DIY BAT: an interim report

[kaptank]

G'day comrades

About 2 months ago I reported my experience with self administered BAT. (search DIY BAT). To summarise I had been on ADT (zolodex) and bicalutamide. When bicalutamide failed after a year (peak PSA 4.4, doubling time about 2 months), I stopped bicalutamide, waited a month to let it wash through, then started monthly intramuscular injections of testosterone (T) cypionate (400mg) while remaining on zolodex. T cycled from a supraphysiological spike to near castrate each month. PSA declined to under 3 and started rising after about 8 months of this regime (peak 3.9). Then I stopped the T and re introduced the bicalutamide. One month after, PSA was 1.8. That was when I wrote the report. This report relates to the next 2 months. PSA declined to 0.85 the next month and 0.55 the month after, a fairly convincing reversal of resistance to bicalutamide. In fact, this response was much better than the original response to it. This is interesting because all trials so far have shown a generally weaker and shorter resistance reversal but none of those involved bicalutamide. It remains to be seen how long my particular resistance lasts but as it stands I reckon I have gained at least an extra year. I intend to repeat the experiment when resistance sets in again.

One of our number, bigdon also recently reported similar experience, also with bicalutamide (see: Final report on BAT after 20 months)

There is food for thought in the BAT story and any means to reverse resistance to treatment is of interest. It is not a magic bullet. Our problem is that there is no incentive for big pharma to fund large scale, definitive trials. We have to learn as we go. Discussion groups like ours pool our ideas and experiences and can come up with much more than any sum of single contributions. We are an idea and experience multiplier.

We are all in the risk analysis game. All treatments have consequences at our stages. We have no option but to devote a lot of attention to risk analysis. I approached this experiment with great trepidation, acutely aware of all the things that could go wrong, and vividly portrayed by my respected, concerned medical advisers. Coming out the other side, testosterone seems to me, if dealt with sensibly, with good medical advice, a fairly straight forward treatment management option. There is much we do not know and in many of our cases, not enough time left to find it out. One principle of risk analysis that occurs to me is that we should limit exposure until more is known. By this I mean that BAT gives a much more limited exposure than continuous supraphysiological testosterone and I prefer it for that reason. Current knowledge would seem to indicate that traversing that interval of blood testosterone concentration that PCa prefers (low-normal) should be minimised. Hence the ADT to cause a precipitous decline after the testosterone peaks. And you go castrate very quickly if things go wrong.

So I am not yet a fan of continuous testosterone. I do not believe that patches and gels can generally get you to true supraphysiological levels (about twice the highest level of the normal range) and only intramuscular injection will get there.

Thanks for being here folks.

[pjoshea13]

That's really good news.

I'm sure that this will interest many who have become resistant to drugs that target the androgen receptor, but there is something attractive to me about the idea that continuous BAT may inhibit resistance. Can't be easy for cancer to adapt to an environment where T fluctuates from super-low to super-high every 31 days.

-Patrick

[Fairwind]

That's great news, thanks for posting it...I have been trying for a year to do BAT but (in Denver) I can find no doctor willing to administer it or simply write a script for the Testosterone as I'm sure I can self-administer it..How did you manage to obtain the Testosterone ?

Today, in trials, they are trying to use BAT and TRT to "reset" the Zytiga response..The fact that you have achieved a fantastic "reset" using the MUCH cheaper drug bicalutamide is of tremendous significance.

It would seem that BAT allows very effective treatment of advanced prostate cancer at a fraction of the cost of many of today's "wonder drugs"..I'll see if I can PM you and we can talk about the details...

Again, thanks for posting this...

[gusgold]

If you were on zolodex and casodex how did you know just the casodex stopped working...if you stayed on zoldex + T for 8 months then stopped T and added casodex how can your experiment have any validity if your were also on zolodex the whole time

[Fairwind]

BAT requires that you stay on a drug like Lupron or Zolodex throughout..The "T" injections provide a short duration "T" spike (you only inject once a month, the "T" is gone after 4 or 5 days..) The fact his PSA dropped from 4 to 0.8 indicated the effectiveness of the Casodex was reset by the "T" injections..The same thing happens with Zytiga but it costs much, much more...

