My name is Charlie Redd and live in Cocoa, FL. I'm 71 years old and married to Beverly.
In 1989, a Staywell Program Health Risk Profile was offered to employees and their families of the Cape Canaveral Hospital. My wife, Bev, worked at the hospital and she thought I should take advantage of the program. A personalized booklet was made up for me, giving the results and recommendations for one's future health. Blood work was done and all results of cholesterol, HDL, LDL, Glucose Levels, and all the results you usually get from blood tests were given in the booklet. At that time, as usual, a PSA test was not given unless specifically requested. However, it was recommended that I set up an appointment with my doctor for a PSA exam.
Looking back over my medical records, and based on my recall, I can tell you that I never made an appointment to have the PSA test. It was some time after 1989 that I found out I was a diabetic and started seeing Dr. Ralph Page, my doctor, every three months. It was Dr. Page that said I should get my PSA checked. I never was in pain or was not aware of anything unusual about my prostate. In fact, I didn't know where or what my prostate was. Who knows -- if Dr. Page had not scheduled me for the PSA test, I might not know today that I have Prostate Cancer.
In November 1994, my PSA was 1.2 ng/ml, .in March of 1998 it was 3.52 ng/ml and in May of 1999, it was up to 5.97 ng/ml. Dr Page sent me for a trans-rectal ultrasound. The prostate was mildly enlarged but no suspicious lesions were identified. This was June 28, 1999, and everything seemed okay. By September 3, 1999, my PSA had risen from 5.97 ng/ml to 6.18 ng/ml. The doctor gave me a choice of getting a biopsy done or just wait and monitor my PSA results each time. I chose to wait until December when I had my next PSA test. My PSA had risen from 6.18 ng/ml to 9.01 ng/ml.
Dr Page made an appointment for me with a urologist, Dr. Leal. He put me on antibiotics for four weeks to see if maybe I had an infection. He then had me take an exam which is called PSA, FREE AND TOTAL. On Jan. 13, 2000, results of this test showed my PSA to be 8.9 ng/ml, with 20% risk of having PCa. On Jan 31, 2000, Dr. Leal performed the biopsy. I got the results that I did have cancer of the prostate on February 7, 2000. This was two days before my 64th birthday.
Dr. Leal then scheduled an Abdominal CAT Scan and a Bone Scan. It was at this time I began to feel scared. These test, of course, were to try and determine whether or not the cancer cells had spread outside of the prostate capsule. These tests were performed on February 11, 2000. My next appointment was on February 17, 2000, and I was on pins and needles waiting for the results. My appointment was at 4:00 PM and I was put in a room to wait for Dr. Leal. He came in and started reading the Bone Scan Report, telling me there was something at the L1 level of my spine raising the possibility of metastatic disease from my prostate cancer. I asked if the cancer could be way up there? Dr. Leal told me that this is where it often goes. This is when I became very scared. An MRI of the Lumbar Spine was given to find out if had been detected at L1 was cancer or scars from an old injury.
On Feb. 23rd, the MRI test was completed and on the 24th I got the results. "An anterior compression of L1 is noted. However, signal appears to indicate that this is old rather than acute. This does not appear to be secondary to neoplastic disease." In other words, the cancer had not spread and has been diagnosed as being localized within the prostate gland. I was staged as B-2, which I was told was the second best stage to be in.
Nov. 1994....PSA was 1.2 ng/ml
March 1998...PSA was 3.52 ng/ml
May 1999.....PSA was 5.97 ng/ml
June 1999 I had a trans-rectal Prostatic ultrasound - findings: prostate gland mildly enlarged approximates 50 gr in weight, some calcifications noted-central gland hypertrophy noted-No focal suspicious hypoechoic nodules are identified. Impression: Prostatic enlargement. No focal suspicious lesions identified.
Sept 1999 PSA up from 5.97 ng/ml to 6.18 ng/ml.
Dec 1999 it was up to 9.45 ng/ml
Jan 10, 2000 PSA Free 1.57 ng/ml (18%): PSA Total 8.9 ng/ml:
Risk of Prostate Cancer - 20%
Feb 02, 2000 six samples were taken from Prostate.
#1: Right Base- High Grade Pin
#2: Right mid - Glandular and stromal hyperplasia, negative for malignancy.
#3: Right apex - Adenocarcinoma of prostate, Gleason grade 3+4=7 involving 5% of core.
#4: Left base - Adenocarcinoma, Gleason grade 4+3=7, involving 50% of tissue
#5: Left mid: Glandular and stromal hyperplasia, negative for malignancy.
#6: Left apex - Glandular and stromal hyperplasia, negative for malignancy.
This was followed by a whole body bone scan. Results: Unremarkable
My urologist recommended radical prostatectomy. I wasn't real sure of what the alternative treatments were. I did not believe I wanted to go through the surgery. I started reading up on the subject. One of the books I read was entitled "Man To Man", by Michael Korda. He was the editor in chief of Simon & Schuster in 1996, at the time the book was written. "Man to Man" is a powerful story and it has been said it is by far the best book on prostate cancer yet written.
This is one of the books that helped me decide against radical prostatectomy.
March 10, 2000 - Consultation For Radiation Treatments with Dr. Michael Dattoli who was, at the time, at University Hospital in Tampa, FL. This was about 135 miles from my home in Cocoa, FL. Since that time, he has opened Dattoli Cancer Center in Sarasota, FL. This is what the doctor wrote after the consultation.
Impression: Poorly differentiated adenocarcinoma of the prostate, Gleason 3+4=7 and 4+3=7 from both lobes of the prostate up to 50% involvement in the apex with associated PIN and PSA level to 9.45 ng/ml. Negative metastatic work up.
