THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
Failed surgery, no adjuvant treatment suggested by doctor, just DRE (Digital Rectal Examination) and PSA's for six years while my PSA dropped to a nadir of 0.5 ng/ml then rose to 2.5 ng/ml when the doc suggested EBRT (External Beam Radiation Therapy). By that time I had read and attended a PCa conference, learning the success rate of EBRT. That and the fact that a radiation-oncologist I saw lied to me about his having 3D Conformal equipment (I knew he did not) caused me to reject radiation, I fired my uro and continued to study. I also attended the '99 PCRI Conference at Long Beach.
I handled my own case for several years in which time I had a Prostascint (which was negative), a second opinion on the tissue block plus a ploidy (diploid), and gene studies by Bostwick. I also had a QCT Bone Mineral Density scan done (T=1.4). My PSA ranged from 2.5 ng/ml - 4.8 ng/ml , sometimes going up or down a full point, no symptoms or clinical evidence of progression.
I had tried to get an appointment with Dr. Myers but was unsuccessful as he was into his own treatment at that time. When he returned to practice I managed to see him and have been with him these past couple of years, taking Avodart and a few other meds plus continuing on supplements and diet suggested by him in his writings. I have had no standard ADT (Androgen Deptivation Therapy) to date and continue to do well. He has recently extended to 3 month labs and annual appointments. I appear to be doing fine, (knock wood!).Dr. Myers suggested weight loss and exercise which I initiated and lost 40lbs which positively affected BP, heart rate and blood sugar level. Three days a week at the gym with cardio and weight bearing exercises will be indefinitely continued.
I'd be happy to exchange posts with anyone if I might be of some help.
I had a positive DRE at Dr. Myers in June followed by a Prosatscint/CT Fusion scan at Sodee's in Cleveland which showed one positive node.
Myers put me on ADT3 (Triple Androgen Deprivation Therapy - Trelstar LA, Casodex, Avodart), then I went to Sarasota where Dr. Dattoli supervised IMRT (Intensity Modulated Radiation Therapy)......81 Gy to two tumors that showed up on Color-doppler Ultrasound and 6140 cGy to the lymph nodes on both sides.
Both ADT and IMRT have been very well tolerated with almost no side effects at all.
My current PSA is 0.720 ng/ml.
I continued on ADT3 for a total of one year and now am on Avodart (2 with Grapefruit juice to enhance effect). I maintain a largely Mediterranean diet and standard supplements plus soy. A re-check at Dattoli's showed tumours gone and nodes clear. Surveillance will be annual with visits to both oncologists.I have maintained a 0.03 PSA for several months.
I continue on IADT with Avodart. PSA's have increased from 0.03 to 0.07 over several months, which could be the radiation "bump" many have experienced. Time will tell. I tolerated ADT well and can do it again if I have to. I'm hoping for an extended "off time," however.
Meanwhile I have lost 40 lbs, got cholesterol and BP under control, and resting pulse to 50-55, all the result of diet and exercise. I am no longer in the "Syndrome X" category.
I have been on intermittent ADT for 3 years, taking only Avodart for DHT which has been controlled nicely.
My PSA has risen from 0.03 (nadir) in the fall of '06 to now, 0.95(12/08). I expect my PSADT (PSA Doubling Time) to require re-starting ADT3 rather soon.
One side issue is T (Testosterone) not having recovered well post ADT plus a steady decline over the last year to now 157. I may have SHBG (Sex hormone-binding globulin) level done to see if that is the reason for the decline. Of course the T will be easier to control when I go back on ADT, so it may be a moot point.
Rising PSA prompted a bone scan which was positive in rib T4. Decided on stereotactic radiation (Novalis) to the rib, to be done shortly.
I developed a 9 cm rib met and had it radiated. There was partial resolution of the metastasis, and I continue on second line hormone therapy at this time.
I had recent scans at Sand Lake Imaging in Orlando, F-18 PET, CT, MRI with Feraheme (USPIO) and a Tesla 3 Magnet. The results were no lymph system disease, previous rib met inactive, but did find another rib met, however small. Another spot as well, but I think it is a previous trauma from over 20 years,...always showed on any bone scan (needs to be sorted out, perhaps a biopsy). I will have it radiated per oligometastic protocol soon.
I just wish we had had these scans prior to my original radiation, as they radiated my illiac nodes per the proper protocol at the time, but that was then and this is now.
Both new lesions were treated as mets, follow up bone scan in the offing.
HDK/HC dropped, am now on Zytiga and prednisone per Dr. Myers. Big positive change in energy, balance, etc. and much easier to take. No side effects so far...
I have moved to Grand Junction, CO recently. Need to seek a local onc, GP, possibly a Nephrologist for grade 3 CKD. Doing well on the meds. Saw Dr. Myers in March and he liked what he saw........no change in treatment, but more BW added. I will continue with annual Myers check-ups.
I'm mobile, however a bit handicapped. Treating side effects, of course.....some of which may just be age related. I'm as active as a near 80 yr. old can expect. I'm on Lupron and Zytiga still.
I have been on Zytiga for over a year and am now on Radium 223 infusions (Xofigo). I have 5 to go (one a month) to complete the course which promises complete remission after 25 years of my PCa.
Don's e-mail address is: firstname.lastname@example.org
NOTE: Don has not updated his story for more than 15 months, so you may not receive any response from him.