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Never Surrender

Bill91101
Posts: 60
Joined: Apr 2009

Got the latest PSA results this morning (from lab website) = 2.4. Up from 0.2 in November, 2016. I’ve been getting Zoladex injections since July, 2016 when my PSA jumped up to 2.3. This is my second round of HT.

Not good. But not the end of the world.  I see Urologist this Monday to discuss PSA result.  Originally scheduled for a Zoladex injection.

My background:

April, 2009: PSA =89; PCa found in one lymph node. Gleason score of 3+4. Blood in urine. A lot of trouble sitting due to pain. I thought at first that the pain was a result of bike riding.

Started HT (Degarelix, then Lupron) May, 2009 through January, 2011. 48 sessions of IMRT. PSA went down to 0.2.

PSA wavered between 0.2 and 0.3 until recently.

July, 2016: PSA = 2.3

July, 2016: Started Casodex. After 10 days started Zoladex injections (3 mg) monthly for 3 months. Continued Casodex for 50 days after the first Zoladex injection. (Two months total for Casodex).

November 2016: PSA = 0.2

Received 10.8 mg Zoladex injection November, 2016 (3 months worth).  Found out today PSA jumped up to 2.4.

I read this discussion board everyday. I find a lot of great advice and spiritual insight here (thanks, all!). I know what a lot of the guys are going through is a lot worse than where I at.

California sun is shining today.

Never surrender.

VascodaGama's picture
VascodaGama
Posts: 3011
Joined: Nov 2010

Bill,

The increase of PSA could be a cause of bad administration of the shot. It could also be a laboratory error. The best is to test the testosterone to verify the castration level (T=<30 ng/dL). In other words, high PSA at castration levels would signify refractory. High levels of testosterone (T>50 ng/dL) could mean drug's loss of efficacy due to bad administration. Surely you camn always repeat the PSA test or wait till the next periodical test.

Best wishes,

VG

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Bill, 

I also live in so ca.

There is an excellent support group, " the prostate forum of orange county"  that meets in Fullerton. There is a meeting tonight. The discussion group for advanced cases starts at 5 PM until the meeting that starts at 7 PM. The location is "First Presbyterian Church, 838 North Euclid Street, Fullerton, CA 92832"

I cannot make tonights meeting, but I strongly advise that you attend.

 

Directions: 

http://www.From 91 (Riverside) Freeway: Take the Euclid Street exit, go north 1 3/4 mile. From Interstate 5 Freeway: Take the Euclid Street exit (in Anaheim), go north 3.0 miles.

First Presbyterian Church, 838 North Euclid Street, Fullerton, CA 92832

 

 

 

Bill91101
Posts: 60
Joined: Apr 2009

Vasco and Hopeful:

Thanks for the replies!

Vasco: I'll be doing what you’re recommending (great suggestion!) – get my testosterone level checked and see where thing are in that regard. If my Urologist won’t do it, I’m sure my regular doc will. A light bulb went on over my head after I read your recommendation.

Also, since I haven’t been feeling a lot of side effects from the recent Zoladex injection (hot flashes…) maybe it wasn’t administered correctly. But it’s easy to be a little too subjective in these cases, sometimes. I haven’t had a lot of issues with Zoladex (three one-month/3 mg injections; one three-month/10.8 mg injection) as it is. My wife was also wondering along those same lines.

Hopeful:

Thanks for recommending my joining a support group. I’m out in the Riverside area and have mobility issues so going out to Fullerton would be pretty tough for me. I’m not much of a ‘joiner’ but I can look for something out in this area.

Again, thanks guys – your recommendations and support got me going in a positive direction.

Stay positive everyone.

Bill

 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Bill, 

Sorry, I thought that you were in the Pasadena area.

I don't know of a group in the Riverside area, but you may wish to check out the USTOO website. USTOO sponsors support groups world wide, and the organiztion lists the ones that they sponsor.

annatipping
Posts: 1
Joined: Mar 2017

My husband was diagnosed with advanced adenocarcinoma of the prostate in 2001.  PSA 32 Gleason 7.  Our GP put him on Zoladex 10.8 every 3 months and for 10 years we lowered his PSA to 2-3 and even 0 at one point.  This was not just the Zoladex but complete lifestyle and diet change.  No animal protein, biochemical nutritional support, special teas and juices, complementary therapies - it was hard slog but we thought we beat it until the 11th year, his PSA rapidly escalated to find his PC metastasised to his bones.  A raft of androgen deprivation therapies followed with no success and then chemotherapy with doecxtaxel and cabaxitaxel and then we were given more false hope with radium 223 which made my husband very sick very quickly and as a direct result he developed pancytopenia and had scores of invasive blood collections, cross matches, and blood transfusions and he passed away after a prolonged and painful suffering of 9 months as we surrendered our trust to doctors and specialists as we thought they had my husband's best interests in mind.