Recommendation: In that there was a negative metastatic work up and probably still has localized adenocarcinoma of the prostate, I feel that he is a candidate for definitive treatment. I felt because of the 50% involvement on the one side, that he would best be treated with a combination of external beam radiotherapy to an attenuated dose of 4140cGy followed by palladium-103 brachytherapy boost to the prostate. Because of the approximately 50 gram size of his prostate gland and the high Gleason score, I feel that androgen blockade would be beneficial as an adjunct and for down sizing. I will start the patient on Casodex today and then he will return in about 10 days at which time he will have MRI scan of the pelvis and prostate with endo-rectal coil to further asses the pelvis and the prostate for capsular integrity. At that time he will start Lupron and receive a one month injection of 7.5 mg. Provided that MRI scan of the pelvis and prostate do not reveal any surprises, then we will proceed two months after his first Lupron injection with simulation and the start of external beam radiotherapy to an attenuated dose of 4140 cGy which will be followed by palladium - 103 brachytherapy boost to the prostate. Casodex will be utilized for the first month starting today. Hopefully, this will be able to prevent a flare and worsening of the patient's obstructive symptoms. Hopefully altogether this will be able to control Charlie's prostate cancer permanently.
On March 10, 2000, the same day of my consultation, because of the 50 gram size of my prostate and high Gleason Score (7), I was started on Casodex by Dr. John Koval, an associate of Dr. Michael Dattoli. I returned in ten days for an MRI of pelvis and prostate with the endorectal coil to asses the pelvis and prostate for capsular integrity. At that time, I got a one month injection of 7.5 mg Lupron. Then after one month, I was injected with a three month 22.5 mg of Lupron.
May 23, 2000
I returned to The University Community Hospital in Tampa, FL and was placed on a simulator table in the supine position. An Alpha Cradle was constructed in the usual fashion for immobilization purposes. A CT evaluation of my pelvis was performed after rectal and bladder contrast were administered. No obvious extraprostatic masses were seen, the seminal vesicles appeared normal and there was no obvious deep pelvic lymphadenopathy . After all necessary procedures were performed, a treatment plan was made.
May 30, 2000 started:
External Beam Radiation Treatment Plan
1800 cGy to pelvis and prostate target in 10 fractions.
180 cGy per fraction (day)
After I was resimulated treatment continued with :
1260 cGy in 7 fractions?180 per fraction.
Then they reduced the field size and delivered an additional:
1080 cGy in 6 fractions at 180 cGy per fraction.
The TOTAL DOSE was 4140 cGy in a total of 23 days or fractions.
July 26, 2000
A special volumetric and planning ultrasound was done in the Radiation Dept. at University Community Hospital. Prior to this I was required to take a Fleet enema one hour prior to arrival.
July 27, 2000
World renowned, Michael Dattoli, presently of Dattoli Cancer Center, Sarasota, Florida performed the Palladium Seed Implant. There were sixty-three (63) seeds implanted into my prostate.
Dr. Charles "Snuffy"Myers, who was Cancer Center Director at the University of Virginia, was treated by Dr. Dattoli a year earlier. He also had EBR and the seed implant .One of the differences was that his total dose in radiation was more aggressive with 8,000 rads, almost twice the dosage. I mention this because it made me feel more comfortable knowing someone of Dr. Myers stature, also selected Dr. Dattoli as his doctor.
I stayed over night and was released the next day
September 19, 2000
This was a follow up date when I had a radiographic seed localization and a CT scan to check the placement of the seeds.
PSA after seed implant up to the point of ProstaScint scan.
8-05-2002..0.991 ultra sensitive at Dr. Dattoli
Dr Dattoli requested that I have a ProstaScint scan which was the most useful technique available for determining whether prostate cancer has spread. Since I live about 175 miles from Dattoli Cancer Center, they sent me a list of places in Florida that performed the ProstiScint scan, nuclear medicine. I selected Indian River Radiology in Vero Beach, about 50 miles from my home. There was a hospital in Melbourne, FL which is about 20 miles from my home but when I inquired, I found out that they only did about two or three each year. I preferred to go to a facility that did them on a more frequent basis. This approach uses an antibody is rendered radioactive and injected into the bloodstream, where it attaches to cancer cells but not to normal cells. If it indicates the presence of cancer, it?s only right about 80% of the time. It can also miss cancer in about 20-30% of the time.
April 17, 2003
This test required that I go in on Thursday and I received an intravenous injection of 6.6 mCi of Indium 111 ProstaScint. Then I was given instructions for thorough bowel cleansing preparation to be completed over the weekend.
April 21, 2003
I returned on Monday for two hours of scanning. First, I received an intravenous injection of 4.5 mCi of 99m technetium pertechnetate tagged red blood cells. A whole body scan was performed to photo peaks (Indium 111 and technetium). Whole body scans were performed along with SPECT images and pelvis going a complete 360 degrees around my body. I could see the camera going slowly around me, while I was required to lay comletly still. This was the hard part of the test, laying there for a solid hour- then a 20 or 30 minute break - then back for the second hour.
April 22, 2003
I went through another whole body scan along with SPECT images of the abdomen and pelvis at the Indium 111 photo peak - following the same procedures as the day before.
FINDINGS: No area suspicious for distant metastesis. Specifically, there were no findings suggestive of adenpathy.
Mild, asymmetric, increased activity in the right side of the prostate fossa. This may represent some very minimal residual disease locally.
In my case, the ProstaScint scan was suggestive of a possible residual of the disease in the prostate bed.
I was also given a MULTISLICE SPIRAL CT SCAN OF PELVIS WITHOUT INTRAVENOUS OR ORAL CONTRAST:
FINDINGS: Implant seeds are seen within the prostate. There is no evidence for local extension of disease. No significant adenopathy. Osseous structures reflect degenerative change of the lumbosacral spine. A few coloic diverticula.
