Need advice : My dad had... - Advanced Prostate...

Advanced Prostate Cancer

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Need advice

Ayra1 profile image
32 Replies

My dad had oligometastatic prostate cancer. With only solitary met at femur.On zoladex shots every 3 months for past 2 years 8 months. Psa has started to rise. Last was 0.067 from <.008. Testosterone was 20.

Has started dad on sour soup and turmeric lozenges. Querctin ordered. Next steps please?

Also should biclutamide be added to this regimen as T is 20. What is the expected value of T while on zoladex?

Also any other supplements which will help him?

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Ayra1 profile image
Ayra1
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32 Replies
LearnAll profile image
LearnAll

His PSA is still very low. As for T level, anything at or below 20 is considered sufficient.

If PSA keep rising then, Bicalutamide or Abiraterone can be added by his doctor.

Ayra1 profile image
Ayra1 in reply toLearnAll

Thank you

Tall_Allen profile image
Tall_Allen

Here are his current treatment options:

pcnrv.blogspot.com/2017/06/...

Haniff profile image
Haniff in reply toTall_Allen

Thanks Allen

👍

Ayra1 profile image
Ayra1 in reply toHaniff

Thank you

GP24 profile image
GP24

I would radiate the met with SBRT and reduce the PSA value this way.

europeanurology.com/article...

Ayra1 profile image
Ayra1 in reply toGP24

Is there a number till which u can take radiation. He had radiation twice. Once to prostatic bed and second sbrt to femur met

GP24 profile image
GP24 in reply toAyra1

I had SBRT radiation to the same mets that were treated with a dose too low to work before.

You did not mention that you already had the single bone met radiated. I thought that is the reason for the PSA rise.

I would try to locate the reason for the PSA rise with imaging now. The best is a PSMA PET/CT.

Ayra1 profile image
Ayra1 in reply toGP24

Thank you.

GP24 profile image
GP24 in reply toAyra1

I may not have answered your question fully. You can have several radiations but usually not to the same area. Exception is SBRT which can radiate the same spot twice but not all ROs will do that. You can also radiate an area with brachytherapy if it has been radiated with IMRT before.

Ayra1 profile image
Ayra1 in reply toGP24

Ok. Thank u. Also at what psa level should we get pmsa /CT.

GP24 profile image
GP24 in reply toAyra1

I would wait until the PSA value reaches 1.0 ng/ml because it is expensive and you want to get a valid result. I am currently waiting for my PSA to reach this value, but this waiting makes me nervous.

See this image:

cdn.jamanetwork.com/ama/con...

from this study:

jamanetwork.com/journals/ja...

tango65 profile image
tango65 in reply toGP24

What dose do you consider effective to control the metastasis?

GP24 profile image
GP24 in reply totango65

I follow Muldermans and think 120 BED is required (for an a/b factor of 1.5). You have to convert the schedule your RO does to BED. Usually with SBRT they will apply higher doses but a few ROs do not.

ncbi.nlm.nih.gov/pmc/articl...

IMRT to the pelvis will use lower doses but sometimes they increase the dose for the visible nodes.

Ayra1 profile image
Ayra1 in reply toGP24

Thanks again

jrodrig profile image
jrodrig

I had oligometastatic, in a lumbar verthebra. I had the last july 3 sessions of SBRT and the lession dissapeared. I am keeping in ADT and I have avoid by now the next step to enzalutamide.

Ayra1 profile image
Ayra1 in reply tojrodrig

Thanks

Patrick-Turner profile image
Patrick-Turner

With Psa at only 0.067, it may be difficult for any scan to show the full number of mets because they may be so small. What was dad's full history of treatment?

Tall Allen gives good a good reading link about oligometastatic Pca, but I found it confusing about what to do next. Docs here don't worry much if Psa < 0.3. If there is only ONE met in femur, maybe that's where all the Psa is being generated so getting that met radiated by EBRT might kill it, but if there are maybe countless tiny unseen mets ready to start growing as time goes on, then killing one met seems pointless if it is now quite small. So chemo might be better, if it works. Often it does not, and side effects are horrid. Here in Australia docs try ADT for as long as possible, then add Cosadex, and when that fails they'll add Zytiga or Xtandi, and when they fail they give chemo, and if that fails the Psa has usually gone much higher than now and maybe Lu177 is a solution, and this requires the PsMa Ga68 PET/CT scans when Psa is usually above 2 and below 10.

I have survived since diagnosis since 2009 at age 62. I had the above procession of drugs and had Lu177 last year with pleasing results, with addition of Xtandi.

