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YANA - YOU ARE NOT ALONE NOW

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This is his Country or State Flag

Boxer Joe L and Jessie lived in Oregon, USA. He was 62 when he was diagnosed in December, 2006. His initial PSA was 97.80 ng/ml, his Gleason Score was 8, and he was staged T3b. His choice of treatment was External Beam Radiation+ADT. Here is his story.

My husband "Boxer Joe" is in the fight of his life and his opponent is prostate cancer. Joe had always maintained his fitness from his pro boxing years until Dec. of 2006 when he went in for his yearly exam and was told his PSA; was 94.8, with a gleason score of 8 and staging of T3b. The fight began and I've been in his corner through it all. Joe asked me to share his story.

First of all I want to say I've been in Joe's corner for 37 years. We have 4 grown children and 6 grand-children and one more on the way. Enjoying life and looking forward to retirement until that cold December morning in 2006 when my husbands doctor told him he had about two years to live. [One aspect of this disease of ours that still rankles is this 'prediction' of early death - see The Elephant In The Room for some of my thoughts.] My husband asked him how could his PSA; be in a normal range the year prior and jump to 94.8 in one year without any symptoms? He was told it was very aggressive and he recommended radiation and androgen ablation (hormone therapy). Joe's PSA; dropped to 1.1 in a matter of months. Every three month he was scheduled for a lupron injection.

Joe worked out harder and ate even healther and the two years he was given to live came and went. It wasn't until June of 2009 that his PSA; started to rise. At first just .2 and by the end of 2009 it had climbed to 4.4. Bicaltuimide daily was added and lupron was continued. By Dec. 2010 Joe's PSA; was 9.8 and one month later 28.88, all scans showed (hormone refractory). By blocking all the testosterone the cancer progressed to his bones (bone metastasis). I found a clinical trial in Portland Oregon for MDV3500 and he qualified. It was a 4-1/2 hour drive eachway but we made the best of it. After 4 months on MDV3500 his PSA; continued to rise and he was removed off the study. Our thought is that possibly he received placebo, we will not know for sure because the study is still ongoing.

2011 Oncology was his next scheduled appointment and the doctor recommended chemo-therapy. Joe had three infusions and he couldn't take anymore. He told the doctor the chemo made him feel worse than the cancer. Now down to 172 lbs from 187 lbs. Psa continued to rise during chemo.

Continued use of lupron has weakened his bones and one afternoon while lifting a ladder he fractured his spine. He was rushed to the hospital in severe pain. My Boxer Joe was flat on his back but mentally strong and wanting to walk out of that hospital as soon as possible and he did just that. They sent him home with all kinds of pain killers to take every 3 hours. That lasted all of a week and he said that's not for me. While recovering his doctor told Joe about Zometa and that possibly it would help him from getting anymore fractures.

2012 Joe's PSA; is now 138.0. The PSA; number is just that a number (that's how you feel after 6 years). Joe told me he's not going to live his life worried every single month if his PSA; number increased. He would rather enjoy his life, family and friends and make each minute of everyday count. Joe told me he's in round 8 of 12, and it's the fight of his life and not to throw in the towel. I won't throw in the towel, but I will get on my knees and pray and that's what we did.

Abiraterone will be approved by FDA early this year and Joe was one of the first precriptions filled. 4 - 250mg daily with 1 - 10mg prednisone. Joe has very few side effects with the new medications. He does notice he tends to go to bed alittle earlier. He does have pain in his back and hips but doesn't take pain medication.

The velocity we are dealing with is like a fast moving train. Even with the new medication PSA; continues to rise: 247 last month and 265 this month. Joe's not watching the numbers, but I am. My husband is a strong man both physically and mentally, but I can see it's taking a toll. We continue to pray for strength to fight this battle along with so many men with prostate cancer. It is so true "you are not alone".

UPDATED

June 2012

My Joe had his Oncology appointment today, I was right by his side when the doctor told us the PSA went up sharply from 265 to 389 in one month. Joe looked down and my eyes filled with tears. The doctor wants to take Joe off Abiraterone and start him on Provenge right away.

OHSU in Portland, Oregon is the closest hospital for the Provenge treatment. I know Joe will not be able to make this 4 hour drive each way. Tomorrow I will check on flights.

The blessing in all of this is that Joe's pain level is very low. Each evening he takes 2 Tylenol pills and that's it. I told you Joe is mentally strong, but more than that he is spiritual strong in the Lord. He gave his heart to the Lord Jesus in October of 1973.

When Joe was 18 years old he had an out of body experience. A blue blinking light came down and into his hands and his soul left his body. He told me he was up to the ceiling looking down at his lifeless body on the bed. He pleaded with God for another chance and time stopped. His soul slowly lowered back into his body.

