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

Back in February 2007 Fred got pneumonia. He was put on antibiotics for this. Then in April, he got a staph infection from an ingrown hair at the base of his penis. We both had never seen anything like this ever! It swelled up to the size of a softball. Our family doctor sent us to an urologist because it needed to be lanced and he was afraid of cutting a vein. The urologist lanced it and put Fred on another round of antibiotics. It was during the follow ups to these round of events that the family doctor decided to do bloodwork to include the PSA. Fred had his last PSA done at 48 and it was 2.3, "nothing to worry about, normal range." Well, here we were just 2 1/2 years later and his PSA comes back at 19.5 Back we went to the urologist. He did a rectal exam and said the prostate was swollen, and wanted to wait for the infection to be gone and the swelling to decrease before he decided on a biopsy.

So, in June we went back. He did a PSA again. It was now 23.5 The biopsy came back positive in 4 out of the 6 samples. Fred's Gleason Score was 7 (4+3). Since neither of us knew a darn thing about prostate cancer nor have anyone in the family who has it, we felt totally lost and alone. The urologist did give us a book to read to help us with our decision. All I (Doreen), wanted to be told was WHICH method would get rid of the cancer! Hearing that there was only an 11% chance it was outside the prostate.

So home we went. I immediately went on the computer trying to find out all I could. I have to admit that it was all so very confusing. The doc did order a bone scan and I believe CT scan. These came back showing no metastasis. The urologist also told us about a treatment called HIFU that he had attended a conference on. So, we looked more into HIFU. We spoke to a person in Toronto and began making plans to withdraw some of our 401K to pay for it. One thing we did not know, and this was essential to know before HIFU could be done, is whether the cancer was outside the prostate. So.......we decided to have the lymph nodes removed and biopsied. The urologist recommended a doctor top in this field in Denver. On August 20, 2007 Fred had his lymph nodes removed.

The doctor was able to get all the nodes on the left side but had some trouble with those on the right due to some fatty mass. In digging to get to them, he accidentally nicked Fred's bladder. Our prayer has always been that the nick was well worth it if he got all the cancerous lymph nodes. Yes, that is right. The biopsy came back positive. So, HIFU was out, and even surgery (so we were told). I googled CANCER CENTERS IN COLORADO and the first one that came up was Memorial Cancer Center. I called an information number and got a very, very nice woman, who, in between my sobs, was able to tell me about Tomotherapy and that the only machine in Colorado was at Memorial and treatments were with Mark Hazuka. So, I made an appointment for Fred.

First appointment with Dr. Hazuka was in September. He put Fred on Casodex and gave him a Lupron shot. Fred then had a CAT on Sept. 24, 2007, and on October 8, 2007 started the tomotherapy. This was once a day for 5 weeks. PSA was done right before we started and was 1.45 Fred was actually doing pretty good during the tomotherapy. He was tired, and getting some hot flashes. Bowels starting acting up and he soon found out that he could not urinate without pooping, so he had to sit every time. Two weeks after the tomotherapy was over, the HDR - (High Dosage Radiation Therapy) happened, on November 14th. Fred received two doses of high radiation over the course of 10 hours.

I believe he had his PSA done BEFORE the HDR and it was .35 GREAT NEWS. The next PSA was on December 12, 2007 and it was .09 Fred received his second Lupron shot on January 4, 2008. His next PSA was on Feb. 4, 2008 and it was .10 The next one was on May 23, 2008 and it was .05

I would like to share with you the story that the numbers do not show and that is what he has been dealing with since the HDR. It is not known 100% if what I am going to share with you is caused from the Lupron or the HDR. Right before his second shot of Lupron he experienced painful right hip pain. He thought he fractured it, that is how bad it hurt, yet he did nothing to warrant this pain. It was so bad that I called his doctor and told him about it. He sent Fred up to get an x-ray immediately. Thank God it showed no breaks or fractures. The pain did not go away. Shortly after, he started having it in his legs as well. To the point that he would fall down when first getting out of bed. Add to this the muscle loss, weight gain, tiredness, depression and ED and I was very concerned. We went back to the doctor several times with our worries and he just was not convinced it was the Lupron. We believed (and still do), that it is. So, process of elimination. The doctor ordered a bone density, MRI and EMG (to check the nerves). All came back okay. Why then all this pain???

Still believing it is the Lupron, Fred elected not to take his May 4th, shot.

