Why hasn't MO recommended Provenge? Ideas? He has extensive bone mets (is that it?)Almost no pain. Also 2 questions - clinical trial and PET

[Barbara345]

Hi All,

I hope I'm not missing something important, but would like to know more about this. I'd like to understand more.

DESCRIPTION OF BARRY'S PC --- After docetaxel and enzalutamide failures, several consults plus our MO said Cabazitaxel is best option for husband Barry, who "failed" docetaxel and Xtandi. Therefore, he started Cabazitaxel last Tuesday plus Neulasta. So far no side effects -- hoping this continues. He has mcrpc diagnosed August, Gleason 9, very extensive bone mets throughout pelvis and spine (including neck), no indication of visceral mets, plus involvement in ribs and a spot in femur, maybe one in humerus. Small spot on skull showed on bone scan, not on CAT scan. After docetaxel failed and again after Xtandi failed, scans confirmed progression. I could easily see it when the MO showed them. PSA was doubling about every 3 weeks (last reading 35.5). He is in almost no pain and doesn't take any pain medication other than a very occasional 200 mg Advil. Appetite was down with Enzalutamide, better now.

On reading, maybe I'm wrong, but it looks to me like his general condition might indicate Provenge could work for him. The description says he should have no or minimal pain, and he doesn't. He has no known visceral involvement according to CT and bone scans.

He is getting genetic studies. A biopsy was taken Tuesday just before chemo, targeting the area of newer metastases, hopefully there will be enough material for Foundation One; he also got a liquid biopsy also by Foundation One (his oncologist uses that rather than Guardant 360). The liquid one was done because the previous biopsy sample didn't turn up cancer cells -- his bone was extremely hard. They're hoping, however, that this bone sample, in softer material, will work.

I've been reading up on immunotherapy, dendritic cell, CAR-T cells etc.

CLINICAL TRIALS question -- I also noticed a trial on Amgen-160 in New York City; other trials elsewhere,. Do you know of others in addition? Any opinions?

PET SCAN question ---- do you think it's time for one? If not, when would it be time? I want to make sure everything gets caught --- he's had repeated CT scans (chest, abdomen, head and neck) and bone scans so far.

Thanks, fellow fighters!

[Tall_Allen]

Why don't you ask his MO about Provenge?

Charles Drake at Columbia Presbyterian is running a few BiTE trials and a CAR-T trial that are tied to PSMA. Did he have an IHC analysis that showed how PSMA-avid he is? I would hold off on a PET scan because it may be required for those clinical trials.

[Barbara345 in reply to Tall_Allen]

Here it is -- IHC ----- The bone biopsy report, which I got 5 minutes ago, said there was an "immunohistochemical stain showing the tumor cells positive for pan-cytokeratin and nkx3.1." There was no mention of PSMA.

I understand those two levels indicate metastatic pc, but no words on PSMA.

NOTE:__ I'm concerned the IHC should have shown PSMA too --- am I right or wrong? Anything else that should have been looked at?

QUESTION: I'm wondering if I should have sample sent elsewhere. I can arrange for this if needed.

I'm happy and relieved that the biopsy yielded enough sample to be sent to Foundation One, as the previous attempt didn't.

Of course I'll speak to MO. I do value your insights and those of others here.

Thanks for all your help, and I hope you enjoy your day.

[Tall_Allen in reply to Barbara345]

NKX3.1 means the metastasis came from the prostate; it also means there is at least some hormone sensitivity. Pancytokeratins confirms its epithelial origin.Is that all they tested for?

There also had to be a histological analysis - what did it say?

[Barbara345 in reply to Tall_Allen]

Thanks, There' s absolutely nothing in the report I got. That's why I'm wondering why they didn't report (or test) for anything concerning PSMA, and why I replied to you. I want tofind out asap anything concerning eligibility for treatments/trials.

As I stated, this is why I'm wondering if I should have the sample sent elsewhere. I already put out "feelers" a while ago for just-in-case.

The first thing I'll do about this in the am is call the lab and make sure there isn't anything else that wasn't on the chart.

Thanks,

Barbara

PS -- It's interesting it reported some hormone sensitivity as the Xtandi did nothing. I guess it would be worse if we didn't have the Lupron still going....

