Doug F lives in Michigan, USA. He was 67 when he was diagnosed in November, 2004. His initial PSA was 6.30 ng/ml, his Gleason Score was 9, and he was staged T3a. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy).
Here is his story.
I started yearly PSA testing in 1995. My PSA stayed about the same for the first few years, then it started to climb. In 2004 after a biopsy (at the age of 67), I was diagnosed with a Gleason 4+4 and 4+5 prostate cancer. I then had a Radical Prostatectomy, followed by salvage radiation. Neither worked. It was already systemic prior to the removal of the prostate. I had advanced prostate cancer that was very aggressive. My PSA can double every 10 to 12 days if I’m not on some kind of treatment.
I went on hormone therapy after I found out it was systemic. This worked for only a few years. Eight months continuous, and the rest of the time on intermittent therapy. I did Lupron by itself, and also Combination Androgen Blockade (CAB) with Casodex and Proscar. I then became refractory to Lupron. My PSA would go up even though I was at a castrate level. So, I started Estradiol patches. First on one patch .1mg, then followed by 3 patches, and ended up using 4 patches .4 mg. With 4 patches I was able to get my testosterone to lower than castrate levels. Sometimes better than when I was on Lupron. I was on the patches for 15 months and maintained an average PSA of 1.2 to 1.6. My highest Estradiol level during this time was over 500. This is a much higher Estradiol level than most women over the age of 45 would have. I knew if I wanted my PSA below 0.1ng/ml, I would have to use between 6 and 8 patches per week. This was a total pain… because they are very hard to keep on your body. I also would have to keep my Estradiol level somewhere over 700.
Then I decided to make an Estradiol compound that would replace the patches. Just rubbed the gel on my arm daily. It worked for me, but not as good as I wanted. I found that my math was horribly incorrect. I put the compound to rest for a while and will get back to making a new compound at a later date. I’m confident that the next time it will work much better than my first try did. Remember that the pharmaceutical companies would have run this trial for years with many patients. I ran it for 3 months with one patient, myself. Luckily, I was able to keep my PSA very low through the years….. Even though I had a very aggressive cancer, my highest PSA was 2.33 ng/ml for about a week. The rest of my PSA readings were below 2.0 ng/ml. This requires constant attention to keep it under control.
Going back to 2004: Prior to finding that I had prostate cancer, I met Harry Pinchot from PCRI (Prostate Cancer Research Institute) and Brad Guess (who at the time worked as a PA for Dr. Mark Scholz) for lunch. Most of the discussion at lunch was on prostate cancer. One of many things that I learned from Harry that day was…
• You have to know more about treating your prostate cancer, than the doctor treating you.
• The other thing that I learned from him was you had to do a lot of studying in order to stay ahead of the game.
He felt that many new drugs and treatments would be coming available in the near future. “And he was sure right on that comment.”
Harry and I had many interesting discussions over a four year period. He was the most knowledgeable lay person I had ever met anywhere in the country on prostate cancer. It was a major loss to prostate cancer patients when he passed away in January of 2008.
As Harry said, do a lot of studying. So I started studying advanced prostate cancer for the next 8 years. I still average 30 to 40 hours per week looking at a computer screen. I am also very involved with two support groups in Michigan. I either give a talk or show talks given by doctors from around the country. I also talk to many PCa patients around the country on procedures and available drugs for treating their prostate cancer. I’ve been blessed by having a doctor that has allowed me to make my own decisions on how to treat myself since March of 2007. My first decision was when I decided to go on intermittent hormone therapy (we usually discuss the new protocol to make sure I don’t kill myself).
Dexamethasone is a drug that I have wanted to try for the last 3 to 4 years. I tried it for a month about a year ago. At that time, my T [testosterone] level was between 60 and 80. I found it will not work unless your T level is below 20, preferably as low as you can get it, like below 10. I wanted to prove that it wouldn’t work having a high Testosterone level.
For the time being I went back on Lupron, knowing that it would not work for me. But that was OK……. all I wanted it to do was get my T level below 15. I added an Estradiol patch to assist the Lupron in lowering the T level… it worked.