Well, today is August 6, 2008 and he is still have hot flashes (although less severe), still has ED, still has leg and feet pain, still is very tired, and still lives on Vicodin. Added to this is swelling he now has in his feet and hands (lymphedema). The doctor has him on water pills and Cymbalta. He told me just today that the swelling is coming down.

He will not get another PSA done until November because of not taking Lupron. Fred's mental state was going downhill so fast because of all the pain. He decided not to take another Lupron shot and see what happens with the PSA. Because truthfully, we do not know if the HDR and Tomo got it all because the Lupron masks that, right?

In the meantime....I try to get him eating better and make sure he takes his Vit. D, Vit. C, Vit E., Selenium, Omega Fish Oil, multi-vitamin, calcium and calcitrate as well as Black Cohosh Root. I give Fred pomegranate juice, nuts, raisins, and tomatoes. We are getting back to walking and finding the time to do more of that. One step at a time. I am just so thankful I still have my husband as this cancer is not going to take him away from me after just finding him (we were married on Jan. 22, 2007)

Cancer is not fair and it is an awful, awful disease. May God keep His hand over ALL of you as you fight this (caregivers too).

God Bless....Doreen

Well, I had an appointment with my medical oncologist yesterday to go over current pain and meds. He did some bloodwork (which I was not expecting until November), and my new PSA is 0.28 My last PSA in May was .05 Not sure this slight rise in the number should be something I should be concerned about. Should I??

I am not on Lupron anymore. I told the doc in May that I did not want my third shot. I want to see what happens as I was having some side effects and pain that have made life pretty miserable (bone and muscle pain as well as severe right heel pain). Even though I only had two shots of Lupron covering 8 months and have not had another one since May, I still am having hot flashes, ED and bone, muscle and feet pain. I just started Lyrica for the leg pain and managing my pain with Vicodin and Oxycontin.

My wife ensures that I eat better and has me taking A LOT of supplements (Vit D3, Calcium, Selenium, Omega 3, Lycopene, Vit C and B12). My lab work has my ranges in the norm which I am thankful for. I guess, for now, until the PSA dictates otherwise, I am not going to do another Lupron shot......going on 4 months now. Will let you know when things improve (ED), from being off of Lupron..

I catheterize 2-3 times a day and have done this since my HDR. I have an "overextended" bladder which can hold A LOT (800cc). I need to keep it empty (at least no more than 400cc), so hence the catheterizing. I don't have leaking or the need to get up during the night because I have to pee.

Remember the things that cancer CANNOT do:

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot destroy confidence
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

Fred in Colorado, USA.

Just had a bone scan done. Two extra scans done on the right heel. Something showed up but of course the girl could not answer our questions. We will find out more once the scans are read. In the meantime, Fred takes 30mg of Oxycontin twice a day and supplements it with Vicodin when needed as the pain in his right heel has not gotten better.

Since May, the PSA has risen as follows:

May: .05
June: .16
August: .35
October: .67

Will have next PSA done in February and decide what options there are then. Is there anyone out there who is/has experienced similiar pain in the feet/heels? Fred had only two Lupron shots (Sept. '07 and Jan. '08), tomotherapy in October '07-November '07 and finally HDR in November '07. Even being off Lupron since his last shot in Jan. '08, he still has hot flashes and ED.

Isn't this a long time to not see some changes?

Thanks. God Bless!

Doreen and Fred

Hi Everyone,

Well, it appears it has been 8 months since we last updated everyone.

Fred has not gone back on Lupron but will begin the estrogen patches next week. Since the last PSA readings we supplied, this is what has been happening:

Feb. 2009 - 1.42
Mar. 2009 - 2.27
Apr. 2009 - 4.7
June 2009 - 4.88 June 2009 - 5.6 (recheck)
July 2009 - 6.14

Because of the extreme muscular and skeletal pain that developed over a year ago after beginning Lupron, Fred is going to start the estrogen patches. Since the pain developed, he lives on morphine and vicodin. When he tries to go without it, he suffers because of it. There is no quality of life when you have to remain doped up to get through a day.

We did make appointments in Denver, at the Colorado University Research Center. The doctor's there; after re-reading his films and scans, came to the same conclusion that his oncologist has here in the Springs....."You need to get back on hormone therapy."

