18F-DCFPyL PET/CT at NiH: I’ve read on... - Advanced Prostate...

Advanced Prostate Cancer
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18F-DCFPyL PET/CT at NiH

Portugal-2
Portugal-2

I’ve read on other posts that this is more sensitive a test than the Axium.

Also, that there is no charge for it at NIH.

I would be so grateful for the contact information for getting this test done. NIH is drivable and I can’t afford to pay out of pocket.

Thanks again!

Also, any recommendation for RO at U of P or Cooper Hospital Camden Md Anderson or South Jersey. Need to be as close to work as possible.

Trying to make good choices to keep working and staying alive sucks!! This website is amazing and your replies to my questions have been so helpful! Thank you all!!

23 Replies
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There is a waiting list of several months:

clinicaltrials.gov/ct2/show...

The following has begun recruiting Yale so far and will be offered at UOP:

clinicaltrials.gov/ct2/show...

You are amazing TA!!!!! What a god send!! I’ve just emailed the contact at U of P. I will try to call them on Monday as well. I feel so grateful to you for all your information and quick response. I honestly sit here so depressed and frustrated to keep all the balls ( no pun intended) juggling in my life. Thank you again!!!

shueswim
shueswim
in reply to Tall_Allen

Thanks for the tip about the trial up at Yale. I just received my Axumin results and nothing shows at my current PSA of 1.7 (PSADT of 2 months since BCR in September ‘18). I contacted them today and they called me within 20 minutes. They can scan me within 2 weeks. I’ll consult with my MO on Tuesday but I don’t see the downside to this minimal delay in systemic treatment. Earlier Dr. Eisenberger at JH had recommended waiting until my PSA hit 10. A visit to Dr. Matthew Smith at MGH yielded a different recommendation - starting earlier - more like 2...which I’ll likely hit by the end of this month. I’m more inclined to follow that advice and with the quick turnaround time at Yale it appears that I can get the scan done without assuming too much risk.

This is a list of all the DCFPyl trials in the USA.

clinicaltrials.gov/ct2/resu...

Portugal-2
Portugal-2
in reply to tango65

Thank you Tango65!!

rowboattom
rowboattom
in reply to tango65

Thank you Tango65

I have applied for one at UCSF\

Would not have known but for you

Many Thanks

Contact Yolanda McKinney at NIH

ymckinney@mail.nih.gov

Phone-240-760-6095

to find out whether you qualify. If you get on the study, NIH pays your travel and hotel expenses.

I applied in August and got appointment end of October.

Portugal-2
Portugal-2
in reply to dac500

Thank you!! Thank you!!

do u have prostrate cancer u were dx? if not then why these tests

charlie

Cancer PSA recurrence 5yrs after Davinci robotic prostrate removal. .2 6 months ago and up to .6 now so urologist recommendation of radiation. Would like to be more specific so that radiation may be more targeted if I decide to do it. Need to work and trying to minimize side effects if possible so I can continue to work.

It appears that you have a PSADT less than six months. In my case PSADT was less than 2 months increasing from 0.2 in April to 4.48 in November. CT and MRI did not find anything. But the NIH PET/CT scan found strong and very strong uptakes from about 10 lymph nodes. Biopsy of the perirectal lymph node (performed under the NIH study) confirmed metastatic prostate cancer.

One condition of the study is that you must have a bone scan and a CT. If you get a positive response from NIH, you need to get these done quickly.

Instead of depending solely on a urologist, it is advisable to consult a medical oncologist specializing in prostate cancer before any treatment decision.

George71
George71
in reply to dac500

dac500,

Did you get your pelvic lymph nodes radiated? what is the resluts?

dac500
dac500
in reply to George71

I had radiation twice. First in 2011 for cancer inside the prostate with seed implant. Then in Jan 2017 for recurrence in extra-capsular mass with cyberknife. The lymph nodes showing positive in scan are not in the same area. Moreover, there could be other microscopic metastasis not showing up in the scan. In view of this and my history of radiation treatments. further radiation may not be helpful. So, instead of any local treatment with radiation I opted for ADT for systemic disease.

