Good morning fellow warriors. My docetaxel adventure was without side effects but gave an ineffective response. The cabazitaxel/carboplatin combo was effective but brutal in its attack on my immune system. Having had no treatment at all while my body tries to recover, I'm currently being considered by the Peter Mac Centre in Melbourne for LU-177. If I'm accepted (and my PSMA scan shows a lot of avid cells) my treatment should start late May.
My anxiety (and it's running rampant currently) stems from the PSA scores. Currently, I'm at my zenith: 121. I still have no symptoms, but I worry about the spread of mets and the rising PSA. I feel like I'm in a race against time. Which comes first: a catastrophic decision that I'm not well enough to travel or getting the treatment up and running before anything disastrous happens?
Do any of you have any suggestions on what I could do in the short term to put the brakes on the PSA? (No idea is considered too whacky) I just feel like I need a quiet couple of weeks, and then I could travel with confidence.
Any suggestions welcomed!
Written by
CrocodileShoes
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Did you try your wife's estrogen patches ? Estrogen or phytoestrogens ( plant estrogens ) should help - evening primrose oil flaxseed oil, inositol - everything a woman would take for low estrogen - also red wine , turmeric and tofu for lunch every day
Hi. It is approved. That is, it can be prescribed, But NHS wont always give it if you have had Xtandi. However in the circumstances your oncologist might be able to make an exception, if its a stopgap. If not (and if its the best thing to do - and that I dont know) then you could get your onco or someone else to write a private prescription for abiraterone acetate. Its now off patent and would only cost a few hundred pounds max. If this is the right thing to do then it would tide you over, but like I say, I have no idea if thats the best strategy. Could luck with the possibility of LU - long way to go. Is it a trial or do you have to pay in OZ?
I have to pay, but it's much cheaper than the UK. And I can work there which should cover most of the costs. My onco won't write the prescription, and looking online 3 months is the minimum that I can order online. So, it's a risk, but I had a good initial response to Xtandi, so who knows?
PS. If you dont mind saying why did you choose OZ rather than Windsor or the Munich folk - much nearer for you and the Germans in particular are top notch on this stuff from what I read on here?
We have accommodation in Melbourne. They have the best research institute (Peter Mac Centre) and the infusions are less than half the cost here. And we have reciprocal health agreements between UK and AUS. I'm not ruling the Windsor option out, yet.
You could try Dutasteride (0.5 mg/day). It's a safe drug used primarily to treat male pattern baldness. My PSA dropped from 10 to 3.3 (70% drop) in less than 3 months! Your's could too.
It works by decreasing DHT by 95%. DHT is the form of testosterone that the prostate cancer cells actually feed off of...not testosterone itself. 10% of T is normally converted to DHT. The goal is to get DHT to about 20 ng/ml or less.
Dutasteride reduces PCa by 40%, in many large trials. The standard drop in PSA is closer to 50%. Some men don't respond to Dutasteride (as much as 30%). The only way to know is to do a 3 month trial and see what your PSA does. It also shrinks the prostate by 25-50%.
If you send me an email to janebob99@lobo.net, I will send you papers on Dutasteride. Please include a note as to what you need.
How has your side effects been with the Dutasteride 0.5mg (aka Avodart)? The reason I ask, is it's something I've been looking into and there's a famous Oncologist in Marina Del Rey, Dr. Scholz, that years ago I believe advocated it. A Dr. Snuffy Myers advocated it also. But a recent video with Scholz and Mark Moyad I watched two days ago involved them discussing the manufacturer was getting sued by patients that had long term libido loss that had not recovered long after discontinuing it (at least over a year.)
But then I thought, for isn't libido loss going to be a side effect of any ADT method and this one has a relatively lower severity? I think they were mainly referring to a patient cohort in active surveillance mode where ADT is not the SOC who were primarily using it for both hair loss and secondarily for PCa prevention. I don't think the discussion was in the context of Advanced Stage Prostate Cancer Patients.
