Met with my University of Texas Southwestern Medical Center RO last week. She said that the experimental scan that I paid out of pocket for at UCLA "was now the state of the art" scan for locating PC. In my case it was post op, pre ADT, pre radiation therapy. Results, thank God, was only localized PC in several pelvic lymph nodes, no bone, bladder invasion
PSMA GALLIUM PET SCAN : Met with my... - Advanced Prostate...
PSMA GALLIUM PET SCAN
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TEBozo
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Hi TE
I am a follower of yours because we are going down essentially the same path. I am 67, PSA of 14, GL 9. RP in Feb with a PSA of .9, 8 weeks after surgery. Started Lupron and Zytiga. Talked my MO into the Zytiga because I figured the PCa was out of the area already and I wanted to treat as if it was. MO said sure, why not.
Long story, but I was unable to get the PSMA scan. Just finished SRT to prostate bed + PLN's. (Had to wait for my incontinence to catch up.)
Good to know Dr Lam prescribed Zytiga for you since we could be in the same boat.
Like many guys on this forum, I guess now it is wait and see time for both of us. Good luck to you.
Very close and it's great to have friends!
Hello TE
You might recall I had a clear PSMA scan pre SRT but opted for Zytiga in addition to gosrelin, notionally for two years. PSA was 0.1 at SRT.
Well, I stuck it for 8 months but the Zytiga was really hard for me so I dropped that and just stuck with the gosrelin to take me through 12 months. That comes up in Jan and I figure to quit then. With clear nodes and scan, i’m hoping that will be enough, notwithstanding my Decipher of 0.91.
How are you ting the adt plus Zytiga?
Stuart
RP Jan 4th; First ADT shot in March; 3/14 nodes positive. Gallium scan on at UCLA in March prior to first ADT shot;IMRT Started June finished end of July; Started Zytiga in mid August; Uro Surgeon at Dallas' UTSW said I didn't need it; Oncologist Lam in Marina del Rey said YES. Started on 500 mg/day and now up to 1000 mg/day. Lymphocytes low but all blood work normal. BP started to rise so increased Losartan from 50 to 100 mg all normal now. Keo diet started 3 weeks ago and dropped 9 pounds. need to loos 12-15 lbs more.
Gallium scan showed several localized nodes positive and it gave UTSW RO a great target accorider to her. No PSA of T; 9 more months to go; getting married in February
Glad to hear you went with the Zytega. Good move I think.
Schwah
Called Lam last week and told him the move from 750 mg to 1000 mg caused significantly increased side effects; specifically fatigue and a small rise in BP. He backed me back down to 750.
Work for the Dallas Cowboys, need all energy I can have.
I have been to University of Heidelberg 3 times for AC-225 and LU-177. Just finished third treatment and will test in 3 weeks. Psa now at 22 was at one time 740.German doctors want me to do PSMA scan in the U S to see if I need to return for further treatment. University of Michigan,Henry Ford and Karmanos has refused the scan even if I paid for it . Cost in Germany is 900 EROS. Does anyone know where I can get scan saving trip to Germany.
Thanks
Try calling UCLA to see if they are still doing Ga 68 PSMA scans since their trial ended. It was about $2,700 for me last March.
See if Stanford is still doing it. We came back on Friday from my husband's scan. Good luck.
I called ucla today to schedule my scan for $2800. They are still doing it.
Schwah
Weill Cornell had a big trial underway. Many treatment arms available that you may qualify.
$600 in Melbourne, AU.
Yes for $2,800 you could have a great trip to Oz as well as the PSMA scan and change to spare. Do it! You will love Oz! You know it is on your bucket list.
My PsMa Ga68 scans have all been about aud $700, so about usd $476.
usd $2,800 is about aud $4,117, which goes a fair way in Oz.
When I was getting Lu177 there were a couple of blokes from US whohad flown over to Sydney to get it. Its aud $9,600 per shot, so usd $6,530.
I watched a show on TV here in Oz where it was shown that many medicines have gone up in price in USA, insulin had gone real high, so ppl were driving to Canada to get it. All is not well with US Medical system it seems.
Patrick Turner.
Ron, I’d love to know the name of the clinic in Melbourne where you had your g68 scan!
Hi 'bean',
This is a copy of an email that Dr. Declan Murphy (who is a fellow alumna of my urologist Dr. Thomas Ahlering at UCI) sent to me prior to arranging my scan at Peter MacCallum Cancer Centre in Melbourne. Dr. Murphy is a great guy, answers every one of my 'update' emails and has never charged me for his time.
Murphy Declan <declan.murphy@petermac.org>
To:
Ron Pitelka
May 16, 2017 at 8:58 PM
Hi Ron,
Just let me know when you are planning to be in Melbourne and we will book the scan. You don’t need to see me first, I can just book the scan directly. But I would be happy to see you after to go through the images if you wish to have a consultation.
Best wishes,
Declan
Associate Professor Declan G Murphy MB BCh BaO FRACS FRCS Urol
Urologist, Director of Genitourinary Oncology | Peter MacCallum Cancer Centre
Division of Cancer Surgery,
Peter MacCallum Cancer Centre,
305 Grattan Street,
Melbourne,
Victoria 3000.
O: +61(0)3 9421 6425
F: +61(0)3 9421 6372
hi! Why did the three hospitals refuse you this scan even if you paid for it? What was the reasoning they gave?
