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18F-DCFPyl trial - debating about it

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Posted 5/25/2019 12:09 AM (GMT 0)
I have been standing in line to get into this trial, but now and considering against it.
It is supposed to be more sensitive than most scans these days, I am at a point that a bone scan and Axumin is not showing anything yet... but am sure it's somewhere. My plan is to spot radiate it as soon as I find something to delay the need for HRT.

The thing about the trial is... they insist that you agree to a biopsy at the site they find if they find a spot. For example, if they find a hot lymph node, they will needle biopsy it. Can you just remove it? No, just biopsy. If they would remove the darn thing I would be game. I am not eager to find a spot that is risky near some organ, etc. and they insist on running a needle in there.

So, my thinking is I can pay for a Ga PET scan nearby (UCLA) for something like $2800 and have the choice as to what to do about it. I've put the funds into a medical health spending account so I'm prepared to do that.

Anyone else go through similar deliberations? Thoughts?
Jeff
Posted 5/25/2019 11:30 AM (GMT 0)
Often there are mets that a needle can reach, but that can not safely be removed. Sometimes these can be radiated but not removed for the reason you state. Some Mets may end up in places that can neither be removed or radiated. I would do whatever I and my doctors thought was best given the circumstances.

When you had salvage radiation were the pelvic nodes radiated? Today’s protocol would have started SRT earlier, increased the Gy dose to the mid 70’s and likely included the nodes. So you could possibly have more radiation to the area particularly since it has been nearly 10 years since you were radiated. But without first finding some evidence of Mets, that could just be a shot in the dark. And if you find evidence in other areas, the you have to do spot radiation.

I assume the reason to biopsy is to confirm whatever suspicious reading is actually a PCa met. Just like with the initial diagnosis, no scan can conclude a suspicious spot is, or is not, cancer. They don’t want to be guessing and they need scientific confirmation of the scan results. Otherwise the study can’t reach valid and reliable scientific conclusions.
Posted 5/25/2019 2:37 PM (GMT 0)
I entered into a clinical study using the same scan as you are considering August/2018 with a PSA =1.17. 2positve Presacral nodes were identified. Surgeon said it would be difficult to remove due to the small size and location of the nodes.Recomended radiation and ADT. Radiated the prostate bed and focused on the nodes. As part of the study, you can get another scan within 3 years of the first one. I will wait until PSA rises to a level where a scan will identify more cancer if any.
Dave
Posted 5/26/2019 1:18 AM (GMT 0)
They only radiated the prostate bed for me. I am guessing that aside from confirming cancer, they might want to analyze for type as well. That might be of benefit to me, I'm just not that crazy to go through any more procedures or radiation than I need to. My PSA isn't rising rapidly - my radiation oncologist said that because of that it wasn't urgent to pay for a scan. I will definitely have one before the end of the year though.
Posted 5/31/2019 1:01 PM (GMT 0)
Don’t worry about the biopsy. I was told when I did the same test that you need to agree in writing to the biopsy but also was told by the same people that no one can force you to do anything. So, no worries. If you think you want the test, then you can do the test.
Posted 5/31/2019 4:24 PM (GMT 0)
Thanks, AK
I may go ahead with it then.
Posted 6/7/2019 4:56 PM (GMT 0)
Just an update on the trial - Not sure where they manufacture the chemical for injection, but it must be in the breadbasket of the nation - plant was flooded and now the doses are unavailable for a short while. Will make folks on the waiting list like myself wait longer.
Jeff
Posted 8/10/2019 2:26 PM (GMT 0)
Hi Im

Wondering if you got into the trial, whether you have any results. I am newly diagnosed, low PSA (3.16 pre ADT) with high Gleasons (8, 9, 10). Recent CT and bonescan both negative but that doesn't preclude micromets being in bones etc. Presently considering surgery vs EBRT + BT + ADT. I want to get PET in deciding treatment. I'm considering a similar trial but I'm concerned that my low PSA will make any mets unseen by the 18F DCF.... .

Thanks
Posted 8/10/2019 4:26 PM (GMT 0)
PSMA PET finds more cancer than Axumin

A PSMA PET scan (Ga-68-PSMA-11) detected more sites of cancer than an Axumin PET scan in the same recurrent patients. This prospective clinical trial was conducted among 50 men at UCLA in 2018. All men had post-prostatectomy PSA from 0.2- 2.0 ng/ml. The Calais et al. findings are summarized in the following table:

Ga-68-PSMA-11
Axumin
Detected - % of patients
56%
26%
Prostate bed
14%
18%
Pelvic lymph nodes
38%
8%
Extra-pelvic lesions
16%
0%

The two scans performed equally well at detecting recurrence in the prostate bed, but the PSMA PET scan was able to detect more cancerous pelvic lymph nodes and non-regional metastases. The surprising result is that more recurrences are attributable to pelvic lymph nodes (stage N1) or to extra-pelvic metastases (stage M) than to cancer in the prostate bed. If this is true of all recurrent men, it indicates that salvage whole pelvic radiation is usually preferred over salvage prostate bed radiation. We saw (see this link) that salvage whole pelvic radiation improved progression-free survival compared to salvage prostate bed-only radiation. But in that SPPORT trial, the authors noted that the improvement did not hold up at low PSAs. Even the best PSMA PET/MRI has a tumor size detection limit of about 4 mm. If cancer in the pelvic lymph nodes is still curable, it may be necessary to treat cancer while it is still undetectable.

