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  1. Today
  2. Brian

    My Story - A Cautionary Tale

    It is about time that I updated my status. This taken from a post on another forum back in May 2018. "I have just had my fourth Zoladex implant and this is a summary my progress since I posted my profile. After three months my PSA had dropped to 0.5 from its previous 1.0. I was having occasional blood in my urine but was told this should settle down. At six months my PSA was 0.4. I had begun to experience pain in my left hip and my right ankle was very sensitive to warm (in the shower) water. I was still having blood in my urine. I was told that things were "still holding on". At seven months I have a stumble and jarred my left hip which caused me extreme pain. I was taken to the ER, given morphine and x-rayed . There was no break but a bone scan was advised. The bone scan showed that the metastases had grown. My GP referred me to a Radiation Oncologist. I was given five treatments of IMBR and I am now free of pain in my hip and can shower without wincing. It is a pity that they can't fix fatigue as easily. Last week my PSA was reviewed. It was back at 1.0 and I was told that Zoledex had failed. I would now have Casodex added to Zoladex and my PSA checked in two months. I asked about Zytega ot Xtandi but was told that they required special approval on the Australian Pharmaceutical Benefits Scheme as they were Chemotherapy. I didn't think they were. I will wait to see how things progressed and see my my Medical Oncologist who had advised me previously. I now will have a two month wait to see how I get on. At least Louis still gets his walks down by the creak . These are PBS requirements to receive Zytiga for $39.00 instead of $3,900.00 Castration resistant metastatic carcinoma of the prostate Clinical criteria: The treatment must be used in combination with a corticosteroid, AND The treatment must not be used in combination with chemotherapy, AND Patient must have failed treatment with docetaxel due to resistance or intolerance; OR Patient must be unsuitable for docetaxel treatment on the basis of predicted intolerance to docetaxel, AND Patient must have a WHO performance status of 2 or less, AND Patient must not receive PBS-subsidised abiraterone if progressive disease develops while on abiraterone, AND Patient must not have received prior treatment with enzalutamide; OR Patient must have developed intolerance to enzalutamide of a severity necessitating permanent treatment withdrawal." Well it is now November 2018 and things have progressed. In July my baby daughter, 56 this year, accompanied to see my urologist to review my latest PSA test. It was 0.98; my lowest ever was 0.3 and highest 1.03. My urologist saw this as a positive sign and I laughed out loud. My reading of published papers showed that the PSA test is very accurate but the readings can vary due to the patient's condition. My previous reading of 1.00 and the the new reading varied by only 2.0% which was insignificant which, in my opinion, showed that the Casodex had not worked. I was persuaded to give it three months. I also complained about soreness in my right groin. It felt like the hernia I had fixed a few years back. I was sent for a CT scan with tracer of the lower abdomen which started a chain of events which highlights the differences in the medical profession. After the scan I was called back as the "Doctor" wanted to have an ultrasound of the groin carried out. I, of course, went back to the radiologist and the ultrasound showed an enlarged lymph node which had shown up in CT scan. Incidentally the CT scan also showed that my hip mets extended right across my pelvis. I as advised to have a needle guided biopsy in a couple of days. This conflicted with my next appointment with my urologist so I phoned up to move the appointment. To my amazement I was told that the urologist had not authorized the ultrasound and did not support the new biopsy and I was to attend my next appointment. I was very upset and went to see my GP and friend of over 20 years to sort out what to do. He advised me to visit the urologist as the biopsy could be done later. Later I found out that he phoned both the urologist and radiologist to sort things out. The "Doctor" was a radiologist who failed to notify the urologist of the ultrasound but used the urologist's original authorization to conduct the test. My urologist took offense and started a flurry of communications. I attended the follow up meeting with my urologist who didn't think that the biopsy was necessary as the lymph node was almost certainty cancerous. This with the dubious PSA result and, as I was still having blood in my urine which was still causing concern as I was on blood thinners for Atrial Fibrillation , I was asked to consider stopping taking aspirin instead. I went to see my cardiologist who said it unlikely that aspirin would be any use but the use of aggressive blood thinners was not advised with bleeding tumors so an alternative treatment was advised. I am now of blood thinners as I await a Left Atrium Appendage Occlusion scheduled for December 20. I now have to worry about having a stroke as well. This Monday, November 12, I got the results of my latest PSA. It was 3.7 a nearly quadrupling in three months. It has been decided to stop Casodex and take Androcur instead until after the heart procedure before reviewing follow on treatment n January. Overnight my waterworks packed in. I was having bladder spasms every 15 minutes before passing blood. It was extremely painful and at 3.30am Tuesday morning I called an ambulance. The Paramedic gave me a Penthrox inhaler to minimize the pain but I still had spasms and passed blood on the way to the ER. We pulled over to let me stand and use a travel john three times on the journey. The ER nurse measured my urine retention as over 750ml and tried to insert a catheter without success. The ER doctor used more force and succeeded. I ended lying in a puddle of blood and urine as my bladder emptied. I was fitted with a leg bag and, after the ER doctor phoned my urologist to advise of this development, was picked up by a friend and was home by 10.00. I received a phone call from my urologist and given an appointment for Wednesday November 14. I am now scheduled for surgery on Tuesday November 20 where they will either carry out a TURP to clear the urethra blockage or insert a superpubic catheter and block off the bladder above the prostate. My tumor will continue to bleed. It has extended to the the outer sphincter muscle. Now I am having spasms every hour or so and passing blood around the catheter which appears to be cause by pressure in the bowel. I have typed this lying on a recliner chair which my most comfortable position during the day apologize for the numerous typos!
  3. Yesterday
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  5. Reminder The Melbourne Meeeting / Lunch at the Glenroy RSL is tomorrow at 12 Noon. Jim and his team - providing an essential local link between men with advanced prostate cancer.
  6. Cam

