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This member is a YANA Mentor This is his Country or State Flag

TJ Reed lives in Texas, USA. He was 49 when he was diagnosed in August, 2008. His initial PSA was 3.00 ng/ml, his Gleason Score was 7, and he was staged T1c. His choice of treatment was External Beam Radiation+ADT (Proton Beam with ADT). Here is his story.

I had my first sign that something was wrong in 1983. I was in grad school. I woke up one night to pee and I ended up pissing on the floor and sides of the toilet. Oh, did I mention that it was painful, too? I did not take concern over this as no one talked about prostate issues when you are only 22, nor did I know what a prostate was, or what it was suppose to do. I never went to a doctor, as I discovered I did not have any issues during the day, and at night I could just sit down and gain 100% accuracy. I've been sitting at night ever since. The following years I would experience major pain in my pelvic area upon having a bowel movement but thought it was related to not enough sex.

Later years this would continue, even after marriage, but again thought it was related to not enough sex.

I had my first PSA at age 40. It was 1.78. Since the DRE did not show a lump the doctor decided to not refer me to a urologist.

In July 2007 I noticed that my libido dropped. It wasn't zero, it just wasn't strong. My wife insisted that I go to the doctor. I made an appointment with the dentist too (it had been 5 years since my last visit). The dentist found that I had a serious infection (abscess) in a tooth that had a root canal done 5 years earlier. He prescribed antibiotic to kill the infection, and I noticed that my libido had come back as the infection died. My MD found the PSA had risen to 2.5 and my testosterone was 311. He sent me to a urologist who suggested we wait 6 months and retest.

About 8 months went by before I went in because again my libido had dropped. This time the PSA was 3.0 and testosterone was 417. The urologist scheduled a biopsy. I insisted that it would be done under general anesthesia as I have serious white coat syndrome. That was the second best decision I made. I was a nervous wreck the day of the biopsy. Not having to force myself to "lay still" during the procedure was heaven. I just remember waking up when it was over. If your health permits and you too have doc-anxiety, then opt to be drugged. The other benefit was that the doctor checked out my penis while I was out. This would not have happened while I was awake. He told be that all went well, that there where no abnormalities, and that he did not expect to find anything. He took 10 cores, 5 on the left, and 5 on the right.

I came back the following week and was told, much to his surprise, I had cancer, Gleason 7, 3+4, none found on the right side, but two cores on the left had small amounts of cancer. He suggested that I have surgery (open surgery as this was his specialty) because of my age of 49, African-American, and relative good health. I asked about quality of life after surgery and he said the goal was to save my life first, and worry about quality later. I opted for another opinion.

I talked to several doctors from many different specialties. I considered alternative therapies such as IPT (insulin potentiated therapy - low dose), natural hygiene, raw foods, surgeons, radiologists, oncologists, and my wife. I was very intrigued by the alternative options, but when I asked for happy customer references who had been treated successfully for PCa, all I got was mostly blank stares and promises that their program would work. One hygienic practitioner told me a story about his friend (a doctor of natural hygiene) who had beat cancer by following a hygienic lifestyle, and stayed cancer free for 25 years. The cancer came back and he tried again to follow the hygienic protocol, but died a horrible death. This hygienic doc felt his friend would have probably died from the cancer, but did not have to have such a terrible end. He would not suggest to me what I should do, but was very clear that I had to take an aggressive action. I pondered his story as I made my decision . I was impressed that he was not a quack trying to make a point, but could see a benefit in traditional medicine.

I scheduled appointments with MD Anderson doctors, surgeons, radiologists, and oncologist. A friend suggested I look at protonbob website. I read most of the testimonials and talked to several members who had the treatment. One had gone through MD Anderson. I decided on going with MDA, 6 months ADT plus 8wks of PT (Proton Therapy), as MD Anderson upgraded my Gleason to 4+3, and my wife was committed to me getting well. I don't think I could have done this without her support.

I started Lupron in Dec'08 with a 28day supply of Casodex. At the time of my simulation (Mar'09)my PSA was 0.1 and testosterone was 21. I started having hot flashes 4wks after the first shot, and my libido went out the door about the time the hot flashes started. I started gaining weight about the 8th week into the ADT. I have gained about 16 lb to date, and neither exercise not diet seems to stop the gain. I now have sympathy for those people of the world who say that they can look at food and gain weight. My blood pressure is fine, I check it weekly now. My radiologist does not think I have to worry about blood sugar levels as this will only be a 6-month ADT protocol. My mood is good.