June 13, 2003 - PSA 4.30 FREE PSA 27.7 ACID PHOSPHATASE, PROSTATIC (PAP) 2.3
October 22, 2003 - PSA 6.24
February 25, 2004 - PSA 11.16
At some point between my ProstaScint scan and March of 2004, Dr. Dattoli took twenty-two (22) biopsies from my prostate. No cancer cells were found.
March 9, 2004
This is the date that I received a letter with enclosed prescriptions for the hormone regimen that I was to start. Before starting I took a bone densitometry test. Then I could begin the regimen which consisted of the following:
1. Casodex, 50 mg, one tablet a day, which I started five days before I received the Lupron injection. I received these three injections, three months apart.
2. Dostinex, o.5mg. One tablet two times a week , i.e. on Mondays and Thursdays.
3. Avodart, 0.5 mg. one tablet twice a day.
4. Fosamax, 70 mg. one tablet once a week.
5. Rocaltrol 0.5,mcg. Onr tablet every night at bedtime.
6. Calcium Citrate, 400 mg. one tablet at evening meals and one at bedtime.
I also had blood drawn every 4-6 weeks while on this hormone regimen. These tests were to check on anemia, liver functions, testosterone levels, calcium and magnesium. I was to be on this for a nine month period.
May 21, 2004 - PSA 0.59
August 09, 2004 - PSA 0.02
November 04,2004 - PSA 0.00 Testosterone 39 NG/DL
As you can see, my PSA dropped down to zero in eight months after starting the hormone therapy. However, it was not without the normal side effects, Hot flashes, breast enlargement, loss of libido etc.
However, I was able to get off of the hormonal regimen in November.
January 24, 2005 - PSA 0.00
June 27, 2005 - PSA 0.64 FREE PSA 31.7 FREE TESTOSTERONE 10.0 TESTOSTERONE, TOTAL 578
My testosterone was back up and I was feeling better. I was getting my strength back and wasn't fatigued all the time. Also, libido seemed to be coming back.
December 06, 2005 - PSA 9.2
December 21, 2005
Started hormone therapy for the second time since 2000, when I had EBRT and Brachytherapy. I took Avodart, Casodex, Dostinex, Lupron, Climera patch, Arimidex, Fosamax, Cholecalciferol , 4000 units daily, Calcium Citrate 400 mg,Periostat 20 mg and a diet/vitamin list that Dr. Dattoli wanted me to follow.
I stayed on this hormone therapy until September 2006.
March 1, 2006 - PSA 0.721 Testosterone 46
April 28, 2006 - PSA 0.18 Testosterone, Total 13
August 2, 2006 - PSA 0.08 Testosterone 12
February 06, 2007 - PSA 0.95 Testosterone 404 FREE TESTOSTERONE 34.7 PAP (Prostatic Acid Phosphatase) was high 5.1
PSA RISING RAPIDLY
July 17, 2007 - PSA 8.49
July 31, 2007 - PSA 11.04
August 21, 2007 - PSA 11.09
September 04, 2007 - PSA 13.03
September 15, 2007 - TOTAL PSA 14.0 PAP 19.5 TESTOSTERONE TOTAL 599 TESTOSTERONE, FREE 1.13
June 2006 Started New Life Style
In June I had an appointment with my opthomologist and he found that I was taking about 22 different pills each day. He asked if I had ever heard of the book "The China Study" by Colon Campbell PHD? I had not. He went into a little detail about the book and convinced me to make the purchase. Dr. John McDougall was referenced in the book and a challenge was made to eat a vegan diet for 30 days. I took the challenge and started this life style, never stopping. "The China Study" convinced me that this life style could help slow down the progression of the prostate cancer. I am a diabetic, and I took medication for diabetes, blood pressure, cholesterol and I also had a 5 bypass heart surgery in 2000, the same year I was diagnosed with my PCa. Sooooo I knew this change was good for me and my over all health.
Because of this lifestyle change fifteen (15) months ago I?m feeling great. I'm not taking any medications at all. I check my sugar every morning and my average runs between 90 and 100. My blood pressure averages around 125-130 over 65-70. I'm walking 3 to 5 miles each morning averaging about 5 miles every day.
However, I feel certain Dr. Dattoli will want me to start back on the hormone therapy. I am debating whether to start back or just to watch and wait. I have sent an email expressing my reservations about going on the therapy. So far, a new test has been recommended and is called 18F FDG PET/CT.
I will keep you posted. I know this has been a long story but it has been 7 years and 7 months since my diagnosis. I believe diet is more important than the hormone regimen, but it is a tough decision.
SEPTEMBER 14, 2007
I am updating from this date because this was my last reading of my PSA when I told you my story of more than 7 years. My PSA was 14,0 ng/ml on this date and had been rising and Dr. Dattoli was saying that I should start back on ADT. I did not want to go back on this hormone therapy at the time. I was in hopes that my PSA would stabilize or maybe drop. I was hoping my plant based diet of fruits and vegetables would help.
SEPTEMBER 28, 2007
A prescription was sent to me for a nuclear test called 18F FDG PET/CT. In this letter from Martha, nurse at Dr. Dattoli's, a regimen was included:
Avodart 0.5 mg twice daily which is claimed to block the testosterone pathway preventing the conversion to DHT (more potent form of testosterone that can fuel prostate cancers to grow).
Casodex 50 mg daily which is an anti-androgen that blocks your body's ability to use the circulating testosterone.
Climera 0.1 mg transdermal patch once weekly which will produce an estrogenic effect and diminish hot flashes.
Reequip 0.25 mg three times daily to diminish the proactin levels
Maintain Eligard, Lupron or Trelstar injections for a period of twelve months along with oral medications; it is an LH-RH agonist and the main medication that will keep your body from producing testosterone from the testes.