The detection rate by PSA was as follows, but is based on small numbers of patients in each PSA group. The differences in the detection rates are statistically significant for PSAs over 0.5:

PSA (ng/ml)
Ga-68-PSMA-11
Axumin
0.2-0.5 (n=26)
46%
27%
0.51-1.00(n=18)
67%
28%
1.01-2.00(n=6)
67%
17%

The other PSMA-based PET scan, DCFPyL, has completed recruiting in some locations.
They will be submitting a new drug application to the FDA within the next few days, and if all goes well, FDA approval can be expected in about 9 months.
Posted 8/12/2019 3:24 PM (GMT 0)
Marv, I decided on the Ga PSMA scan at UCLA, scheduled for this month. The 18f scan was getting too hard to orchestrate across the country. I am in SD so the scan is a short train ride up the coast. I'll report results back, since I am in the category Gary just referenced: axumin scan found nothing.
Jeff
Posted 8/12/2019 3:30 PM (GMT 0)
Good decision!
And thanks for keeping us 'in the loop'.
Posted 8/12/2019 7:38 PM (GMT 0)
Gary and Im and all who have responded

Thanks for lots of information, recommendations, etc.

One of the questions I have for Hopkins this Friday is whether there is any correlation between low pre-treatment PSA with high Gleason and subsequent discovery (or lack thereof) of mets.

Waiting for results of MRI Thursday to get better sense of size, shape of tumor. Biopsy found it mostly on right side (right mid and right lateral mid), a small bit in the left apex (.02 mm or 1% of one core). Wondering if, assuming size/shape of tumor is favorable to it, surgery with lymph node biopsy and salvage EBRT to pelvis would be favorable to EBRT + BT + ADT.

Or would rads plus chemo (even lacking evidence of mets) give better long-term prognosis. Or should I consider chemo regardless of whether we do surgery or rads.

Thanks again.
Posted 8/14/2019 10:39 AM (GMT 0)
Marv, there are quite a few different variants of PCa, and for some PSA is not a good indicator of progression. I would be asking the doc in these cases what the best gauges are for treatment success, etc.
Wishing you well
Jeff
Posted 8/18/2019 1:42 PM (GMT 0)
Don't know if folks here are following my other thread so will post brief update here.

Had Hopkins appointment Friday and I don't qualify for any PET clinical trials since I am already on ADT. They had same findings and recommendations as local urologist - don't recommend surgery, IMRT and ADT are recommended. BT may not be recommended because of my long history of low flow; more study would be required.

Records provided Hopkins by my primary care doc included a PSA test I wasn't aware of, from 12/18/2018 when I had physical with routine blood work. First appointment with this doc as my old doc had just retired. PSA then was 2.8.

Appointment next week with local rad onc at facility less than 10 miles away. This doc does IGRT/IMRT and BT with seeds. Travel much more attractive than to DC or Baltimore for IMRT. Ten minutes with minimal traffic vs 2 hours each way with nasty traffic.

Don't have report for MRI yet but Hopkins doc put it up on the screen and pointed to asymmetry that he suspects is the tumor. It is about 0.5 inch in diameter on right side and extends a bit beyond the "envelope" of the prostate.

Getting lots of info and suggestions at my thread (Newby with GS 10 but PSA 3.16). I won't post at as much or often as there unless replies here indicate I should. I am subscribed to this thread so get notices of new postings.

Thanks for all the info, encouragement, support.
Posted 8/23/2019 2:36 AM (GMT 0)
Finally got my 68Ga PET/CT scan at UCLA yesterday.
Surprised that they found no tumors!! I am still undetectable despite the 1.98 PSA.
I guess that is good news, but I feel like my $2600 might have been better used. I see both my Uro Oncologist and Rad Oncologist next month. I am inclined to get another Axumin scan in the future (depending on when the docs say I should) since it is covered. The PSMA scan is about a year away from FDA approval (that is what the UCLA doc said). For now, I am staying off the HT and will watch my PSA, which is on an 8 month doubling rate. I'm curious about others at a PSA of 2 post-surgery - were you detectable or undetectable??
Jeff
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