This relationship is growing to fast ... - Advanced Prostate...

Advanced Prostate Cancer
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This relationship is growing to fast M1CRPC

GFM887
GFM887
28 Replies

Gary, 68. This is my first post but have been on side lines reading others and I’ve been impressed with the interactions, support and humor!! from all the members to help others with this disease. I’m curious to hear some impressions and comparisons on my time to M1CRPC. My bio is compressed but I should have all pertinent dates, compressed again below, maybe? I’m 3 years post therapy IMRT and seeds. Gleason 3+3-6 and 4+3-7 with a tertiary score of 5, “53% of sample 80% 4 or 5”, PSA 12.8. My PSA has been no higher than 15.2 throughout this entire ordeal. 15 months after therapy PSA went from .98 to 4.89 and 6 weeks later to 12.4 a week later with MO.

6 months Lupron PSA nadir 0.3, T-49. 6 months on holiday PSA 15.2, T-675. 3 months Lupron PSA 5.2, T-49 MRI Lumbar for back pain. 3 months Lupron PSA 7.9, T-28. More pain MRI thoracic and lumbar. I have at least 6 lesions T-8 to C 3-4 and suspicious enlarged bilateral inguinal lymph nodes. Zero signs of

local disease. I do my homework so I know what’s happening during each step but mine seems to be a little unusual. I ask the MO to confirm my concerns about the low PSA and mets plus the short time to resistance, he said he was hoping for 16 months not 6 months before resistance and it was disturbing. I translated that to, You’re Screwed!!

Any wisdom, insight or condolences are appreciated. Thanks

Gary

28 Replies
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Tall_Allen

You certainly have an aggressive form of prostate cancer. Chemo and/or Zytiga or Xtandi would be a good next step. Provenge and Xofigo too.

Genomic analysis of a tumor or tumor DNA in your blood may reveal if you have a rare type of cancer that responds to PARP inhibitors, platins, or Keytruda.

There are clinical trials for many innovative therapies you may want to consider.

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GFM887
GFM887
in reply to Tall_Allen

I started on Casodex just because I need a couple of months to get Zytiga. I haven't researched genomic testing or DNA not a clue where to start or how expensive it is but I'll do the research. Thanks, Allen very much appreciated.

1 like
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Hidden
Hidden
in reply to GFM887

Casodex is bicalutimide. This has been superceded by enzalutimide, and newer still apalutimide. So Casodex is two generations back. It isn't used much in the USA with ADT, and certainly not in place of ADT.

Genomic testing.... maybe. The genomic approach has not produced for prostate cancer anything like Keytruda did for President Carter.

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WSOPeddie
WSOPeddie
in reply to Hidden

I insisted on casodex while waiting for the eligard prescription to be approved. Insurance company dragged their feet and had to be hounded to approve the eligard. I had read that casodex was a good temporary treatment before eligard or lupron as it would prevent the PSA 'flare' that eligard can produce. Besides, it gave me a warm fuzzy that I was doing something to combat the cancer while waiting on the dang insurance company.

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GFM887
GFM887
in reply to WSOPeddie

I had that same feeling and who knows I may get 6 to 8 months from it if I'm lucky.

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Caring7
Caring7
in reply to GFM887

Full scale genetic testing can be pretty pricey I think, but husband's expert oncologist recommended this Color test which was not covered by insurance but only cost $250. That gave a good general overview including things like BRCA (which has a small link to PCa for some). His insurance also did cover a PD1, which, I think, is the main genetic marker than can lead somewhere with prostate cancer. Fuzzy on the details because hubby doesn't have it.

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Nalakrats

Allen--said it all--may want to add a Chromogranin A test---possibility that Neuroendrocrine Pca cells are about.

Nalakrats

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GFM887
GFM887
in reply to Nalakrats

I read some articles today about Neuroendrocrine and I think one mention the test.

Thanks, Nalakrats

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Nalakrats
Nalakrats
in reply to GFM887

You can have an undetectable PSA---and still have Neuroendrocrine Pca cells at large. They do not give off the Prostate Specific Antigen---so most of us that have these bastards--do not find out until they wake one morning with some unexplained bad bone pain. I asked my MO about taking the test last week--he turned me down--just blew it off.

Said I have low burden disease--he is using PSA--I am not--I will be investigating further, for myself---I have ways to get the test---it could be--it is not paid for by Medicare, until you are half dead.

Nalakrats

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Hidden
Hidden
in reply to Nalakrats

Right they seem to use PSA to assess the stage of the disease, even though the NEC variation does not produce PSA. They are more wedded to PSA that we are, and then they say "but dont rely too much on PSA".

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Nalakrats
Nalakrats
in reply to Hidden

Got that right!

Nalakrats

1 like
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Caring7
Caring7
in reply to Nalakrats

At advance stage, and castration resistant esp., we've been told PSA is only one indicator and really needs to be coupled with scans (every three months approx.) and esp. pain or other clinical signs. Any MO who "blows off" what a patient is asking . . . no time for that! If at all possible (and I know sometimes it's not) - change oncologists. Or, try to consult (not change treatment but consult) with an expert at a research center for an advanced opinion. Your MO should be happy to get this specific help (as most MO see all kinds of cancers and can't be up on the very latest info for all of them).

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WSOPeddie
WSOPeddie
in reply to Nalakrats

I have low PSA gleason 8 -- PSA only 2.7 at diagnosis. DRE is what got me sent to a urologist for the biopsy.

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GFM887
GFM887
in reply to Nalakrats

Have you read anything on problems with any of these special test related to false negatives or positives or is it just cost prohibited.

