Currently Xtandi Monotherapy, have had only Taxotere, no other therapy of any type. G9 2005. PSA rising now. Considering ADT 1/2 dose.

[Sxrxrnr1]

Diagnosed 2005 Kaiser and Stanford said G9. Bostwick and UCSF said 4 plus 3 G7. All on same biopsy No biopsy since

Elected to do no therapy. Watched PSA climb from 5 at diagnoses to 70 in 2nd quarter 2017. Annual scans always clean except at prostate. MRI’s, Bone, and Pet 18 Fdg. 4th quarter 2017 jumped to 260 with some bone and lymph Mets.

Went on Xtandi monotherapy. The day I started I did PSA before first pills, I was at 374. Within 6 weeks PSA was 12 plus. Cut back on pills daily from 4 to 3 to 1 because of Fatigue.

Elected to go onto 6 sessions of Taxotere when PSA had climbed to 19. After Taxotere and religiously back on 4 Xtandi daily PSA was at 3

Now 3 months after Taxotere, PSA has risen to 9, about 2 points per month.

Still on Xtandi, but December 2018 elected 1/2 dose of Lupron. First PSA reading has climbed to 9 from 7. T has dropped from 800 to 22

This after only single 375 mg dose Lupron

Am considering dropping Xtandi and going straight 1/2 dose Lupron initially, watching PSA, doing Pet 18 FDG(scans were clean very soon after Xtandi, do not know now,,,yet). If required would add Casodex.

I have been pushing luck for 13 years, knew if I did not die from a co-mordity I would face these days,,,have had 13 excellent years with no symptoms at all and a great QOL I am now 78 plus years of age

Below is a letter that I just emailed to one of my 3 MO’s, all of whom have deemed me, perhaps a bit around the bend.

Am seeking wisdom and opinions from members of this forum.

Incidentally for some reason I have 2 different user names Sxrxrnr and sxrxrnr1. Have not figured how to merge to only one. Would prefer to retain sxrxrnr as user name on forum

Subject: Rising PSA on Extandi following 6 sessions of Taxotere.Dr. XxXXxX

I have been on Xtandi Monotherapy(160 mg daily except for a period in 1st quarter of 2018 when we experimented with 3 then 2 then 1 pill to possibly alleviate intense fatigue, but seeing PSA climb to 19 from low of 13 before cutting back daily dosing) commencing late third quarter of 2017, followed by 6 sessions Taxotere ending third quarter 2018. When starting Taxotere I went back to 4 Xtandi pills each day and have religiously followed this dose since.

PSA reached Nadir of just over 3 from 19 when completed chemo. Since then has been creeping up by some 2 points each month since then. 1-3-2019 as seen in My Health record, now sitting just over 9. Did Taxotere cause this drop or was it merely by going back to full recommendation of 4 pills daily with Xtandi?

At your recommendation I submitted to a half dose,,,375 mg of Lupron in early Dec 2018 and another on January 3, 2019

Given that a new year has commenced and I will be hit with a 5,000 dollar donut hole payment[and 560 monthly ongoing charge] and Xtandi’s possible failing I am considering in spite of my extreme reticence dropping Xtandi because of SE of extreme fatigue, excessive costs, and it’s possible failure.

Then going to full dose of monthly Lupron or perhaps carrying on with half dose to find if I can see PSA reach a nadir below .05. Or is this even possible while still having a totally unmolested PROSTATE, no local intrusive therapy to prostate by RT, RP, Cryogenic,,,,etc?

ADT concerns me greatly for many reasons, not the least of which is diagnosed osteoporosis,,,,I am of course on monthly Xgeva.

Also have a question. Xtandi has raised my testosterone from 350 to 600 to 900 depending upon which month. Lupron’s mission is to lower it. Seems somewhat incongruously at odds as to who wins this battle. Could you explain this to me? Just now reviewed recent T level. After only a simple 1/2 dose injection in early December 2018, it has dropped from 800 plus to 22. Very interesting considering what Xtandi tries to do with T in the massive rise that its usage engendered.

With only 1/2 dose of a single Lupron injection, I was surprised to see this massive drop in T. What if anything would a full dose additionally provide? Would SE’s be of any difference if on full dose? Particularly if deprivation of T is the reason for ADT SE’s, not the Lupron injection itself.

I have noted a lessened irritation of my chest nipples since Lupron. To be expected phenomenon, but still interesting

It appears Xtandi is failing, or is its benefit if any, gleaned from Taxotere waning?

Please advise your thoughts on this. I have about an 8 day supply of Xtandi before must sign up for first dose of 2019 at donut hole cost of plus 5,000 dollars. I do have a 90 day supply of Casodex from 2017 prescription, none of which I have ever used,,,,went straight to Xtandi after having it approved. Would prefer no Casodex unless a good reason to use.

