Hey guys,
I recently had PSA test and it came in at 1.7 which is up from 0.69 in early August. My nadir was 0.2 in September 2016. I had one 3 month zoladex implant in may 2016 and then went off until Feb 2017 when PSA rose to 3 then I went back on and have kept up 3 monthly implants. I had Docetaxel from March to June. I'm not happy PSA is now rising with castrate level of testosterone. I know Abiraterone and enzalutamide are in my future, but I'm reaching out for thoughts and comments.
I've moved on to Abiraterone 4 months ago with great success and no additional side effects at all after being on Lupron for 18 months.
I think with your young age and healthy lifestyle, it'll be a great benefit to you. This could be an easy solution that will keep your psa down for a few years while new treatments are being trialed. Now that you're considered castrate resistant, I assume the drug will be available to you in Perth?
Andrew
Hi Andrew, thanks. Yes, it's a setback, but I still hope to be hear for a wile yet. Yes, the drug is available to me in PERTH. While hormone sensitive I have to pay for it myself, but once castrate resistant its available to me for a very low cost on out PBS subsidised medications scheme.
Paul,
Assuming the next step is Abiraterone, you might add:
- Casodex
- Avodart
- a statin
- Metformin
Best, -Patrick
Thanks for your input Patrick, you're such a wealth of knowledge. Do you want to take over from my oncologist?.
I spoke to my primary doctor yesterday about metformin and he came to the conclusion, from his own investigations that metformin has some preventative qualities but was of no benefit once you have PCa, but that's not what I've read around this forum, mostly from your work. I plan to put together an evidence pack and go back to him. I'm already on simvastatin 20mg, but I will see about adding casodex and advodart (edited from Advocacy - damn predictive text). My MO is very inflexible, to the point of being pig-headed, and completely dismissed me when I asked about ADT3, but I'll either get her to change her mind or switch to a more open minded oncologist, if I can find one. Thanks again.
Paul,
Here is the paper that should convince everyone of efficacy. 2,000mg Metformin daily in CRPC cases:
ncbi.nlm.nih.gov/pubmed/244...
Your Simvastatin dose is low at 20mg. I am on the max U.S. dose of 40mg, but 80mg is still available elsewhere.
Best, _atrick
Pj, I just want to second Paulofaus about the very valuable knowledge and references you contribute. We are very fortunate to have you on our "team." Thanks
Hello Paul,
I struggled and found a receptive clinical oncologist after bad experiences with surgeons and radiation oncologists who had attitude and seemed to know too much or too little. Am now on 500mg twice a day in addition to x3 Estrogen patches change every 3.5 days no adverse effects from either and PSA dropped from 12 to now at 1.6.
Below some articles that may be useful on Metformin and also on Noscapine which I plan to start as soon as my friends return from Spain with a supply.
Best of luck
Peter
Metformin -all cancers
harvardprostateknowledge.or...
webmd.com/prostate-cancer/n...
integrativeoncology-essenti...
ascopubs.org/doi/abs/10.120...
mdanderson.org/publications...
dailymail.co.uk/health/arti...
Noscapine-all cancers
cancerx.wordpress.com/2009/...
awaremed.com/noscapine-cancer/
cancercompass.com/message-b...
cancerdefeated.com/newslett...
ncbi.nlm.nih.gov/pmc/articl...
cancerres.aacrjournals.org/...
dailymail.co.uk/health/arti...
I first came across Noscapine about 15 years ago. I have not used it yet. It is in my pocket for future use, if need be.
Let me know your experience with the drug.
Rich
Thanks Peter, very much appreciated.
Stampede Arm K, trialing metformin 1x @850mg/day, escalating to 2x/day, opened in the UK on Monday 05-Sep-2016. STAMPEDE continues to roll on.
It looks like Arm K includes radiotherapy. I am not sure, then, of who would be eligible for Stampede. (Originally, I thought it was newly diagnoses prostate cancer, metastatic so not candidates for surgery. In the US, this would mean not candidates for RT, as well. ??)
Switch oncologists. The last thing you need is to have to fight for your care or feel like you're not being heard.
Regarding your main post -- moving into castration-resistant is a troublesome moment in the cancer fight. I can just tell you that my husband has been on Xtandi (enzalutamide) for 2 years and has done really well on it. His PSA is just starting to creep up but the consulting oncologist at UCSF that we see 1-2x/year says to keep on it a bit longer so we're not yet at the next crossroads. Good wishes to you with your treatment.
Thanks for that. I would switch Oncologists in a heart beat, but in a relatively small town like Perth, it's not easy to find a better alternative.
I can relate. We are in Hawai`i. A bit better but still challenges getting adequate care. It was not easy for us to switch from our first guy because there is only *one* oncology group and they don't like people to switch doctors (???) but we figured a way to get it done.
Is there any way you can consult with someone at a more major place? We fly to San Francisco 1-2x / year to see an expert at UCSF. Our Med Onc here is totally supportive of the second opinions, and the additional info from a prostate specialist. You can explain to your oncologist that you are seeing more of a specialist. I wonder if some of the bigger cancer centers in Australia might have a phone-in option or something? There are so many remote areas.