Portugal-2
Portugal-2
in reply to George71

No radiation at all!

shueswim
shueswim
in reply to dac500

We have similar PSADTs. I’m currently at 1.9 months having progressed from 0.5 in September to 1.5 in December. In November I looked into a number of the PSMA scan trials. Several were open only to existing patients within the institution conducting the trial. Finally I had success getting on the list at the NIH...but not until March/April.

In the meantime, I’m scheduled for an Axumin scan on 1/8/19. If that scan is “successful” in disclosing the location(s) of the recurrence then I’ll have myself removed from the waiting list. If it doesn’t, I MAY remain on the list depending on my MO’s advice with respect to when systematic treatment should begin. To qualify for the trial you must not be currently on ADT. Dr. Mario Eisenberger at JH advises waiting until the PSA hits 10 (probably May at current rate). Dr. Matthew Smith at Mass. General advises treatment before my March/April PSMA scan date. So...if the Axumin doesn’t do the trick I’ll have a decision to make with the help of my local MO. BTW, my contact at the NIH is aware and supportive of this contingency strategy. There was also no mention of a required MRI in advance of the PSMA scan. Based on your comment I’ll have to explore that further if that’s the path I follow.

dac500
dac500
in reply to shueswim

What is required is a bone scan and CT. An MRI is performed as part of the study. If I were you, I would wait for the NIH scan before any treatment decision. The Axumin scan might miss something that the 18F-DCFPyL PET/CT would pick up. Whether you should still consider going ahead with the NIH scan will depend on the Axumin result. If it shows distant metastasis, early treatment may be advisable.

Portugal-2
Portugal-2
in reply to shueswim

Let me know how it goes because I’m the same boat! Good luck!

Portugal-2
Portugal-2
in reply to dac500

Thank you! I have had the bone and Ct scan done. Looking into NIH.

Ahk1
Ahk1
in reply to dac500

Dac500,

I applied for the NIH and they asked me to get 3 CT(chest, abdomen and pelvic) in addition to a bone scan. I am nervous about getting all these ct scans becuse of the radiation and also now I see that you have 10 LN, so I guess SBRT for you is out ? so I am thinking of just skipping all these scans and go directly to ADT. we know the BCR exists any ways. Your thought would be appreciated. Thanks

Dr. Kenneth James Pienta performed a 18F-DCFPyL PET/CT in a clinical trial at Johns Hopkins in Feb. 2018. My test results were PSMA-RADS-1A. Negative for metastasis. All my testing results at JH were negative for tumors. So after the bone scan, CT and two MRI scans in addition to the PET scan, my PSA went from undetectable to 1.4 prior to radiation. Undetectable PSA after radiation. While I don't want to discourage anyone, these tests are not 100% foolproof. Cancer is insidious and may still be lurking somewhere in my body.. Only time will tell. Seek quality treatment and have FAITH!!

Ahk1
Ahk1
in reply to Coupe31

This is my dilemma, I feel the same way. NO reasons for all these scans while we KNOW, the BCR exists anyways and I should go directly for ADT. what do you think?

Coupe31
Coupe31
in reply to Ahk1

I certainly would discuss this with your medical oncologist. Seem to me that a MRI and CT/PET should be all the imagining testing necessary. These test won’t find minuscule PC cells that may have spread to many distant sites. More testing is a confidence booster though expensive and sometimes not really needed. Sometimes after surgery and radiation, chemo is used before or in conjunction with ADT. Again, please rely on skilled doctors and a national recognized cancer hospital. GOOD LUCK!

From what I have read salvage prostate bed radiation is a 50/50. I was on the wrong side of the odds and 40 rounds did absolutely nothing good. A Mayo C11 choline scan later found it in my shoulder. One SBRT and it was gone. I'm not cured but it delayed further treatment by a year. Recommend a Pet scan if Bone and CT are negative. There are several good Pet choices but avoid Glucose. Most prostate cancer is fat / cholesterol driven and not sugar (glucose) driven.

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