsules no real notable side effect though do get tired and by end of week feel older than my 63years watching my diet still start day with super juice(magic bullet) and diabetes readings pretty good hope things continue. Cheers Link to comment Share on other sites More sharing options...
Paul Edwards Posted November 20, 2015 Share Posted November 20, 2015 Great news - long may it continue! Thanks for the update, Nevy. Link to comment Share on other sites More sharing options...
Kezza2 Posted November 20, 2015 Share Posted November 20, 2015 Great to hear Nevy is doing so well, and that enzalutimide is so effective. Hopefully my next drug. Link to comment Share on other sites More sharing options...
Nevy Posted February 4, 2016 Author Share Posted February 4, 2016 Hi all again just back from Brisbane on three monthly drug trial and latest PSA readings less than 0.008 so I am really happy Still feeling pretty good though starting to notice hot flushes and tiredness still working full time still taking my morning juice and keep trying different ingreadients that are cancer fighters Link to comment Share on other sites More sharing options...
Nevy Posted July 23, 2016 Author Share Posted July 23, 2016 Hi all just back from Brisbane drug trial all still going well latest PSA 0.008 where it has remained for last six months or so still feeling pretty good still working full time doctor happy hope it continues for long time Link to comment Share on other sites More sharing options...
Kezza2 Posted July 24, 2016 Share Posted July 24, 2016 G'day Nevy, Glad to hear you are doing so well on the trial. Just to compare notes, I am on an abiraterone trial at PA as well, and Dr Cuff is pretty happy with my results too, although not as dramatic as yours. My PSA at commencement 6 months ago was 5.9, but I had been on androgen deprivation (Lucrin) for 15 years before it failed and I was faced with chemo before being accepted into the trial of abiraterone plus apelutimide or placebo. Now 6 months in my PSA is below 1.0 and still falling, and my only concern is my blood pressure which has always been good but now is hovering around 180 over 100 I look forward to hearing about your results in another 3 months Link to comment Share on other sites More sharing options...
Nevy Posted October 13, 2016 Author Share Posted October 13, 2016 Hi all just back from Brisbane again(yesterday) and PSA still less than 0.008 Dr Cuff on Leave but dr ? Happy with my progress nine months less than 0.008 has to be good still feeling pretty good still working full time still on enzalutamide drug trial 4 capsules (40 mg) daily with 3 monthly Zoladex 10.8mg implant Tiredness ,hot flushes about the only side effects still doing daily juices (ginger carrots spinach fresh fruits and anything else that reads well at the time) always on the lookout for anything new . Link to comment Share on other sites More sharing options...
Kezza2 Posted October 17, 2016 Share Posted October 17, 2016 Hi Nevy, glad to hear everything still good. You probably saw Dr Elizabeth McCafrey at PA. Just a question - are they doing any scans on you ?? I get bone and CT scans every three months on the abiraterone trial, because my continuation on the drug depends on scans showing reducing mets. So far, the tumors and the bone mets have reduced in size by about 30%, and I am up for the next set of scans on 7th November. Happy days !!! Link to comment Share on other sites More sharing options...
Nevy Posted October 19, 2016 Author Share Posted October 19, 2016 Hi Kezza the dr I saw was a young Chinese girl and nice and friendly She let on that I was doing better than most on the trial as have Dr Cuff with a bit of prodding as for bone and ct scans I haven't had any since I started I have been meaning to ask if and when I get more and assume that as my PSA readings are so low that they aren't too worried. I apparently only have a deposit in left iliac bone and often worry how that is going good to see your tumours reducing. Cheers Link to comment Share on other sites More sharing options...
Nevy Posted June 5, 2017 Author Share Posted June 5, 2017 Just a quick update still going to Brisbane every 3 months from Rockhampton on drug trial still 0.008 psa still feeling alright though really feeling my age(65) still working full time as fitter at Aurizon rail w shops but not for too much longer as w/shops closing within 12 months tiredness and occasionally hot flushes plus aches and pains been on enzalutimite /zoladex since march 2015 hope it continues Link to comment Share on other sites More sharing options...
Nevy Posted October 29, 2017 Author Share Posted October 29, 2017 Quick update still going to Brisbane every 3months from Rockhampton psa 0.01 up from less than 0.008 they say no big deal feeling pretty good though fatigue a bit of problem still working full time probably till end of the year hope it continues Link to comment Share on other sites More sharing options...
Kezza2 Posted October 29, 2017 Share Posted October 29, 2017 G'day Nevy, glad to hear you are still going well. I have just passed 2 years on my trial too, abiraterone + or - apelutimide and all still going well. Psa stable around 2.6 and both CT and Bone Scans still good. I admire your still working - I couldn't do it, I need my nanna nap after lunch. Long may we both continue. Link to comment Share on other sites More sharing options...
Nevy Posted July 21, 2018 Author Share Posted July 21, 2018 Quick update back from Brisbane Monday all going well psa still less than 0.008 finally finished work feeling pretty good fatigue the main issue falling asleep watching tv the norm now still on enzalutimide and. Zoladex hope it continues Link to comment Share on other sites More sharing options...
Nevy Posted November 8, 2018 Author Share Posted November 8, 2018 Back from Brisbane couple weeks ago for three monthly check up PSA still less than 0.008 still feeling pretty good enzalutime still working dr cuff reconds it is a good drug and all going well for the drug trial not experiencing much in the way of side affects fatigue and occasional hot flushes so fingers crossed Link to comment Share on other sites More sharing options...
Nev Black Posted November 8, 2018 Share Posted November 8, 2018 Hi Nevy May the good news continue for you with Enzalutamide. Thanks for the update. Appreciated. I have been on Eligard, continuously, since April 2011. PSA less than 0.008 at last blood test 3 months ago. It is great to see yet another man within the group having a good run with one of the relatively new drugs. Keep busy and enjoy retirement. Best wishes Nev Link to comment Share on other sites More sharing options...
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