Kaptank, I located a source for "T"....

[Tall_Allen in reply to Fairwind]

There is a clinical trial in Denver:

clinicaltrials.gov/ct2/show...

[Fairwind in reply to Tall_Allen]

For this trial patients who have been on Xtandi are excluded..But I have contacted the lead doctor for some advise..BAT is a very quick and simple procedure. Results can be expected in 2 or 3 months, no need to drag it out for 10 years..It works or it doesn't. You get better or you get worse. Total cost about $200. is there a risk of an adverse outcome ? Yes...But that's true of ALL these cancer treatments..

[Tall_Allen in reply to Fairwind]

It's not true that other treatments have the potential to make the cancer worse - I can't think of anything that does that. This is too dangerous to be done unsupervised.

[kaptank in reply to Tall_Allen]

My risk analysis concluded that the likelihood was low that the BAT I have outlined would result a worse case than would happen if I did nothing. When one first starts this, PSA is in an upward trend with decreasing doubling time. The procedure Denmeade et al adopted was, subject to close monitoring, to continue the BAT for 3 months. The first month PSA is meaningless. If at the end of 3 months PSA was above the starting point and in upward trend, discontinue and go to the appropriate standard of care. Even with that kind of failure to BAT, rechallenge with the previously failed agent may well have an effect. Otherwise, continue month by month until PSA shows a rising trend. Rechallenge. I figured the worst that would happen is that the upward PSA trend evident at the start would continue. The risk interval for a catastrophic increase in rate is that first 3 months. I saw no evidence for that in the case of proper BAT. The cases of such results seemed either not to involve true supraphysiological testosterone or they involved continuous high T using patches and gels. The greatest risk in PCa is not supra- T, it is low-normal T.

The biggest risk I had was sourcing my T.

I do agree that this sort of caper should be under good supervision. Its just not available here in Aus. Believe me, I tried.

By the way, I very much appreciate your contributions.

[Tall_Allen in reply to kaptank]

BAT works for some men, and may make it worse for others, Hopefully, at the end of their clinical trials, Denmeade will be able to find biomarkers to select patients for whom it is safe. I'm glad it worked for you, but as you intimated, your post should come with a warning "don't try this at home."

[kaptank in reply to Tall_Allen]

Yes, I agree. US laws are less stringent and supply is not limited to prescription only or black market. You are far more likely to find doctors willing to give it a try with close monitoring. In my case the failure of bicalutamide seemed to be the ideal time to try it before proceeding to the next standard of care. Caution is always advisable but I was a bit comforted by the extensive experience of body builders with supra T, and the reviews by Morgentaler of decades of T use. It is clear that the "T is fuel for cancer" thesis that has adorned textooks and lectures since the 1940s has very little supporting evidence. Biomarkers would be great if we had them but I figured it was worth a try - cheap, easy and you can stop the experiment and return quickly to castrate state and standard of care if things go wrong. My oncologist while opposing vehemently, also said that she did not think it would close off any future treatment options.

[kaptank in reply to Fairwind]

I got my T from the underground suppliers to the body building/weight lifting fraternity. Its worth it to check out their chat rooms etc - lots of experience with very high T and much discussion of who/what supplies good gear. Here in Australia our border force is too efficient to consider bringing it across border and we have to find a (hidden) local lab and pay in bitcoin through secure overseas email addresses. The T is then sent by local mail. If you can find a doc who will prescribe it, that is preferable but not possible here.