Fred has just put this off and off. He just had a bone scan and CAT scan. The bone scan showed a "hot" spot in his left 2nd rib. Well, the CAT scan showed some nodules in the left lung that were not there before. Fred is NOW making the decision to do something, hence the estrogen patches. While I understand him not taking any action because of the experience previously with Lupron and quality of life, it hurts to see how far he let his PSA get before doing something. What damage has this ultimately caused for him? The cancer will wait for no one and his rising/doubling of the PSA is indicating that it is VERY agressive. He did take 6 accupuncture treatments that offered some relief to his pain.

Fred is not eligible for any studies because he is not hormone refractory yet. When he becomes that, he will qualify. I pray that by that time, some of these drugs that are currently awaiting FDA approval will be there for him.

I will keep you posted as to the outcome with his PSA and scans from the estrogen patches.... May God bless each and everyone of you as we continue this fight against this awful monster called Prostate Cancer.

Regards, Doreen

Wow, I cannot believe that I have not updated my story in almost two years. To be honest, I was not expected to make it this long but I thank God everyday that I have.

I am still on estrogen patches (down to 2 a week). I started them in August of 2009 after my PSA was doubling and doing a straight vertical line up when mapped. I have to say that the estrogen has worked and IS working still.

Here are some of my PSAs since being on them:

August 2009 - 2.31
Sept 2009 - .66
Oct 2009 - .11
Nov 2009 - .09
Dec 2009 - .08
Jan 2010 - .07
Feb 2010 - .05
April 2010 - .02
June 2010 - .02
July 2010 - .03
Sept 2010 - .04
Nov 2010 - .02
Dec 2010 - .04
Jan 2011 - .04
Feb 2011 - .04

Unfortunately, the muscle and skeletal pain has never gone away and over these past two years my oxcontin dosage has increased to now be 80mg 3x a day. I supplement these with vicodin when needed.

I will be 55 next month and did not think that: (1), my PSA would still be low, and (2), that I would still be working. My wife continues to give me supplements and works hard at trying to see that I eat well. I did experience two things these past two years that put a scare into me. A cyst was discovered at the base of my spine that was pushing against a nerve and cause my whole left leg and foot to be numb. I had several injections in my back and at the last one, the doctor said the cyst burst. I am still have some numbness but I think it is getting better. This is the problem of being on so much narcotics, you cannot judge pain like you would if you were not.

Then, last weekend I ended up in the hosptial for internal bleeding. I know that my blood work was showing I was anemic but this became a Catch 22 for me. I would try and eat more iron rich foods but my wife had to be very careful about how often she gave me iron supplements because of constipation. The narcotics I take do a very good job of keeping me constipated so we deal with that daily. The bleeding was caused by an eroding esophogus. I know they did a scope and I was not told that there was any cancer. Just taking yet another medicine to coat things before I eat. Oh...I did get taken off of celebrex which I was put on 3 years ago because of arthritis pain in my back.

I would highly recommend estrogen patches to anyone who is having problems with Lupron like I was. I have a better quality of life, I know that. I still bowl and golf. If I do not get enough rest, I get tired very easy but I have felt like this since the radiation. I did have to have two masectomies because of the estrogen growing breasts for me but I would do it all again to avoid lupron. Besides....the estrogen patches are so much less expensive too.

Please continue to keep me in your prayers as I pray for all of you. Cancer may have us but it doesn't have to beat us. Never give up hope. Easier said than done, but try not to. I am only going to be 55 and I am not ready to stop living my life. None of us should. I will try to do a better job of updating my progress.

Thanks, Fred Feel free to email if you ever have any questions.

Well I am still on estrogen patches. 2 a week. PSA is .2 and has stayed in the .02 to .4 range. My full body muscle and bone pain has me taking 80 mg of oxycontin 3x a day and supplementing it with vicodin as needed up to 7. I am now 57 and on SSDI. Life is now all about taking care of myself. Last summer I had 4 back surgeries. The first one to remove a cyst on my lower spine caused by the radiation and causing numbness and pain in my left leg and foot. The next 3 were due to infections I got from that surgery. I was a sick boy. My immune system sucks. It is what they call "compromised". I no longer can urinate on my own. Catherders are my life now. BUT.........I am still here and enjoying some things. For someone who was told I have 2 to 10 years to live I am now into year 6 with a PSA that is below zero. God is good! If you have questions about estrogen patches as a therapy just shoot me an email. Fred

Fred's e-mail address is: neerod58 AT yahoo.com (replace "AT" with "@") (but this e-mail address may no longer be valid)

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