[Tall_Allen in reply to Barbara345]

That's why one always stays on Lupron even after castration resistance.

The pathologist only tests for what your oncologist asks for. You should have discussed this with your oncologist beforehand. I don't know if there is enough tissue. If there is, a good choice for a second opinion would be Dr. Wong at Duke. IMHO, a good histological analysis is the primary test done on biopsy tissue - I can't imagine they wouldn't have done that- someone looked at it under a microscope. It is also important to know what the negative IHC results were. I believe this is potentially more useful than any genomic analysis.

[Barbara345 in reply to Tall_Allen]

Makes sense. I didn't know this at the time or I would have asked him. Thanks for recommending Dr. Wong. I heard Dr. Epstein might also be a good choice for a pathology report. --- I think there may be enough as we asked (and they got) two cores, because of the problem with the previous biopsy (although some is going to Foundation One). Although the people I consulted with at MSK, Cleveland and Cornell-Weill all recommended Barry continue treatment here, and the MO here honors the consulting we are getting, I'm starting to wonder if after Barry's chemo we should consider "jumping ship" --- it's one thing while his cancer was hormone sensitive, but another after it got resistant so soon and the treatments didn't work.

As said before, I'll call the lab tomorrow and see if they checked for more than what I saw on the report --- perhaps all will be well, although I doubt it. I'll certainly post here as to what I find out.

[Tall_Allen in reply to Barbara345]

Epstein is for a prostate pathology report, not a metastasis histology/IHC analysis. These are very different specialties.

[Barbara345 in reply to Tall_Allen]

Thank you, I didn't realize different people handled these. I heard about Dr. Epstein when I was exploring a second opinion on Barry's prostate biopsy after his diagnosis last August. I'll see what the lab tells me tomorrow....of course I want the best for Barry and am willing to contact Dr. Wong if the lab hasn't done the job -- whatever it takes.

[Barbara345 in reply to Tall_Allen]

I just checked the Duke website. Dr. Wong is not listed on the consultant list, although there is a Dr. Wang on the medical school pathology faculty (not listed for consultations).

Does he do the kind of consultation Barry would need, although not listed?

Other pathologists listed are: Dr. Diana Cardona for bone and soft tissue pathology, but there is no mention of bone metastases. Dr Wen Chi Foo is listed for genitourinary and Dr. Claudia Jones for cytopathology. None of their descriptions seem to fit what Barry would look for, unless I'm missing something.

Thanks again!

[Tall_Allen in reply to Barbara345]

Sorry- Wang is correct:

pathology.duke.edu/research...

Your oncologist would request it.

[Barbara345 in reply to Tall_Allen]

Thank you. Would he be available to do this kind of consult even though the website only indicates he does research?

[Tall_Allen in reply to Barbara345]

He does this. Ask your oncologist to reach out to him.

[Barbara345 in reply to Tall_Allen]

Thank you. I wouldn't have known this from the Duke staff listings. I'll check --- this certainly is important.

[Barbara345 in reply to Tall_Allen]

Argggh! The oncologist just informed me the pathologist doesn't test for PSMA because there is no FDA approved treatment involving this. He didn't mention trials. He said we could send sample for a second opinion if we wanted to.

I'm not happy at all, but if there's enough sample I'll get it sent out if the pathologist here won't do it. (I'll try to speak to the pathologist directly as well if they'll let me).

I'm glad to be researching and learning through this board and elsewhere ---- thanks again. I've always known it matters to be pro-active.

[Tall_Allen in reply to Barbara345]

Ask him to stain for PSMA, DLL3, chromogranin A, synaptophysin, neuronal-specific enolase, and somatostatin (in that order of preference, depending on how much tissue there is). His histological analysis is even more important. I agree with you that finding the right clinical trials is as important as available/approved therapies. It is also useful in finding therapies to rule out as well as ones to rule in.

[Barbara345 in reply to Tall_Allen]

Thanks. Do you have any “connections” to Dr. Wang? I managed to persuade the secretary to let me speak with the pathologist, who was nice but said they don’t have what they need to check for the things you suggested, She a encouraged me to have the samples sent elsewhere and also thought Duke was a good place.

