New to the forum, my husband is 5+ years since MPC diagnosis

[HOPEFULSPOUSE]

My husband was diagnosed in 2013 with MPC at the age of 53. His PSA was 779; Zoladex brought it down to 60; oral DCA brought it down to 29; the "Pfeifer Protocol" brought it down to 1.5. He cut out alcohol (although not a huge drinker), dairy, did a raw vegan diet strictly for a year, now does a combination of raw and paleo. PSA started climbing after 4 years. A 5 course of radiation on his left hip this past July; another 5 course on his lumber in October. Currently exploring Issels, DCA IV, Dr. Leibowitz at Compassionate Oncology in LA and MD Anderson in Texas. He is currently on Zytiga, Prednisone, Xgeva and Low Dose Naltrexone, plus 60 mg melatonin nightly as well as a weekly Vitamin C IV of 100 mg.

Greatly appreciate all the information and support here.

[joancarles]

I would like to have met somewhere else. But Greetings. What has been your lowest PSA?

[HOPEFULSPOUSE in reply to joancarles]

My husband's lowest PSA was 1.5

[HOPEFULSPOUSE in reply to HOPEFULSPOUSE]

sorry - 1.39

[Arcticfox44]

Are your familiar with the work of Dr. Eugene Kwon at the Mayo Clinic? I have been a patient of his since May 2017. Here he is on YouTube. youtube.com/watch?v=Nkqizmv...(Not working as expected?)

[podsart in reply to Arcticfox44]

How do you find Dr kwons personal style. Does have an aggressive approach to treatment, ie multiple treatments together and early.

I think he was early user of auxium scan, don’t know if he has obtained a PSMA scan yet.

In one video (couldn’t get your link to work) he showed a slide of a scan he took of a patient with an undetectable PSA with multiple mets. He didn’t explain much further- didn’t think you qualified for scan if PSA is below .05 as these scan become unreliable to see mets smaller than a certain size. Wondered if he mentioned such a case.

One one post , he wouldn’t treat until the PSA rose to higher level, don’t remember, perhaps 2.

Trying to understand his philosophy of treatment and contact stye with patient.

[Arcticfox44 in reply to podsart]

He and I get on well. My case is different from your husband's. I had radical prostatectomy at Sloan Kettering in 2002 right after I was diagnosed and when PSA was about 4. The surgery worked until 2007 when PSA began rising from the post-surgery low of 0.003 (virtually zero) to 0.2. I then returned to Sloan in 2008 for salvage radiation. It didn't really work and in 2011 with rising PSA I started hormones, initially Suprefact and later Zoladex. This too eventually failed to hold back PSA -- the cancer had become "hormone refractory", as they say. In 2014 I had choline PET scans in London which showed only local recurrence in a quite small area of lymph glands in the lower left abdomen. Some of that was removed by robotic surgery (also in London) in May 2014 and PSA fell from about 7 before surgery to 1.0 after. Then it began rising again and I went back on Zoladex in March 2015, with Casodex pills in addition. In April 2017 I had a gallium PET CT scan at Heidelberg University Hospital in Germany. Those scans are thought by some to be more accurate or revealing than the choline PET scans but the Mayo still uses choline and when I went there they did one which essentially agreed with the gallium scan from Heidelberg. I then had further surgery at the Mayo to go after the lymph gland recurrence again and PSA dropped from about 4 prior to the operation in July 2017 to 0.02 in August 2017 -- one month after surgery. It has since stayed low and I have had no further therapy -- no hormones or radiation, chemo or the new drugs like Zytiga and Xtandi. My last PSA test in October 2018 was 1.2. Dr. Kwon says I can probably just watch it and there are options down the road such as the radioactive treatments being used at Heidelberg (Lutetium 177) but not yet approved in the U.S. I might also be able to have further targeted radiation and/or further surgery. I am 74.

[podsart in reply to Arcticfox44]

Thanks

Good luck

[j-o-h-n in reply to Arcticfox44]

who was your surgeon at MSKcc?

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/05/2018 4:21 PM EST

[Arcticfox44 in reply to j-o-h-n]

Dr. Rabbani. He is no longer there. But he was good.

[j-o-h-n in reply to Arcticfox44]

Thanks - glad he was good...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/05/2018 9:31 PM EST

[HOPEFULSPOUSE in reply to Arcticfox44]

Thank you! Will look into Dr. Kwon

[Rkoma in reply to HOPEFULSPOUSE]

How long was Pfeifer protocol working

[Hidden]

Without going into my own history (I wouldn’t be on this site if I wasn’t in the same boat as the rest of my brothers here), I have had really good results with Dr. Antonarakis at Johns Hopkins. hopkinsmedicine.org/profile...

He’s worth a look