    43 with stage 4 prostate cancer

    Good advice Paul. I've fallen into a deep dark hole, but I will dig myself out.
  7. Cam

    43 with stage 4 prostate cancer

    Thanks Maffy! Hope you continue to keep the cancer in check.
  8. pauldhodson

    43 with stage 4 prostate cancer

    Try not to 'own' that life expectancy BS, they haven't go a clue. I think the mind is a powerful thing, you will become what you believe. Trust me, I know it's hard not to go to that dark place. I chatted with a guy on Facebook recently given 6 months and he's 11 years past his use by date!
  9. Maffy

    43 with stage 4 prostate cancer

    Dear Cam, I'll keep you in my prayers. Mine was like yours - very low PSA for about 3 years before it was discovered that a rare type of PCa was raging. Anyway, I'm going on to 24 months after RP (on the 21st of Nov) and 12 months after Chemo+ADT, still on ADT; next assessment on Dec 12 (always stressful times) but hopeful - PSA is still undetectable thus far. Not sure when the ADT will be off; my Onco said to keep it going for the time being. Blessings Maffy.
  10. Cam

    43 with stage 4 prostate cancer

    Sounds like a good idea Alan! Saw MO yesterday and the news wasn’t good. Put the hard word on as to his guesstimate of life exptancy based on the bad histopathology and the findings in the comprehensive cancer panel... and the fact that my cancer has progressed quickly in spite of us throwing the kitchen sink at it... and it looks like I’m here for a good time, not a long time. Started bicalutamide and have a PSMA PET/CT in a week. Going to try to enjoy a European vacation dec 11- Jan 14 then I’m assuming I’ll be put on Abiraterone and hope it lasts more than a few months. Won’t be accepting defeat just as I need to see my boys grow up and the youngest just turned 5.... but the battle is wearing me down. Cam
  11. HighCadence

