Metastatic prostate cancer to the bone - Gleason score 5+5 (10)

roncouch
roncouch Member Posts: 6
in Prostate Cancer #1
I am a 74 year old male who was enjoying great health until a routine exam in mid July of 2012 showed an elevated alkaline phosphatase. Further testing showed bone involvement. I lit up like a Christmas tree on the bone scan, and the ct scan showed prostate problems. A needle biopsy showed a high Gleason on 14 of the 16 samples (5+5). I am currently taking 50mg of Bicalutamide daily and will be getting injections of Lupron and Xgeva as soon as Medicare approves same.
I am scheduled for another ct scan soon to determine whether or not I will need a pin to support the cancer damaged neck of the hip.
Needless to say, this revelation has been a bitter pill, and I wish to share this with you.
On the bright side, I have only mild to moderate pain in the hip, and an occasional pain pill allows me to sleep fairly well.
Any input will be appreciated.
Ron

Comments

  • hunter49
    hunter49 Member Posts: 247 Member
    #2
    Welcome Ron:
    Sorry to hear
    Welcome Ron:
    Sorry to hear about your diagnosis. what was your akaline phosphate level? Do you have a psa number as well. Usually even with advanced cancer like yours it should respond to treament of hormone and radiation which will help pain. Some ereally smart guys will chime in soon. They will give you a lot more information
  • roncouch
    roncouch Member Posts: 6
    #3
    hunter49 said:

    Welcome Ron:
    Sorry to hear
    Welcome Ron:
    Sorry to hear about your diagnosis. what was your akaline phosphate level? Do you have a psa number as well. Usually even with advanced cancer like yours it should respond to treament of hormone and radiation which will help pain. Some ereally smart guys will chime in soon. They will give you a lot more information

    PSA & Alkaline Phosphatase
    The alkaline phos was 162. The PSA was 2.4. Last year the PSA was 0.2. After the prostate needle biopsy, the PSA jumped to 6.14. I've had a historically low PSA - until recent. No history of prostate ca in family, but father died from bladder ca. It's a great thing that people are willing to share on this site. Knowing I'm not alone eases the burden. Thanks for your input, Hunter!
  • roncouch
    roncouch Member Posts: 6
    #4
    hunter49 said:

    Welcome Ron:
    Sorry to hear
    Welcome Ron:
    Sorry to hear about your diagnosis. what was your akaline phosphate level? Do you have a psa number as well. Usually even with advanced cancer like yours it should respond to treament of hormone and radiation which will help pain. Some ereally smart guys will chime in soon. They will give you a lot more information

    PSA & Alkaline Phosphatase
    The alkaline phos was 162. The PSA was 2.4. Last year the PSA was 0.2. After the prostate needle biopsy, the PSA jumped to 6.14. I've had a historically low PSA - until recent. No history of prostate ca in family, but father died from bladder ca. It's a great thing that people are willing to share on this site. Knowing I'm not alone eases the burden. Thanks for your input, Hunter!
  • roncouch
    roncouch Member Posts: 6
    #5
    hunter49 said:

    Welcome Ron:
    Sorry to hear
    Welcome Ron:
    Sorry to hear about your diagnosis. what was your akaline phosphate level? Do you have a psa number as well. Usually even with advanced cancer like yours it should respond to treament of hormone and radiation which will help pain. Some ereally smart guys will chime in soon. They will give you a lot more information

    PSA & Alkaline Phosphatase
    The alkaline phos was 162. The PSA was 2.4. Last year the PSA was 0.2. After the prostate needle biopsy, the PSA jumped to 6.14. I've had a historically low PSA - until recent. No history of prostate ca in family, but father died from bladder ca. It's a great thing that people are willing to share on this site. Knowing I'm not alone eases the burden. Thanks for your input, Hunter!
  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #6
    roncouch said:

    PSA & Alkaline Phosphatase
    The alkaline phos was 162. The PSA was 2.4. Last year the PSA was 0.2. After the prostate needle biopsy, the PSA jumped to 6.14. I've had a historically low PSA - until recent. No history of prostate ca in family, but father died from bladder ca. It's a great thing that people are willing to share on this site. Knowing I'm not alone eases the burden. Thanks for your input, Hunter!

