THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2014 SO THERE IS NO UPDATE.

The earliest record in my files of my PSA was 2.10 as of February 2004. Being tired all the time, falling asleep way before bedtime, aching, tired muscles and bones, and practically non-existent libido prompted a visit with primary care doc to check testosterone level in early 2005. Was placed on Testosterone injections 2X month and noticed immediate improvement in all areas. By September 2005, PSA was 3.42, and by April 07 had risen to 4.36. Referred to urologist who took me off T injections prior to biopsy. PSA in August was 4.57 and biopsy was performed. Results were: Right Apex: 3+3=6 involving 2% of 1 core, Right base:3+3=6 involving 10% of 1 core. David Bostwick of Bostwick Labs as well as David Grignon of Indiana University Medical Center Clarian Pathology Laboratory both confirmed the pathologic diagnosis.

My wife began researching any and all information on treatment options and Valentines Day 2008 found us on the plane to Atlanta to confer with Radiotherapy Clinics of Georgia. The doctor who examined me and reviewed my records indicated Active Surveillance was a viable option for my status, with Bostwick Labs UroPredict staging system indicating the probability of organ confined was 84%, extraprostatic extension at 16%, and 0% seminal vesicle involvement.

Returned home with a small sense of relief, but still actively doing research. Fast forward to March 2009 when a very painful hematoma in my leg rendered me an invalid for months, and in excruciating pain even with the narcotics prescribed. Was referred to a pain clinic, and doctor there administered an injection in my spine which supposedly would relive the pain. It lasted all of a day and a half before the pain resumed with a vengeance. Meanwhile I had also been suffering with two hernias which needed to be taken care of. One was an umbilicus hernia and the other inguinal. Scheduled another spinal injection two days prior to the hernia surgeries with the instructions to be off my Coumadin three days prior to the spinal injection. The sad result of this was having a stroke within a week of the surgeries. Apparently I should have been on a bridge therapy during the time they had me off Coumadin.

The stroke manifested in a strange way, and has affected my math ability and my spelling ability. My spelling has always been atrocious, but now it is beyond that! My wife is doing all my keyboarding/correspondence in light of my disability. The math has come back pretty much, but I do check myself carefully prior to any calculations requiring sawing of construction materials etc. As a retired journeyman Steamfitter my brain was full of all kinds of math formulas and calculations and for the most part I can now recall most.

February 2010 I had a lumbar laminectomy which has relieved the leg pain tremendously and I am now able to walk without using the cane which has been my companion for more than a year.

My second biopsy was done in April 2010 with a result of 3+3=6 involving 20% of tissue of left apex, and acute and chronic prostatitis in nearly all other cores. Interestingly the original diagnosis showing 2% in the right apex this time indicated nothing. Suffered severe rectal bleeding after this biopsy, which landed me in the hospital. Considering my situation of stroke after surgical procedures, and bleeding, the urologist is hesitant to consider future biopsies, and has recommended IMRT rather than continuing with A.S.

August 2, 2010, I begin radiation treatments at Celilo Cancer Center in The Dalles, Oregon. It is a 45 minute drive from our home so it will be taking a chunk out of our days for the durations of the 41 treatments planned.

My wife is still not totally comfortable with the treatment choice, but I am of the mind-set that only the best outcome will be the result.

I have not had a PSA as high as in 2007, and in fact the latest in January was 2.78.

This road is not one I wanted to take, but I am now on the highway and will travel with clarity for any hazards that may be lurking enroute.

The best to all my brothers,

Richard (via Judy's fingers)

Today marks the end of week #2 of radiation treatments. I am scheduled for a total of 41 treatments and today the radiation oncologist told us my "dose' is quite low, but the radiation used for prostate cancer is the highest for any cancer treatments. Not sure I like that info.

My decision to discontinue AS and undergo IMRT was not easy. But after nearly three years from diagnosis, my second biopsy landed me in the hospital due to excessive rectal bleeding. Future biopsies are not recommended by my urologist and we felt treatment was advised.

Currently the only side effect is a somewhat fullness or tight feeling in my groin area. No skin discolorations or frequent urination so hopefully I will escape those. I am somewhat tired, but no actual fatigue so the tiredness is no doubt just me trying to do too much.

I will update at the end of treatment. My best to all brothers, and to their loved ones and/or caregivers. Lord knows we all need courage during this.

Richard.

Hello YANA members, this is Judy, Richard's spouse with unusual (I believe) update info. We were at the halfway point with IMRT on August 31 when it was suddenly put on hold in order to address a more concerning issue.

August 21, 2010 found me driving my husband to the emergency room when I discovered severe discolorations on both legs, and rash continuing up his body to chest and arms. The E.R. doc advised him to stop his daily Coumadin dose (prescribed years prior for his A-Fib condition) and to not take any aspirin. We were advised to call our primary care doctor and make an appointment with the hematologist asap.

We did as told, and saw the hematologist the following Tuesday. He was concerned about the low platelet count so advised Richard to have a bone marrow sample taken in order to rule out serious disease of the blood. A bone marrow sample was taken the following day hours prior to our scheduled radiation treatment. We were advised the results from the bone marrow sample would take about 10 days.

August 31, 2010 we received a call from the hematologist asking us to come the next day to discuss treatment. He advised that Richard's bone marrow was not producing platelets like normal.

