I am an African American (I prefer black). I have been getting a PSA test for the last ten or more years. In June'07 my PSA was 3.6. I was late in getting it checked, I usually do it every January. I would have changed the schedule to June, but something made me decide to keep my January schedule.
In January '08 my PSA was 5.9. I had a biopsy in April with the result of a Gleason Score of 9. The CT and bone scans were negative. With a Gleason of 9 and being black, I decided to waste no time and had the earliest possible Da Vinci surgery in July of '08. All the margins were negative, but there was some microscopic cancer cells in the seminal vesicles.
Six weeks later my post operation PSA is a 0.79 biochemical failure. I am now debating my next steps. My Urologist recommends a strong dose of Chemo, I have yet to talk with at least two prominent oncologists I have lined up.
Later: Since my first post I now have two updates.
First, my post operation staging is officially T3bNOMX (pT3NOMX). I have scheduled appointments this September with two prominent Oncologist. My Urologist has put me on Casodex and Lupron in the interim. In some ways I feel very lucky. I have no cancer in my lymph nodes or bones and my post surgery pathology report showed no positive margins.
But, alas, here I sit with a 0.79 PSA. When I find myself thinking this way I kick myself in the butt and move on to positive thinking, it works, most of the time. An uncertain future has a way of creeping back into mind. My surgery was non nerve sparing, so I spend time thinking of impotence (especially with the hormone surgery added to the mix).
It is what it is and I am alive, with a possible great future ahead, I'm continent, and that's another blessing. I think back to what an old business colleague of mine used to say every day "It's a great life, if you don't weaken".
October 18, 2008: So, I went to see Dr. Charles "Snuffy" Myers on September 18th 2008. He added Avodart and Ursodiol to the Casodex and Lupron my Urologist had already started me on. He also added several new vitamins to my growing arsenal, and asked me to make an appointment with the Dattoli Center in Sarasota Florida as a backup for radiation therapy.
On September 2nd 2008 six weeks after my operation my PSA was 0.79. On October 14th. My PSA on Hormone Therapy was < 0.1. A good sign.
I'm keeping my appointment with the Dattoli Center in January on the books, just in case.
Just got back from Sarasota, Fl. Spent nine weeks there for Radiation Therapy at the Dattoli Cancer Center. The wife and I turned it into a winter vacation, which made it all really rather enjoyable.
I went five days a week, the first week was mainly tests and preparation, the actual treatments took about 15 minutes a day and the rest of the day was free time. They offered Tuesday evening meetings for all participants, with topics ranging from nutrition to dosymetry. The real benefit however, was meeting and talking with all of the people from all over who had made their way to Dattoli. Like me, each had a horror story of missed diagnosis and bad advice from Urologist and Oncologist that bordered on criminal. It was only by my own investigation that I was able to find Dr. Snuffy Myers who eventually sent me to Dr. Dattoli for a second chance at a cure.
I feel a lot better having these two doctors as my primary Cancer Physicians. I know that there is a chance that I will not be cured with the radiation, but knowing I took the bull by the horns and gave it my best shot makes me feel I am doing all I can to help myself, with the best doctors I can find. Another good thing, I don't have to take another PSA test for six months, until the radiation effects have subsided! What a relief, if only temporary, from the worry and anticipation of those monthly PSA test results. I feel like a thousand pound weight has been lifted off my back!
I go back to Dattoli in October for a follow-up and a PSA test. This should be a good time to take the PSA, since I will also be off hormone therapy by then. I suffered no ill side effects from the radiation and was able to maintain my daily regimen with the exception of certain vitamins and supplements while in treatment.
The good news is even if the radiation does not provide a cure, I have other options for remission with Dr. Myers, and the wife and I had a wonderful time in the sunshine of Florida.
Greg
Just a follow-up. Dr. Dattoli told me I should wait six months before getting my next PSA test. This was fine with me since the anxiety of test outcomes is a real stresser for me.
My local Urologist wanted me to get a PSA in 3 months, to get an early jump on any PSA rise. The tie breaker was Dr. Snuffy Myers who surprised me by agreeing with my Urologist.