    16 years with metastatic prostate cancer - latest news

    Thanks a lot Alan. Lots of helpful information and suggestions in your response. To answer some specific questions. I haven’t followed up on other PARP inhibitors yet. The plan I’d sketched out in my mind was radium 223, PSMA targeting, then immunotherapy/checkpoint inhibitors etc. But that’s been overtaken by events. On the cyberknife front, my surgeon is in communication with the radiologist who did that to try to work out what might be happening at T5 and T6. There is evidence of radiation treatment at both of those points, but it’s not clear whether or not the cancer is active there. If you’ve ever seeen these scans, grey and black areas usually means cancer, bright white is usually radiotherapy. T5 is mostly bright white, T6 is grey, T7 has a lovely big black area, but that ‘s been there for sometime and could also be a sclerotic legion i.e. where the body has put a defensive layer of bone/calcium around a problematic region to try to make things better. I’ll know more after the PET scan. I know what you mean about opioids and constipation!! Fully prepared this time round. Not looking forward to having to ween myself off the drugs again though. The surgeon thinks I’ll need them for around 6 weeks. I’m really glad that you got through your operation and will give your ideas on peripheral neuropathy a go ahead of the op. We are all warriors together. David.
  12. alanbarlee

    43 with stage 4 prostate cancer

    G'day Cam, While you're considering the next round of treatment options with your medonc / radonc team, you might want to look at having a chat with a psycho-oncologist. This is a specialty area of support which could bring you relief from the stress, anxiety and depression that is clearly hitting you hard at this stage of your journey, as it does with so many men - especially younger men. I have a friend in Melbourne who works in this area, who has guided me over the years: I strongly recommend such a referral. Best wishes, Alan
  13. alanbarlee

    16 years with metastatic prostate cancer - latest news

    G'day again David, That's a great update post that you put together - a coherent story of a difficult journey, garnished with a generous serving of positivity, optimism and courage, as was your first post. Early onset PCa (age 37) is clearly a tough animal to subdue, but your story is both informed and inspiring. Good that you found 123-radium (Xofigo) to be relatively easy to tolerate, even though its efficacy in your case was less than you were hoping for. Your comments will reassure others with bone-only mets, who should hopefully have subsidised access to this drug here in Oz early next year, after 4 years of unremitting advocacy from this Group. Your comment about 'pushing through the lethargy' caused by most PCa treatments is excellent advice. There have been ground-breaking research reports published by Rob Newton and Prue Cormie here in Oz that provide strong evidence of the importance of exercise to both the body and the mind. I mentioned in a previous post that there are a number of trials going on with promising new PARP inhibitors that are following on from olaparib (given your positive BRCA2 gene test). Did you manage to dig out anything useful there? In a similar vein, have you been able to follow up on your radonc's positive more assessment of your initial Cyberknife stereotactic radiation treatment? This 'spot welding' may limit adding to the unwanted side effect load caused the battery of drugs you've been tolerating. However, you may want to discuss the cumulative radiation exposure that Cyberknife and your previous IMRT have already imposed on the skeletal areas in question before going down the track of more RT. This may or may not also limit the feasibility of a 225-actinium-PSMA trial, which otherwise could be another good candidate in terms of efficacy and manageable side effects. Unlike the experience with melanoma, bladder cancer and non small cell lung cancer, immunotherapy for PCa has been a bit disappointing, with only 10-15% of patients showing a positive response to pembrolizumab (Keytruda). My impression is that single agent immunotherapy seems to work best with PCa that is at an earlier stage. Combination trials may be more positive, however, and such trials would be well worth considering. On your question of issues around spinal surgery, I had a 'simple' laminectomy last February, following severe, disabling lower back and sciatic pain due to sponylolysthesis (vertabral slipping) at L3 and L4, clearly visible with MRI. The neurosurgeon removed a piece of bone to deal with major narrowing of a lateral nerve channel , which produced instant and continuing relief. My recuperation was greatly helped by walking (initially with a stick), within a couple of days of the surgery, increasing to a hour per day every day for the next 6 months, followed by a return to a 3 days per week x 1 hour per day in the gym (also good for recovering a bit of lost muscle mass and minimising bone density loss from T-reducing drugs and steroids (low dose in my case - 0.5 mg/day of dexamethasone supporting Zytiga). My warning with opioids like Fentanyl and Oxicontin is the high risk of severe constipation unless accompanied by Coloxyl and Movicol. I had no warning about this, and suffered the consequences until my pharmacist put me wise. Your experience with peripheral neuropathy being a major side effect of chemotherapy (especially platin therapy, but also taxanes) is a difficult one. My thought is to try regularly stimulating the damaged nerves in your feet with alternate footbaths using hot water and ice water. I have no evidence that justifies the effectiveness or otherwise of this, but since it is unlikely to cause harm, it might be worth giving it a go. If some of the symptoms are the result of high dose or long term steroid-induced narrowing of the small blood vessels in the feet, this experiment might also help with that. (I have this latter problem, which an ultrasound test showed was not caused by restrictions in the large blood vessels in the legs). That's about all I've got, Mate - other than to wish the best possible outcome for you as you continue to resist both the disease and the treatments side effects. You are an inspiration! Cheers, Alan
  14. HighCadence