That experience put a hunger in Joe to not just know of God, but to be known of the Lord God. The Bible tells us to search the scriptures daily and in them you will find life. Joe asked, seeked and knocked, and he found the Lord Jesus. As he fights this prostate cancer he has peace in his heart.

UPDATED

June 2012

Joe's lab results came back and his PSA; is rising approx. 124 per month. His Oncologist told us the Abiraterone is no longer working for you. Joe had been taking it only 9 months. Joe asked his oncologist what are my options. We were told since Joe is minimally symptomatic he could benefit from the Provenge treatment.

We are in the process of finding out everything we can about this fairly new treatment, yet at the same time know Joe can't take weeks to decide. If he decides to try Provenge, he will need to start the treatment fairly soon.

I will keep you posted. My prayers are with you all.

UPDATED

July 2012

I have some news to share, some bad and some hopeful. The bad news is that my Joe's PSA went from 389 to 583 in one month. His Oncologist was shocked to say the least. He is going to work on getting early access of MDV3100 for Joe. Also Dendreon approved Joe for the Provenge treatment. His first treatment is July 9 in Vancouver Washington. I've already booked the flights and we are hopeful. Joe's scans show widespread metastatic disease to his bones, however, no uptake in his organs.

Joe has pain in his back, ribs cage, arms, pelvic, legs and head. Tylenol is not longer effective and he is now taking Tramadol every 6 hours. Also, Prochlorperazine for nausea from the pain medication. He is spending more time in his recliner, he told me he sure misses waterskiing this time of year. Joe loves all kinds of sports and was very competitive in boxing and slalom skiing. It breakes my heart to see what prostate cancer has done to my husband.

This was preventable!!! Why didn't his doctor say something when during a rectal examination noted "there seems to be a somewhat enlarged, slightly indurated area on the left side of the prostate" with a PSA; of 1.8. Nothing was said to Joe, I recently requested all of his records and found numerous malpractice issues and the two doctors who treated Joe have been let go. Joe's PSA was 94.80 when they finally ordered a biopsy, when his PSA was 1.8 is when he should have had the biopsy. Now 7 years later Joe has widespread osseous sclerotic metastatic disease.

Don't be afraid to ask questions and go over your lab results with you doctor, after all it's your life and you must be your own advocate. My prayers are with you all, Jessie.

UPDATED

August 2012

My husband Joe is over half way through the Provenge treatments. Side effects are flu like symtoms for 4-5 days after each infusion. The good news is this new treatment works with your own immune system. After the 1st infusion the pain in Joe's right leg went away and he is able to walk with less pain. Our hopes are that after the 3rd infusion his back and hips will have less pain. Provenge doesn't lower the PSA right away and we knew this, however we are hopeful it will start dropping.

Joe's Ongologist was unable to qualify Joe for early access MDV3100, since he was on a blind clinical trial for MDV3100 in the past. We called Medivation to find out when MDV3100 would be approved by the FDA. Lynn Seely the VP said they expect approval by either November or December of this year. MDV3100 could lower the PSA by 89% and used following Provenge would be extremely helpful.

Joe's wanting to start feeling better so he can get his waterski back on and run the slalom course. You see in 1990 we moved the family to Southern Oregon from California. Our family was big into waterskiing (slalom, trick, barefoot etc.), and I was the designated driver! Every weekend we would head to the lake and get on the lake at 6am to get the glassy water and before the crowd showed up. The kids and Joe started going to tournaments and coming home with the trophies. Joe wanted to build a private waterski lake so the family could practice daily, so he did. We found the property, with help from the State Forestry the permits were issued the digging began, I designed the house overlooking the 10 ac lake in beautiful Southern Oregon.

Now you know why Joe's itching to get back on the ski, he is looking at the lake he built in the backyard. My prayer is that he will beable to ski again and run that slalom course!

Thank you for all your support and prayers, Jessie

UPDATED

September 2012

A quick update! Joe is finished with the Provenge treatment and the great news is he is feeling better even with a PSA of 1277. We would highly recommend the Provenge treatment. The side effects are few and well worth it. Also, MDV3100 was approved by the FDA earlier than expected and will be available this month, so thankful for that good news!! Following Provenge with MDV3100 is Joe's choice of treatments. The MDV should lower his PSA by 89%.

Joe's not waterskiing but he is enjoying life with me. Thank you for all of your support and prayers, Jessie

UPDATED

October 2012

Last month was very difficult. My husband Joe had just finished the Provenge treatment and was telling me he was almost 100% pain free. It was the best he felt in months! That next week he was scheduled for his Lupron injection. Joe has been receiving these injection every three months for almost 6 years. I asked the doctor if Joe could take a break for awhile off the Lupron? We were told with aggressive prostate cancer Joe would need to continue getting the Lupron injections every three months.