So now it looks as if I will only get a 3 months respite from the tyranny of the PSA test.
Well, I went and got my PSA yesterday. Got the results today, had the results at 11:00am, but could not bring myself to look at them till 3:00pm. I hate the anxiety and anticipation. After all, it's not like I'm opening up a present.
This was my first PSA since January, so six months has passed. Good news!! PSA was < 0.01. What a relief! I have family coming late June through the 4th. of July. I could just see myself being in some PSA funk while they were here.
I have really found my Spiritual footing of late, it seems that ever day I learn something about my faith and myself. It's a wonderful feeling, I'm far from it now, but I feel serenity coming.
Greg
September 5th 2009 ended my one year of hormones. I did gain weight aroud my middle and I did get hot flashes, but both were tolerable.
I met with Dr. Snuffy Myers on September 30th 2009 and got a clean bill of health. I then had a six month follow-up with Dr. Dattoli on October 2nd., with complete pelvic scans and color doppler. NO DETECTION OF ANY CANCER!
So for now I will consider myself cancer free, knowing full well that some cancer cells may be lurking elsewhere and could start to grow at any time. We cross that bridge if we reach it. Right now I savor this moment.
Dr. Snuffy added to new supplements to my daily intake:
Resveratrol@250mg daily
Biocurcumin@400mg daily
I feel great, and I am grateful that I have two of the best doctors in the field monitoring my continued cancer free health. I see both of them again in six months.
Well, so much for a cure. My PSA is no longer < 0.01. In about 11 months (following radiation) it has gone to 0.03, more than double in less that a month January-February. Not good. I'm suppose to see my Doctor on March 31st,or sooner to map out the next steps I guess.
As disappointing as these results are, I keep faith that I will find something that will arrest this disease, and either cure it or turn it into a chronic condition that can be managed like blood pressure within my life time.
Curiously, I am not pessimistic or, for that matter, depressed. I feel great and somehow still look forward to a long, happy life. For whatever reason, all my life things have always worked out for the better in the long run. I'm not saying that everything has been perfect, far from it, but when I believe, miracles have happened.
PSA started to rise approximately one year after radiation. Now reading 0.48. Found out something I was not aware of, there is such a thing as a PSA "bounce" that often occurs approximately one year after radiation that does not indicate a return of cancer.
Talked to Dr. Myers about this, he is not sure if that is or is not what is occurring in my case.Time will tell. Great news is that my CTC (circulating tumor cells) blood tests continue to come back "0". So if cancer is still there it, for the present time, is not spreading. Dr. Myers added Celebrex to my regimen (along with Leukine and Nitro glycerin patch). He wants to watch to see if my PSA reaches 1.5 and if it does he will send me to SandLake in Florida where they do a test called a USPIO enhanced MRI that should find out if cancer is anywhere in my body. This is the same but better test than the one you used to have to go to Europe to get. [This was the Combidex Scan which failed to gain FDA approval in the USA or approval from the European authorities.]
Not happy with the PSA rise and according to Dr. Strum's primer on Prostate Cancer the bounce could last for a year!
It's been a while, but I have been waiting for something concrete to say, alas, no such luck, just more questions than answers.
After I had radiation treatments at the Dattoli Center in Florida and came off the hormones my PSA began to rise doubling in little more than three months at a time. When it reached 3.8 Dr.Myers sent me to Orlando, to the SandLake facility run by Dr. Bravo for an enhanced MRI equivalent to the ones they used to do in Holland. It's called a USPIO (I think).
The results showed what appeared to be microscopic cancer cells in two places, one of which had previously been radiated by Dr. Dattoli. It was recommended that I go back for more treatment at the Dattoli Center. Recognizing that to re-treat an area that has previously been radiated dramatically raised the risk of toxicity, I contacted the Hampton University Proton Beam Center for possible radiation therapy with less chance of harm/toxicity with Protons. They wanted more test, so I underwent another CT, MRI and Prostascint scan.
