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Hi all,
Thanks for the input. I will have to look into these other drug options.
Now, to answer @brianjarvis :
—> what % of the 3+4 was “4”? one mention of 25-30% and another of 40-45%
—> did the MRI or biopsy report mention anything about cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma? There is mention of "perineural invasion"
—> what did the pre-treatment PSMA PET scan show?
- Prostate and prostate bed: SUV 4.8
- adjacent Lymph notes: SUV 7, 4.1, 4.2
- T5 rib : SUV 3.6
- T8 rib : SUV 3.3
- T3 rib: SUV 3.0
—> what did the pre-treatment biomarker (genomic) test show? I confess that I don't know if I have that.
—> what did the genetic (germline) test show? Haven't had one
(Those tests may have provided some insight into whether something more serious than a typical 3+4 was lurking unseen.)
—> What are the SUVmax scores of the lesions from the recent PSMA PET scan? See above.
I know we shouldn't look back but it seems that a PET at diagnosis would have been helpful. The radiation doc said that this isn't standard.
Replies to "Hi all, Thanks for the input. I will have to look into these other drug options...."
@damonk The radiation oncologist is correct, a PSMA PET scan isn’t standard at initial diagnosis for a 3+4. But, you had such borderline or missing numbers - 40%-45% “4” in that 3+4 might very well have been a 4+3 (if a 2nd opinion had looked at it), perineural invasion increased the risk, no biomarker (genomic) test done, no genetic (germline) test done….. It was just begging for a PSMA PET scan to be done.
Anyway, that’s now all in the past. Looking forward, it’s best to ensure that every relevant & available diagnostic tool is used so that you can make a thoroughly informed decision as to what next.
With your Eligard & Abiraterone/Prednisone regimen, what’s their plan to kill this thing?
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@damonk
With the number of metastasis you have some doctors would want you on triplet therapy (chemo included). They don’t like zapping more than five metastasis, and it looks like you may have more based on the SUV’s.
Abiraterone is recommended as the first drug to use, And it is supposed to be a good compliment to chemo. As others have said, the lutamides Are a lot easier on the body.
I would want to ask the doctor why they’re only going to put you on hormone meds when you have so many metastasis. Yes, ADT and abiraterone Will shrink the metastasis and stop them from growing, but it’s unlikely to eliminate them, It’s just leaving them for later. In my case, Abbie Only kept my PSA undetectable one month out of 2 1/2 years. I had PSA tests every month. After I stopped, Abbie, I had a metastasis in my spine, Maybe that wasn’t the right drug for me to start with. Make sure your PSA is staying undetectable while on the two drugs.
I would definitely want to get a second opinion from another center of excellence. Is just getting on the drugs, the correct treatment.
As for getting on abiraterone, That drug is pretty hard on the heart. I was on it for 2 1/2 years and it gave me high blood pressure and four afib Events. It did give me an extra 2 1/2 years before I went on Darolutamide Which has kept me undetectable for the last 28 months. The thing is these drugs only work for so long before they fail. I’m pretty sure if they had put me on a lutamide First, it would have failed before 5 1/2 years had gone by. Was it worth the issues that Abbie caused, Well, maybe it did extend my life. If you have any heart issues, you really need to talk to your doctor about not getting on Abbie.