effectiveness of zapping what is seen on PSMA scan

[ron_bucher]

For those who have had radiation on tumors seen on PSMA scan, how long did the radiation put your cancer in remission?

[6357axbz]

For me 3 years so far.

[ron_bucher in reply to 6357axbz]

Thanks and congratulations.

[icanwintwice in reply to 6357axbz]

I just finished radiation in December 2022 and my PSMA scan has been clear. I am still on Lupron and Erleada for another six months. It would be nice to know if you can attribute your good fortune of having not had a relapse in three years to anything in particular. Exercise, diet, luck, supplements or some other treatment?????

[6357axbz in reply to icanwintwice]

All of those things but if I had to pick one thing that MAY have helped it was that very early on, within a few months of dx, I did the Rick Simpson cannabis protocol. A medical dispensary in Michigan made a super concentrated reduction of the cannabis plant which had the consistency of black tar, put it into syringes, one gram per syringe, which I would use to squirt the content sublingually. One gram per day for somewhere between 60 and 120 days. My body and blood stream were saturated with it. It was the only time in my life where my liver functions were borderline bad. I like to theorize that, like chemo is supposed to do, this killed a lot of CTCs ( circulating tumor cells). In fact each time my CTCs were measured they were either ZERO or very low.

[spencoid2 in reply to 6357axbz]

Ten years ago a friend had a large excess of sour diesel flowers not pretty enough to sell. I made a ton of resin for it not knowing why because 3 grams would last me a year. I haphazardly did the RSo treatment and got to the point that maybe .5 grams of active canabanoids would not mess me up too much to function. I had had the resin tested by a reliable lab and the active canabinoids was about 70% almost entirely activated THC and a little CBD and very little CBG I also have a high CBD resin made from flowers from another friend. I am considering doing a full treatment and would like to know the details of the resin you used. High THC, CBD both etc. What was the daily dose of active THC and CBD? Other canabinoids worth mentioning? Both of my resins are fully decarboxylatred (sp) so there is almost no THC or CBD acid. Are these important?

[6357axbz in reply to spencoid2]

All I know it was high THC but they were high quality commercial plants. Again, I took a gram per day, sublingually. I could function ok but ya Mon, stayed pretty buzzed

[icanwintwice in reply to 6357axbz]

Thanks for your reply. Very interesting. How did you have the CTC’s measured?

[6357axbz in reply to icanwintwice]

A CTC blood test. It requires special tubes for collection. Not all facilities offer them. I had them done at MD Anderson in Houston. The hospital where I get my labs done in N. Central Wisconsin agreed to order the special tubes so I had one done there as well.

[swwags]

about 6 months for me. SBRT on right scapula and left hip in 2019. Found more in lung, then went on chemo after that. Now the lesions I have are all related to MM. PCA in remission since February 2022. Had bilateral orchiectomy last March. Not regrets. Was on Erleada for awhile Now waiting for another ADT.

[dhccpa in reply to swwags]

You're still on ADT? What benefit was the orchiectomy?

[swwags in reply to dhccpa]

Orchiectomy replaces Lupron. No testes to produce testosterone. Of course the Adrenal glands also produce testosterone, though at a much smaller rate. The second gen ADT is used for that.

[dhccpa in reply to swwags]

Yes. So the benefit was no more Lupron shots? Anything else?

[swwags in reply to dhccpa]

Nowhere near the side effects I had with Lupron, but yes. I rarely get hot flashes. Nowhere near the emotional roller coaster that is Lupron. Weight is a bit easier to contain, still have lost muscle mass and since there is no cure coming anytime soon, there's no point in keeping the biscuits. If in the next decade, I'm still kicking and a magical cure comes along, I can always take testosterone injections. I see little (actually nothing) in the pipeline for cure, certainly nothing in the next ten years. Mostly what I see are trials for new drugs to keep the disease chronic and the wallets empty. Cynical I know.

[dhccpa in reply to swwags]

Thanks

[ARIES29]

2 years for me, then it was back & been on ADT ever since.

[palser1 in reply to ARIES29]

About 6 months for my husband then had a second lot now just about to start chemo was also Erleada helped for 2 years roughly . will go on something else during and after chemo >

[AgedTenor]

I’ve had 3 lots of SBRT over about 5 years, two on the spine and one on a fixed rib. I’m off ADT again now. There has been no sign of return where the met wa irradiated. Currently my PSA is 0.36.

[ron_bucher in reply to AgedTenor]

Thanks. My radiation oncologist says he has never seen prostate cancer return to any area he has radiated.

[V10fanatic in reply to ron_bucher]

I had SBRT to four mets in July 2020, and on 2 recent PSMA scans and an FDG scan they were all inactive. Unfortunately, 4 more popped up and only on the FDG scan.

[ron_bucher in reply to V10fanatic]

Thanks. What was the purpose of doing FDG scan if you did PSMA scans?

[V10fanatic in reply to ron_bucher]

My PSA was doubling every 3 months, so we knew the cancer was back and spreading. My MO suggested we run the FDG after the 2 clear PSMA's to see where it was. I also biopsiesd a met to check for Treatment Emergent Neuroendocrine cancer. Fortunately, the biopsy showed adenocarcinoma only.

[Jewelrylady in reply to ron_bucher]

What is FDG

[pe43 in reply to Jewelrylady]

FDG=fluorodeoxyglucose. FDG-PET scans detect active cancer cells, an alternative to a PSMA-PET scan, which relies on the presence of PSMA on the surface of the cancer cells.

[RCOG2000]

after eighteen year remission the disease reoccurred. Lesions seen on axumin scan in 2018 remitted with tomotherapy. New.lesions in different locations appeared two years later n psma scan. First time was only lymph nodes. Second time different nodes. Remitted again on psa but then recurred with bone lymph and lung. Began bicalutemide. With moderate psa response and went to low dose enzalutemide to hope for better side effect experience. That was successful in producing better scan results. Then added lupron and most recent scan showed NED after nine months. Prior to starting bicalutemide i had not had any hormone deprivation/blockade.

[ron_bucher in reply to RCOG2000]

Thanks. What is "NED"?

[RCOG2000 in reply to ron_bucher]

Abbreviation for no evidence of disease

[RCOG2000]

oops. After that first axumin scan all followups (3) have been psma pet/ct

[Ingress]

The 3 rounds of high dose radiation killed off the one met the PSMA PET found in my pelvic area. But PSA slowly rose and 3 more Mets were found in different places. Did chemo and have been NED since (2 years 10 months).

[Scout4answers in reply to Ingress]

What was your original Gleason and PSA

[Ingress in reply to Scout4answers]

Biopsy Gleason was 4+4. After surgery 5+4. Last PSA prior to surgery was 12.8.

[Scout4answers in reply to Ingress]

You took a different path then I chose with essentially the same diagnosis. Just shows that there are many ways to battle this beast . Glad you are doing well.

[icanwintwice in reply to Ingress]

so you had 1 lymph node met and did SBRT. Then found more mets and did Chemo and you have been NED since? What kind of chemo?