Guess what? No sign of cancer! On any of these test. So now what? Get another USPIO test, watch and wait till something shows up? One test positive for cancer, three test negative for cancer, but a rising PSA, that has been cut in half after one week on Lupron.
All things considered, I think I'll look at my situation as good news in light of anything else happening. Since the USPIO results are so microscopic I'm not sure I want anyone trying to hit a gnat with a shotgun at this time, either with conventional radiation or Protons.
So, the beat go on.
Well, I'm back! It's been awhile and a lot has happened and a lot has not.
After radiation treatment with Dr. Dattoli in Sarasota Florida, wouldn't you know it, my PSA started to rise. Dr. Myers and Dr. Dattoli advised me to see a Dr. Bravo in Orlando, who is able to run a Feraheme test which is very similar to the test they used to do only in Holland. [The FDA did not approve this scan] This test is capable of detecting the smallest of cancers.
They found two areas, and Dr. Myers and Dr. Dattoli suggested I get them treated right away. Not so fast! One of these areas had already been treated by Dr. Dattoli, and re-treated would have a greater chance of toxicity. As fate would have it, a new Proton Beam center had just opened up in my hometown, (go figure, what are the odds of that) and protons offer a lesser chance of toxicity than traditional radiation.
It took a year, and a second test in Orlando (which found one additional "suspicious" area before Dr. Myers and my local Oncologist agreed that Proton Therapy was indeed the best option. I start proton on April. Otherwise I feel great! No symptoms of cancer show up with MRI, bone scan, prostacint, etc. nothing except that pesky PSA rise and the Orlando test.
Well it's me again, back to Dr. Myers this month, obviously the Proton therapy did not work, and insult to injury, the Lupron has stopped working to.
Jan: <0.015
Feb: <0.018
March: <0.021
I still feel great, and the latest bone scan was negative. I'm obviously very interested in what Dr. Myers will suggest as the next course of treatment.
In the meantime I have started to cronicle my journy at gleasonnine.com, it's just one way that helps me feel I am doing something rather than sitting and waiting for something to happen, every PSA test is filled with anxiety and fear, every pain is the harbinger of bone metastasis, every happy moment has a tinge of sadness. Whether I feel it or not, I'm sick, and the disease marches on.
So much for the "poor me" portion of this post. Actually, if I really think about it, this time of my life is the best time of my life. I have the money and time to do whatever I choose, and I do. It's the one blessing of cancer, it frees me to not to worry so much about tomorow and live life today.
Well I'm back. It's been five years since I was diagnosed, and for the first time since that diagnosis I'm fearful. After the DaVinci failure, I went on hormones immediately, and to make a rather long story short, after external beam and Proton radiation my PSA has started to rise. Until December 2012 the Lupron and Casedex had kept the cancer at bay. However, in January 2013 it began to rise. In January it was <0.005 in April it was<0.037. At that point Dr. Myers put me on Fermagon shots (once a month) and daily Metformin tablets and my May results were <0.029, good news. Not so fast. In June my PSA was <0.051. I emailed Dr. Myers in a panic. He emails me back saying "It appears the cancer is growing, we should talk about what to do next". I have had five years of various treatments but my PSA always responded to hormones. Now it doesn't and I am fearful.
Just FYI, I feel great! On a scale of one to ten, with ten being bliss, I'm a nine, It's just this cancer thing won't go away.
Well, it has been awhile and I have been meaning to update, but just got lazy.
Anyway, as of 07/01/2014 my PSA is undetectable <0.015. Dr. Myers has me on Firmagon and Xtandi. ( my urologist cannot figure out how Dr. Myers got me on Xtandi without having had chemo). The Firmagon shot does leave a welt that can be irritating.
I feel great, and my last bone scan and CT done in April showed no sign of cancer. So, the only indication of the disease is my rapidly rising PSA when I am off hormones. This has been going on for the last six years. I exercise five days a week; weights and swimming. My diet still needs a lot of work, but I eat what I like and that adds to my post diagnosis quality of life. I did cut out soft drinks and cut back on salt and sugar.