Good luck with this. But do realize that castration resistant is not the end. Not only has hubby been on Xtandi for 2 years -- he just rode 100 miles (imperial miles, not km!) a couple of weeks ago on his bike.
Paul, I’m in Perth also, having had aggressive PC mestasised - since had 2 years on Lucrin and now also on enzalutimide. I note your oncologist comment and I highly recommend Simon Troon at Hollywood clinic. Mark
Patrick,
What metformin daily dosage extended the duration Of Zytiga in the clinical trail?
Rich
Rich,
I'm having trouble finding the paper.
-Patrick
Let me know when you find it. I have confidence in you, that you will find it.
Rich
The Metformin dose is 2000 mg for both xtandi and zytiga
cancertherapyadvisor.com/aa...
Gus, thank you for the effort. I read this article before, it doesn't give the daily dose for metformin.
Rich
Patrick:
Is the idea of Abiraterone to replace Lupron injections? What is the daily dosage, 500 mg once a day?
Hi Billy,
Lupron specifically targets testosterone [T] produced by the gonads, whereas Abiraterone acetate [AA] targets CYP17A1, which is required for T production anywhere in the body (gonads, adrenals & even PCa cells). So, in theory, there is no need to continue Lupron. But I don't know how it is actually being used.
Normal dosage (I believe): "AA (1,000 mg daily) with prednisone (5 mg twice daily)."
A couple of studies with AA + prednisone as monotherapy:
ncbi.nlm.nih.gov/pubmed/251...
ncbi.nlm.nih.gov/pubmed/201...
-Patrick
Paul, I am sorry to hear that, I think you have a lot of things left, I like Patricks suggestion. all the best,
Dan
Paul
I had a 2 point bump while on casodex and zolodex 5 months after dx , just before snuffy myers put me on triple dose casodex and knocked it back down.,so maybe I was CR then, or according to Gus guidelines it would appear I always was, as I never reached UD
My time to original CRPC is questionable because I started casodex early, also because I did not react on small bumps and many time saw it go up a bit only to come down a bit on another test. I was on zolodex for almost 7 years till I started Z and X. With recent study on advantage of early zytiga, I think you would still qualify as early.
These are rough numbers , but mostly accurate. I was first on just zolodex, for 3 months dropped psa from 148 to 10, I added casodex, and avodart ,after reading books by strum and myers. 5 months after starting zolodex and 2 months of casodex, I had a 2 point psa bump. Myers put me on triple casodex 5 months after original dx on the one time I saw him, caused liver numbers to rise but psa dropped to 6 ,went to Dana, they switched me to estrogen patches to let my liver recover, climera estradiol patches one new .1mg patch every day 6 out of 7 days, leaving them on for 7 days( I added this to all treatmens when they began to fail for additional response, after 4 times I had a withdrawl response the last time indicating to me I was done with estrogen) lowerd my psa to its nadir of 3 ,when my liver recovered in 3 months I i started nilandron , which also held psa stable until 3 years out from initial treatment ,it sarted to rise above 5 fluctuating to 6 , so we added Ketoconazole,which worked well for 2 years, when My psa had slowly risen to 15 ,we switched to zytiga, I think I got a 2 years from zytiga, and rode it out till psa hit around 30. Then I added xtandi to the zytiga,(zytiga and xtandi have different mechanisms of action) With this there was no need to continue zolodex as these two drugs produce castrate T. I got 3 plus years out of that and rode it out to a psa of 95 before starting chemo, In hindsight it may have been prudent to start chemo earlier, I guess I was just afraid of side effects, in particular I had an Friend who went into very bed septic shock with docetaxol, and that made me nerveous. I am assuming your next step is Abiraterone, if you could get it approved, and that would be hitting it hard early , hopefull sending you back to Undetectable for years. We are all here for you,keep us posted
Dan
A friend of mine with advanced cancer had keytruda after rising PSA and failure to tolerate taxotere. Too soon to report outcome.
Thanks Ron.
Hi Paul so to hear but sincerely hope you keep finding the right stuff on here to keep kicking it, btw how many different HT drugs are there i was under the impression there are a few, I have only had Zolodex.
Take care m8
With a low PSA, you are in a good position to start other therapies when necessary. Question why didn't your Dr. start you on Zytiga vs. Doc.? I was on Z for 5 years and now just started Xtandi--avoided Doc., so far PSA now 16
Hi Paul, nobody speaks about Cabazitaxel/Jevtana? Second line chemotheraphy? Despite being same class of Taxotere there is not often cross resistence. In my case it was unuseful and I suspendend it after 3 cycles because of rising of PSA, but it could be an option.
Always best wishes,
Enzo
Hi Enzo, yes, my MO has floated it as an option. I am just getting back to feeling normal after 4 months on Docetaxel, which seems to have done very little, so I am reluctant to go for another heavy-duty chemotherapy while I have other options. Cheers Paul.
Try the abarateron. My PSA was 2.1 when I went on it. Five months later it was undetectable and has remained there for a year. Abarateron is some real good shit. 😜
Yes, I think that is true for hormone sensitive PCa, small-cell, to my knowledge is not hormone sensitive and needs a different type of attack.
Abiraterone + ADT feedback please
Not so easy, not too bad
advanced prostate cancer - I'm new here and need some advice
Hi: 