[gusgold]

I still do not understand the conclusion unless you accept that he was castrate resistant and the zolodex was not working either. I want to prevent castrate resistance and I am on Xtandi monotherapy and every month get a shot of T

[kaptank in reply to gusgold]

In my case, I started on zolodex and when that went resistant, started bicalutamide. I stayed on zolodex the whole time. I suspect but cannot prove that my zolodex resistance also conferred some bicalutamide resistant effect as the re-introduction of bicalutamide after the supra-T had a greater effect than the original introduction of it, contrary to the experience others had with the other androgen blockers such as enzalutamide where the reintroduction had a significant but generally lesser effect after the supraT.

This raises the interesting question: should we start at the outset with the androgen blockers (bicalutamide monotherapy, no zolodex - leaving it as a final resort until much later in the game). That would be a worthwhile improvement in quality of life.

Keep us all informed as to how your enzalutamide mono therapy plus monthly T shots works out. I assume in your case T cycles from supraT to close to normal each month.

[podsart in reply to gusgold]

After the T shot what level does your T reach?

[gusgold]

That is what I am doing...holding Lupron in reserve and using T to prevent or delay Xtandi resistance

[kaptank in reply to gusgold]

Keep us informed. Yours will be a very important experience. As a purely mental exercise, we could imagine a treatment regime after surgery, radiation etc when PSA starts rising again as:

First: first generation androgen blocker monotherapy such as bicalutamide with testosterone once a month (need to ensure the patient's normal T is not in the low range). When this fails:

Second: second generation androgen blocker monotherapy such as enzalutamide with T. Only when this fails, go to:

Third: docetaxel or such chemo agent.

Fourth: zolodex, lupron and the like. Castration the last resort, not the first.

Of course there is huge variation in human responses to exogenous testosterone and we know little about sequencing: Should the T be injected once a month throughout, or should we just do BAT 3 months on, three months off, or just when resistance arises?

Well, we can dream can't we.

[Fairwind]

At the moment, I am doing chemo, Cabazitaxel, second infusion next week..My last PSA showed a dramatic drop from 339 to 210 so I don't think adding BAT on top of the chemo would be very smart at this point, too many things going on at once, impossible to tell what is working and what is not..So as long as the chemo is working, keeping the PSA trending downward, I'll stick with that for the time being..Maybe I can contact Dr. Denmeade at J.H. and ask him how many of his trial patients had to bail out because of an unacceptable PSA increase..I talked to him once before, he said his biggest problem was getting funding to expand his trials....

[kaptank in reply to Fairwind]

I agree entirely with you. If you have a treatment that is working do not interfere. I think BAT is most appropriate when a treatment starts to fail. I think its basically a management tool to keep standard of care going a bit longer.

[Mazdaguy]

I thought this related story was interesting...

telegraph.co.uk/science/201...

[kaptank in reply to Mazdaguy]

That is a fairly old report (2016) of an early trial. There was one fellow whose PSA went to zero and stayed there for 2 years. Naturally his DNA has been investigated. I am told the tricky critter, after a 2 year sleep has raised its head above the limit of detection in the past year.

[kaptank]

For those interested this is a 2 hour presentation by Sam Denmeade.

youtube.com/watch?v=dU5EoW9...(Not working as expected?)

[kaptank]

youtube.com/watch?v=dU5EoW9...(Not working as expected?)

[kaptank]

Sorry, I'm not sure if you got that. This is the Youtube URLyoutube.com/watch?v=dU5EoW9...(Not working as expected?)

I have run URL into https to try to avoid the problem. You are going to have to type it in, delete URL

[kaptank]

Perhaps this will work.

youtube.com/watch?v=dU5EoW9...(Not working as expected?)

[Mazdaguy]

I’m trying to get a PSMA and I had to see a doctor at Johns Hopkins in order to see if I qualify. Ironically, I’m going to be seeing Dr. Denmeade. I will definetely talk to him about BAT.

[kaptank]

I give up. If you click the bottom right arrow on the error screen you will be taken to Youtube where if you put Sam Denmeade into the search bar you will get this and some other very interesting presentations.