One thing I did not expect but seems to be common knowledge among urologist and oncologist is the blood in the urine and blood clots that can occur sometimes years after radiation. I had both conventional radiation and proton therapy (none of which worked by the way). Now I have to go in and make sure that I don't have bladder problems. No one mentions this when your doctor sets you up for radiation. Before prostate radiation of any kind, please ask about this side effect!
That about covers it for me. I will try to be more prompt with my updates in the future.
JUST KEEP LIVIN
Greg
The adventure continues. I believe since last I posted in 20014 I was on Firmagon and Xtandi. Well, in October Dr. Myers took me off both to see what would happen. To both our amazement I then went seven months undetectable. Ah, but nothing last forever, so in June my PSA rose from <0.015 to <0.027 still undetectable but almost doubling in one month, not good! So, back on the Xtandi but no Firmagon. July PSA back to <0.015. That's the good news. The bad news is my new insurance now charges $800.00 for a one month supply of Xtandi and Dr. Myers wants me on it for the next six months! What's a fella to do, pay the money or die. I'm
being overly dramatic I can afford it but I can't help but wonder about those who cannot. Anyway, it just so happens that before I had to change insurance companies I stocked up a three months supply anticipating some sort of rate hike just did not expect it to be four times as much.
So that's it for now. Paying money out the wazoo, but stayin alive.
The adventure continues. I believe since last I posted in 20014 I was on Firmagon and Xtandi. Well, in October Dr. Myers took me off both to see what would happen. To both our amazement I then went seven months undetectable. Ah, but nothing last forever, so in June my PSA rose from <0.015 to <0.027 still undetectable but almost doubling in one month, not good! So, back on the Xtandi but no Firmagon. July PSA back to <0.015. That's the good news. The bad news is my new insurance now charges $800.00 for a one month supply of Xtandi and Dr. Myers wants me on it for the next six months! What's a fella to do, pay the money or die. I'm being overly dramatic I can afford it but I can't help but wonder about those who cannot. Anyway, it just so happens that before I had to change insurance companies I stocked up a three months supply anticipating some sort of rate hike just did not expect it to be four times as much.
So that's it for now. Paying money out the wazoo, but stayin alive.
Well it has indeed been a while since my last post. A lot has happened since then. Too much to go into detail here.
So I will start where I am currently. My current PSA is <0.015. It has been a roller coaster ride to get here. Dr. Myers has me on Xtandi, Lupron, Metformin, and Avodart. Not sure if the Metformin and Avodart are having any real effect but I guess they aren't causing me a problem so I haven't question Dr. Myers about stopping them.
It will be eight years this month since I was diagnosed with a Gleason nine. I feel I have already beaten the odds for a black man. I am playing with house money now. I have never felt any pain as a result of my cancer, my only symptom has been a rapidly rising PSA, doubling month over month!
Who knows how long my current treatment will work. I try not to think about it and press on. The dreaded monthly PSA test still causes me more stress and anxiety than just about anything. I avoid taking it before any special event I have planned so as not to have it ruined by a bad result.
I will try to do better at updating my story in the future, several people have asked me to.
For now, that's my story.
Greg
It has been awhile. The good news is I'm still here! My current PSA is 0.006. I am on one Xtandi tablet a day and a Lupron shot every six months.
The bad news is Dr. Myers is retiring. That had me really worried. My last meeting with him was in April.
I have been with him since my diagnosis. At my last appointment we discussed who should be my new Oncologist. Along with my wife we settled on one of three doctors he recommended. One in New Orleans. One in New Jersey, and one in New York City. It was a difficult decision, they each sounded great, but in the end we chose Dr. Charles Drake in New York. We based our decision mainly on his work in immune therapy, using the body's own immune system to fight the cancer. I personally think that may be the key to a breakthrough.
I have been in contact with his office. They are trying to set up my first appointment for this August.
I will sorely miss Dr. Myers. I am firmly convinced he saved my life.
Greg
Well, I guess it's time to followup on my journey through the wilderness of Prostate cancer.