Included with letter was prescriptions for routine bloodwork every 6-8 weeks while on these medications.
I was also told that due to the potential bone loss on the hormonal agents, I will need to begin a 'bone integrity protocol' to protect bones from weakening and developing an osteoporosis. These meds include:
Fosamax 70 mg once weekly
Cholecalciferol/Vitamin D 5,000 IU's daily which can be ordered online at LifeExtension.com Periostat 20 mg twice daily to enhance action of Actonel
Also I was to have my bloodwork monitored every 6 weeks as suggested above to include CBC/platelets, testosterone, liver function panel and prolactin PSA&PAP every 6-8 weeks. The creatine, calcium, bone specific alkaline phosphatase & 25hydroxyvitamin D is to be done every three to six months.
I did get my PET/CT scan done but have not started any other meds.
OCTOBER 03, 2007
On this date I went for the 18G FDG PET/CT nuclear scan. After fasting I was injected 15.8 mCi of fluorine 18 FDG. Whole-body scan from the skull base to the upper thighs was performed. Incidental note was made of right maxillary sinus disease. Prostate radiation seeds were noted and there was no prostatic enlargement. There was no abnormal localization of FDG activity.
No abnormal FDG localization to suggest metastasis. Incidental note of right maxillary sinus disease.
I had this done at Cape Canaveral Hospital in Cocoa Beach, Florida, about 11 miles from my home in Cocoa.
The results of this test was a relief to see there was no metastisis or spread to the bones.
OCTOBER 09, 2007
PSA still rising up to 16.51. Have not started on ADT.
OCTOBER 24, 2007
WOW! PSA up to 19.28. I was getting more nervous. Still have not started on ADT
OCTOBER 30, 2007
PSA up to 21.4 and rising. I still am reluctant to start on ADT and have not yet done so.
NOVEMBER 08, 2007
PSA had risen to the max, mine had ever been, 23.910 Still have not started ADT.
NOVEMBER 11, 2007
On the second Sunday of each month "The Healthy Planet of Brevard", a vegitarian-vegan organization that my wife Bev and I belong to, has a Pot-Luck Dinner. We met a very nice couple, Christiane and Roger, who we got into a conversation with about my PSA rising. Christane told Bev about a product called Prostosol that her husband had been using for a long time and assured Bev that it would bring my PSA down.
NOVEMBER 12, 2007
My wife and I checked Prostosol out online and found the cost to be $75 for a bottle of 80 capsules. Aminimum of two bottles had to be ordered. I was not optimistic about these capsules helping but my wife suggested that we try it because our new friend had assured her that Prostosol works. We placed the order online.
November 17, 2007
My order of Prostosol had come in and I started the dose of 2x2 or two capsules twice daily along with the avodart and Cholocalciferol Vitamin D.
NOVEMBER 20 2007
PSA DROPS TO 12.390 FROM PREVIOUS READING OF 23.910. UNBELIEVABLE...I COULD NOT BELIEVE IT. After only three days of being on Prostosol. I have found out that this is similar but an improvement to PC-SPES.
NOVEMBER 27, 2007
After a week of continued use of Prostosol my PSA has incredibly dropped to 3.980. My doctor does not know yet that I am taking Prostosol and have not started the regimen that I received from his nurse. I really am not sure about the effects of Prostosol but it has dropped my PSA very fast and I have only recognized one side effect, my breast and nipples have enlarged to a degree...no more than what happened with ADT the two times I was on it. I will keep you posted.
Nov. 11, 2007 PSA was 23.91. I started using Prostasol on Nov.17,2007 @ 2x2 per day.(4 capsules)
Nov. 20th...PSA 12.39
Nov. 27th...PSA 3.98
Nov. 30th...Reduced Prostasol dose to 2 per day 1x1
Dec. 11th...PSA 0.89
Dec. 14th...Reduced Prostasol dose to 1 per day
Dec. 18th...PSA 0.697 Dec. 26th...PSA 0.501
Dec. 30th...Reduced Prostasol dose to 1 every third day
Jan. 02, 2008 PSA 0.405
Jan. 08th...PSA 0.339
Jan. 15th...PSA 0.437
Jan. 16th...Prostasol back to 1 per day
Jan. 23rd...PSA 0.430
Feb. 04th...PSA 0.31
Feb. 11th...I was admitted to the hospital with a blood clot in the calf of my right leg. Drs. put me on 5 mg of coumadin and was on heparin drip intravenously up to the day of discharge.
On or about
Feb 14th...I had a CT Scan, of the Pelvis, Abdomen and Chest, with an injection of dye or a solution I don't remember the name of.
Feb. 18th discharged from hospital
Feb. 11th...The last dose of Prostasol.
Feb. 20th...PSA 0.323
Prior to starting Prostasol, I was warned that it could cause blood clots. I am not saying that Prostasol was the cause...I only wanted you to know that I did get a blood clot about 2 1/2 months after starting Prostasol. It is unbelievable how fast the Prostasol lowered my PSA. Even though I am not currently using Prostasol, I have not totally decided to give completely up on it. Some men have used a much higher dose for several years without any trouble with blood clots. It is my understanding that we guys with PCa are more prone to get blood clots.
The same member that warned me of the possibilities of getting the blood clots now bets (if he were a betting man) that it has diethylstilboestrol (DES) or estradiol as an ingredient.[What Charlie reports here is very similar to the effects that compounds such as diethylstilboestrol (DES) and estradiol create in some men. DES is used fairly commonly in Britain but more rarely in USA and is virtually impossible to use in Australia because of the perceived danger. It effectively lowers the PSA but must be monitored carefully and supplemented by Coumadin to reduce the chance of thrombosis. Like Charlie's pal, I would also bet that prostasol contains an estrogen compound similar to DES.]