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Nalakrats
Nalakrats
in reply to GFM887

do not know yet

Nalakrats

1 like
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Hidden
Hidden

You had treatment to your prostate: IMRT and seeds. That seems good. You had a small amount (tertiary) of Gleason 5. I assume that was a biopsy of the prostate, prior to treatment. The elecated PSA means metastatic, I presume. Isn't that what you think? You indicate lymph node involvement. If you had been metastatic at diagnosis, they would not have done radiation, but I think I would do continuous ADT. You're screwed, meaning it's metastatic.

The next step seems like abiraterone.

And keep your ears open for a 177LuPSMA trial or treatment, and/or a 225AcPSMA trial or treatment in the next years. You could also consider 225Ra now.

It's not too wierd. You may not have the ARv7 variant, and probably dont have the NeuroEndocrine variant, so you are still in the ceneter of the mainstream.

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GFM887
GFM887
in reply to Hidden

I was mainstream 4 months into my holiday PSA 1.0, T-54 but after that everything went down hill. Less than 2 months later my PSA was 15.2, T-675. Started Lupron 3-month depot 2 weeks later, a week after Lupron MRI for back pain. Lesion on T-12 and C3-4, suspicious lymph nodes. Pain subsided 4 weeks into Lupron. My next injection PSA 5.2 castrate sensitive.

2nd MRI for back pain small lesions on T-8-9-10 previous lesions unchanged. Next injection

PSA 7.9 castrate resistant. Lupron resistant average is 18-24 months. I just lost a year.

Thank you for replying Martingugino

1 like
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Hidden
Hidden
in reply to GFM887

Prostate cancer can be divided into 5 populations at this point.

1. Testosterone sensitive: Needs T, creates PSA. Lupron suppresses gonadal testosterone, and handles this group, by suppressing the synthesis of testosterone in the testes.

2. Testosterone synthesized from adrenal androgens. ketokonizole, but now replaced by abiraterone, suppresses androgen generation in the adrenals, but you need, they say, prednisone to handle the change to corticosteroid production that is a side effect.

Needs T, but makes it, and creates PSA

3. Autocrine prostate cells. These make testosterone from cholesterol, makes PSA

cholesterol control can help?: statins, exercise

4. ARv7. Does not need T or cholesterol, makes PSA

5. immature (stem-like) prostate cells: does not need T, does not make PSA.

For all these types that use T to activate the AR, one can use T-mimetics, (look alikes) that fit into the androgen receptor but do not activate it, and keep Testoserone from activating it.

Each prostate cell has ?millions? of Androgen Receptors.

So you should assess where you are as against each population.

I would think that you should remain on ADT indefinitely.

Apalutimide is the next generation enzalutimide which was the next generation Casodex. You might be ok for a while. Don't start with the funeral planning just yet, or the planned giving.

You lost a year? Where did it go?

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Lulu700
Lulu700
in reply to Hidden

Thank you .you are well versed .

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vandy69

Good Monday Morning GFM887,

At your age (I am 70), Medicare and Supplemental policy should pay for 100% of the genetic tests. I have first hand knowledge of Guardant360 liquid biopsy (takes 2 vials of blood) and FoundationOne (takes a tissue sample). Many genetic defects do not have actionable treatments, but I had an ATM defect which enabled Dr. Snuffy Myers to prescribe Lynparza, a PARP inhibitor. It worked for me for about 9 months.

Best wishes. Never Give In.

Mark, Atlanta

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GFM887
GFM887
in reply to vandy69

I like Dr. Myers. I'll keep those test in mind. 9 months is long time.

Thanks, Vandy

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I know right, isn't this a kick in the nuts.. :P I'm not getting the whole PSA score thing. I thought the scale was up to 18, but then some folks are saying they have a 130, so things have to be getting mixed up. I thought it was adding each side up and getting your score. I'm a noob at this though. What are they giving you for pain? Lesions, bad word bad. When my doc told me I had lesions on my prostate, I told him, "Well, I might not have them if you would stop sticking things up there"! :)

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j-o-h-n

You told the doctor that? YouGottaBeKiddingMe.

Good Luck and Good Health.

j-o-h-n Monday 04/23/2018 7:43 PM EDT

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YouGottaBeKiddingMe

Truth be known, I laughed at him....lol. For real. He's my wife's urologist, and we kind of know him pretty well. My wife has IC (interstitial cystitis), and he's her doc. She does talks and manages his support group for them. I think it was more of a "F me" laugh, but I laugh out loud none the less. What was I supposed to do, pull my hankie? That ain't me. I don't even carry a hankie....lol. Maybe when I'm on the bike, but that's on my head :P

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j-o-h-n

Well I told my urologist that DRE's are how urologist shake hands... He didn't think it was funny so he made me bend over.... I call it praying to Allah...

Good Luck and Good Health.

j-o-h-n Monday 04/23/2018 9:09 PM EDT

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AlanLawrenson

Just want to reinforce the comment about Lutetium -177 therapy. Two injections in Sydney, Australia, put my brother's Stage 4 PCa, into what is hoped to be permanent remission. This treatment is available in Germany and Australia right now. Alternative is to get into one of the clinical trials that are recruiting. My brother's cost was US$15K.

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dress2544

Alan Lawrenson, I have a doubt to clear with you. My MO told me LU177 therapy is useful only for bone mets. He says it is not useful for lymph node mets or other distant organ mets. Is it correct?

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Hidden
Hidden
in reply to dress2544

No. He may be thinking of 225Radium, which acts like calcium, and goes to the bones, without any help. 177Lu has a PSMA guidance system.

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