The next day after the injection Joe started feeling bad and with everyday his pain started to returning worse than before. On top of all that he got pneumonia and was in the hospital for almost a week. He was doing so well after the Provenge and then days after the Lupron injection he is in the hospital receiving morphine every four hours, along with antibiotics to treat the pneumonia, nausea medication and to counteract that laxatives.

While my Joe was in the hospital I started following up on the MDV3100 that had just been approved end of August. It was available only at specialty pharmacies. I contacted this pharmacy and Joe's Oncologist faxed the prescription. Yesterday MDV3100 (Xtandi brand name) was delivered to our door. Joe is taking 4 capsules a day. His PSA was 1581 end of September, it will be checked again end of October. The research I've done on MDV3100 says it could lower the PSA by 89% and that's what Joe is needing badly.

Thank you for your support, our thoughts and prayers are with you.

UPDATED

October 2012

TO THE WIVES from Jessie. If you haven't been told today thank you for all you do, please let me say "thank you" to all the wives and may God bless you and continue to give you strength and courage.

I remember the sadness in my heart when we first heard the word "cancer". Then came the fear of being alone, and the anger and asking "why did this happen" and "why wasn't it detected early". Then becoming my husband's advocate and his voice at times and now the feelings have changed to complete compassion for my husband and what he is going through.

He told me he wants me to be strong, that will be hard for me, but I will be strong for him. I can't promise I won't cry, but I will be strong for my Joe.

My thoughts and prayers are with the wives tonight, Jessie [Thank you Jessie. Wives or partners who have not found the page FOR THE WOMENFOLK might find it useful to go there and see some of the resources available.]

UPDATED

November 2012

Another month has gone so quickly. Summer is gone and fall is in the air. My Joe has now been on MDV3100 (Xtandi) for a month. His PSA dropped from 1581 to 1019. Still extremely high, but the huge drop is very good news. He is having pain in his back and shoulders, however Joe tells me he doesn't need pain medication at this time. His fatique has increased greatly.

Joe has a good appetite and tells me all the time how much he loves my cooking. I try and make his favorites so he doesn't drop any more weight. He was 185 lbs. and is now 157 lbs. His spirit is so strong, he asked me to share this with you.

WHAT CANCER CANNOT DO! Cancer cannot cripple love or shatter hope. It cannot corrode faith or destroy peace. It cannot kill friendships or suppress memories. It cannot silence courage or invade the soul. It cannot steal eternal life or conquer the spirit. (Author unknown)

You are in our thoughts and prayers, Joe and Jessie

UPDATED

December 2012

My Joe's fight is almost over. The new drug MDV3100 dropped Joe's PSA for only one month, after that it started to quickly rise. His Oncologist told us we are out of options. He said I know you are a fighter and you told your wife to not through in the towel, but it is time. Your bone scan shows wide spread bone metastasis. We have tired every treatment available to slow the progression. Now it's about quality of life and pain management. It's time to call Hospice.

A fighter indeed! My Joe has been fighting cancer since 2006 and I've been in his corner since day one. If I could say anything to other men it would be early detection first and foremost. Our two son's have promised me that they will start having their PSA checked in their 40's. With early detection prostate cancer is curable.

Our thoughts and prayers go out to the many men fighting prostate cancer. You are not alone!

Your support and prayers touched our hearts, Jessie and Joe

UPDATED

April 2013

On April 4th, Joe passed away. My soul mate, best friend and wonderful father and grand-father. Joe had been on Hospice for awhile and by the way what a wonderful organization. My Joe passed away peacefully at home as I sang to him our favorite song. He never gave up the fight and held strong to his faith all the way to the end. I can tell you he won the race and got the victory. No more pain, no more tears and no more sorrow. My Joe is with the Lord Jesus today.

My heart goes out to all of you as you continue your fight. My thoughts and prayers are with you all. I am praying for a cure. Sincerely, Jessie

UPDATED

November 2013

Hello, this is Jessie and I would like to share a story with you about my Joe. He served his country in the Vietnam war and carried a small pocket Bible in his shirt. One night as he read he gave his heart to the Lord Jesus in a war zone in Vietnam.

At Joe's memorial service I put that small pocket Bible in his hand and at that moment my ministry began. I would like to give you a pocket Bible free of charge and non-denominational with blessings from Joe and myself. Looking forward to hearing from you and as always my thought and prayers are with you.

Blessings, Jessie


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