I spoke with Dr. Kirk Donsbach yesterday, Feb. 21, 2008 as to whether or not it had the two ingredients, mentioned. He said that his Prostasol had neither of these ingredients. He said his Prostasol has a phytoestrogen, a natural ingredient.
Before any of you tell me that Dr. Donsbach is a "Quack"...I am aware of what has been said about him on the "Quack Watch". There are letters that dispute these things and also I have listened to a number of his 2 hour radio program each week. There are people who call in that love him and has followed him and taken his products for years. He is a nice man to talk to. You can hear the questions that I posed to him if you go to his archives. You can also question him, if you are interested. This is a very complicated disease of which we have so much to learn.
I wanted to let you know that I did get a blood clot after using Prostasol.
I am scheduled for a color-flow doppler ultrasound/3D Reconstruction and I may get a Helical CT of the Pelvis, Abdomen and Chest. These tests are no longer covered by Medicare. These tests are done at Dr. Dattoli's Cancer Center.
I will be giving an update after these tests.
I had my annual exam, Color Doppler Ultrasound. No evidence of any cancer cells and Dr. Dattoli was pleased with the results I have had with the Prostasol. I was off of the Prostasol for one month when I had the blood clot and my PSA went up from .31 to 3.05. I was started on Coumadin during this month and thought it would cut down the risk of any future blood clots. I don't know for certain if the Prostasol caused the blood clot but I am aware of others that have also had DVT [Anyone interested in the story of a man who suffered a stroke while on prostasol should read Paul Hed's story.] and of course you warned me.
I am back on Prostasol, only 2 capsules per week and my PSA is 0.81. I believe it would come down to undetectable, but I'm keeping my dosage down to only two per week.
Many of you probably wonder why I get blood work so often...some have said a doctor would not give me a prescription this often. I have the tests done on my own at a hospital here in Brevard County that has a health fair every day. The PSA test only cost $10 and a lipid profile is only $10. Even though no one knows absolutely that Prostasol causes blood clots...I'm still concerned. I adjust the dosage of Prostasol according to the results of my PSA readings. I'm also concerned with all aspects of my health and have goal of trying to maintain my cholesterol below 150. I truly believe that Lifestyle Medicine will help fight the prostate cancer and help me to maintain a healthy lifestyle. I believe I have stated in earlier updates that live a vegan lifestyle. Didn't start till I was age 70.
11-21-08..PSA 1.16 Cholesterol 171
12-09-08..PSA 1.27 Cholesterol 172
1-06-09 ..PSA 1.63
1-29-09 ..PSA 1.52
2-04-09 ..PSA 1.80
3-04-09 ..PSA 3.58
3-10-09 ..PSA 3.94
Time to increase dosage so I started 2 Prostasol per day.
3-17-09 ..PSA 2.74
3-24-09 I returned to Dr. Dattoli for my annual evaluation and management of my prostate malignancy. It had been approximately nine years since I underwent a definitive radiation regimen for interstititial brachytherapy using the palladium-103 isotope in 2000 although I relapsed biochemically in 2003 following which I was started on definitive hormonal therapy which concluded 09/06 after my PSA precipitously dropped. My PSA did rise as high as 23.9 and it was then that I started using Prostasol and Avodart. I had no bladder symptoms, no bony aches or pains or no bowel symptoms. My Prostate exam per the 3-D color flow doppler ultrasound analysis (completely normal study) CT Scan of the Abdomen : Conclusion:
No retroperitoneal lymphadenopathy
Colonic diverticular disease
Atherosclerotic vascular disease
Dilated bilateral renal pelves associated with peripelvic renal cysts.
The study was otherwise negative for metastatic disease spread.
CT Scan of the Pelvis: Conclusion:
There is an enlarged left external iliac lymph node. This patient is status post palladium-103 seed implantation. There is evidence of rectosigmoid diverticular disease. There is no evidence of metastatic disease spread.
Scan of Chest without Contrast: Conclusion:
No evidence of metastatic disease spread to the chest region.
3-31-09 ..PSA 2.03
4-13-09 ..PSA 1.61
5-22-09 ..PSA 1.24
On 5-22-09 I started 1 Prostasol every other day instead of 1 every day.
5-22-09 .. Cholesterol 144 HDL 48 LDL 66 Trigly 152
6-16-09 .. 1.38
6-26-09 I stopped taking coumadin because I needed some teeth pulled out.
7-7-09 .. PSA 1.22
7-7-09 .. Cholesterol 162 HDL 51 LDL 77 Triglcy 171
7-22-09 ..PSA 1.05
7-22-09 .. Cholesterol 153 HDL 57 LDL 71 Triglyc 127
7-30-09 ..PSA 1.25
7-30-09 .. Cholesterol 168 HDL 60 LDL 83 Triglyc 126
8-14-09 ..PSA 1.11
8-14-09 .. Cholesterol 142 HDL 49 LDL 72 Triglyc 107
9-11-09 ..PSA 1.55
9-11-09 .. Cholesterol 148 HDL 52 LDL 72 Triglyc 122
10-06-09 .PSA 1.77
10-06-09 .. Cholesterol 164 HDL 55 LDL 78 Triglyc 157
10-20-09 .PSA 1.87
10-20-09 .. Cholesterol 162 HDL 53 LDL 81 Triglyc 142
10-26-09 I reduced my Prostasol to 1 capsule 3X each week-Monday Wednesday and Friday
11-06-09 .PSA 2.00
11-06-09 .. Cholesterol 167 HDL 58 LDL 81 Triglyc 140
Well, I am still alive and kicking and I feel well. I'm a little embarrassed about my breast being so large but they don't hurt. The only other side effect is my testosterone stays very low when I take increased doses of Prostasol. I'm playing lots of golf and keep my lawn up and do anything else my wife finds for me to do. We follow Dr. John McDougall's Lifestyle Medicine.(Vegan) Yes, I am still concerned about blood clots but there are many that have blood clots that do not use Prostasol. I am currently on no prescription drugs. I believe drugs are prescribed for risk factors and not curing the cause of the chronic disease. O.K. I'll get off of my Lifestyle Medicine soap box. God Bless us all. I'll talk to you next update...if not before..