    16 years with metastatic prostate cancer - latest news

    Thanks Paul, I’m sorry to hear that. I hope you can get some treatment that will help you. Hang in there. D
  15. HighCadence

    16 years with metastatic prostate cancer - latest news

    Hi Susan, the real problems are at T7, with possible issues at T6 and T5. i hope your husband’s pain issues get resolve soon. Sounds like he’s been through a lot already. He must be very strong. David.
  16. HighCadence

    16 years with metastatic prostate cancer - latest news

    Hi admin, i will indeed - although the temptation is always to go for an “ah, f*8k it” ride down a steep hill with the wind rushing into my face! The endocrinologist has been slowLy weening me off - I had a similar problem when I was taken off too quickly when Abiraterone ended. I guess the issue now is whether or not I have to go back on during the operation etc, as he said I should restart if I was ill. I’ll check that. I think the endocrinologist said he might give me something that makes me pee more frequently, and if that doesn’t work, out me back on blood pressure tablets - i’ll check and get back to you on that too. Charts are my thing - I’m a professional ecnomist. Just glad to have worked out a way to post them. Thanks again, D
  17. Disappointed I can’t make it. I’m in SYDNEY on the weekend. Have fun and I’ll see you next time. Steve
  18. Cam

    43 with stage 4 prostate cancer

    Thanks Paul. We could certainly do with a breakthrough!!
  19. pauldhodson

    43 with stage 4 prostate cancer

    Hi Cam, Sorry to hear it. This happened to me 12 months ago. I'm still here, so try not to lose hope. The next big break through might be just around the corner. Cheers Paul.
  20. pauldhodson

    16 years with metastatic prostate cancer - latest news

    Hi David, Thanks for the update. Sorry you are going through a scary phase. I am too (my cancer has morphed into the small-cell variety). I hope your spinal surgery goes well.
  21. susan horn

    16 years with metastatic prostate cancer - latest news

    What part of spine has the mets my husband had cervicle spine surgery now lower back hurts he also has two hemi hips and rods in femors to prevent breaking if in cervicle spine don’t wait
  22. Cam

    43 with stage 4 prostate cancer

    Latest news: 21 months since diagnosis and only a couple of weeks away from my 45th birthday, it appears my cancer may have become mCRPC. Numbers are low with rises from 0.02 to 0.043 to 0.072 in a 7 week period, but depression and stress levels are very high. Really hoped that the RP, ADT, docetaxel, SBRT and ultimate orchiectomy would buy me more time before having to wade my way through the castrate resistant nightmare of options. Oh well, meeting medonc this afternoon for what will certainly be another enjoyable conversation. Cam
  23. Admin