I have no idea what my next year will bring. Pca tries to keep coming back after something bashes it down.

Patrick Turner.

Ayra1 profile image
Ayra1 in reply toPatrick-Turner

Dad was diagnosed in 2014 May. He had RP with margins clear but one node positive. He was kept on wait and watch policy . His psa was slowly rising . It reached .2 in 2 years and then suddenly jumped to 2 when he had his MRI and we found a solitary femur met. He was given SBRT and then started on zoladex and biclutamide. His psa <.008 for almost three years and now it has started to rise again with last valour of .067. Biclutamide was stopped after an year od ADT initiation.

Patrick-Turner profile image
Patrick-Turner in reply toAyra1

The low Psa of 0.008 for you dad has enjoyed for 3 years is something unusual, because here we rarely see measurements below 0.01. I had Psa of 8.0 at time of attempted RP, but it could not proceed because cancer had surrounded PG. But it had not spread elsewhere nearby. They took biopsies of nearby tissues and found no mets, and I was given ADT then EBRT at 6 months into that, and lowest Psa I ever saw was 0.08, after 2 years ADT. I stopped to see what would happen and Psa went to 8.0 after 6 months accompanied by rise of testosterone to 20, within normal range between 8 and 38. So I had to re-start ADT, and have been on Lucrin monthly injections ever since mid 2013 But during that time, Cosadex was added for 6mths in mid 2016-17, and Zytiga followed for 8mths in 2017-18, and then I had chemo in 2018, and that failed. I had several PsMa scans that showed countless mets had formed in bones and soft tissues, despite the ADT suppressions, and chemo. So Pca grows while using ADT, and during chemo, but just grows more slowly for most men with ADT, and chemo gives variable outcomes.

So what do the scans show now? It may be impossible to see much from scans while Psa = 0.067. So you may have to wait until Psa rises a bit more. But here the next thing would be to add Zytiga to the ADT that should continue, maybe forever. The Zytiga may keep Psa low for a mean time of 8 months; some men get less, some get more. After Zytiga stops being able to hold down Psa, chemo is next step. I found it failed after 4 infusions, Psa went from 12 to 50 in 15 weeks.

I watched a friend have Psa go from 40 to 2 in 8 weeks during chemo, then it just rose to 40 again after a full 10 infusions with usual horrid side effects. I quit my chemo after 5 shots, then began Lu177 on 4 Nov 2018, and by last Nov Psa was 0.32. My friend should have abandoned chemo earlier and had Lu177. But docs opted for Brca-2 analysis, he was positive, and they tried PARP inhibitors which pushed his Psa from 40 to 432 in 2 months, and a bunch of new mets showed up in his liver, and he became so sick he could not survive the hassle of getting Lu177 and he died. His response to all treatments was poor; there was Pca still present after an RP, the ADT suppressed Pca for only 3 months, Cosadex made Psa rise faster, and chemo failed.

He was 59, had lovely wife and two teenage kids.

Nature gives us all a different type of DNA and some will respond to treatment a lot better than others.

Talk to the best doctors you can find who specialise in Pca. Just talking to them will only cost the consultation fee, and I think you have time to consider what next. To talk to a doctor at Theranostics Australia would cost usd $350 by Skype, but I think you'd need a referral from your present doctor.

Patrick Turner.

Ayra1 profile image
Ayra1 in reply toPatrick-Turner

Thanks much.

I am just wondering his testosterone is 20 while on ADT. So adding biclutamide will be good? What’s the target T while on ADT

Patrick-Turner profile image
Patrick-Turner in reply toAyra1

In my country Australia, we measure testosterone ( T ) so that normal range is between 8 and 38 for healthy men not on any ADT. The last time I had my T measured is was 0.5, way below what was normal for me at 20. I don't know what the units of measurement were. But in other countries T is not measured the same way. If I had T = 20 it would indicate ADT is not working at all.

Now blood tests should give the figure for T and then indicate if its above or below normal and state the range of normal, between a minimum and maximum.

So what was typed in your dad's blood test ?

ADT with Lupron, Lucrin, Eligard etc usually shuts down testicular production of T, and is about equal to have testicles surgically removed, which used to be standard procedure before drugs came along.

