Some time ago I discovered this particular forum and have become deeply impressed by its brain trust, which, in many ways, has helped me immensely to decode Pca language, approaches to treatments, etc. that, up until not too long ago, were entirely foreign to me.
Thanking you all for your contribution to make it possible for someone like me to come to terms with this somewhat precarious affliction. I plan to follow up with another post within the next few days to share my story and related thoughts - p.s. - did complete my bio as a way of introduction. Wishing you all the very best with your various journeys!
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ChrisNZ
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Welcome aboard Chris. This is a knowledgeable and caring group. You will learn a ton and no doubt meet others that have a similar journey as yours. I came over from the PCa subreddit. Since it appears my journey will be chronic, I’ll be here for awhile.
Many thanks for your 'welcome' note duckcalldan and here is to wishing you will continue to be 'on board' sharing your experience, many years from now!
Thank you for your advice GP24! Currently I am taking advantage of New Zealand's public purse. Goserelin is funded here but Zytiga, since I am still castration naive will cost $5000 NZD monthly. It is funded only when one turns castrate resistant. Later today I plan to reply to Tall_Allen's message which, if it is of interest, will give you a clearer picture of my situation and possible concerns.
Your situation Chris is the same as on the 'mainland'. None of the ARIS's are available under Medicare here. Abi goes for $AU3800 mth if you want to buy it off label. Even when getting a repeat of a script when castrate resistant involves something similar to the 'Spanish Inquisition' for the MO. Lengthy phone contact with the relevant government authority each time. Beggars belief for a country whose history of PC research and treatment is some of the best on offer especially when all the research, as many have pointed out in responses to your post, points towards the benefit of adding an ARI to ADT.
No doubt you'll find invaluable suggestions, information and advice on this site especially from MateoBeach amongst others. Hope things work out well and my very best wishes to you for a good outcome.
It certainly seems to be a sad situation and a bit of a let down having paid taxes all of ones working life! Perhaps we should 'stand on a soapbox' one more time......... All the best to you from NZ
I totally concur with your notion and the link provided in your message. However, my main concern is the effect that docetaxel and, or, abiraterone may have on lungs as I do suffer from emphysema. I understand that excercise is paramount to coping with Pca treatment but suspect that chemo, etc., may have an adverse affect on lung function which I fear may cause quality of life to become all but a distant memory!?
Both my RO and MO have been somewhat sketchy re advice so I am hoping to learn by tapping into the fount of knowledge evident within this forum.
'Pneumonites', seems not a very common side effect and possibly one should not be overtly concerned about the odds of contracting it? chatgpt.com/c/670b2de3-1460...
Thanks so much for the link babychi, most interesting indeed!
I believe that one can acquire a month's supply of arbiraterone ex India for approx. 120 USD. something I hope to verify tomorrow - obviously one will need to research its producer and stated/ perceived quality.
re Abiraterone - my MO advised me the following: importing medicines from overseas is legal but I cannot guarantee the quality of medicines, or the absence of contaminants. I do not recommend sourcing your medicine this way, but if you would strongly like to then I will continue to supervise.
It can be sourced from an Indian Pharma named Cipla - cost per month for 1000 mg approx. USD 160 or 250 mg with food USD 98. Shipping 50 USD
that is a tough Situation Chris. So you have advanced disease in the pelvis: prostate and extra prostatic extension and seminal vesicle invasion. Plus there are mets in pelvic nodes and sites of bone metastasis you mentioned. Are these just individual sites in the femur, pelvis and spine, or are they more numerous? Targeting all of the sites of disease can be beneficial if they are few in number ( oligometastatic). So you could have external beam radiation treatment to the prostate and prostate bed including the seminal vesicles. (Either IMRT Malone or IMRT supported by brachytherapy, probably High Dose Rate (HDR). Then combine this with targeted radiation to the know Few bone mets. The entire pelvic lymph node fields are typically treated in such salvage radiation therapy. You will need to consult a good radiation oncologist to see if this is applicable for you.