    16 years with metastatic prostate cancer - latest news

    David I know you will be extremely careful with that spine until it's reinforced. I guess the doctor will taper down the steroids over a period of time. The tapering time I took one time (1 month taper after 14 months high dose steroid) was too short and I suffered adrenal failure. Treatment for that was steroids again, then a 5 month tapering. If your kidneys have slowed down, your doctor may suggest to be careful with regular water. I use the light colour of my pee as a guide. Your doctor will advise if too much water will be a concern. There are a number of things kidneys do not like (from too much protein to licorice), but you should wait for your doctor to tell you accurately about your kidney function level before you act on these. (My kidney score is CKD3, so it is a constant thing in my life). Great graphing, by the way. Clearest we have had in our group. Jim
  24. When I put up my last post, I expected the follow-up to be fairly straightforward - you know, radium 223 has worked a bit, but only a bit, and I’m moving onto something else/PSMA targeting/immunotherapy. But, that hasn’t really happened. The prostate cancer had other ideas. I’ll come to that, but first I want to say a little bit about the radium treatment. For me, it was fairly uncomplicated. The main side effect was lethargy - especially for the first few days after the infusion - with the feeling that you’d literally just walked into a brick wall. First time round, I decided to rest up for a few days, but, I soon found out that if you push through the lethargy - by going to the gym or similar - you actually feel much much better. So, I’ve just carried on exercising as often as possible ever since (I had my second infusion last Wednesday). Apart from that, I’ve had a bit of a temperature, a bit of bone pain, and a bit of brain fuzz at the start of the cycle, although the latter could just as easily be stress related as treatment related. So, that’s the radium. Relatively easy overall. Whilst all that was going on I decided that I needed to try again to sort out some long stranding problems that I’ve let slide for too long. There was mixed news on this front. A surgeon told me that there was nothing that could be done about the loss of nerves/muscle control in my abdomen, and that I basically just had to suck it up (my words, not his). I have to admit, I had a little cry after that one. More positive new came from an endocrinologist who worked out I wasn’t diabetic or pre diabetic, which is good, although I would like to have a reason to try some metformin. He also decided that I could produce enough cortisol on my own to be able try coming off steroids (I’d previously been diagnosed with adrenal insufficiency after years on Abiraterone with a steroid). Finally, he thinks that my continued low levels of potassium and magnesium years after ending Abi is probably a reflection of damage to the kidneys caused by Carboplatin, which I’ve had twice. I have vague memories of being warned about this before the second round of this treatment, but had completely forgotten about it. We’re not quite there yet in terms of a definitive answer, but if the latest blood test I’ve had shows I’m still low on these minerals/things haven’t changed having stopped the steroids, I will either take something to help me retain them or take something to offset their impact i.e a narrowing of blood vessels. I’m hoping this will help with the shortness of breath issues I’ve had for a while. Put all of this together, and I was feeling pretty confident about getting out on the bike again. So much so, that I put new rim tape, tubes, and tyres on my two best bikes, batteries in the power meter and charged up the bike computer. I even bought a new jersey (two sizes bigger than the last one I bought). And then the cancer had its say. To cut a long story short, my latest MRI scan suggested some new tumour growth was pressing on my spinal canal, making it thinner/narrower. The radiologists suggested I see a spinal surgeon with a view to sorting out what should happen next. So, I had a more detailed MRI of the spine yesterday, then this morning discussed the “pictures” with the surgeon who removed a bit of my spine last year. The upshot is that the new tumour/growth will have to be removed and some screws put into the spine. I’ve got a PET scan on Monday to determine if a couple of vertebra around the new tumour growth are “active” (it looks like it will be a PSMA scan but they are not sure yet). If they are active, the surgeon will take those out too. Obviously this was not what I’d expected or hoped for, and I’m dreading the after-effects of another operation. But, there is no plan B. This has to be sorted out before I get spinal cord compression. I know a cyclist who has had a similar operation, but, if anyone here has gone through it, I’d really like to know what to watch out for, things I should do before and after to help recovery etc. Apart from that, a number of people have asked to see a chart of my PSA through different treatment regimes. I’ve attached one below which cuts off the initial period of treatment - which saw my PSA dropping from around 400 to zero as the Zolodex and 2003 chemo kicks in - in order to make the variability in PSA since then easier to see I hope it helps. David.