    Hormonal manipulations and Newer drugs
    Ron

    Welcome to the board and thanks for sharing your case.
    Though it is not new to us (survivors) reading about advanced, symptomless, low PSA prostate cancer cases, it is extremely rare to read about Gleason score 10 experiences.

    Even though you got the highest aggressive type of cancer, you have a choice of treatments and you can expect years of quality living.
    The treatment protocol you mention above is typical in similar cases. The hormonal drugs (bicalutamide plus Lupron) will try to get a “grip” on the cancer turning off the feeding process (PCa feeds on androgens) while Xgeva (denosumab) will care for bone health. This is a newer drug which has shown success in preventing bone fractures in guys with cancer in bone.

    Hopefully your cancer responds well to hormonal manipulations. You may check that after three months through a PSA test. If the double blockade with bicalutamide and Lupron is not enough then you may increase the bicalutamide “power” up to 150mg and add one more drug (5-ARI) to curb the “fabrication” of the dihydrotestosterone (a tenfold powerful type of testosterone). This is what is known as triple androgen deprivation therapy (ADT3). In case of failure then one is put on second-line hormonal drugs before been moved in to chemotherapy.

    You may also be interested in knowing about clinical trials using drugs that better address cancer development in advanced cases. You can read about details typing “prostate cancer” in the search engine of this link;
    http://clinicaltrials.gov/ct2/show/NCT00699751

    Several newer hormonal drugs making part of the second-line HT arsenal have proven success in preventing cancer progress by inhibiting androgen “own manufactured” by the cancerous cells. Some of these drugs are on trial and you could discuss with your doctor about any possibility for you to join a program. Surely I would recommend you to accept participation if you get the”real thing”. Do not accept to be grouped in the placebo if such alters your present protocol.
    Look for ; Zytiga (abiraterone), MDV 3100 (enzalutamide ), TAK-700 (orteronel).

    The above link is for the “marvel” drug named Alpharadin (radium-223 chloride) which have shown 100% success in a previous phase III trial, addressing metastatic cancer in bone. They accept patients with castrate resistant status but your doctor may apply for your participation in locations still accepting patients with similar status.
    You can read details here;
    http://www.reuters.com/article/2012/06/04/idUS31213+04-Jun-2012+HUG20120604
    http://www.medicalnewstoday.com/articles/233215.php

    I would also recommend that you get familiar with the side effects from the drugs and from the hypogonadism condition that the treatment aims. In some guys those are mild but in some they become unbearable.
    I have been on ADT for the past 18 months and are doing fine. A fitness program is helping me to counter the effects but in your case with problems in the bones you may discuss with your doctor for a mild program proper to your status, that you could follow. Changing diets also is helpful.
    The National Cancer Institute got an article titled “An Overview of Nutrition in Cancer Care”, which may be of interest to you.
    http://www.cancer.gov/cancertopics/pdq/supportivecare/nutrition/Patient/page1#Keypoint5

    Here is a book that may help you to understand details:
    “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers.

    Where are you from?
    I wish you the best of lucks in your journey.

    VGama
  • roncouch
    roncouch Member Posts: 6
    #7
    VascodaGama said:

    Hormonal manipulations and Newer drugs
    Ron

    Welcome to the board and thanks for sharing your case.
    Though it is not new to us (survivors) reading about advanced, symptomless, low PSA prostate cancer cases, it is extremely rare to read about Gleason score 10 experiences.

    Even though you got the highest aggressive type of cancer, you have a choice of treatments and you can expect years of quality living.
    The treatment protocol you mention above is typical in similar cases. The hormonal drugs (bicalutamide plus Lupron) will try to get a “grip” on the cancer turning off the feeding process (PCa feeds on androgens) while Xgeva (denosumab) will care for bone health. This is a newer drug which has shown success in preventing bone fractures in guys with cancer in bone.

