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Mark Maldonado and Shelly live in Nebraska USA. He was 52 when he was diagnosed on Feb 4, 2008. His initial PSA was 4.6 ng/ml, his Gleason Score was 9 and he was staged T2bNXM0. His choice of treatment was robotic laparoscopic radical prostatectomy. Here is his story.

I found initially from a blood test done at the VA. At 4.6, the doc said to come back in 3 months for another PSA. That was Feb '08. I went to my urologist who did a DRE and found a lump and ridge. After my biopsy, 6 of 12 cores contained cancer. Gleason score at that time? 9 (4+5).

After a CT, MRI and blood work that urologist said it looked like it was localized. Everything I read on net said it had escaped. He scheduled surgery five weeks from then. That was unacceptable.

I found a urologist to see me that week and scheduled the Da Vinci surgery the following week. He's done the most Da Vinci surgeries of any surgeon in our state. He also does 3-5 a week. I had it 10 days ago.

The surgical path report came back. Gleason score was actually 5+4. Still aggressive. They thought it was organ-confined, but it had already escaped. Because of prior pelvic trauma, my prostate adhered to the wall of the rectum, so part of the wall had to be removed.

No evidence of cancer cells in Lymph nodes or at the neck of bladder. Nor at seminal vesicles. Having some incontinence, which I expected. Ended up being in the hospital for six days because of problem with the rectum. They wouldn't give me anything to drink or eat until I passed gas.

Ten days and I still haven't had anything to eat. I'm on full liquid diet so we make sure the wall heals. Good way to lose weight! One more week of liquids, then soft diet for two weeks. I can't find a lot of evidence concerning the treatment plan we're pursuing, but it makes sense. He thinks he got all the cancer, but there's probably micromets in the blood stream.

We're going to go with ADT in four weeks. It will be six weeks after surgery. Cancer stage post-surgery pT3,pN0,MX.

 

UPDATED

June 2008

 

 

Well, it's been almost six weeks since surgery. I would say I'm 99% continent. Just every once in awhile I have a slip up.

Last week I had my first PSA test after surgery and it came back 0.04. It was good, but I'll still start on hormone shots next week (6/12). The urologist had said if the PSA came back more than he expected I could be on hormone treatment indefinitely. That didn't sound like fun, but I'm still not out of the woods. I have a Gleason of 9 and extraprostatic extension. That are two negatives that aren't good.

I try to talk to my wife, but she thinks I've given up. I told her before we went to the appt. last week that there's a good chance the cancer will come back in 5-10 years. So what did the doc say? We need to do shots right away to keep the cancer in check and reduce the tumor size. She said, "But I thought we got all of the tumor?" Yes, but the probability of it coming back in my case is very high. She thinks I read too much and try to pull all the negatives out of it.

I guess I'm as ready as I'll ever be about getting these shots. The side effects are what I'm not looking forward to. His nurse said he's particular to Lupron.

 

UPDATED

July 2008

 

 

Got my first Lupron shot last week. The first of many, many more. Last weekend I needed a nap both days and am tired when I don't get one in. It was that way before the shot too. I feel like I'm depressed. I haven't contacted the doc who has me check in for my meds yet. I may wait until I see him in a few months.

Sex life has been nil. I took a test today for a position I'm trying for and couldn't think as clearly as I should have. Guess I may have to get used to that. I'm not sure if I passed or not, but have to take a typing test on Thursday. I was keeping up with my caring bridge blog, but not lately. I don't really want to try and put something on it, then people question what I meant by what I said. I haven't done much of anything since the surgery. It's only been 8 weeks.

I don't think I'll be able to stop taking shots. I know it's not good to stay on them, but with a GS of 9 and Stage III, it's probably better to stay on it.

 

UPDATED

August 2008

 

 

Well, thanks for letting me air some stuff.

It's been one month since my first Lupron shot. The side effects hit me last week. I'm having hot flashes daily, night sweats sometimes, and tired most of the time. Headaches have been a problem, but that may be my allergies. I went to my primary care physician (pcp) a little over a week ago for the pain in my legs. My blood pressure was 146/100. Thought it was a fluke, but a week later I went to my pulmonologist and he took it and it was 152/102. Two days later it was 134/100. So now I'm on blood pressure medicine. Seemed like my heart was pounding in my chest.

I don't know if I can take these side effects, but don't have much choice. Has anyone ever had the feeling that their time left here on earth will not be decades, but years? I'm not worried. I know positive thinking is what we need, but I've felt that I'll make it ten years if it's good.

Things are just not working the way they use to, and I'm only 52.

Thanks, Mark.

