I am 63 yrs old and was diagnosed in March '23 with mHSPC, w/ multiple mets in lungs, bones and lymph glands. Began triplet therapy in April: Eligard shot every 3 months, Nubequa daily, and 6 rounds of docetaxel. SE's have been mild. I want to an alternative to continuous ADT, whether its IADT, BAT or something else, in hopes of preventing castration resistance. I live on the East Coast of U.S. I exercise a lot each day and have cleaned up my diet.
As a hormone sensitive PCa patient, where can I go for an alternative to continuous ADT? Is the Moffitt center in Florida my best option? Where else or who else might be willing to treat me? Any other suggestions?
My MO is cautious and works for a nationally recognized cancer center. I can't imagine he will support me in this effort, since most MO's don't seem to endorse this approach.
Thanks, Tom
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Forest1160
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You have become a member of a club that no one wants to belong to...
You have come to the right forum... we have a number of people here doing IADT, BAT, and AT-Adaptive Therapy--using ARPI drugs alone (abiraterone, enzalutamide, etc...) on an intermittent basis based on PSA values...
I do have a few questions -- What was your PSA at diagnosis? Did you have any genetic testing for somatic and germline DNA mutations?? What is your PSA currently??
Here is a nice forum post on BAT and Robert Gatenby at Moffitt from KocoPr:
Most MO's will advise SOC, and may not be agreeable to discuss treatment alternatives. Perhaps, some of our members will come on and advise you where they are doing their strategy that is outside of SOC and with whom...
I do IADT with my MO ( Dr Ornstein) at Cleveland Clinic, and he is slowly coming around to my way of thinking. My first time around, he wanted me to do 24 months, but was comfortable on 22 months before I took a vacation. This time around, treatment was only for 1 year... The first time, I did SBRT for my oligometastatic disease, but had to arrange it myself at UPMC with an RO. His statement at that point was, "I don't know if I would do that..." This time around, he said, " Do you want me to refer you to a Radiation Oncologist for your stereotactic radiation, or do you want to do it?" This was my second round of treatment ... Big change in a few years...
My advice--Do not settle for someone that does not listen to your desires or needs....
You are still on ADT plus darolutamide, and at this point should continue that plan... I take it you are to get a PSA in December ??
I do have three more ?-- Was your PCa found with a bone scan, or CT scan, or did you have one of the newer scans like Ga68 PSMA or Pylarify?? What has been found is that the newer scans often turn up more disease than a conventional scan.
I take it they did not do a biopsy, and found your cancer by the scans alone?? Thus, you would not have a Gleason score, and your test was a germline DNA test??
I know...a lot of ?s, but these things do matter.. I know you want to be off ADT... yes, it sucks, and we all agree... but, you have visceral disease (lungs) plus bone and lymph disease... stick with the plan is my advice....if you get to undetectable PSA, then you can discuss a break with your MO if you need it.. (too early yet)..... Another thought is to have a f/u scan and see if your disease has regressed or not, and what is left, because if you have <5 tumors on a scan, then you may be able to convince an RO to treat the remaining resistant tumors.
At this point, we wish you the best of luck on your path....
My cancer was found by a needle biopsy. Gleason score was 10. I think my DNA test was a germline test, but I'm not certain.
Re: mets in lymph glands, the results of my CT scan say "Lymph nodes: No lymphadenopathy." So maybe I don't have visible mets in my lymph nodes. Thank you for your excellent suggestions!
You are most welcome... It does sound like a germline test.... a somatic test is a blood draw to see what mutations are involved/ evolved with the cancer.... This can evolve and change unlike germline. I had both tests initially, and found no germline, and that my somatic mutation is not even one that is routine for prostate cancer (figure that out !!!) . Is your bone disease lytic or blastic. ?? I have lytic-- considered worse--more rare.
As for your PSA, when there is a < before the value, then your PSA has become "undetectable". For me, I use Labcorp and they measure down to .006 as the lowest value.
We are a band of brothers here, so feel free to ask questions...
I wish we could get some explanation as to why it was removed... SOC is discussed here, but alternatives like BAT, IADT with or without SBRT, etc...
I have no idea how to recover it, Scout...
I have offered to be moderator, but HU refuses to acknowledge that offer. I guess they are waiting to place someone that will fit into their guidelines.
Do they really think Moffitt would be involved with something like this if the Science didn't indicate it had potential??
That being said you might be able to delay castrate resistant but we are all trying to do that with various non SOC protocols like BAT which is what i am doing.
I myself don’t know of any SOC way to delay resistance.
Just search on this site for BAT and read the very informative posts. A lot have been removed for whatever reason.
