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advanced metastatic disease - what am I missing?

Posts: 2
Joined: Oct 2008

Hi All,
My fiance has metastatic prostate cancer that is all throughout his hips, spine, and spots on his brain too. He was diagnosed with this condition on New Year's Eve. We are now under the care of a medical oncologist at Dana Farber Cancer Institute. His treatment is Casodex and Lupron. He now plays a bit by my rules. We have approached treatment in the following ways:
1.) Traditional medicine - oncologist
2.) Alternative Therapies - weekly acupuncture and massage for stress relief and lymph system flow
3.) Diet - we follow a low animal fat, colorful veggie/fruit, high grain type of diet - no dairy. We eat 7-15 colors of vegetables. We limit sugar intake to small bowls of sorbet after dinner, whole grain cookies. If sugar is consumed, it is consumed after a meal rich in whole grains. We've met with a nutritionist who has recommended certain vitamins too. He drinks pomegranate and green tea.
4.) Exercise - (he was walking much to begin with---fatigued and sick) now we walk daily together 3-6 miles. We started lifting weights together too
5.) Laughter - we laugh a lot. I moved cross country after diagnosis. He proposed to me without ever meeting my dog. He thought he would tolerate my dog, but he loves her. She is his first dog she make him laugh at her simplistic nature.
6.) Faith - We pray and attend church. To us, prayer is very powerful. One of our main theories is that God helps those who help themselves.
With all of this said, what am I missing? I manage his healthcare now. I'll tell you more about him.
-54 years old
-had always been active, thought he pulled a muscle playing basketball.
-November 30, 2007 - PSA 1425
-December - positive bone scans, biopsies, GLEASON 8, painful, fatigues, and had lost 20 pounds. Looked like walking death.
-December 15, 2007 - he asked me to marry him
-December 20, 2007 - I bring my dog to the East Coast to spend time at my Moms' farm while I relocate and take care of fiance - START STRICT LOW FAT DIET
-December 31, 2007 -New Year's Eve- PSA dropped to 1250diagnosed Stage IV prostate cancer, bone scan showing disease all throughout hips, spine, and spots on brain
-January 1, 2008 - Happy New Year - I quit my job on West Coast.
-January - sperm banked - very painful for him to ejaculate
-January 15th - Lupron started one week after Casodex
-February - PSA 98
-April - PSA 24
-July - PSA 12
Our next PSA is scheduled middle of October. I thought Lupron was supposed to get the PSA to zero very quickly. Has anyone else experienced this decline? Overall, his health is good. Great blood pressure, body weight, cholesterol.

What am I missing? What can I expect to happen?

Thanks for reading.

Posts: 195
Joined: Aug 2006

You have certainly had a year and several more these past 10 months. Add to that your partner and his experience. What life changes to survive!
I think your partner is in a situation where his care will require multiple modes of treatment. Hormone tx can be successful, as it has been with him, and then chemo therapy will provide adjunct power. Some doctors prefer to go in a sequence, others to add concurrently for the cumulative effect. The oncologist may suggest clinical trials for him which can provide opportunities for treatment available only through that method. Your suggestions for life change are significant and healthful, though not curative, sadly. An important issue is for him to find an oncologist he trusts and feels good with and then move forward confidently.

Posts: 2
Joined: Oct 2008

He seems to be in a pseudo remission. He looks and feels better, and he has virtually no pain. Couldn't this last more time? Has anyone else experience a Lupron + Casodex response with an initial Stage IV metastatic diagnosis? Doesn't the cancer sometimes leave the bone? Am I crazy to think he could respond to this for some time?

We will consider a trial, but most trials are geared at people with hormone refractory prostate cancer......so it seems.

And, yes it has been a crazy year. The dust is finally settling......or so it seems, yet it's always difficult to determine when this pseudo remission will become a distant memory.

Posts: 3
Joined: Oct 2008

Hi, I am sorry to hear about your fiance. He is very lucky to have someone who is so proactive on his behalf. My Dad was diagnosed with Stage IV metastatic prostate cancer (also recurrent) August 07. It was very advanced when we found it. Spine, legs, arms, ribs, skull (did you mean skull as opposed to brain?), hips. He was immmediately put on Lupron. We were told that the "average" time that hormone therapy works is two years. It took my Dad's PSA down for about 7 months and it started back up again. He then started Casodex, which took the PSA down for about three months and is now back on the rise. So his next choice will be Chemo. I have found that Dr. Patrick Walsh's book about Prostate Cancer (2nd edition)has been very helpful. It may answer a lot of the questions you have. He was my Dad's surgeon for his original diagnosis in 1991 and he did his surgery. Unfortunately, it came back on his all of these years later.

I go to all of my Dad's appointments with he and his wife and I keep a file (about 3 inches thick now) with all of his records, any research I find, test results, etc.. You may find this to be helpful.

I would be happy to talk with you. I wish you and your fiance well.

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