  25. All of us are keen to help get the disease and its treatment better understood to help those who come after us. If you were working at the time you were diagnosed with prostate cancer, here is your chance. Jim Men’s Experiences and Needs in Vocational Rehabilitation, Work and Retirement after Prostate Cancer (GU Ethics Ref No: 2018/709). The Prostate Cancer Foundation of Australia and Cancer Council Queensland are committed to providing support for men who have been diagnosed with prostate cancer. To further this commitment Menzies Health Institute Queensland is supporting a team of researchers from Griffith University, Centre of Research Excellence in Prostate Cancer Survivorship, to undertake a study examining men’s experiences in relation to employment or retirement after prostate cancer diagnosis. You may be eligible for this study if you: Have been diagnosed with prostate cancer, and Were employed in any capacity (including self-employment) at the time of prostate cancer diagnosis. By taking part in this study you will be providing the researchers with greater understanding of the vocational needs of men with prostate cancer. It is likely this information will help improve support services and return to work experiences after prostate cancer. Please note that some of the information may be personal or sensitive in nature but your privacy will be safeguarded at all times (please see the information sheet at the start of the survey for more details). If at any point you become distressed by any of the questions, please contact Lifeline on 13 11 14 at any time of the day. You can also contact the project’s research team for help in seeking ongoing mental health support if required. If you agree to take part, we will ask you to complete an online survey, which should take approximately 30 minutes of your time. To access the participant information sheet, consent questions and the survey, please click or copy and paste the address below into your internet browser: https://griffithmhiq.co1.qualtrics.com/jfe/form/SV_9Y5Ns1Pg1U1QvHv If you would prefer a paper version of the survey to be mailed to you, please contact the project manager listed below. If you would prefer not to participate, please disregard this email. If you have any questions about this project please contact the Project Manager, Vanette McLennan, by phone (07) 5552 7890 or email:v.mclennan@griffith.edu.au We thank you very much in advance for your support. Yours sincerely, Vanette McLennan Principal Investigator Griffith University Menzies Health Institute Queensland Please also note, this study has gone through appropriate review via the Pathfinder Advisory Committee.
  26. Pinks

    New Diagnosis - Our story

    Thanks Chuck. I will have to check on this as this seems odd. I am glad I brought it up. May be we misunderstood the doctor. But good to know that it should be given at 12 weeks interval with a bone supplement. I will inform them right away. Thanks again ..
  27. Earlier
  28. Charles (Chuck) Maack

    New Diagnosis - Our story

    It appears we move from one concern to another for your Dad I certainly do not understand this one IV of zoledronic acid to be only "once a year!" With your Dad experiencing metastases, and the necessity of androgen deprivation medications as well as likely chemotherapy, in my research the infusion of this medication should be on a regular treatment basis as long as the metastases exists. In the past that infusion was administered as 4mg over at least a thirty minute time-frame every 4 weeks. More recently it was found in research and trial that this same 4mg could be infused every 12 weeks and be just as effective as the earlier every 4 weeks. In any event, it does not make sense to only administer this drug "once a year." Anyone going online and searching for appropriate administration of zoledronic acid for men with prostate cancer administered androgen deprivation medications will find what I have explained as the "appropriate" procedure, as well as prescribing a bone supplement. My recommendation for the most comprehensive "bone supplement" and where available is explained here: https://tinyurl.com/ovnhbj5
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