 

UPDATED

August 2009

 

 

It has been almost a year and a half since starting ADT and so far, it has kept my PSA in check. I never attained the lowest testosterone (T) level for castration (<20 ng/dl). My lowest was 26 ng/dl six months ago. Three months ago it was 38 ng/dl and a couple of weeks ago, it was 32 ng/dl.

My side effects are still present and were the worst the last three months. I started on a low dose of estrogen to hopefully alleviate my hot flashes. It seems like it's been years and years I've been on this. Fatigue is a battle. I wonder if one day I'll look back and wish I only had it this bad.

Thanks.

 

UPDATED

October 2009

 

 

It's been 16 months since I began Hormone Therapy. I was hoping to start intermittent therapy. Yesterday, I chose not to get my 3 month shot . I got a call from my urologist' assistant today telling me he wants me to come back for more blood work and to receive that injection.

He uses an ultrasensitive PSA assay. My last PSA was < 0.04. Three months later, it jumped to 0.134. I'm not a math whiz, but it looks like it tripled!

Funny thing is, I'm 54 and taking an early retirement (last day is next Friday). I guess I have two choices: either get busy living, or get busy dying!

Mark.

 

UPDATED

June 2010

 

 

My last update was Oct '09 and a lot has happened since then. I wish it was good, but it isn't.

May '10 another PSA was done and it had risen to 0.234. I knew I had to find a Medical oncologist. I went to the Univ. of Nebraska (UNMC) Cancer Center because a friend had recommended a doctor. He ordered all new scans and another blood work. The scans came back negative, but by then my PSA was 0.57. He then set up an appointment with the head of Radiation Oncology for the next week.

Since my treatment was ass backwards (prostatectomy, no radiation, but immediately ADT) he found my case to be a bit complicated. I have now failed not only surgery, but hormonal therapy as my PSA rises. His thoughts were to start radiation to the prostatic bed and see if that lowers the PSA. He also wanted another PSA since it doubled from the test from May to June.

Last Friday I found out my PSA is at 1.48. He did a DRE and found a small mass in the prostatic bed. The SPECT scan detected it, but no other masses. My PSA has gone from 0.134 in Oct '09 to 1.48 in June.

Now the fun begins! My Radiation oncologist suggested Provenge earlier, but with the recent developments, radiation, then chemo will most likely be the course of action.

Well, I was putting a lot of weight lately anyways!

 

UPDATED

November 2010

 

 

To follow up from my post in June, my PSA continued to rise to 2.28 at the beginning of July. At that point we decided to begin 38 treatments of radiation and 8 chemo treatments.

After the first treatment of chemo, we chose to have a power port surgically put in. Three weeks later, I came down with a staph infection that resulted in my hospitalization. The port was removed and a temp port (PICC line) was put in. I also had an IV pump at my side for the next 5 weeks giving me continuous IV antibiotics. Near the end of my five weeks, a bacteria had invaded my PICC line and I ended up in the hospital again. Hospitals are no place to go if you're sick!

I didn't receive any more chemo treatments because of the problems with my lines. I finished all of my radiation treatments in Sept '10. The only treatment I'm on now is hormone therapy, which will be indefinitely.

As far as long term side effects I continue to suffer from? After having been on ADT for two years, I continue to have hot flashes, night sweats, fatigue and anemia. Radiation has worsened my incontinence because they radiated the prostatic bed. Hopefully, that will subside in the coming months.

 

UPDATED

February 2011

 

 

My last posting detailed the end of my radiation and PSA of 0.50.

I went in for another PSA test in December and it had risen to 5.68. My pain had worsened to the point of needing Vicodin at night to be able to sleep through the pain. At that point I was put on Ketoconazole and Hydrocortisone and taken off of Casodex. Another PSA test was scheduled in six weeks.

That was done last Friday showing my PSA had now risen to 16.03. I'm now planning to be a subject for a study combining the drugs Thalidomide and Cytoxan. My oncologist is the principal investigator of this trial. Pain is getting worse and is all over. I had a CT and bone scan done yesterday in addition to blood work. The phase I trial is 16 weeks. Hope it helps.

 

UPDATED

February 2012

 

Well, I didn't start the year out good. Ended up in the hospital because of intense pain and dehydration. First they thought I might have had a heart attack, but didn't. They did find at least 2 spots on my liver. This is the first time we've detected any cancer on my organs. Also my PSA rose from 413 December 2011 to 1,325 January 9 2012.

Prognosis is 6-12 months. Hey, it's just a number. My pain is being controlled with Methadone and Percocet. At times I feel jabbing pains in my abdomen, but tolerable. If you get to this point in your cancer, being able to function around the house is an accomplishment (that's me, though). I'm hanging in there and would be glad to email anyone who wishes to delve into final stage prostate cancer. Keep the faith! Mark .


Mark's e-mail address is: m_maldonado@tconl.com