New member with moldy bones (metastas... - Advanced Prostate...

Advanced Prostate Cancer

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New member with moldy bones (metastases)...here to get involved...

MoldyBones profile image
9 Replies

I'm new here to the community although my wife (MeliaQuinn) has been actively asking questions and reading me numerous posts over the past two years. I was diagnosed in May of 2017 already stage 4 with bone metastases that lit up like a Christmas tree (no soft tissues other than the prostate itself and a few local lymph nodes which are no longer infected). At the time my doctor encouraged me that, although he would not have said it five years prior, he honestly believed that if we could keep me alive for ten years then he thought we would have a cure, or at least what would keep me alive from the cancer for the rest of a long life. Further, he said he also now had confidence that we could probably keep me alive for those 10 years to get to that promised land. This perspective really helped me. My oncologist was a little more skeptical on a "cure" but did say that if we could keep hitting the monster whack-a-mole every time it evolved we could have that long life that I wanted. So here I am more or less confident although I do think the main challenge is going to be keeping me alive for the hypothetically-relevant 10 years. My cancer seems to be a bit on the aggressive side.

So my first decision was to go ahead with a 6-month Lupron shot in order to put off the bigger decision to get the orchiectomy although I new I would take that route. Whatever the extra Lupron side effects were, beyond the obvious hot flashes, I did not want with my anticipated long life. I did not want 90 Lupron shots and associated problems over the next 40 years. Besides the orchiectomy that I got just prior to the Lupron wearing off, I went on Zytiga and went back to a normal life with no side effects except for hot flashes, but then went castrate resistant in just 12 months. Tried to radiate the resistant population in my L1 vertebra but then its clones sprang up multiple other places. So I went on Docetaxel chemo for 8 cycles each three weeks apart and again went back to an almost normal life, well tolerated, but after 6 cycles a population in my left illium went rouge. We zapped that with radiation and resumed the somewhat normal life but then two months later things started firing off in my shoulder, cranium, followed by hips, top of femurs, all original places but painful. I then started waiting to get on a trial and waited and waited ending up in a wheel chair only to find out the day treatment was supposed to start that I had been disqualified for some "treatment history" reason, surprising as they must have spent $30,000 on me doing all sorts of scans and blood tests.

I then immediately went back on Docetaxel and it (along with inflammation-reducing dexamethasone) got me back to near normal. During the trial-waiting period my PSA had climbed from 1.0 after chemo to 115 and after the new chemo it dropped to 60. Three weeks and another chemo later it dropped to 48, and I will test it again before my next chemo scheduled for this Friday. Problem is pain comes back within two weeks only to be saved briefly by the chemo. So old Moldy Bones here needs a new plan soon.

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MoldyBones
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9 Replies
Tall_Allen profile image
Tall_Allen

You sound like a good candidate for Xofigo and Provenge.

MoldyBones profile image
MoldyBones in reply to Tall_Allen

Thanks Tall_Allen and tango65. I think that I should point out that I also have yet to do Xtandi. I've been holding off as doing it will disqualify me from several trials using Xtandi plus an experimental drug (such as the ProStar trial although that is the one I was waiting for and got disqualified at the last minute). I did go in for consultation on the Vision LU-177 trial and qualify but having re-started the Docetaxel just prior to the consult and having it appear to be working fine they could not change my treatment at that time. I have contacted them again with the news that things might be headed in the wrong direction so we will see. They may still be recruiting in my area as they still post that status. By the way, I should have stated in my introduction that I am 55 years old, that my initial PSA was 169. Gleason 7. Live in the Denver area. Have a general oncologist that is young and forward thinking but also have consultation set up with both Anschutz locally and Mayo (MN). These institutions have been very kind in actually reviewing all my treatments and giving me feedback as to course of action. I thank my wife and daughter for all the research and phone calls they made to make that happen. -MoldyBones

Tall_Allen profile image
Tall_Allen in reply to MoldyBones

Since you have bone mets, Xofigo may work as well or better than the PSMA-based radiopharmaceuticals.

tango65 profile image
tango65

Besides Xofigo and provenge which could offer a survival advantage, you could discuss obtaining a biopsy to study if the cancer has mutations which could be treated with specific drugs.

There are also the clinical trials for Lu 177 PSMA:

clinicaltrials.gov/ct2/resu...

and the trial for Ac 225:

clinicaltrials.gov/ct2/resu...

UC davis in Sacramento has clinical trials with modified niclosamide which could resensitize the cancer to zytiga or xtandi

clinicaltrials.gov/ct2/resu...

MoldyBones profile image
MoldyBones in reply to tango65

Thanks Tango, I will check out these links. I also made comment in reply to Tall_Allen.

tango65 profile image
tango65 in reply to MoldyBones

Enza in general works for a short time in cancers which failed abi. However it is possible that chemo could resensitize the cancer to abi and to enza. You should try enza and see what happens. If there are problems with enza, low side effects risk trials are the niclosamide trials. Niclosamide has been effective in phase I/II trials:

health.ucdavis.edu/synthesi...

ascopubs.org/doi/abs/10.120...

mct.aacrjournals.org/conten...

I believe you could qualify for Lu 177 PSMA trials. if you have many bone metastases and diffuse bone marrow infiltation Ac 225 may be more effective than Lu 177 PSMA.

Best of luck in the journey. a fellow traveler...

j-o-h-n profile image
j-o-h-n

Greetings MoldyBones, your boss MeliaQuinn has been doing a bang up job on this site. You are lucky to have a great wife and a great daughter. Give them both a hug and kiss from me. Keep on posting here...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/31/2019 5:41 PM DST

MoldyBones profile image
MoldyBones in reply to j-o-h-n

Will do. Thanks for the support! -MB

Welcome MB ... we are all on the mad-haters ride .. Buckle up its one hell of a journey as you already know . Keep trucking ....

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