I had my 68 Ga-PSMA scan at UCLA last Tuesday. Got the report on thursday and it showed . . only two sites of cancer expressing PSMA: Both lymph nodes in the pelvis alongside the left iliac artery. Nothing in the prostate fossa (where I had RP and salvage EBRT in 2007. None in the bones or other organs. Very happy result as this condition is most favorable for both: 1) 177 Lu-PSMA treatment(s) and for 2) Stereotactic body Radiation therapy (SBRT) for targeting oligomets.
I will probably combine both. I have discussed with my MO yesterday and will review with Dr. Nat Lenzo of Theranostics Australia this coming week. My inclination is to do at least 2 cycles of the Lu-PSMA treatments and then follow this with SBRT here in Oregon. I am feeling very surprised and blessed/fortunate as I did not expect (but hoped for) such positive results.
Additionally I have been off hormonal treatments leading up to the scan for the past 6 weeks prior to the scan. I am feeling so alive and like my own self. For now anyway I am hopeful . . .
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MateoBeach
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I would urge you to consider instead salvage IMRT treatment of all your pelvic lymph nodes. You can be certain that the two iliac lymph nodes is not all there is.
Thanks T_A. It is a very good point. I will certainly discuss this when I have the RT consultation here. The SBRT has 98% clearance, without recurrence in the treated sites, if treated by at least 18 Gy or higher. But there is a high frequency of later recurrence in other sites (around 2/3 of patients for those with lesions identified by Ga-PSMA). So some broader (pelvic IMRT) and or general (Lu-PSMA), or combination of both, needs to be discussed.
Most probable you will not need SBRT if the first treatment is Lu 177 PSMA. I had many lymph nodes in the pelvis and abdomen. All the PSMA positive nodes became PSMA negative with only one Lu 177 PSMA treatment. GP24 had the same experience.
You need to consider that treatment with Lu 177 PSMA is experimental.
Whole pelvis radiation including lymph nodes up to the aorta bifurcation associated with short time ADT is a treatment which has been proven to offer the best progression free survival.
My PSA is 0.23 prior to the scan. The lymph nodes are just described as "sub-centimeter". One has intermediate PSMA expression of SUVmax 7.5. The other smaller one "faint to low PSMA. So I am exploring possible ways of increasing PSMA expression for optimizing treatment. Another reason why whole-pelvic IMRT may be the priority. Thanks for your concern.
I am thinking of when the time will come when I want to get the same scan, and it will be when PSA rises to same level. My radiation was to just the prostate and the seminal vesicles, leaving the lymph nodes and I am not sure why the radiation oncologist chose not to do the whole bed. Thank you.
No. They are not dormant. PSADT is less than 3 months, even though the value is still low currently after my bicalutamide / dutasteride regimen failed late 9 months ago.
I understand being off ADT...Had two episodes while off briefly....One, went flying forgot my plane...the other was cutting limbs out of a tree and climbed it , forgot the ladder...Carry on brother....
I have to agree with Tall Allen, you probably have more mets than can be seen by any scan. I had No 1 PsMa scan in 2016, when Psa went to 5 and ADT failed, so I had extra 31Gy IMRT using Calypso method for PG, after having 70Gy in 2010 and had 45Gy for first two mets in upper lymph nodes that showed up using "pencil beam" IMRT at the same time. I was put onto Cosadex, Psa went from 6 to 0.4, then began rising again and I doubt the salvation radiation did much. The PsMa scan in 2017 showed a lot more mets and in bones, so I had Zytiga, had 8 months suppression, then that failed, then had 5 chemo shots and that failed real bad, Psa went from 12 to 50 in 15 weeks, so then I went straight to 4 x Lu177 because the 4th PsMa scan showed many mets, all were PsMa avid. SUV or specific uptake value was high enough to make it likely Lu177 would work, so I began that last Nov, and Psa was 25 at start, and after 2 shots Psa hardly moved, but after No 4 last May its now 0.57, but I am also taking enzalutamide, supposed to work after chemo because chemo makes Pca respond where it would not, and increases PsMa expression. Now I have no clue what Psa would be if I didn't have enzalutamide. But dots are pleased, No6 PsMa tells docs my bone mets are healing up. no other worried right now.