The operation is simple and cheap, but of course drug companies have made a fortune on repeating doses of drug for what is chemical castration. It costs my Medicare usd $3,500 a year. Could have had an op in 2010 for $2,000. But ordinary prevention of testicular production of T does not reduce all the T in a man's body ; his adrenal glands makes some, and drugs like Cosadex, Xtandi and Zytiga interfere with adrenal gland function and interfere with how the Pca uses T to grow. The response over time from Pca is to make its own T, so hence we see when this happens when Psa goes up after being on ADT or after being on the added drugs mentioned over some time. The add-on drugs just kick the can down the road. They don't seem to kill Pca. I watched my mets grow while on these drugs in repeated PsMa scans.

There is considerable info about combining chemo while taking Xtandi or Zytiga, but here that is not protocol. When Zytiga failed I went to chemo, and there was no known benefit of continuing Zytiga during chemo.

I was no allowed to switch to Xtandi. Protocol here is determined by rules set down by our Medicare which has to fund all the care we get, and protocol here is based on years of history and research, and treatment is not based on some doctor prescribing something which has not been trialled and approved.

The exception here at the moment is Lu177. Its not properly or fully approved, but its efficacy is so evident in trials so far the authorities here allow its use, providing a man has failed chemo. The law here is that if chemo fails for a man he is free to buy what he likes and which has partial approval, and Lu177 is in that category. But Medicare won't fund it. I suspect Medicare will fund Lu177 as time goes by, but funding approvals for expensive drugs to benefit old men are not high on politicians' to-do list. I heard a lady on TV say last year that she had exhausted all available treatments for her breast cancer in the Public Hospital and Medicare system and then had to sell her house to pay for another million bucks worth of treatment. She gave no itemised list because I don't know what treatment she did purchase. I guess insurance did not fund her costs either. But she wanted to be around to see her grand children grow up.

Anyway, funding Lu177 has to be thought about carefully. Also Provenge, its another real high cost therapy, and does not always work. It looked like a break-through now therapy when begun about 11 years ago, the makers claimed 1 year of added lifetime for the usd $90,000, and they got FDA approval, then had to revise the benefit time down to 4 months, so not so hot. But one man emailed me to say he had had remission by use of Provenge soon after it was invented years ago, so it worked real well for him, and it seems he is in a small minority of patients. I suspect that the alteration of white cells that is done to fight cancer cells should be carried on in generations of new white cells. If the alterations are not carried on in succeeding generations, there's nothing to fight cancer after the initial treatment. I could be wrong about this, but then I cannot know everything knowable about treating Pca.

Patrick Turner.

pilot52 profile image
pilot52 in reply toPatrick-Turner

Where did you go for Lu177 ? Blue Skies

Patrick-Turner profile image
Patrick-Turner in reply topilot52

I live in small city of Canberra but got my Lu177 in big city of Sydney about 300km away. The Lu177 is overseen by doctor from Theranostics Australia and the clinic is at Waratah Private Hospital in Hurstville, a suburb of Sydney.

The Theranostics Australia website is worth a visit. They began operations in Perth in 2015, and have done about 800 pca patients. Cost was about usd $6,700 per infusion, and you may need 4, at 8 weeks apart, plus three 3 PsMa Ga68 scans, one before any treatment, one during, and one follow up.

They also have their original clinic in Perth.

I met 2 men from USA and another from NZ during my treatment.

Patrick Turner.

pilot52 profile image
pilot52 in reply toPatrick-Turner

good stuff thanks......

CalBear74 profile image
CalBear74

My personal opinion: switch from Zoladex to Lupron plus Bicalutamide. Disclaimer: I am not a physician but a patient who has been on Lupron plus Bi.My testosterone hovers between one and two, but this is now being accomplished with Lupron only as my current doctor Took me off the bi.

Ayra1 profile image
Ayra1 in reply toCalBear74

Thank you

Break60 profile image
Break60

I had my femur met radiated with sbrt.

Mish80 profile image
Mish80

My dad has similar stats - radical prostatectomy in 2010 then slow rise in psa until a jump = one met showing up from pmsa pet scan on the spine. He has also been on three monthly shots of Zoladex. Psa went from 1.4 to 0.1 where it has stayed. As for next steps... I’d be interested in what path of treatment your dad is advised. Hang in there, as a fellow daughter of this shitty disease I get it x

Ayra1 profile image
Ayra1 in reply toMish80

Yes sure. For how long dad has been on ADT? What’s his testosterone levels and age

Mish80 profile image
Mish80 in reply toAyra1

Since March 2019 when the Met was picked up. He’d had a pmsa pet scan August 2018 which was clear. Dad has also had radiation to his prostate bed and the spinal met.

Mish80 profile image
Mish80 in reply toAyra1

Sorry dad is now 68. Not sure on current testosterone levels

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