Don
Greggs lives in New York, USA. He was 57
when he was initially diagnosed in November 1991. His initial PSA was 14.7 ng/ml
and his Gleason Scorewas 4+3= 7. His staging was T3c NoMo and his initial choice
of treatment was surgery. The surgery failed and here is his story:
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.
Don's
e-mail address is: dlg14031@aol.com
