My story .. first post

[Db999]

Hi. This is my first post ... diagnosed in 11/16 Gleason 4+3 .. 4/12 cores ... chose Cyberknife. Worked great psa from 6.5 to 1.29 in 90 days .. after 2 years starting rising and fast to 17.5 in 1/19. New biopsy confirmed 3 cores still positive ... about to do HIfu and doc said to do Axium pet just to triple check no Mets. mri and bonescan showed none ... I thought I was all good for HIFU. BOOM Pet showed spot 1cm on lung .... biopsy and sure enough prostate cancer .. only hot spot on my whole body .. docs can’t believe it ... Started Lupron/Zytiga two weeks ago .. Psa down to 2.6!!! doc was very happy with result

And I was too .. Really NO side effects ... so far so good .. take care guys !!

[Magnus1964]

I am suprised your doctor is not considering radiation to your prostate at this time.

[Db999 in reply to Magnus1964]

I’ve already had CK to prostate. Wouldn’t use more radiation. I was gonna do hifu or cryo. But no more focal treatment after we found met. Was told maybe radiate the lung lesion down the road .. after psa is nice and stable

[tallguy2 in reply to Db999]

I would seek a second opinion. Memorial Sloan Kettering in NY is trying aggressive approach: remove, radiate, or drug everything. Clinical trial underway.

[Bob10 in reply to Magnus1964]

Magnus hi my doctor's at Dana are having me meet with a doctor to Discuss radiation on my prostate is there any Evidence that this works I just finished 6 cycles of chemo and don't know if I want to put myself through that anyone have Experience with radiation to their prostate ty

[Db999 in reply to Bob10]

It might help if you’ve never had it . I had CK therefore no more radiation ..

[Bob10 in reply to Db999]

What's CK and one more thing I ask my doctor mo Is it possible to have immune response from Radiation and she said conceivably is that true

[Db999 in reply to Bob10]

Cyberknife. It’s precise high fractioned radiation.. SBRT is the type of radiation

[Magnus1964 in reply to Bob10]

Radiation after CK can be beneficial. As to the lung ask your doctor about Provenge.

[Bob10 in reply to Magnus1964]

Magnus I'm talking about Radiation to my prostate

[Magnus1964 in reply to Bob10]

Exactly, I am saying radiation to the prostate at this point would be beneficial.

[Db999 in reply to Magnus1964]

I’ve been told you don’t do radiation on the same area twice ?? By many docs MO AND RO.., never heard of doing radiation again of it failed the first time ??

[Tall_Allen in reply to Db999]

You are right - after there is a visceral (lung) met - there is no point in treating the prostate.

[Mish80 in reply to Tall_Allen]

Can I ask if it is beneficial to to radiation to the prostate bed even if there is a single spine met ?

[Tall_Allen in reply to Mish80]

Please start a new thread and give treatment history - I don't know if you are talking about pre or post prostatectomy or other treatment.

[Magnus1964 in reply to Db999]

Sorry. Your description didn't say you received radiation to the prostate.

[Tall_Allen in reply to Magnus1964]

"diagnosed in 11/16 Gleason 4+3 .. 4/12 cores ... chose Cyberknife."

[Magnus1964 in reply to Tall_Allen]

Sorry, I guess I have been on too many ADT drugs, brain fog.

[Tall_Allen in reply to Magnus1964]

That is incorrect - there's no evidence to support doing that.

[pilot52 in reply to Bob10]

Has anyone talked to you about proton radiation..? and if it would be applicable to your condition? I had two large tumors develop after prostatectomy at the bladder neck. After a while on Lupron and Casodex I had 36 Proton treatments . Other than having a balloon stuck up your ass for protection it was a breeze..Not everyone gets the balloon ride...I played golf , ran , and lifted ..,No more evidence of tumors . Blue Skies

[Db999 in reply to pilot52]

Radiation failed the first time after 2 years . You don’t radiate twice . Cyberknife is SBRT... it’s radiaition ... it lasted two years . Whether you do normal 44 day radiation, Cyberknife, seeds, proton, I’ve been told it’s all radiation..