I started PT mid Mar'09 (and had my second/last Lupron shot). I will start PT week 6 on April 13. I have no major issues from the treatment thus far. I have my special 'tan' spots on each hip where the beam is aimed, and I started experiencing weak stream when I relieved myself during the night. I started Flomax for that and so far that seems to have fixed. My doctor says I may have to increase the dose as I progress through the latter weeks of PT. I have experienced no burning on urination, nor fatigue (yet). I will complete the PT on Apr29, and the Lupron should start to wear off at the end of May'09.

I feel 'better than good' and am looking forward to the months and year check to see the PSA/testosterone.

I will update this post when I graduate from PT, and at the first 3-month post PT check.

TJ

UPDATED

May 2009

I finished Proton Therapy on Apr 29, started back to work on May 4. MD Anderson did not check PSA or testosterone at the conclusion, so I will have to wait until July 24, when I have the first follow up. Because of the Lupron I expect that my PSA will be low, but not representative what to expect at the second or third follow up. The 0.1 PSA was measured at my simulation when I was 10 weeks into the first Lupron shot.

The treatments (38, 76Gy total) went on with no major drama. My flow did weaken towards the end, and my energy dropped too. I upped my Flomax from 1/d to 2/d, and have added Efforex to take the edge off the hot flashes/sweats. The Efforex appear to have helped me lower my appetite too, so that I have dropped about 3 lbs the last 3 weeks.

As part of the graduation at MD Anderson, I made a very short thank you speech, and rang the gong. The techs gave me one of my Lucite compensator plates (There is one for your right and another for your left side). It was signed by them. You get to know your techs after 38 treatments.

I eagerly wait for the follow ups.

Here's to low PSAs,

TJ

UPDATED

July 2009

I had my 3 month follow-up on Friday morning, 24 July 2009. Prostate is small and smooth. PSA less than 0.1, testosterone 62, up from 21 in Mar '09. I'm still under the effects of the Lupron (PSA in Mar'09 less than 0.1, Dec'08 3.0), but the up-tic in testosterone suggests the Lupron is starting to wear off - Praise God!!

Next follow-up exam is 2 November 2009.

FYI - I had 2 shots. The first in December 2008, and the second March 2009.

I feel it is good for me to talk a little about my experience with Lupron. At the beginning I knew that I would lose libido, become chemically castrated, experience hot flashes, likely gain some weight, and that there was a small chance of gynecosmastia (enlarged breasts).

I was able to handle most of these side effects. If I listed (for me) the worst to the easiest, it would be hot flashes (because I sweat it causes me to not sleep well and carry a handkerchief), weight gain (I peaked at +30 lbs), loss libido, and gynecosmastia (I have some enlargement that I can see, but hardly noticeable).

My MD Anderson doctor says all should be back to normal in the next 2-3 months. So I shall see. So far things are improving.

I will update the post at the next follow-up (2 Nov 09) or if something changes dramatically.

Till then, may we all have low PSA.

TJ

UPDATED

September 2009

I went to my PCP (Primary care physician) on last Friday, because I had a sore throat and figured it might be Swine Flu. Having finished treatment in April, I figured to play it safe. The doctor could not find any infection, and presumed that it was just drainage due my allergies.

Since I was there they took blood for PSA and testosterone. Result is PSA 0.2 (up from less than 0.1 at the end of July) and testosterone up to 470. That's the highest my testosterone has been since '07. I expected my PSA would rise with my testosterone, so I am not alarmed.

I am feeling a lot better. The hot flashes are almost gone away. I have them every once in a while and the good news is that I don't sweat, and they don't wake me up during the night anymore. I feel rested now when I get up in the morning, and I am sleeping through the night without having to get up to use the restroom. I didn't think I would reach this point this soon after cessation of the PBT and ADT. The body aches and joint aches are gone.

So far I have have lost just 5lbs, not where I want to be, but my body is looking like I'm losing weight. My muscle tone is returning, I am getting stronger, and my endurance is returning. I pray that ADT is in my rear view mirror. Erections are coming back stronger and more frequent too, mostly nocturnal, few spontaneously during the day.

My next followup with MD Anderson is Oct 29. I will likely update my post when I have the results.

PS: the day after seeing my PCP I woke up with a raging sore throat, fever, runny nose, headache, and muscle aches. Guess I had the flu after all. This time my immune system was not preoccupied fighting PC, so after two days I started feeling better, and now, one week later, I don't feel that I had the flu.

Praise God for that.

B'rggs,

TJ

UPDATED

October 2009

I had my second followup at MD Anderson on Friday, Oct 23. The DRE shows small and smooth prostate. My PSA is 0.2, same as what my primary care doctor recorded in early Sept.

