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Erfahrungsberichte

       
16.07.2010 0.01 23.05.10
Well, it has now been 4 years that I†™m on my treatment for the recurrence of my PCa. It has helped me to build a closer relationship with my Oncologist and the health team at the chemo center. We†™re all friends and working towards the same goal, to keep us all healthy and coming back for the next appointment.

As it was mentioned in a previous update, my Doc and I agreed to stay on constant treatment without a †˜vacation†™ period in there, as long as I could tolerate the side effects, and just monitor the impact. My PSA has stayed at 0.0 over the entire time, so it is working and possibly my pushing the medical team when I was first starting the recurrence (as seen by the PSA rise) to begin a treatment regime, we may have sent the cancer back into remission. I don†™t really want to find out if it is by stopping treatment, but the side effects do have an accumulative impact on the bones, muscles, energy and sex drive.

For me, really thinking about how it has changed my life, the side effects are tolerable, short of the summertime hot flashes, but everything else is manageable. My wife is fully supportive and enjoys more to have me around to go on walks, have talks, share our family and have dinner with. We don†™t give up.

Over the past year, I†™ve continued to be involved with a couple of prostate cancer support groups, serve as a support leader in UsToo locally and try to be there for others that are dealing with this disease. Staying tuned in on the research and breakthroughs the medical field is making is very encouraging and adds hope to my quest, survival.

More now than not, I choose when to think about my cancer and when to get back in the swing of doing the things that are important to me. I manage my health, diabetes and exercise to be in better shape. Being able to do things for my children and grandchildren is a higher priority and gives me satisfaction to help be a bigger part of their life. Reality is that a thing like cancer can take that all away, and my decision is to not let that happen.

For this year and many more ahead, I feel good, energized and enjoy the parts of life we are supposed too. Keeping a positive attitude, stay healthy, enjoy every moment and maybe beat this disease. I†™m hopeful !

My best to everyone and keep fighting it.
       
14.02.2009 0.01 04.11.08
Another year has come and I am still enjoying the benefits of my treatment, both the good and the side effects. I guess it is not all bad since getting to do a lot of things you want to is always great. I've been on my Zoladex & Zometa treatments continually for the past 2 1/2 years. I get to see all the nice people at the chemo center every 3 months and appreciate that there are many others there for treatments of a far worsening disease. Life has more meaning when you realize the challenge others have to deal with and there struggle for hope.

I hope that my treatments keep working as there is a lot of great research being made and someday, there may actually be a way to get control of our disease. Over the last year, I have continued to be very active in my UsToo Support group, counseling, doing some presentations and just trying to help others that are beginning this journey. I remember how it helped me 7 years ago on my 1st diagnosis.

From our group, I was also able to help with a Radio 'Talk-show' on 'Health Updates' sponsored by the local hospital. It was great to try and get the message out to the community of people that may be dealing with or wonder what this disease is all about. It actually was fun but On-Air live leaves no room for mistakes!

I also had a very special privilege to be chosen as part of a US Congressional Medical Research program that sponsors millions of dollars towards Cancer research. Only a small number of prostate cancer survivors were picked to represent our PCa community and to speak out from a patients view of where all this money should be spent. So far they have earmarked over $840 million which in research . In total, over $4 billion has made it's way to overall cancer research!

I can only say that there is a very brilliant team of doctors from all over the world that really understand the workings of cancer cells. They are getting real close to finding the cause and a potential way of stopping the disease. As a member of the funding evaluation process, you have to study things I only remember back from college or university. Complex biology, genetics and chemistry! That was just to understand the research proposal and make a decision on it. It was very rewarding and to see the hope that may be coming.

Each day brings new views on life and how to enjoy it, and the things I can be involved with only strengthens my hope for a cure for all of us. I will continue to enjoy all of this and share the family & fraternal relationships we have made even more.

Best to all.
       
08.01.2008 0.01 14.11.07
It's the New Year and I am still doing ok. I have been on 3-month Zoladex treatments since Oct '06 and went through an 8 month series of Zometa to reinforce my bone integrity from last Feb-Aug '07. Now I get both treatments every 3 months. My oncologist & I discussed a 6 month 'off' cycle (holiday!) from the Zoladex on an annual basis, but since it takes 9-12 months to wear off, you never get the holiday! I asked to stay on the 3 mo. treament plan, which he agreed was probably better. The side effects post-treatment hit me fairly hard for 7-10 days, but once I am passed that, I get on with life. My PSA has been <0.01 for the past 15 months and I currently try not to think about my cancer or it's attempt to return.

By keeping my focus on what I can do each day to enjoy life and not regret missing out, I tend to have more energy and satisfaction. The Zoladex takes it's toll as we know, but my wonderful wife & I accept that being together is more important. She retired 3 months ago and we are having some great times just enjoy things we had dreamed of doing. For now, we fight this together and appreciate the help from each other and all the wonderful people in our support group.
       
06.12.2006 0.01 15.11.06
In September '06, my PSA was 1.45 ng/ml, up from the Aug '06 1.0 ng/ml. The PSADT is approx 3.4 months, up from the 5.6 months earlier. Although this is early in the medical view, the doubling shows it is moving more quickly than we would like. I met with Dr. Warren Suh, radiology oncologist at DFCI, whom assesed that with the current status, it would be better to go into treatment now than wait until later. His view was this would be the chance of trying to control the tumor before it becomes more difficult to manage. He suggested radiation & hormones. Post bone scan, the team revised their recommendation to only hormones.