[monte1111 in reply to pilot52]

And I always thought those nice looking gentlemen buying big bags of blue balloons were buying them for their grandchildren. Talk about the wild blue yonder.

[pilot52 in reply to monte1111]

a little stormy...the wild brown yonder

[MichaelDD]

Diagnosed March 2016. DaVinci removal. Had GA68 PSMA at UCSF October 2018 found multiple lesions (more then 10) both lungs . No mets any where else. Largest is 9mm. CT and body scans (5 prior) located nothing. On Zytiga, Lupron, Prednisone. Rare yes but told by UCSF MO that with better detection may now "see" more.

[Db999 in reply to MichaelDD]

Well I’ve found another brother ... how’s your treatment working. As I said I’m only three weeks in ( but had blood done a week ago) and PSA went from 17.5 to 2.6 in 14 days! I thought ( as well as MO) that was fast and he was very happy.

[MichaelDD in reply to Db999]

Being 4 months into treatment I have had one CT scan since the GA68 PSMA. Did it just short of the 3 month mark. Since CT is far inferior it sees only the largest or two of the bigger nodules. 9mm now seems to be 7mm. Theoretically then all the others should be shrinking also. Would hope same treatment is doing it for you!! Lower PSA is needed for shrinkage and your drug combo is doing that. If there is a "good" from all this for you its only one nodule. You on Prednisone?

Your rapid PSA drop is great! My PSA has always been low. Diagnosed at 12 in 2016. After prostate removal (June 2016) first PSA .024 . I had persistent PSA. Had doubling every 3 to 5 months after. Radiation didn't slow it. Last October (2018) at PSMA scan I was 1.88 . Now at .03.

My next scan is not with my regular MO but with my other at UCSF ( I live 25 miles away) in May. I get PSA done every month. Scans every 3.

[Db999 in reply to MichaelDD]

Yes 10 mg prednisone .. daily . Let’s keep in touch .. I forgot to ask when or if I get scan again ... have a good day

[Tall_Allen]

I'm sorry to hear this. You obviously have good doctors - it was good that they checked with the Axumin scan so that you avoided an unnecessary procedure. You obviously have a very radioresistant type of PC. Was there any more information from the lung met biopsy report?

[Db999]

I can look ?? Anything I should look for .

[Hidden]

No side effects .You are blessed.. I wish you continued success and a happy life... Thank you

[Db999 in reply to Hidden]

I really have none .. you could tell me I’m on a placebo and I would believe it .. I was certain it wasn’t working ... Doc reminded me that feeling the meds is no indication of effectiveness... lol

[j-o-h-n]

Tell us more about yourself please: age, location, treatment center, and doctors names?

Also about my Stage IV lung melanoma, which may or may not apply to your lung situation, but for what it's worth:re: Pembrolizumab, brand name Keytruda.

I asked my Melanoma Oncologist if the Keytruda would help in fighting my Pca, she said unfortunately no.

I'ts working for me for my melanoma.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/30/2019 12:57 PM EDT

[Db999]

I was diagnosed at 47 ... I’m 50 now . Live In St Louis. Am treated at St. Louis Cyberknife and Cancer center .. we also have Siteman Cancer center here, one of the tops in the country , but I’m more comfortable where I am .. I have gotten two opinions from Siteman Docs just to double check and they concur with my treatments ... the MO I saw at Siteman said he wouldn’t of done the Axium Pet and I wouldn’t of known I had the lung lesion ... I see Dr David Morris and Dr Monsoor Haq at this time ..

[tallguy2]

Why no recommendation for radiation treatment? The PET gave you actionable results!

[Db999 in reply to tallguy2]

I had radiation prior to the reoccurrence ...