Here’s an update and my experiences participating in a Testosterone trial through the VA. Later I discovered that I was the first person to be a part of this trial in all of the United States. My medical oncologist said that if we could get six to seven months on this protocol that we’d be doing well. However, not using chemotherapy drugs by itself made this trial worthwhile.
Just to recap: prostatectomy spring of 2002, 33 days of radiating a 4” core where the prostate used to be in the spring 2004 at the same time given 5-9 years by my radiation oncologist due to the earlier biopsy results showing that the cancer had inundated the removed prostate and good portion of my bladder plus my PSA numbers were rising after radiation, and an orchiectomy late spring of 2021 which allowed me to get off of the Lupron and the terrible side effects I was having after over the three years of use.
I began the testosterone trial 12/1/21 with my then current PSA of 49 and ALP 401.
The results after my first testosterone shot on 12/23/22 my PSA numbers were 112 and ALP was 215 (I was really concerned but was reassured not to jump ship yet).
1/4/22 my PSA was 65.3 and ALP 312.
2/1/22 my PSA was 25.3 and ALP was 145.
2/22/22 my PSA was 7.77 and ALP was 117.
3/22/22 my PSA was 3.11 and ALP was 88.
4/19/22 my PSA was 3.01 and ALP was 75.
5/17/22 my PSA was 3.81 and ALP was 74.
6/14/22 my PSA was 5.37 and ALP 65. My next shot and blood work is scheduled for 7/21/22 (I had a second round of Covid).
Take away: I’ve had a wonderful reprieve from the chemo drugs. I’ve been feeling better each month that I’ve been on this trial. My numbers are starting to increase again but I’ll remain on this protocol until it’s obvious that the testosterone is no longer working. Knowing that sugar and testosterone are cancer’s fuel of choice, it is counter intuitive that this type of therapy is even working. I can only imagine that the cancer is confused after being starved from testosterone over these many years.
Anyway, I submit this information for your consideration hoping that you too may have some of the same positive effects that I’ve had. Where we go one, we go all.
Michael
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I'm in the Denver Metro area using the VA medical system. This trial comes out of Seattle through the VA. If you have access to the VA I'd inquire through them.
Sugar is not the preferred energy source for PCa, except when very advanced cells turn to glycolysis.
& testosterone [T] is not a fuel either. The driving forces are the AR coregulators. T is simply growth-permissive. Normally, T regulates the prostate size quite well. When things go south, T has fallen by >50% in most men.
In terms of fuel, the body has an ample supply of fatty acids & glucose. They do not determine the PCa proliferation rate. The cancer is making that decision & is merely taking what it needs.
At a certain point, you may consider the schedule that I followed for many years.
3 months on ADT followed by 3 months of high-T. Two complete cycles per year.
The ADT phase is easy to put up with & the 3 months of high T is an enjoyable reward.
During the beginning of my third year besides the ongoing diminishing strength I had terrible abdominal pains and aggressive loss of strength and balance. I was at a point of asking them to open me up because I felt like the cancer was ravaging me. After the orchiectomy my whole life started coming back. Now with no Lupron and this testosterone trial even my balance is coming back.
Michael, thank you for your story. I don't quite understand how the medical community is now recommending Testosterone supplementation after hormone inhibition. I had RALP in Aug 2020 followed by 8 weeks of external beam radiation (3 heavy stages) in spring of 2021. My PSA is good (<0.1) and my T is slowing increasing but still extremely low under 50. I asked about T supplement, but they say to let it increase naturally. I guess I can't complain about low T given my good PSA, but I long for the return to normalcy. On low carb permanent diet as sugars are a C fuel, but the T issue seems to be changing. Does it help or hurt? Thanks to you for being in the trial and please update us as you improve.
I read about this trial (or at least one very similar) and I understand the logic. I may be oversimplifying, but oversupplying testosterone forces cancer cells to reduce the activity of their receptors as a self-preservation mechanism. Then, once the receptors have gone partially dormant the testosterone is taken away and now the cells need to bring the AR receptors back up to speed. Then the testosterone is oversupplied again, then taken away, etc.
Good news and thanks for sharing. Can you give more info about the study? I saw where you said Denver and the VA but I'd like to study the setup and so forth and couldn't find that particular one. Finding the right balance for T is a key for beating back the PCa. Realizing the membrane receptors use T in a different way than the rest of the AR is also important. Glad you're feeling better.
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