Treatment study: My oncologist... - Advanced Prostate...

Advanced Prostate Cancer

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Treatment study

Muffin2019 profile image
12 Replies

My oncologist mentioned a study that is going on, it uses a PSMA PET scan to locate the cancer cells then uses a tracer to kill the cancer, anybody heard of this? Going for another ct/bone scan in January, last one was june of this year. On arbitrone with dexamethasone, the readings has gone from .7 to 1 in a year. I thought the scans were done when doubling took place of the PSA, do not think mind has doubled yet. It will be 8 months since last scan, just wondrr why another in 8 months vers a yearly since myPSA is still low.

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Muffin2019 profile image
Muffin2019
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Tall_Allen profile image
Tall_Allen

LU177PSMA617 and similar radiopharmaceuticals are still in clinical trials and may be available by expanded access pending approval.

Muffin2019 profile image
Muffin2019 in reply toTall_Allen

He said by spring there is a good chance that these would be approved. How expensive is it as far as costs to the patient, nobody on here has indicated that fact ? Does the insurance pick up most of the tab ? A few of his patients are already doing this, one had to stop due to health issues but the other 2 is doing OK so I am assuming that it must be in clinical trials now. Since you are a source of knowledge, how do I know that abi had stopped working ad far as PSA numbers, I am stable now even at 1.0, is this correct ? He did mention xtandi as a next treatment but isn't that the same type and is it effective following abi or would chemo of some sort be done ?

Tall_Allen profile image
Tall_Allen in reply toMuffin2019

When the FDA approves it, Medicare and insurance follow soon thereafter, so there will be no cost, except for any co-pays, to the patient. If you are treated on a clinical trial, the drug company picks up the cost.

You will know when abi stops working because there will be significant increases in PSA and/or new metastases on scans. I think it is best to alternate chemo and hormonals. Most trials for Lu177PSMA617, and when approved, require previous chemo and the failure of either abi or enza.

Muffin2019 profile image
Muffin2019 in reply toTall_Allen

Thank you so much, you are the best.

TJGuy profile image
TJGuy in reply toTall_Allen

Tall Allen

The FDA approved PSMA scans at UCLA and UCSF only in Dec 2020.

Medicare approved it many months later in 2021 ( made it retroactive I believe for the time period lag) for just these two institutions.

Do you know if any Insurance companies have approved payment for it yet?

Is there a actual expectations for nationwide FDA PSMA scan approval, especially with the shelf stabile version?

My BCBS seems to want to deny and delay every thing it can. (I had to fight through long appeals to win a recent Choline scan.)

For a different example I was recently denied a cough suppressant that cost $45 via RX card.

As far as PSMA LU-177 in the US I wonder how long the Insurance companies will drag their feet and put obstacles in the way to patients actually getting it and the Insurance actually paying for it? It doesn't seem like they will follow lockstep with Medicare.

So these insurance companies have recently hired 3rd party companies in the past two years or so to review (and seemingly reject PET scans under many circumstance such as AXUMIN, CHOLINE due to the cost of the scans)

You cannot communicate with these companies yourself, your doctor may be able to, but not you.

Your BCBS will point to the invisible company that denyed you, not them.

So you then have to appeal thru BCBS or whatever your insurance company is and go through that process which is intended to be long and drawn out. All to slow you down, wear you out, hope you give up, and save them money.

Guess I wanted to rant a bit here but also let people know what to expect dealing with nuclear medicine scans and insurance.

Muffin2019 profile image
Muffin2019 in reply toTJGuy

Thank you for the information, will keep the listing for future use.

Tall_Allen profile image
Tall_Allen in reply toMuffin2019

The FDA and Medicare have approved Ga68PSMA11 at UCLA and UCSF and Pylarify anywhere. Private insurance lags but will come around eventually- they did for Axumin (recurrent only). Meanwhile, all you can do is appeal.

BruceSF profile image
BruceSF in reply toTJGuy

TJGuy, you mentioned the FDA approved the Gallium-68 PSMA PET scan at UCSF and UCLA last December. However, the FDA also approved the Pylarify PSMA PET scan last May, and Pylarify is not restricted to any specific locations. There’s a number on the Pylarify.com website that you can call to see who is offering the test near you.

Grumpyswife profile image
Grumpyswife in reply toTJGuy

I remember when BCBS was the best insurance company. I wonder which ones are better now.

Muffin2019 profile image
Muffin2019 in reply toGrumpyswife

My mom and I signed up for AARP United Healthcare had been the best for me for the last 5 years, never denied any treatments

Cancer2x profile image
Cancer2x

My MedOnc in Boston at DFCI said they do have the PSMA scan there. I assume it is Pylarify. Already had an Axumin scan for my climbing PSA - NO bill for that yet! Medicare and a BCBS Supplement must have covered it.

Don’t know if the VA here has it yet, but ya know- it’s the VA. Would rather pay myself.

Lieto55 profile image
Lieto55 in reply toCancer2x

I'm using the VA Palo Alto and it's been incredibly state of the art for RARP and overall healthcare. Started the ADT (Eligard/Bicaludimide) in Sept, and will be adding Zytiga in December. They farmed out the IMRT to Stanford South Bay, and I was able to get the GA68 PSMA through UCSF. Combination of VA, VA authorizations, Tricare for Life, and Medicare. I got lucky, discovering PCa in this environment.

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