But Pca will come up again most likely, and nobody knows if it would respond to another shot of Lu177, or maybe Ac225.
Its been a pleasure working with Dr Lenzo and his other Dr Macfarlane in Theranostics Australia and getting treatment at Waratah Hospital at Hurstville in Sydney. Top class care, nothing to fear, and very low side effects.
But expensive, about usd $27,000 including the PsMa scans.
Biggest bone mets were 1cm dia, one in femur and another in pelvis near right hip joint, plus countless others. But last scan could not see any new mets, and lymph nodes and organs are all clear. It does not mean Pca is not there, it means scans can't see mets because they are maybe less than 2mm dia.
So far so good, and if I had not got Lu177 I'd be real crook by now.
Australian Medicare does not refund a single cent for Lu177 and PsMa scans. But the enzalutamide is covered, costs usd $4:28 per month, ie, basically free.
There's a trial at St Vincents in Sydney for Lu177 + enzalutamide because a Professor Louise Emmett running the trial is fairly certain that giving enzalutamide with Lu177 will supercharge effect of Lu177. She got the grant from Govt last April maybe, could be still open maybe, not sure. Anyway, some trials are still being done with Lu177 + other chemicals in Oz.
Thank you so much for sharing this Patrick. Your journey has been so challenging and your persistence and courage through it all is inspiring. Very happy to read your endorsement of Theranostics AU, Drs. Lenzo and McFarlane. Are you Australian? Nice that you can access the lower medication costs there and possibly the enzalutamide + PSMA trial.
I have my consult with Na Lenzo on Wednesday to plan treatment possibilities. Simultaneously exploring whole pelvis IMRT possibly with targeted SBRT for the two visible mets. Since ADT enhances the effects of the whole-pelvis radiation (as per SPPORT), perhaps the enzalutamide (short term) could be used to enhance both the RT and Lu-PSMA treatments if I did both. (?)
Yes, I live in Canberra, the National Capital territory of Australia.
Its 300km south west of Sydney, so getting to Sydney for Lu177 treatment was fairly easy.
You should find Dr Lenzo is a well informed and on the ball doctor, and he'll assess whether or not you would get a benefit from Lu177. I know Lu177 seems to be giving me more time alive, and is maintaining a good QOL for immediate future, so hence my endorsement.
When I wanted to begin Lu177, the only free trial was for Lu177 or Cabazataxel, and I feared that I would be assigned to Cab, not Lu177, and if Cab failed there was no automatic transfer to Lu177, and I saw that I risked inserting a delay, ie, dithering around before getting what I thought would work because Docetaxel had not worked. So no trial for me.
The present trial in Sydney at St Vincents would be free, but difficult to attend if you live in US, and you may not be eligible. I don't know what all the rules are. With Dr Lenzo, all the appointments are by skype, so no travelling just for them. But he, or Dr Macfarlane is there in the hospital on the day you get your infusion. I've met men who flew over from US for their Lu177. To some folks, the cost is the least of their concerns, its just a matter of ethical behavior of the provider and these ppl would go anywhere to try to get a fix.
You may only get 30 minutes with Dr Lenzo and he might shed light on other treatments you have mentioned. I ain't a doctor, so cannot advise you and I have not experienced some of those other treatments. I did have some IMRT at a Melbourne hospital in 2016, ie, salvation RT to PG and two lymph mets but I doubt that did very much to help me.
We have essentially the same diagnosis. Pc on lymph nodes. I am on casodex and will get my first booty shot of lupron on tues. My oncologist is going to light up all the pelvic lymph nodes but put more intense fire on the cancerous nodes. As Tall Allen said, there are probably some others just waiting, better to try and knock them out.
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