Hard sell for HSPC BAT. I'm HSPC and using BAT. I've known my MO five years and she tentatively trusts me. I'm typically at the edge of SOC.
EMARK might not be an exact fit but we can learn some things from it:
Phase III trial of an adaptive therapy with excellent results. AUA 2023: EMBARK: A Phase 3 Randomized Study of Enzalutamide or Placebo Plus Leuprolide Acetate and Enzalutamide Monotherapy in High-Risk Biochemically Recurrent Prostate Cancer
PSA provocation by bipolar androgen therapy may predict duration of response to first-line androgen deprivation: Updated results from the BATMAN study – PubMed
Forest1160: PCaWarrior is a very learned resource on BAT and its variations. I also am mHSPC on a long-cycle version of BAT for almost 2 years and doing very well on it. the only way to know if it will work for you is to try a couple of cycles of standard BAT and see if you respond favorably or not. I suggest you get and read the Kindle book on Adaptive Bipolar Androgen Therapy for Prostate Cancer to consider it as an option. Paul/MB
Thanks art, aka Scout. I have just reviewed some research on spermidine as relates to cancer, longevity, cardioprotection and neuroprotection via autophagy and mitophagy and possibly other mechanisms. I am just starting supplementation now at 30 mg using Corporalight liposomal brand from Amazon.
As for the Senolytic regimen, that only needs to be used occasionally, perhaps just 1-2 times per year. Most important after completing some cytotoxic therapy such as chemo or radiation that could induce treatment-emergent senescent cells. The 3 day regiment comes from pilot research studies. Some use Dasatinib plus Quercetin (D+Q) and others used Fisetin. I just combine both for 3 days. I have no idea if it actually works as I cannot assay senescent cells. So uncertain benefit vs low risk with the dasatinib and no risk for Quercetin and Fisetin. Paul
PCa is a very heterogeneous disease, so what works for one person with similar disease state may not work for another with a similar profile. The following is a near approximation of comments made by HU member Mateobeach on a recent Prostate Cancer Hacker Lab Meeting (online - # 68):
"~. . . any maximum dosing cancer treatment that does not provide an immediate cure leads to its failure due to selection for resistant strains." (mutations)
However, due to PCa's heterogeneity, time to failure is very much an individual affair.
This same meeting podcast has a n=1 Moffitt patient profile with advanced metastatic disease that might be of interest to you. PCL also has two interviews with Moffitt's Robert Gatenby.
Link to PCL#68 and the PCL search results for "Gatenby" with podcasts that might help you get your bearings on treatment options are below :
Cancer Patient Lab Meeting #68 - Personalized Drug Dosing
Mauritia Flexuosa aka Aguaje comes from Peru and Brazil it is a plant estrogen so will counter your testosterone in a much more pleasant and natural way
Wild yam is also an alternative to ADT
Also include tofu in your diet - try to switch to soya milk
If you add all your data to your profile, it will be easier for other guys to make suggestions.
My oncologists are seeing success in many patients with radiating tumors that appear on PSMA scan.
I'm considering another round of chemotherapy instead of ADT. My first round of chemo plus radiation of abdominal lymph nodes gave me 4+ years of freedom from ADT.
Thanks Tom for raising this question. And the question of pushing off for avoiding development of resistance is the big question!
It's interesting to me because I've only really started reading about this in the last 6 months. From my own medical oncologists and doctors there seems to be zero interest or concern about this - is just a kind of fatalism. So you're willingness to confront this is really important and encouraging.
That said, I have been disappointed in my reading to find no clear pathway to resistance avoidance. Small cell and neuroendocrine and androgen independent cancers await us! And being on triplet therapy myself this is exactly the situation where powerful evolutionary pressure is exactly the recipe for driving escape.
I have little confidence though in all the different finagles that we talk about on here, for workarounds on resistance.
The only thing I've come up with and which I just posted a couple of days ago here, is about the importance of a huge volume of exercise. My theory is that if one exercises almost every day, that one can maintain a continuously high blood serum level of anti-cancer myokines - exercise everyday and high volume is important because these things have a half life. Not saying it will work and ironically right now I just put my hip out!
Once I pass from triplet to double therapy (I have other 2 docetaxel) I will continue my regimen of exercise and also my supplements, some of which have showed promising results (some within clinical trials...some on mice...many many of them ) and I will let you know...but yes, the game for now is pushing away the beginning of resistance and hope that in the meantime something better than the current treatments is developed (and it is being developed, you know my posts).
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) and I will let you know...but yes, the game for now is pushing away the beginning of resistance and hope that in the meantime something better than the current treatments is developed (and it is being developed, you know my posts).
Consulting on next steps
Bone Density - Dexa