I met with Dr. Drake in New York on June 12, 2018. He was very pleased with my PSA result (0.009) ten years out from diagnosis.
I take three Xtandi tablets a day and a Lupron shot every six months. I also take Metformin. Be careful taking Metformin it can result in serious diarrhea issues. They had to reduce my dosage.
I see Dr. Drake every three months, although I plan to ask him if we can make that every six months, traveling to New York every three months for a half hour consult is getting to be quite expensive. My wife and I try to mak it a four day mini vacation just to make the trip worthwhile.
I still have no symptoms other than a rising PSA. I exercise four times a week, weights, stretching, and swimming. I feel great.
Dr. Drake is not Dr. Myers but I find him easy to talk to and very willing to listen.
I will try to do better with updates (no promises) in the future.
Greg
Well, here I am again. New year same story. Nothing much has changed. I see Dr. Drake in New York every six month. We talk for about one half hour and that's it. I take my four Xtandi pills every day at $600.00 a month and get a Lupron shot every six months. One bit of new news, I now get my PSA test every other month rather than every month like I have for the last Ten years.
My life is great, no pain, no symptoms except slight rise in PSA : 0.091. I'm still waiting for that miracle medical breakthrough that never seems to come. So in the meantime my mantra remains "Just keep on Livin".
Well, it has been a minute since my last update. Timing is great since things have changed. My PSA is still 0 but continues to rise. Dr. Drake wants to let it continue to rise until it reaches .1 or higher ( that's scary).
it seems there is a new PSA test called psma that is supposed to be able pinpoint exactly where the cancer is. The only problem is the cancer has to be detectable first. So, now its a waiting game until I get to .1 or higher.
otherwise I feel great. 12 years out and feeling mightily blessed.
Greg
Well, it has been a minute since my last update. Timing is great since things have changed. My PSA is still 0 but continues to rise. Dr. Drake wants to let it continue to rise until it reaches .1 or higher (that's scary).
it seems there is a new PSA test called PSMA that is supposed to be able pinpoint exactly where the cancer is. The only problem is the cancer has to be detectable first. So, now its a waiting game until I get to .1 or higher.
otherwise I feel great. 12 years out and feeling mightily blessed.
Greg
PSMA test. awaiting results.
Well, I'm back from my PSMA test. It was supposed to detect the smallest of cance cells. Either in a single area or multiple locations . I had to let my PSA rise above 1 in order for the test to give the best result.
Result came back "No cancer detected" I'm thinking this is some bull......
But then again I think "no news is good news".
I have a conference call with my oncologist on August 19.
Maybe I should've waited till after that call to post this update. Anyway, I'll let you know what he says and where I go from here.
It has been awhile, and a lot has happened. My Dr. In New York, Dr. Charles Drake dropped me as a patient. Never talked to me. His assistant left a message that he no longer could treat "out of state" patients. Good news is I have a local Oncologist who gave me the PSMA test again once my PSA got to 6.0.
This time there was a spot in a specific area. I was lucky enough to find a Proton Therapy Center near me and went there for treatment. My PSA after one week of treatment went from 6.0 to 0.34.
However, since then my PSA has slowly started to rise again and is now 0.6. The Proton Center said this could happen since I was only given a light dose.
I will have to wait until my PSA gets high enough before I can take the PSMA test again to see if the cancer is still in the same place, they didn't get it all, or if the rise is due to a new area. If it's the same area I can get another round of Proton Therapy. I just have to wait and see when it gets high enough to take the PSMA again.
Anyway, I'm still here.
Greg
It has been a minute since my last update. My apologies. As of today I'm waiting for my PSA to rise to 2.0 so I can take the PSMA again to locate the cancer, then do the Proton therapy again, but have a full cycle this time (I only did a week the first time).
I'm still taking the Nubeqa twice a day and I get bloodwork once a month.
Most importantly, I feel great, no pain, no fatigue, no anything. I have to remind myself that I have cancer.
I will let you know the results of the next PSMA.
Gregory's e-mail address is: gregory.williams3 AT att.net (replace "AT" with "@")