Otherwise the Triplet therapy would be your best path forward. Using ADT drug to eliminate most testosterone and combining it with an ARSI (Androgen Reseptors Signaling Inhibitors). The choices here include enzalutamide, apalutamide , darolutamide or Abiraterone plus prednisone. That constitutes the doublet and works much better than ADT alone. The third element of Triple therapy is a Course of a taxane chemotherapy, Typically docetaxel in 6 cycles at 3 week intervals, then you stop it. This regimen cannot be expected to cure the cancer, but beats it down and impairs its growth and progress providing the best proven survival benefit at this time.
Thank you for your considered and clear message, Paul M/B
I read your bio and marveled at your 17 year journey ......! 2 months into my goserelin treatment I am trying hard to learn and come to terms with the options presented to me by my RO and MO. I am led to believe that hitting it hard right away is the best way to go but, as I mentioned to Tall_Allen, I need to consider the state of my dodgy 76 year old lungs ( my profession entailed the use of all sorts of materials now deemed hazards to ones health ) and the stress whatever treatment may have on my heart. Radiation may yet be the best option!?
Thanks again, wishing you all the best with your journey.
Thanks Jp2sea - yes, good advice! I consider it yet another chapter in my life and it is certainly comforting to know that I am not alone thanks to the support I have already received from members of this forum
Kia Ora from the B.O.P NZ Chris !I follow this wonderful forum every day , and relate information to my husband. He is 76 , 3 years into the journey and castrate sensitive . Radiation wasn’t an option at diagnosis so started triplet therapy , funding Zytiga himself. Excellent results and readings still undetectable.Also looked at the option of purchasing drugs offshore but was discouraged to do so ! There are some amazing , helpful , compassionate and funny individuals on this forum , Tall Allen is extremely informative and well read , as are many others.I wish you all the best , keep your spirits up , the sun is shining this morning 🌞
Thank you Raebill. This is indeed a wonderful forum and I am overwhelmed by the pertinent response(s) to my intro received within such a short space of time. I am also 76 but ignored the signs and symptoms of Pca for many years - however, watchful waiting finally caught up with me. Warm regards, from Central Otago.
p.s. my MO is Dr Gwen Pinches and the RO's name is Dr David Anderson - both based in Dunedin
I have come across a generic version of Abiraterone which has been approved by our Medsafe. It is only $NZ 1150 per month and I have an oncologist appointment to have this prescribed. This is the true cost to me without insurance or Pharmac funding.It is called Yonsa and there is a version Yonsa Pmed which has 2 x 4 mg prednisone in the same package.
See my bio but I am also a lifetime asthmatic so our lungs are probably comparable. I could not afford Zytiga at over $NZ 5,000 per month. Currently I am castrate sensitive after 2 years, but waiting until I am castrate resistant has always seemed crazy. I was advised not to have chemo as my overall health was not great.
it seems entirely counter productive for the NZ Health System to fund Abiraterone only once one becomes castrate resistant - a bit like the ambulance at the bottom of the cliff. Have you considered CIPLA via Prissm Pharma India, i.e. abiraterone - 250 mg with food (as in my reply to babychi?)
Yes, me too, "still crazy after all these years" - instinct tells me to stick with ADT without the rest of the menu......., brain doesn't agree. Wishing you many more years of life to enjoy and look forward to learning more about your progress in the near and distant future. Chris
Hi Chris.I am also from NZ. I am on triplet therapy. I use Zytiga at 1 pill a day. It costs me $7500 a year. All is well with me apart from some minor side effects from the medication. I have been diagnosed with metastatic prostate cancer just over 2 years now. Hope all goes well with you and best wishes.
Hi Tulip, thanks for your best wishes and, of course, likewise! It is interesting that there are quite a few of us in NZ being offered the same menu. I have now been on goserelin for about 9 weeks and it has knocked my psa from 45 to 2. Side effects have been minimal so far. I am planning to ask my MO to order some Zytiga ex India, i.e., the low dose to have with breakfast. Will explore HealthUnlocked to see if one can send a private message to its members as I'd like to establish contact with you. Met Vriendelijke Groet, Chris
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Interesting study on combination of statins and metformin in high-risk patient outcomes
Upon losing my father , some retrospect. Take what you need and leave the rest. 
Testosterone Levels and Prostate Cancer Risk - 1
Introduction
Wondering what to expect