The patch will usually reduce your T and PSA level. The patch will also reduce your hot flashes that are a pain for almost all of us on hormone therapy. Or you can use them alone to treat your cancer without any other drugs. They will also reduce bone loss. I have seen patients recover over 60% of their bone loss by using about 8 patches, but always check with your doctor first. So, then I started using Dexamethasone 1 mg per day along with Lupron to get a synergistic response, and it worked. In 30 days my PSA went from 1.63 down to 0.06. I also put on one patch .1 mg for two weeks to help keep my T level as low as I could get it. The next 30 days it dropped from 0.06 TO 0.007 (undetectable).
Knowing that Dexamethasone and Prednisone are in the same family of drugs, I decided to try Prednisone 7 mg for 30 days to see if it would work for me the same way that Dexamethasone did. But Dexamethasone has a couple pathways that Prednisone does not have. Just as I thought, it didn’t work at all, even though my Testosterone level was below 10 ng/dL as a result.
On Jan 29, 2013 my PSA went from 0.007 up to 0.13 — quite a jump for 30 days. Just a little information: (1.0 mg of Dexamethasone equals 6.6 mg of Prednisone). I then went back on Dexamethasone, but this time I dropped the dose from 1.0 to 0.75 mg to see if a lower dose would work.
March 4-2013, the PSA dropped from 0.13 to 0.05 with a T level below 10. I would have to see how much energy I still had left with a dexamethasone dose of 0.75 mg. One Estradiol patch was also used with this test. I used the same protocol until APRIL 8-2013, which was the last month from my 3-month Lupron shot.
On April 8, 2013 my PSA dropped from 0.05 to 0.01 PSA <0.01, T level below 10. My next update and posting will take place after May 10, 2013. Stay tuned.
There are a couple of more ways that I’m going to treat myself over the next few months. They too will be posted once I finalize the course of action of exactly what I’m going to do. I ran a DHT [dihydrotestosterone] blood test to see what my DHT level is while using Dexamethasone. I knew it would drop it but wasn’t expecting it to drop as much as it did. Normal levels are 119 to 719, mine went down to <2.50 or less. This proves to me that Dexamethasone will take care of DHT levels. Remember DHT is anywhere between 5 to 8 times more potent than normal Testosterone levels. This is something that all advanced patients should monitor periodically, in my view.
A WORD OF CAUTION
— Remember that Dexamethasone is a steroid. You will have to drop the dosage slowly when you decide to get off the drug. There are many people that have used both Dexamethasone and Prednisone that have had problems when they are trying to wean off the drug. Most have been on very high doses, and some have just failed to reduce the dosage slowly enough. My goal is to start at 1.0 mg, then drop to 0.75 mg, and then maybe to 0.50 mg. (From 1 mg and below is considered a low dosage).
Check with your doctor and pharmacist before you try using this drug because of the possibility of drug-drug interactions…….and also how they recommend weaning off of it.
UPDATED April 2013
1) April 8-2013 PSA my dropped from 0.05 to <0.01, T level below 10.
2) My next treatment will be two drugs only, 4 Estradiol patches (.4 mg to keep my T level low) and Dexamethasone .75 mg.
3) I will see how this new protocol works for me in about 30 days.
4) I have a couple more ways I’m going to treat myself over the next few months. I will post the details as soon as I know what I’m going to do.
UPDATED May 2013
Blood test results from May 8th were PSA 0.004 (T level below 10). My next treatment I will be using the same two drugs, but increasing the Dexamethasone from 075 mg to 1 mg. The reason I’m increasing the Dexamethasone is because I also have a disease called PMR that is normally treated with prednisone. I’m doing the two birds with one stone treatment. I will see if this protocol will continue to work for me over the next month or two. My thoughts as of now are to run this until it fails. As we all know, this treatment is just a temporary patch until the cancer outsmarts what I’m doing. If anyone tries treating themselves this way, let me know what kind of results you obtain. There have been 5 of us (that I know of) that have tried it. It worked on 3 and failed on 2.
*Doug’s e-mail address is: email@example.com