Not so sure I should be on Erleada

[swwags]

I wrote a lengthy post about my second cancer you can read about here:

healthunlocked.com/advanced...

This post is only addressing my Testosterone levels and PSA

5/1 I skipped my Lupron injection.

8/30 - mayo my PSA was undetectable and but scan showed some lesions. My testosterone ad risen from <7 to 11.

Results from the scan (only related to PCA) were:

1) Additional focus of choline uptake in the sternum near the sternomanubrial joint is more prominent on prior exam and is also worrisome for metastasis. (SUV max is 1.6 on this lesion.)

2. A right internal mammary lymph node has increased in size with low level choline uptake in aupper mediastinal lymph node is newly choline avid. While these may be reactive, given the priordisease in the chest, findings are worrisome for metastasis.

9/2 Lupron shot and testosterone was 8.5

10/28 - Oncologist visit again. Regarding PCA - I tell him my body feels different as I'm not having hot flashes anymore, voice is lowering again, hair thinning again. I wondered out loud if I got a a bad batch of Lupron. He didn't think so but no way to know so he orders another testosterone test and PSA. He also orders Erleada as he thinks I may be castrate resistant but not certain. 

10/28 lab results - PSA remains undetectable. Testosterone is back <7. Free Testosterone noted as "low".

Erleada arrives and I took my first two doses 11/10 and 11/11. OK so here's where my question comes in. It "appears to me" that the Lupron did its job and suppressed my testosterone once again based on the 10/28 lab results.

So do I really need the Erleada?

I will of course ask my Oncologist again at the end of the month. I'm also going to ask why the jump past Zytiga, which I thought would be the next progression? Erleada has some harsh side effects, appears to me harsher than Darolutamide or Enzalutamide.

I plan to follow my oncologist orders until I meet at the end of November. That will give me close to a month on the Erleada/Lupron combo and I am getting another C11 Choline Pet in week 1 of December so I'm interested to see if there is an effect on the lymph nodes and sternum. Also will be getting a PSMA but that will come later toward year end.

Hope this wasn't too long of a read but I wanted to parse out the other cancer and focus on PCA here.

Thoughts? Jokes? Insults? As always, I appreciate input.

[tango65]

There is radiographic progression of the cancer and they indicated apalutamide. You could try to get zytiga or darolutamide instead of apalutamide.

Zytiga is approved for metastatic CRPC, darolutamide is approved for mCSPC and for non mCRPC. It is possible your MO could get approval for darolutamide.

Are you going to Mayo Clinic? I am surprise they continue doing the choline PET/CT when the PSMA PET/CT are available and they are much more sensitive.

You should consider to discuss about a direct biopsy of the cancer to do genetic, IHC and histological studies since apparently it progressed without major change in the PSA.

You should request Provenge.

[swwags in reply to tango65]

Thank you for the concise explanation Tango65 and shame on me for not recognizing the same. I did in fact get a biopsy of the humerous which turned out to be blood cancer. Surgeon was originally going to do an ebus but determined it was too risky. As it turns out, had they not done the biopsy and FDG scan, my blood cancer would have been missed.

So yes it's on my list following the upcoming C11 Choline scan and subsequent PSMA which will be done @ MNOncology.

Kwon will only order C11 Choline but I have a Radiology Oncologist here in the Twin Cities who indicated PSMA is the route to take. Going forward, I may not continue going to the Mayo. I dunno for certain. Right now I want my two oncologists and Urologist all seeing the same thing.

Prior to the biopsy, and genetic tests, my oncologist was thinking about Provenge but that went out the window with the second DX.

[tango65 in reply to swwags]

I am sorry to hear about the second cancer. Very difficult situation.Best of luck with the studies and treatments.

[Tall_Allen]

Lupron alone is obviously not enough, as you may (the choline uptake is very low- they may be false positives) be seeing progression with it. Erleada is great stuff and everyone reacts differently.

[swwags in reply to Tall_Allen]

Thank you TA. I'm hoping the PSMA scan will prove that out. (C11 vs PSMA)

[Tall_Allen in reply to swwags]

For bone metastases, NaF18 is twice as sensitive as PSMA PET. The problem with switching to a more sensitive scan is that you don't know if the metastases were always there or if they are new.

[Gabby643]

thanks T A

[swwags]

UPDATE to my original post and back to same question. See the first post for details - what has since transpired is another C-11 Choline scan on 12/3/22 with additional interpretations as follows. Note that I have removed two notations addressing the lesions already proven related to my plasmacytoma:

"A site of activity in the sternum suggestive of a metastasis has a current SUV maximum of 3.8 versus 1.6 on 08/30/2022.

A probable lesion in the left posterior aspect of L2 has a current SUV maximum of 3.9 versus 2.3 on 08/30/2022.

A questionable lesion in the left side of the sacrum has a current SUV maximum of 2.2 versus 1.7 on 08/30/2022.

There is subtle activity in the left scapula with current SUV maximum of 1.6 versus 1.2 on 08/30/2022; this is of questionable significance.

Nonspecific right axillary lymph nodes show intervally increased uptake. For example, 3 nodes have current SUV maximums of 2.5, 2.6, 2.6 versus 0.9, 0.9, 0.9 respectively on 08/30/2022.

The previously noted right internal mammary node again has an SUV maximum of 1.1.

An upper retroperitoneal node is again too close to the abdominal viscera to measure the SUV."

End:

Based on this information, Kwon called my Oncologist as he was not confident in treating me until PCA was confirmed/eliminated.

12/28/22 - PSMA Pylarify F18 scan findings:

No convincing evidence of radio tracer positive recurrent or metastatic prostate cancer. Minimal radio tracer uptake associated with osseous lesions in the right inferior scapula and mid humerus (which corresponds with biopsy proven myeloma) which may represent a combination myeloma and/or post treatment change.

Consult with Oncologist on 12/30 - Prostate cancer is not spreading an no evidence it was. Resume Myeloma tests in February as scheduled.

So again, I think back in August, Mayo made an informed diagnosis based on history that my disease progressed and in December wanted to treat me as castrate resistant (NON PSA Castrate Resistant Prostate Cancer), whereas the PSMA seems to be telling different story. Lastly, I asked my oncologist how do I reconcile the 2 scans in December and he said it's not reasonable to try. It could be plasmacytoma or merely "noise" .

Apologies for the long post but things are messy. Please be kind and note I otherwise feel fine😜

[swwags]

Today I met again with my Oncologist. My plasmacytoma is responding properly to radiation so I will discard discussion of that as it isn't PCA specific.

With regard to my PCA, he's indicated with great confidence, I am still in remission. I have not moved out of remission since Feb 2022. I am still mHSPC. 😀😀😀. It matters to me gents!

[swwags]

The reason this matters to me is that I'd been under the impression since February of 2022 that I was in remission and to suddenly "light up" a C-11 Pet Scan in August confused me so I've been persistent. The Mayo has been pushing Lutetium on me since then and I'm not convinced of its value overall but also never believed I was mCRPC and therefor, not meeting the SOC.

And with that gentlemen. I want to thank you all for your input and help as I've learned much from this site. Take care.