Later: Important addition to Nov 2009 update. At least I think it is important because anyone reading this might wonder about the period between the time when my PSA rose to 3.05 on 3-11-08 when I was not using Prostasol and 11-21-08 when my next PSA was given 1.16.
During this 7 month period, April until November 21, 2008 I was taking one (1) Prostasol a day and had my PSA tested at least 8 times and it never went above 0.86. The men that use Prostasol or may be thinking of using it, I believe, need to know the results I have had using it.
I do want to stress to you, that I am not promoting the use of it and in no way that I'm saying that it will cure Ca. I also, don't know whether or not it causes blood clots. Some men have used it or PC Spes for years and have not had blood clots. Then there are those like Paul Hed, that did get blood clots after using Prostasol, which also includes me.
Gosh, darn, this is a complicated, complex disease. Each of us must choose his own poison.
On Monday April 18, 2011 I had my annual color flow doppler ultra sound done at Dr. Dattoli's office in Sarasota, FL. Again there was no evidence of any cancer cells in my prostate. On April 14, 2011 my PSA was 7.65. The Q+ I have been taking has kept my PSA below 9.0. Since my seed implant in 2000, and ultimate chemical failure in 2003 and after various tests done over the years, there has been no evidence of any cancer cells. However my PSA reached 23.0 at one point at which time I began using Q+ and have been able to keep it down below 9.0.
Dr. Dattoli told me about a test that was being done, I believe in Switzerland, that could pinpoint cancer cells in lymph nodes and other areas of the body. The cost was about $15,000. You can now get this test done in Orlando, Fl at a cost of $900. The drug Ferahene [the compound is Feramene - see below] is injected followed by CT and MRI's. I am trying to find out more about it. Below is a copy of the purpose of test.
Purpose: Preoperative detection of lymph node metastases in patients with prostate or bladder cancer is crucial for selection of the appropriate treatment strategy (surgery, androgen deprivation with/or without radiation therapy or chemotherapy) and thus for patient prognosis. Until now CT or MRI have been the modalities of choice for preoperative staging procedures. However, current morphological assessment of lymph nodes based on size and shape is unable to detect smaller metastases or liable to give false positive results on lymph nodes with reactive hyperplasia. We hypothesize that USPIO-enhanced MRI combined with DW-MRI will be able to detect pelvic lymph node metastases preoperatively with high sensitivity and specificity
Your opinions and comments are appreciated.
[The reference to Feraheme (not Ferahene) is the scanning method in the place of a scanning system marketed as Combidex, which was greatly favoured by Dr Strumm (amongst others) because it was claimed that it provided much more information than other scans. Regrettably the manufacturers of Combidex failed to obtain FDA approval (some say because they didn't understand the complexities of the FDA rules sufficiently - see The demise of Combidex / Sinerem) and because the scan never gained much support in Europe, where the manufacturer resided, production was stopped. The doctors who beieved in Combidex now support Feraheme, but see FDA feraheme warning.]
Today is November 12, 2011.
Since my last update in April 2011 I have been using Prostasol or Q+ and my PSA has been in a range of between 7 and 18 depending on how many pills I would take in a day. However, with most of the men, including me, Prostasol has become less effective. Certain lot numbers would be effective but then it reached a lot number that proved to be less effective. This has been reported on a yahoo website with men who use alternative type treatment. I decided to start back on the Lupron, casadex, and avodart which I had previously used.
This decision was made about the same time I was having trouble with urinary track infection.
On or about Oct. 01, 2011 I started having trouble urinating in the normal way. In order to urinate, I had to sit on the edge of my bed and lay back which enabled me to get a flow of urine which I would catch with a urinal. I took a sample of my urine to my primary care physician, Dr. Ralph Page. It was determined that I had a urinary track infection and was prescribed an antibiotic. After 7 days the infection had cleared up. However, I was still required to lay back on the edge of the bed in order to urinate in a normal way.
On 10-25-11 I had an appointment with Dr. Wolff my urologist. A cystoscopy was peformed. A catheter was inserted in my penis up into my bladder and 1000 cc's came from my bladder. It is my understanding that the bladder normally holds about 500 cc's. My ankles and feet were swollen and Dr. Wolff asked when I saw my cardiologist last? I told him it had been over a year because I felt I had no need to see him since my Cholesterol was usually very good and that I kept track of it on a regular basis. The Dr. instructed me to make an appointment ASAP and also an appointment with a medical oncologist. I was scheduled to come back on 11-15-11 to see Dr. Wolff. I assume the catheter will be removed at that time.
11-02-11 I had an appointment with Dr. Muwalla (pronounced Mola) a medical oncologist for an initial interview. He scheduled me for a Nuclear Medicine Pet/CT Bone Scan from the skull to include The entire Lower extremities.
11-7-11 the tests were given
11-8-11 appointment with cardiologist, Dr. Shiek. Electrocardiogram was perfect. Everything good.
11-9-11 Back to Dr. Muwalla (Mola) for results of bone scan etc. see results below.