Hi TEB,
I had my first PsMa Ga68 PET/CT scan in 2016 after Psa was rising fast to 5 after ADT for 5 years. All they found was a lot of Pca in PG, and 2 upper lymph nodes each side of oesophagus, so I had extra IMRT to PG and to both lymph nodes via Calypso method at Epworth Hospital in Melbourne, with Cosadex added to ADT. But Psa went down to 0.4, then back up to 5 in 2017, so next PsMa Ga68 scan showed a lot more mets, including bone mets, so just because this scan shows very little on the first one done, it is very possible there a large number of mets that cannot be seen by PsMa scan because the mets are so small. They will all grow bigger, and become a threat. PsMa Ga68 scan can see mets about 2 years before they show up in a CT scan. I've had maybe 6 x PsMa scans so far, all showed enough to let doctors know if chemo worked, and it didn't, and if following Lu177 worked, which is seems to have done and this is also indicated by Psa which was 25 before first shot Lu177 last Nov, and now is 0.32 after fourth Lu177 shot last May. But Pca probably will grow back and I'll need more scans and Lu177. Last PsMa scan report showed bone mets were healing, soft tissue mets were not seen, but that just means mets could all have gone to small size but could be still alive. So my Pca is under control, but NOT DEAD, so I cannot claim a cure or remission.
Patrick Turner.
Interesting response. PCa is under control but not dead. Therefore manageable but not kill-able.
Regrettably, I think once it is out of the Prostate, I don’t think it is ever killable, but we can sure as hell keep it at bay for a long time.
But we are lucky if we can reach the situation where what troubles us becomes bearable. Nobody escapes getting old and finding that nearly everything they do at 70 is not as good as what they did at 30. But aging is a natural process, and most of us put up with the idea of aging occurring, but if something comes along to hasten aging we are aghast, and do all we can to disrupt the disruptor. So we seek cures, but cures often are unavailable for a lot of things, because doctors are not magicians, and they have limited powers so we should settle for what can be done, and with cancer, much of that is done is trial and error medicine.
So enjoy good luck when it happens.
If it was 1919, the treatment options for Pca were usually having balls removed, ie, surgical castration, and it worked for awhile, and a common ailment of old men was a slow difficult urine flow. Often ball removal made the flow better because swelling of PG was reduced. But if other symptoms appeared and you were rich you may have been brave enough to have an RP. The US Magazine The Lancet has the early history of understanding Pca and its treatment and it is sobering reading.
In this country, in 1908, the Govt promised to pay everyone an old age pension at age 65, and ppl were overjoyed, and voted accordingly. But the average longevity at the time was 63, so few got the pension, and they would not get it for very long. Pca rates would have been lower because blokes died well before it was detected. Often, when it was detected it was far too late to do anything much because the bloke not only had trouble pissing, there was blood in his urine, he had aches and pains in bones that were not arthritis, so he was done and dusted. Compare that to now. I've survived 10 years after an inoperable Gleason 9 diagnosis in 2009. At 72, I cycled 82km this morning, so I function fairly well, and it does not worry me much that Pca could bounce right back and kill me within a year or two. I can type these cheap high speed telegrams to you all, we have time to compare the experience of having Pca, and see more about what treatment might or might not work.
But back in 1919, you could be told bluntly how long you had, and there was little that could be done, and few ppl needed to discuss it because nobody knew much about any cancer.
Early surgery to get rid of cancer often was highly disfiguring, so QOL was dramatically reduced, if you lost a leg or arm or half your face. And still the cancer returned because it took time for doctors to realize that cancer spreads to regions far from any attempted surgery. When the Psa test came along it was a revolution, because many men were diagnosed BEFORE any spread had occurred, so surgery often worked.
Many ppl are now enjoying old age even with a bit of cancer here and there.
Patrick Turner.
My understaning is that the GA-68 PSMA PET-MR can see mets in soft tissue or bones down to 2mm.
Expecting FDA approval in 2020.
How are you doing Patrick?
That's great news, going for 1st in a week congrats
1st 68Ga-PSMA-11 PET/CT scan?
Wish you good detection results. Avid lit up spots or lack of those areas. I’ve always asked myself why do we/I do Med tests?
Answer: to find a problem or no problem. Update us Costarica1961
Good. They can be hit with whole pelvic radiation.
Prostate removed, ADT started 30 days later, IMRT begun 90 days later, Zytiga begun 30 days after IMRT, August 2020 marks the 18 months of Lupron and Zytiga. My oncologist Lam, at Oncology Specialists in Marina del Rey says I have a good shot at a "cure."
BTW, RO at UTSW Dallas said she had a good target for radiation because of the Gallium scan.
Had the GA Pet Scan out if pocket for $2k. Showed metastasis on my spine which caused me a lot of pain I wanted to just not wake up. Thanks to oxycodone was able to make 10 days of radiation, which got rid of the pain, had my first shot of Xigiva, 2nd due on the 27th. Been taking Zytiga and prednisone, with insulin shots daily due to diabetis. Slowly going back to normal, meaning no pain, able to walk a few blocks around the neighborhood. Except for muscle loss, and no appetite, I think I might have a couple more years, or so.
Sounds like you have a plan. Via con Dios
Thanks, right back at you. This site has helped me a lot and had given me hope and encouragement.
How are you doing?
Doing ok as far as the PC is concerned, except been diagnosed with enlarged heart, have gained a few lbs and face rounder than the globe. Had Covidlast month, but mild, just coughing, then pneumonia, but got rid of them with antibiotics and Vit C infusion. Thanks for asking. Hope everybody is well.
"no pain, able to walk a few blocks"
Great keep on keeping on....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 11/20/2019 7:05 PM EST
Thanks, j-o-h-n. your humor is always encouraging.
Congrats! I’ll be heading to UCLA likely in January. Next month I hit my two year anniversary for my RP. Initial post surgery PSA was .009 but is creeping up but still low… I was up to a .3 last October. G68 sounds like the way to go! But after reading this thread I’m tempted to go to Australia instead of UCLA!
Steve
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