But my understanding is compared to traditional ADT the side effect profile is a lot less severe. It's supposedly just not as effective long-term as ADT.
I think some PCa patients essentially have gone to this as a less aggressive ADT treatment to delay having to do full ADT. The missing piece of information is a long term (> 10 year) study of which I am yet to find that shows whether or not doing this to delay more potent ADT (and its side effects) puts you in a worse off situation way down the road rather than going to straight "regular" ADT. I would say the probably worse in the long run based on studies that show delaying ADT did not delay the time it takes the cancer to become castration resistant it actually decreased that time. I'm guessing it's because if you start ADT at a later point where the cancer has progressed more, it adapts and overcomes it quicker as opposed to trying to hinder with ADT when it's not as far along.
The OP is pretty far along if his PSA is > 100 so I think most MOs would say it is too late for this but at this point if I were @CrocodileShoes it's all about what is the risk/potential reward to explore novel sequences of treatment. There's a reason though there is a Standard of Care (SOC) ... because it's been shown to work where other stuff hasn't.
The person here probably most knowledgeable as far suggestions of what to consider next in CrocodileShoes 's situation is Tall_Allen
Dutasteride reduces DHT by 95% and increases T and E by 20%. So, one would expect that the loss of libido would be less on Dutasteride compared to Lupron ADT (which reduces T by 90-95%). I'm not aware of any studies that measure the loss of libido in a quantitative way, though.
Bad side effects of Dutasteride should be less than Lupron, because T and E levels are preserved (and increased) with Dutasteride.
Dutasteride monotherapy reduces PCa severity by 23-51%, depending on which study you look at. I don't know the similar number for Lupron Monotherapy. Perhaps someone can tell us what that number is?
PSA is typically reduced by 50% on average on Dutasteride monotherapy, and prostate volume is reduced by 25% or more. My PSA dropped by 70% after 3 months of Dutasteride.
Finasteride 5 mg caused dental problems such that I had to stop after a couple of months. I am wondering if there is any way of knowing whether dutasteride would cause the same problem. I guess I would have to try it. Mention of long term libido/performance effects that last long after cessation is a concern too.
Here's what ChatGPT says about Dutasteride and dental problems:
"There is limited evidence to suggest that Dutasteride, a medication primarily used to treat benign prostatic hyperplasia (BPH) and androgenetic alopecia (male-pattern hair loss), may have an impact on dental health. Dutasteride works by inhibiting the conversion of testosterone to dihydrotestosterone (DHT), which can affect various tissues in the body, including the prostate and hair follicles.
While dental problems are not commonly reported side effects of Dutasteride, some users have reported experiencing oral health issues such as dry mouth or changes in saliva consistency. Dry mouth can potentially contribute to dental problems such as tooth decay, gum disease, and oral infections due to reduced saliva production, which normally helps to clean the mouth and neutralize acids produced by bacteria."
I got the same answer when asking about finasteride and dental problems.
I developed very sensitive teeth. Sensitive to hot or cold temperatures. Before figuring out it was the finasteride I agreed to a root canal that likely wasn't necessary.
It might be worth a try to lower your calories to CRON levels (Google search "Caloric Restriction with Optimal Nutrition"). Cancer cells, especially aggressive ones, are extremely hungry and don't do too well with starvation/deprivation.
When I was first diagnosed, around my first shot of ADT I immediately started CRON and dropped my daily calories down to 1600 per day, cut out simple sugar, and focused on eating nutrient-dense foods. This was at a bodyweight of about 230lbs at the time, so it was a drastic drop. My one-man study can't say for sure that it did anything, but my PSA did drop a lot faster percentage-wise than is typical on initiation of ADT (104 to 1.4 in under 5 weeks).
Your situation is different in that your cancer's been around for a while and might be more entrenched. I also can't say that doing what I did will be safe for you, given your compromised immune system. I haven't researched whether CRON improves or depresses immunity.
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Lupron and Zytiga working, PSA 1000+ to PSA 0.02
PSA check
Real increase in PSA
my PSA has helium in it! ! ! 
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