Sept. 1, 2010 found us listening to the hematologist advise us of the diagnosis of Myelodysplastic Syndrome, or MDS. Not leukemia, but in the same family and apparently can progress to that if not treated. Our radiologist was present, and he agreed that radiation would be put on hold until after this crisis was resolved. The hematologist had made arrangements for Richard to begin treatment with Vidaza that very day. It is to be seven days of chemo, then twenty one days off, then the seven day chemo cycle begins again, for apparently several months. Twice weekly blood work is to be done continually, and Sep. 27 a port will be installed to allow the chemo to be administered more efficiently.

So the next chemo cycle will begin Sept. 29. The good news, if there is good in this, is that after only the third dose of VIidaza Richard's platelet count had risen more than 5 times the level it had been. Now out of the dangerously low range, he is back on blood thinner meds, only Lovanox injections 2X daily rather than the one simple Coumadin pill to swallow. It appears the MDS issue has no connection to the radiation, as his platelet count began dropping months prior to beginning radiation.

Now we get this under control, then have to wonder...do we go back to radiation treatment, or not worry about the low grade prostate cancer? Many of you on YANA have multiple issues as well, and if anyone has had to deal with MDS in addition to PCA please give any advice, as we are stumbling around yet again.

Did someone say "There is no Book Of Fair in the Bible?"

Now April, I am still on chemo treatment for MDS. Apparently this will continue indefinitely, at least as far as the oncologist's opinion. My platelet count has been steadily rising to a low-normal range, for which the oncologist is amazed due to the rapid and unusual response. My oncologist/hematologist has me now on a six week cycle rather than the 28 day cycle as before. I resume my treatments this week.

I have complete blood count at the start of each chemo cycle, and everything has been looking positive considering the chemo as well as MDS. My white count is a bit low but that is to be expected they say. Since halting the IMRT, my urologist has put me back on testosterone replacement 2X week and it has helped the body aches tremendously. I am not fearful of "feeding the cancer" at this point, as my quality of life when I am on T replacement is so much better than when my T count is at a low. One week after the last testos terone injection my PSA was 0.93. Whether or not that is due to the half-completed radiation treatment or the chemo doses for my MDS is undetermined. At any rate I am pleased to be reassurred that my PSA is still going down, as it has been ever since initial diagnosis.

Radiation treatments side effects so far are the shrinkage of my testicles and scrotum. I'm just rather "tight" and have to arrange things at times in order to sleep comfortably. No pain or other issues and I'm having no noticeable side effects from the chemo.

ED has been an issue all along, and currently immproved with a better VED. At last visit with urologist/ED specialist he started to recommend tri-mix injections, then changed his mind when he remembered I am on coumadin. He now feels I am a good candidate for penile implant but wants me to discuss with my cardiologist. Meanwhile he has me using a penile extender and it is helping with the Peyronies I seem to have developed the past few months, and has improved the ED issues as well. Perhaps due to the combined use of VED and extender, I'm not sure, but things are improved!

My continued thanks to all the mentors on this site and a very grateful Thank-You to Terry, as it is a wonderful resource of encouragement, information and gut-spilling emotion for all of us in this unpredictable and at times rocky boat.

Be well, stay happy, and enjoy the life you have at present, as it is the only one,

Richard

After more than one year since radiation was halted halfway through I feel quite well overall.

As reported previously chemotherapy for MDS was begun when radiation was discontinued. I see my urologist regularly at three month intervals and labs have shown my PSA is quite stable. There is a slight variance from time to time but most of the time just below or barely above 1.0 My urologist believes as we do that A.S. is not a careless choice in my situation. With my history, biopsies are not recommended and my urologist also believes my keeping to a regular schedule of labs is a safe monitor. He also believes as we do that testosterone is not the fuel that flames the fire, thus I am still receiving testosterone injections every 2 weeks. This has enabled me to enjoy a mostly pain-free existence, as the body and bone aches from low T is quite unbearable.

I receive 7 days of chemo on a 6 week schedule and so far have had no ill effects. However, the past two cycles have caused a bit of queasy stomach. Not quite nausea, but enough to feel a bit uncomfortable. Hopefully this is not an indication that my body has had its fill of the chemo drug and will now rebel in this manner each time.

With the testosterone and regular use of v.e.d. I am pleased to report an excellent improvement in restoring my ability for sex. Therapy does make a difference, and even though I have not had R.P. and radiation was halted, I am a firm believer in the benefits of penile therapy for regaining that which may have been lost or severely diminished.

Overall it has been a very good year and I am quite happy to be reporting feeling fairly healthy at this "vintage" age.

My wish is for everyone to have a very WELL new year.

Richard

It has been too long since my last update...sorry.

Currently have no issues with prostate problems and just two days ago had my 6 month visit with uro. He is quite accomodating with me continuing testosterone injections 2x monthly as my testosterone as well as free T is still lower than the considered "norm." My PSA; remains at a fairly low level staying below 2 and currently 1.3 with the recent labs. The testosterone keeps my body from feeling achy and tired and I do appreciate being able to continue this treatment as my previous urologist was not on board with the idea. Continuing with the treatment for my MDS keeps me from being so tired as well and usually does not cause problems from the chemo. I'm not at all pleased with the thought of having a "poison" in my body for seven days duration every six weeks but that is the protocol my oncologist deems necessary to keep the MDS at bay. I do get fatigued so a daily nap is my friend. When we need to be gone most of the day with no nap time I do feel it that night as well as the following day. However, I am doing great, enjoying sharing life with my wife.

Hopefully everyone here can enjoy as much as we do.

Richard

Richard's e-mail address is: rpicky AT msn.com (replace "AT" with "@")

NOTE: Richard has not updated his story for more than 15 months, so you may not receive any response from him.