Would love to try Darolutimide when becomes available. Perhaps anti-androgen fatigue would not be such an issue because of its inability to penetrate blood brain barrier,,,and perhaps more effective than Xtandi. Of course this is still off to a future if ever date.

As usual I am interested in your opinion and advice.

Thank you

Sent from my iPad

Sent from my iPad

[Tall_Allen]

"Also have a question. Xtandi has raised my testosterone from 350 to 600 to 900 depending upon which month. Lupron’s mission is to lower it. Seems somewhat incongruously at odds as to who wins this battle. Could you explain this to me?"

Lupron wins - it cuts off testosterone production at the source (the testicles). Xtandi only blocks the testosterone from getting into your cells - so, deprived of that outlet, it accumulates in the blood

[Sxrxrnr in reply to Tall_Allen]

Excellent. I had been thinking that as systems wanting their T fix were being deprived because of Xtandi blockage, they were possibly signaling pituitary to turn up the crank. Your analysis is simpler and makes sense.

Just as a river that is dammed and the water has no where to go, you end up with a lake.

Do you have an opinion of 1/2 of regular dose injection of Lupron if as I have now done twice and my T has dropped from 800 to 22. This resulted from only a single 375 mg injection. And ceasing Xtandi at same time,,,,to avoid intense fatigue and 13,000 dollar expense.

I understand in Japan, 1/2 dose injections. are very common. Wonder if merely due to smaller stature of Japanese males and to save on costs.

Have not gotten a T measurement after 2nd injection yet.

Perhaps if necessary to get desired PSA response I might add Casodex if required.

Perhaps just drop Xtandi and see how it goes. Monitor PSA’s and do imaging to find how things are doing.

I do not qualify for financial aid, and the SE of fatigue is killing me,,,,,not to think of course what Lupron SE’s May wrought.

[Tall_Allen in reply to Sxrxrnr]

I don't see any benefit to half injections. The side effects are almost entirely from low T, not the Lupron chemical. Recent evidence is that T has to be below 20 for optimal effect. Low T that is not low enough will just make you moody and give you the side effects without the benefits.

[Sxrxrnr1 in reply to Tall_Allen]

2 injections each of 375mg,,,1/2 dose,,,in past 35 days, T has dropped to 22 and now 13. Was at 954 just before injections, while on Xtandi monotherapy. However PSA has move risen in two iterations from 7 to 11. Was at a low of 3,,30 days after completion of 6 session Taxotere. Doing follow up Pet 18 Fdg and prostate(still have one unmolested by any therapy at all the past 13 years)and chest to hips MRI next week to determine if further clinical evidence of progression.

[Tall_Allen in reply to Sxrxrnr1]

FDG PET is not useful for prostate cancer, except in last stages.

[Sxrxrnr1 in reply to Tall_Allen]

With mets to ribs/pelvis, some lymph nodes, PSA rising rapidly(quadrupling almost in less than 4 months) on both Xtandi and Lupron, Taxotere having done very little do not know if could be defined as last stages,,,,but certainly quite advanced.

What would you consider final stages? I do not expect to expire in next few months but a couple of years or less not out of the question.

[Tall_Allen in reply to Sxrxrnr1]

When I said "last stages,"I was referring to a biochemical development of the cancer, not to mortality. Unlike many other cancers, prostate cancer does not normally metabolize glucose (FDG is fluoro-deoxy-GLUCOSE). Until that occurs, there are many false negatives. Better choices are NaF18 or Axumin PET if you can get them, or just a bone scan/CT.

[Sxrxrnr1 in reply to Tall_Allen]

Thank you, was unaware of this. I was informed late in 2017 that Medicare no longer pays for Naf18 scans. I will run your points past my MO. I had asked about Axumin, he responded of little value as we had previously seen scans with FDG,,,,that were not so small to require c11 acetate, Pmsa or Axumin to detect.

[Tall_Allen in reply to Sxrxrnr1]

You may have problems with insurance and getting on clinical trials - Axumin and the PSMA-based PET scans are only approved for men with recurrences. C-11 Acetate is not approved, but C-11 Choline (at Mayo) is. NaF18 is only approved by Medicare if the institution as a registry.

[Hirsch]

Do you not have an oncologist who’s managing your disease. Do you prescribe your own medicines?

[Sxrxrnr1 in reply to Hirsch]

I am being supported by 3 different excellent MO’s practicing at 3 different 1st class facilities. However I fully participate in all treatment decisions made on my behalf.

[Hirsch in reply to Sxrxrnr1]

That’s great. A very unique approach 😊

[Hidden in reply to Sxrxrnr1]

Then you’re in good hands. Good luck once again .