My testosterone fell to 258, from 470 as measured in early Sept. Not sure why the fall, but I had been noticing a drop in libido, as well as feeling the blah's. My radiation doc was not too concerned as from MDA's view, my testosterone has risen from 62 in July.

Next update in Jan'10.

Wishing all low PSA's

TJ

UPDATED

January 2010

I had my 3rd follow-up today (January 22, 2010). The results were very good. Testosterone 439 (was about 230 at previous follow-up), PSA 0.3 (was 0.2 at last follow-up), and DRE showed no abnormalities. My doc was not concerned about the slight rise in PSA as it is associated (most likely) with the 200pt rise in testosterone. My testosterone will likely continue to rise as it was >500 pre-Lupron.

Today I have minor hot flashes, I have lost 7lbs, and my libido is recognizable (nothing like it was before Lupron, but improving). It can take a while before all the effects of the Lupron are gone.

At the end of all the research, everyone does what they deem is best for them.

Best wishes to all on this trek,

TJ Reed.

UPDATED

June 2010

Had my one year post treatment follow-up exam back in April 2010. PSA 0.3, Testosterone 479. Hot flashes very minor to not at all, libido is almost back to normal (testosterone pre-hormone was >500). Sex is very good!

I had a colonoscopy in March 2010 and it showed all normal with some proctitis. As of today I have no rectal bleeding. I have lost 23 of the 33 pounds gained whilst on Lupron.

Energy level continues to be very high, better than before hormone treatment. I feel better with each passing week. Prayerfully, PC will stay in the past.

Best wishes to all, TJ Reed

UPDATED

November 2010

Had my 18 month post treatment exam on Friday, Oct 29.

The results are good, even considering a 0.10 rise in PSA. The error in the measurement at MD Anderson is +-0.1, so no one is worried.

My testosterone not as high as pre-Lupron, but in the normal range. PSA 0.4 Testosterone 422

Still feeling very good, high energy level, everything is working.

Next update April 29, 2011 - until then, best regards,

TJ

UPDATED

May 2011

Last check was at the end of April. PSA came in 0.3. Next check will be at the end of October 2011. Wishing all low PSA's.

TJ Reed.

UPDATED

May 2012

I had my 3yr post treatment checkup at MDAnderson in April. The results were good, PSA 0.2. I know it's relatively early days, but I feel blessed nonetheless.

I recently met with a Doctor of chiropractic in the Houston area, DR. JASON KOLODJSKI, in order to improve overall health with a focus on diet. I've attacked the gluten and sugar in my diet and plan to stay with this approach. I've lost 8 pounds in six weeks. I am hoping this will help with seasonal hayfever too.

I wish all low PSA's,

Blessings,

TJ

UPDATED

October 2012

Result of my Oct 10, semi-annual post treatment exam was PSA 0.3. Next one in April 2013.

If nothing changes I will check in again come April 2013

UPDATED

April 2013

I celebrated my 4yr post treatment anniversary with a follow up visit at MDA. My PSA is 0.2. I am very satisfied to have this and I am very thankful. I now go on a 1-year follow-up routine, so the next update will prayerfully come April 2014.

Blessings and low PSA's to all,

TJ

UPDATED

April 2014

I had my annual follow-up at MDA on 4/3/2014. PSA 0.3, with normal DRE. I will keep an eye on my overall health and if nothing changes, see MDA and update my posting this time next year.

Blessings,

TJ

UPDATED

May 2015

Not much has changed since last year. As of Jan'15, PSA 0.3 stable, and testosterone 370. Both good numbers at 6-years post treatment. I will check in next year. If anyone would like to discuss my treatment or experience post treatment, feel free to email me. Until then, wishing everyone low PSA and good health.

UPDATED

April 2016

Latest PSA test was 0.4 in Feb'16. Dr did not feel the need to DRE - I did not object. I will see him next year.

Wishing you all excellent results with your treatment choice(s) and low PSA's. If you wish to discuss my results feel free to contact me.

Blessings,
Thomas

UPDATED

April 2017

Gang,

My results this year remain good. PSA is 0.3. I've lost libido, though my Testosterone is good (406). Stress? Treatment sid effect? Getting older? Still experiencing noctural erections - go figure. I take Trimix injection instead of pills since Oct'2016. The first time I gave myself a shot was more terrifying mentally - I felt nothing. The needle went into my penis (followed instructions with the med) effortlessly, no bleeding upon removal. It last about 45-60 minutes, and is much cheaper than pills.

You can contact me about any of my experiences via email. Until then,

Wishing all Low PSA's

TJ

TJ's e-mail address is: christianmirror@sbcglobal.net


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