My bone scan showed micro tumors in the left hip socket and right abdominal lymph node. Not the places to radiate. I'm on Casodex & Zoladex for a year now, with 6 month bone scans and 3 month PSAs to see if it controlled. I'll be starting Zometa in February to help with any bone loss from the hormones. Overall, my health stays relatively good and with some of the side effects from the hormones, quite manageable.

For now, this is a conservative approach and offers time to monitor my PCa, giving me time to continue staying healthy and hoping the research advances with some of the treatments that are on the horizon.
       
16.09.2006 0.01 06.08.06
Currently, I am 59 yrs old and my PSA this month, August, was 1.0 ng/ml. I am testing every 3 months and watching the doubling time (PSADT) to determine when treatment will become appropriate. My last readings have gone up every 3 months, from 0.30 ng/ml Oct 2005, to 0.50 ng/ml , 0.70 ng/ml, to 1.0 ng/ml. I have gone into recurrence and now seeking the best treatment I can. With the original diagnosis as T3C - T4 from the pathology report, I was classified as metastatic. Surgery was successful, but we knew it would return. Now the problem is where is it ?

Researching the many reports and trials be conducted for PCa, I have learned that Stage 3b/c in recurrence is considered Stage 4 and shows a 5-7 year probability for survival. Typically, this stage fails hormone treatments in 1-2 years. The biggest problem I have is that I feel really great, no pains and I'm staying in good physical shape. My goal is to get into a clinical trial or advanced treatment so that I may be able to 'get ahead' of this disease and maybe try to beat the odds.

I am currently a patient at the Dana Farber Cancer Institute in Boston, Mass. and have met with Dr, William Oh and next with Dr. Anthony D'Amico to explore what we can do next. It is not urgent right now, but they want to wait until I reach 4-5.0 so the tumor will be large enough to scan for the with an MRI & bone scan and see where it is. We are looking at some possible treatments with Docetaxel (Taxotere) and/or Thalidomide. I'm a bit nervous about the treatment, but more afraid of the consequences with the normal course, and missing the opportunity for aggressive treatment while I'm healthy.

For now, I get my PSA tested, do the things I enjoy and try not to dwell on the PCa too much, until my November '06 test.
       
04.02.2002 20.40 27.11.01
During a routine physical exam November 2001, my new primary care physician notified me that I had a PSA of 20.4 ng/ml. He immediately referred me to a urologist for evaluation and biopsy. I was 54 and had been in very good health, until then. The biopsy came back with a 4+4 (8) Gleason score. Two-thirds of the sticks were over 85% cancerous.

I was sent for a bone scan which came back negative and then met with the radiation oncologist. His visit was extremely detailed and helpful to identify what choices I had and how they would impact me. He also got me involved with the local USToo group at the Cancer clinic. Again, the best move for me. All involved believed the cancer was contained. I started Zoladex to slow the growth until treatment.

Through the meetings, I was able to learn about the results and side effects that the members experienced with their PCa treatment. It helped me ask better questions and eventually make the right choice, surgery.

In June of 2002, I had the usual pre-MRI to ready for surgery. The surgeon I had chosen was the best choice I have made to date. The relationship was upfront and honest, no beating around the bush. The surgery took 5 1/2 hours as he found that the cancer had indeed spread into my seminal vesicles and migrated up into the bladder neck. The lymph nodes were negative on initial pathology at the beginning of surgery, or he would have stopped there. The Doctor removed the prostate, SVs, lymph nodes and extra margin from the bladder. It was negative, which should give me a all-clear from a PCa perspective.

Post visits with the surgical urologist identified that I was doing well, enough for me to ask if it was all over? He did tell me that for now yes and I should enjoy every day, because systemically, this disease returns in cases at this level (20.4/8/T3b). He said we can make the decisions needed when the situation warrants. He believes in reducing the trama and morbidity to the person as much as possible. I agree with that too, but wonder about having to go through the next level of treatments.

My side effects were usual but improved over the 6-12 months. No incontinence from 2 months post RP, minor abdominal muscular pain while healing, and impotence improved to the point of minimal use of Rx to return to sexual activity. I mention that I could not have nerve sparing surgery.

My PSA from July 2002 until Oct 2004 was undetectable for 7 straight readings. Last fall I had my first 0.1 which was retested 2 times since. Again 0.1 and followed by a 0.2 this spring 2005. My Doc is suggesting that I may consider hormone therapy this fall if the PSA continues to climb.

During the past 2 years, I had been diagnosed with Diabetes, high blood pressure and cardio arrhythmia. All of which I have been able to get well into control and normal, with meds and a lot of exercise.

In the spring of 2004, my primary MD said I had a degenerative lumbar #1 after my complaining of low back pains. Prescription - keep up the exercise and careful on the back strain. My concern is now around the recurrence of my PSA and the far possibility that something else may be going on.

I have been very active in sustaining my health, weight, physical and mental well-being, and keeping a real positive attitude. I hope to keep ahead of this disease and stay on track to fighting it. I'm glad that I had recently found this group to help me with insight and hope.

Thanks to all and continued progress!
Rick
       

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