She said I needed to contact Dr. Wang and see if he is willing to do the pathology. If he is, she could send him what she called the “block.” She could also send the slides. She also said the chair of the Duke pathology dept was good if it didn’t work out with Dr Wang. His name sounded like Huang.

She wasn’t sure there was enough material but was willing to send what she had.

[Tall_Allen in reply to Barbara345]

I haven't worked with him. This is something your oncologist would approach him with.

[Barbara345 in reply to Tall_Allen]

Thanks! I was just curious if you knew him --- I wasn't requesting that you contact him. I know that we would ask the oncologist. Have a good night. Tomorrow I'll follow up. Tonight, a good night's rest....

[HopingForTheBest1]

Despite a difference of opinion by my doctors, I asked for and got Provenge treatment in March 2019. Minimal side effects. Very expensive, but fully covered by my BCBS insurance. MY EOB statements showed cost over $200k.

I want to be able to make use of as much available ammunition in treating and fighting my APC. Recent studies have shown this treatment to be more effective than previously known, especially when done sooner than later in the treatment process. While it may not affect or lower PSA, it should extend overall survival by boosting the immune system.

[EdBar]

My MO’s have not recommended it either. When I pressed Dr. Sartor about it during my last visit he was skeptical of it. Now that I am castrate resistant, which was discovered after a brief Xtandi vacation, I an planning to get Provenge, my local MO supports it once that was discovered. Just gonna wait for the COVID situation to settle down.

It is my understanding that it works best if you have a PSA or less than 5, that’s where the greatest survival benefit is realized.

Ed

[Barbara345]

Hi, thanks! For the record, Barry’s last PSA was 35. Since his diagnosis, his PSA has never been less than 4. It started at 60, dropped briefly to 4.5 when treated with Lupron and first docetaxel, went up to 15 , docetaxel stopped after 5th cycle (scan showed progression) and xtandi started, brief drop and then quickly up to 35. New scan showed more progression and increased uptake and here we are. Blood test tomorrow after 1week cabazitaxel.

[Barbara345]

I’ll ask about IHC . He got both liquid and bone biopsy , waiting for results. Previous biopsy failed because of bone hardness; this is why they did both biopsies, to make sure genetic study can be done.

Was hoping to contact Dr Drake as he was recommended. — previously consulted with Dr Tagawa , I have some materials on Amgen 160 trial, not sure if he qualifies. Not sure if other BITE trials. Consults at Cleveland Clinic and MSK never mentioned Provenge and said there were no appropriate clinical trials now and recomded him to do Cabizataxel. With PSA from about 16 to 35 in less than 3weeks it seemed right to start the chemo right away, but I want to check out the options to get him whatever he needs to survive a long time,

Thanks friends. If anyone ever needs help from me please ask.

[Barbara345 in reply to Barbara345]

Oh, one more question— do MO s at MSK tell people about trials at Cornell Weill and vice versa?

[Magnus1964]

I had to ask for Provenge. My Research doctor was all set to send me out for chemotherapy until I asked about Provenge.

[Yank66]

My husband begins Provenge this Friday. Our MO told us there is a small window when Provenge is effective- small amount of Disease (Mets) and castrate resistant. He also told us that it couldn’t be used after Xtandi. We are hopeful it will be effective.

[Barbara345 in reply to Yank66]

Thanks! Unfortunately, by the time he was diagnosed he had a large amount of bone metastasis, although he was feeling fine, and still is. The other requirement for Provenge was minimal or no pain --- he still meets that. I wanted to find out if this gave him still an opportunity....

[Hidden in reply to Yank66]

Interesting. My husband starts Provenge tomorrow and he has been through Zytiga and Xtandi. He is still on Xtandi and PSA has risen to 6.3. Was there a reason your doc said Provenge can't be used after Xtandi?

[Yank66 in reply to Hidden]

That is interesting. We just accepted the chain of treatment. So I don’t know why.

[j-o-h-n]

Question: How old is Barry? Give him my regards............

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/11/2020 5:50 PM DST

[Barbara345]

As a note --- MO mentioned that he didn't recommend Provenge because Barry's cancer is growing very quickly, and PSA is doubling quickly. As far as future trials --- we're definitely investigating. In the meantime Cabazitaxel is what he's got --- first blood test later today. We do hope it works (I know it doesn't always show right away). Thanks!