Don't surrender - we never did - my husband fought hard to stay alive - he had a lot to live for - children, grandchildren, me but he died.  We all die but we should never surrender hope, never surrender to the medical community - trust yourself - eat well, exercise, enjoy every moment,  Yes, there is a place for conventional medicine but not at the expense of suffering and the benefit of pharmaceutical companies who sponsor drug trials.

My husband was at increased risk of coronary heart disease as a result of being on androgen deprivation therapies but noone told us or even took steps to prevent the heart he had.  The chemo and radiation put him at risk of bone marrow suppression and even though we were told about neutrophils we were never explained the downline ramifications of bone marrow suppression and then he was given radium 223 and that was the end ot if.

Do not surrender your life to the hands of someone you don't completely trust - you need to know why you are getting one line of treatment over another, the sequencing of cancer treatment protocol, the shrot and long term impacts to overall health and question whether the treatment is worse than the disease.

 

I wish you and every other person suffering with cancer, their carers, and their families the best of health.

 

Anna.

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

There is so much here.  First, positive atitudes even in the most hash circumstances.  And then Anna's post about treatments that kill.  Few people realize the negative side effects of pharmaceuticals and treatments and doctors are more into selling them than discussing side effects, and perhaps the doctors themselves do not even fully know the side effects.  Often the death certificate of cancer patients reads:  Death due to cancer and the side effects of Chemotherapy.   

        Most see life as happening between two events - birth and death, as if there is a beginning and an end.  Birth and death are merely markers, NOT the beginning and end.  If you look at the soul, or spirit, there is no death.  Think that life is from eternity to eternity and live that way.  Einstein proved that time does not exist except in the mind of Man.  When you think of life in terms of time, there is  a tendancy to be in a hurry.  One day, and you do not know when, your life is going to expire.  So, you often feel  a need to hurry, to get on with it.  You do not have forever - but that is false - you DO have forever and forever.  Think of eternity to eternity and then you have time to enjoy the moment, to pause and smell the daisies, to be grateful for any time you have had in this realm.   It is never about how LONG you live, it is always about How you lived.  I have often suggested to read, The Short Happy Life of Francis Macomber by Hemmingway.  Saint Paul said, "The ONLY purpose of life is spiritual growth."   There are two paths to spiritual growth:  Thy Kingdom Come, Thy Will be done" and "My kingdom come, my will be done".  Spritual growth means moving from My will to Thy will be done.  When you totally surrender to Thy will be done, then Celebration happens even in death.  However, spiritual growth can only come from the inside, and never from the outside.  You can memorize the Bible and nothing will change.  Change happens only IN THE MOMENT, and happens because you find the inner wisdom already inside of you that is your birthright.   Life is about spiritual growth; cancer is about spiritual growth, death is about spiritual growth, not just for the one dying, but also especially for those who are left behind.  Being reborn does not mean saying words like, I accept Jesus as my Saviour.  Being reborn means leaving the world of Man and Adam of My kingdom come.  Being reborn means listening to St. Paul the only purpose of life is spiritual growth.  And then you can celebrate it all because it is all "Thy Kingdom come, Thy will be done".  Love, Swami Rakendra

VascodaGama's picture
VascodaGama
Posts: 3011
Joined: Nov 2010

Anna,

I am sorry for the death of your husband. You both did everything you could to fight it but unfortunately the bandit won. I want to thank you for sharing your story. It is important to us survivors still in the struggle to reinforce the opinion that we should be the leaders and make use of the doctors to help us in decisions, in particular in knowing the pros and cons of a treatment. Nobody can tell if your husband would have lived longer would he had surrender his fate to the bandit, without your interventions, but one knows for sure that he had quality living during the 11 years before cancer was found in bone.

It is hard to blame the doctors as they know little about the cancer. They simply follow recommendations and try using the weapons laid at their disposal. It is not their responsibility to save someone but to treat to the best they can. In the end, we are the ones purchasing the therapy and should know what we're buying.
At any rate treating is the best choice but as you say it; question whether such treatment is worse than the disease.

Please accept my sincere condolences.

VGama

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