Comparison: CT chest, abdomen, and pelvis same day
FINDINGS: Again, there are changes from a prior median sternotomy. On this study, these remains mild left hydronephrosis with dilation to the left pelvis. Contrast is now seen within the distal left ureter without a focal mass or discrete transition zone, and again, this may be related to an elementof underlying ureteropelvic junction stenosis. The remainder of the soft tissue findings are stable. At the posterior right superior acetabulum, there is a focal area of increased uptake having an SUV value of 9.2. No corresponding CT bony abnormality. Some scattered degenerative changes to the lumbar spine. However, at the left side of the 1.2 vertebral body, there is a focal area of increased uptake having an SUV value of 14.1. Additionally, at the right side of the L1 vertbral body, there is a focal area of increased uptake having an SUV value of 13.0. There is some apparent degenerative spurring anteriorly at the left side of the L1 vertbral body. There is warm uptake within t he lower thoracic spine more characteristic of degenerative changes. Warm uptake about tje sternum noted, very likely degenerative in this patient with a prior median sternotomy. There is intense uptake involving the upper thoracic spine, particularly at the T3 and T4 vertibral bodies with SUV values of greater than 30. It is difficult to demonstrate a corresponding CT abnormality, although there are certainly coexisting exuberant bony degenerative changes at this location. There is a focal area of increased uptake just posterior to the left first costochondral junction as seen on image #77 with an SUV value of 31.7. It is difficult to define a corresponding soft tissue mass or discrete bony abnormality. There are certainly some degenerative changes at this location.
Areas of abnormal uptake within the upper thoracic spine, upper lumbar spine, and right hip as above. There some corresponding degenerative changes associated with this, although the uptake is certainly greater tha that of background activity. A discrete suspicious CT abnormality, however is not appreciated. Findings are nonspecific, although certainly could be seen with bony metastatic disease, although the CT findings are not compelling for this. Suggest bone scan for clarification and correlation for serial PSA values. See above.
The above bone scan is part of a study being made where sodium fluoride is injected in the patient. This test using sodium fluoride is supposed to be superior to other types of bone scan.
The results were read or interpreted by two different doctors.
The second doctor, who is supposed to be an expert, gives the following impression.
IMPRESSION by alleged expert:
There is abnormal intense uptake in the area T-5 with abnormal hypodensity on the CT...this would be consistent with mmetastatic lesion. The focal area in the right superior lateral acetabular area is also consistent with a met. The rest of the findings are degenarative. No need for a regular bone scan scan.
There was no mention of T-5 in the spine by anyone else or in any of the findings in any of the tests. I find this interpretation to be questionable. Since T_5 was not mentioned anywhere in the reports.
On this same date:
CT CHEST WITH CONTRAST
1. Tiny lung nodules as above, nonspecific, although more suggestive of past granulomatous disease. No pathologic adenopathy.
2. Bilateral gynecomastia. See above.
CT ABDOMEN AND PELVIS WITH CONTRAST:
1. Mild left hydronephrosis with dilatation to the left renal pelvis. This may be related to an element of ureteropelvic junction stenosis. The left ureter is never well adequately evaluated with contrast, although no appreciable stones or hydroureter.
2. Postprocedural changes about the pelvis. No pelvic mass or adenopathy.
3. Tiny gallstone.
4. Advanced sigmoid diverticulosis.
According to Dr. Muwalla, a spot was detected in my right hip and a spot at T-5 of the spine. and he now classifies my PCa as Stage IV (4)
He scheduled me for an MRI specific to T-5 in my spine.
11-11-11 An MRI was performed on me which was to be specific for T-5. I do not have the results back yet.
Tonight 11-13-11 as I write this, I am in a quandry as to what option I should choose for treatment of the mets to hip an T-5 spine. I also wonder why Dr. Muwalla did not have me get an MRI of my right hip?
I am considering Samarium-153 intravenous infusion during treatment but first going to Sandlake Imaging in Orlando for test USPIO study to find possible disease in lymph nodes and then go to Dr. Michael Dattoli for DART treatment and the Samarium. Dr. Dattoli is in Sarasota Florida at Dattoli Cancer Center.
Another consideration is cyberknife to hip and T-5 of the spine along with hormone therapy, Lupron and casadex. This would be at the Brevard Cancer Center of Brevard.
Dr. Muwalla recommends fermagon with casadex and Provenge if the hormon therapy fails. Dr. Firas Muwalla, Medical oncologist is at the Space Coast Cancer Center in Brevard County Florida.
Since Dr. Muwalla classified me as Stage IV with mets to right hip and T-5 in the spine. I don't know what my survival time is for a diagnosis like this. I'm scared.
Later: November 20, 2011 I am giving this update.
November 15, 2011 I went back to my uro with hopes that the catheter would be removed. Dr. Wolff did remove the catheter at 8:AM and told me to go home, drink plenty of water and walk as much as could. I was then to return at 11 A.M. to see how things were working. I still could not urinate. Another catheter was inserted and I was to come back in a month. I walked about two to three miles between 8am and 11am. I noticed my ankle and foot seemed to be swelling a little bit. I think I had fastened my shoe on my right foot to tight.
November 16, 2011 Appointment with Dr. Muwellaw to get the results of the MRI done on November 11, 2011. The MRI confirmed the mets at T-5 in my spine. I'm still curious why an MRI was not ordered for the mets in my right hip. We continued to discuss my different options for treatment. I told the Doc I was considering cyberknife to the mets in my bones. He suggested that I really didn't need this but only needed to start back on hormone therapy. (firmagon) If I should start having pain in my bones I could then consider cyberknife or Truebeam by Varium. He explained that this could be done at his office, Space coast Cancer Center. I had never heard of this and would like to make an appointment with the radiation oncologist, Cynthia Bryant.
