The Journey continues : Ten months ago... - Advanced Prostate...

Advanced Prostate Cancer

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The Journey continues

Presby profile image
13 Replies

Ten months ago after trying Docetaxel, Xtandi and just 2 cycles of Jevtana all since 2019, our oncologist said the only thing left to do was a clinical trial. We were referred to another cancer center that was a NCI center as the clinic we were at was not. A clinical trial was begun last August. Progress was being made but the company was looking for a better rate of decline in PSA and the trial was stopped in November. The new oncologist has been holding out for Lu-177 and in the meantime Zytiga was prescribed to maintain levels. Last week my husband had the PSMA scan. Today we received word that his levels were too low for the drug to be effective. We will meet next week to discuss another plan of action. I would appreciate any thoughts and ideas we could bring to the discussion.

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Presby
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13 Replies
Tall_Allen profile image
Tall_Allen

Has he had Xofigo?

Has he had any of his metastases biopsied? Any findings from histology, IHC, and genomics?

He may qualify for the following clinical trials:

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

Presby profile image
Presby in reply to Tall_Allen

He has not had Xofigo. Metastases have been biopsied and with the latest blood work, more genetic tests were done. I will ask about the trials you mentioned. Many thanks!

Tall_Allen profile image
Tall_Allen in reply to Presby

Xofigo will help with bone metastases. He can also take Provenge with it.

Presby profile image
Presby

That report was done at the first clinic and we did not get a copy. I assume it was passed along with the other records to the new clinic and will add that to my list of questions for next week.

DesertDaisy profile image
DesertDaisy in reply to Presby

Dwight's wife here. I would recommend you get a copy of the pathology report. I didn't realize my husband had ductal cancer until I read the report. The urologist, MO and RO never mentioned it to us.

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

Hope you dumped the UO MO and RO....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/10/2022 7:18 PM DST

addicted2cycling profile image
addicted2cycling in reply to j-o-h-n

Let's not forget about the BO that can easily be scrubbed away.

j-o-h-n profile image
j-o-h-n in reply to addicted2cycling

Hahahaha

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/10/2022 10:06 PM DST

Kevinski65 profile image
Kevinski65

When they gave your husband Xtandi, did they give him Lupron or degarilix or some other major androgen hormone blocker at the same time?

Presby profile image
Presby

He was taking Trelstar but the new clinic has changed that to Lipton. He also gets Xgeva.

Peace-to-you profile image
Peace-to-you

He could be a candidate for bipolar androgen therapy (BAT). My oncologist decided to try it post Jevtana and it’s working…at least for me.

MateoBeach profile image
MateoBeach

Yes , insist upon referral for Provenge treatments. It is non toxic and just takes a little time for the three cycles. Not chemo, it is an immune therapy. Can work synergistically with Xofigo if that is offered.

Also, celecoxib, the anti inflammatory, can be combined with his Xgeva for additional effect on bone mets.

What were the SUV values of lesions on his PSMA scan? You should have a copy of that and all pathology and scan reports. If there are mets that light up on PSMA scan and are concordant (match) on a different PET

Scan such as FDG or Axumen, then Lu-PSMA treatments might still be beneficial. Ask to have this reviewed at a Pluvicto treatment center. It is perfectly appropriate to question further and ask for 2nd expert opinion.

Finally, a personal trial of BAT (cyclic testosterone) even per the protocol outside of a trial, may be worth trying. You can quickly determine if it is helping. And it can be promptly stop it if he does not respond positively. So the downside risk, while not zero, appears to be low. He will likely need an MO who is familiar with this though. Many are not at this time.

Best of luck and kind regards. Paul (MB)

Presby profile image
Presby in reply to MateoBeach

Thank you for your insight and the thoughts of all who responded. We will bring forth all suggestions. In addition to our scheduled appointment with our MO next week, we also have one with the RO we were referred to. We intend to keep that meeting for a second opinion. Both doctors are at Pluvicto treatment centers and the RO has already given it to at least one other patient.

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