November 18, 2011 Appointment with Dr. Cynthia Bryant, radiation oncologist, for a better understanding of the trubeam machine and its treatment. It was explained that it was the same as cyberknife. [It is not easy to find any information on the Varian Truebeam system that is not written by the manufacturers. It is not clear why it is claimed that it is 'the same as' Cyberknife. ] I was very impressed with Dr. Bryant because of the positive feelings she left me with. I was a little down emotionally when I went in and came out with positive feelings. I also told her about my right foot swelling and being red and it seemed to have the symptoms of a blood clot. She gave me a prescription for an ultra sound to get it checked out. I had the test when I left her office at the new Viera Hospital next door. Thank goodness it was not a blood clot. I plan to probably start on the hormone therapy, probably firmagon, next week. before Thanksgiving. Hopefully the size of prostate will reduce in size and enable a flow of urine and I can get the catheter out soon.
I had hoped to live until 100 but these darn bone mets has got me scared.
God Bless Us All,
April 3, 2012
After finding out that cancer had metastisized to my right hip and T-5 of my spine I became scared. It was like being diagnosed for the first time. Decisions had to be made as to how I would proceed.
Below is a record of my PSA from March 11, 2011 up to the present.
12-06-11 30.85 Lupron and Casodex was also started on this date.
03-11-12 I began taking ZYTIGA(abiraterone acetate)
After considering many options, as you can see, I decided to try Lupron and Casodex again and started this on Dec. 06, 2012. You can see by the above PSA readings, the Lupron was not working and it appeared I had become hormone refractory. I should say I am now a man with mCRPC (metastatic castration-resistant prostate cancer).
I could not afford to go to Sand Lake Imaging, in Orlando, to find out if the cancer had spread to my lymph nodes. This would then have been followed up with treatment from Dr. Dattoli in Sarasota for many weeks of DART treatment along with Samarium-153 intravenous infusion.
Neither could I afford going to California for treatment with Dr. Bob Leibowitz. I think I would have tried his program, if it had been in Cocoa, FL., my home. The link below will take you to a presentation by Dr. Bob and Dr. Turner which tells about their treatment. (The link provided did not go to a current page)
I finally decided to try ZYTIGA and began using on March 11, 2012. It is an oral medication that I can take at home along with prednisone. It is for men who have metastatic castration-resistant prostate cancer (mCRPC). Zytiga works by interrupting the androgen-making process at an important step thereby reducing the amount of androgen being made. Zytiga blocks androgen production at three sources - the testes, the adrenal glands, and the tumor itself. In the clinical trial, the median survival for men treated with zytiga plus prednisone was 15.8 months for men taking placebo plus prednisone. My Dr. still wants me to try Provenge. I may do so, if Zytiga fails to help.
I have started getting a little pain at T-5 of my spine but advil seems to keep it in check. I have been down a little lately but thanks to Terry and this website I am getting back to positive feelings. After reading the stories of some of these men who have similar problems as mine and have lived many years, and still living it has given me hope for a few more years. Thanks to everyone and
God Bless Us All,
Phone 321 632 2898
On March 11. 2012 I started on Zytiga and prednizone. In June 2012, I decided to add provenge to my treatment and completed the three apheresis treatments and finished the last one on 7-12-2012. CT Scans, Bone Scans MRI's have shown my cancer has metastisized to my right hip and T 5. 6, and 7 of my spine. I asked about zapping my spine and hip with True Beam radiation by varium. Dr. Muwalla said when I started getting pain we could then use radiation.
I never seemed to get any pain except minor which I could handle with advil. By the end of July 2012 or the first of August 2012 I started having trouble with balance and walking and needed to go from one piece of furniture to another in order to keep my balance. When going to bed at night, I would think all would be fine the next morning. However it became worse, but with no pain. Finally on 8-7-12, I fell while taking a shower on our pool deck. On 8-15-12 I called Dr. Muwalla and the nurse told me to come see Dr. Muwalla the next morning 8-16-12. Dr. Muwalla sent me to the emergency room and I was admitted to the Cape Canaveral Hospital. On 8-22-2012 I had an open MRI came home and fell for the second time. I was taken to Wuestoff Hospital on Wed. 8-22-2012. The results of my MRI showed the cancer Had spread even more on my spinl column. The cells were compressing arounf my spinal column. There was still no pain but the variouse doctors to ld me I had 3 choices. One was surgery, 2 was true beam radiation and 3 was do nothing. I chose true beam radiation. The first of 10 treatments was started immediately on 8-24-2012. It was a real chore getting to these treatments because I was no longer able to walk. I'm very upset because I had asked about getting radiation back when we first found it had metastasized. I was told, no need until I start getting pain. I was never warned to be on the look out for imbalance and walking problems. My treatments are over and Dr. Bryant doesn't give me any chance for being able to walk again. However, I am not giving up and I'm working with a physical therapist several times a week. A month ago I could walk---now I'm unable to walk. I truely believe if I had radiation when I first asked about it, I would not have had this problem and I would be walking. I hope the oncologist have learned something from this. The quality of life has been shot to hell. Not being able to walk gives me reason to question whether I want to extend life with chemo. I'm really down in the doldrums. Of course, I am better off than many. Some with no legs or arms and paralyzed. I am wearing my wife, Bev, my care giver out. I do have some good things to be thankful for. I just believe this could have been prevented with early radiation.
God be with the rest of you, fighted this dad-gum disease.
Cocoa, FL 32922
Phone 321 632 2898
We received the sad news of Charlie's passing from Beverly. She said:
With great sadness I wanted to let YANA know that my wonderful sweet Charlie Redd passed away on June 4, 2013. His prostate cancer had spread to his spine and he was bedridden for 7 months. With Hospice care he was able to be at home all the time. By the Grace of God he was in very little pain. His death was very peaceful with most of the family around him. His memorial service will be at North Merritt Island Methodist Church in Merritt Island, FL on June 15, 2013, 11:00 am.
Blessing to everyone fighting this dreadful disease.
Take care, Charlie's wife Beverly Redd