    Hopefully your cancer responds well to hormonal manipulations. You may check that after three months through a PSA test. If the double blockade with bicalutamide and Lupron is not enough then you may increase the bicalutamide “power” up to 150mg and add one more drug (5-ARI) to curb the “fabrication” of the dihydrotestosterone (a tenfold powerful type of testosterone). This is what is known as triple androgen deprivation therapy (ADT3). In case of failure then one is put on second-line hormonal drugs before been moved in to chemotherapy.

    You may also be interested in knowing about clinical trials using drugs that better address cancer development in advanced cases. You can read about details typing “prostate cancer” in the search engine of this link;
    http://clinicaltrials.gov/ct2/show/NCT00699751

    Several newer hormonal drugs making part of the second-line HT arsenal have proven success in preventing cancer progress by inhibiting androgen “own manufactured” by the cancerous cells. Some of these drugs are on trial and you could discuss with your doctor about any possibility for you to join a program. Surely I would recommend you to accept participation if you get the”real thing”. Do not accept to be grouped in the placebo if such alters your present protocol.
    Look for ; Zytiga (abiraterone), MDV 3100 (enzalutamide ), TAK-700 (orteronel).

    The above link is for the “marvel” drug named Alpharadin (radium-223 chloride) which have shown 100% success in a previous phase III trial, addressing metastatic cancer in bone. They accept patients with castrate resistant status but your doctor may apply for your participation in locations still accepting patients with similar status.
    You can read details here;
    http://www.reuters.com/article/2012/06/04/idUS31213+04-Jun-2012+HUG20120604
    http://www.medicalnewstoday.com/articles/233215.php

    I would also recommend that you get familiar with the side effects from the drugs and from the hypogonadism condition that the treatment aims. In some guys those are mild but in some they become unbearable.
    I have been on ADT for the past 18 months and are doing fine. A fitness program is helping me to counter the effects but in your case with problems in the bones you may discuss with your doctor for a mild program proper to your status, that you could follow. Changing diets also is helpful.
    The National Cancer Institute got an article titled “An Overview of Nutrition in Cancer Care”, which may be of interest to you.
    http://www.cancer.gov/cancertopics/pdq/supportivecare/nutrition/Patient/page1#Keypoint5

    Here is a book that may help you to understand details:
    “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers.

    Where are you from?
    I wish you the best of lucks in your journey.

    VGama

    Gleason 5+5
    Thank you so much, VGama, for the wealth of information. It is good of you to share, and offer insight and positive input. So much of what I've heard recently is negative.

    My wife and I live in east Tennessee having moved from the Detroit, MI area nearly 13 years ago. When I became aware of my situation slightly over a month ago, I wondered if I would get the same care here as I could expect in a major metropolitan area, and after considerable research have determined the solutions offered by the specialists at the Thompson Cancer Clinic (Knoxville and satellites) offer the same treatment protocol one would expect at top-notch facilities anywhere in the country.

    Please let me know how you are getting along.

    Ron
  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #8
    roncouch said:

    Gleason 5+5
    Thank you so much, VGama, for the wealth of information. It is good of you to share, and offer insight and positive input. So much of what I've heard recently is negative.

    My wife and I live in east Tennessee having moved from the Detroit, MI area nearly 13 years ago. When I became aware of my situation slightly over a month ago, I wondered if I would get the same care here as I could expect in a major metropolitan area, and after considerable research have determined the solutions offered by the specialists at the Thompson Cancer Clinic (Knoxville and satellites) offer the same treatment protocol one would expect at top-notch facilities anywhere in the country.

    Please let me know how you are getting along.

    Ron

    You are not alone
    Ron
    Thanks for asking. I am doing fine.

    Along the years I notice that we patients may have similar cases but what works for one may not do the same in another. We are not equal however, fortunately there are several treatments and drugs so that we all can expect similar successes as we progress in our path. We need to be confident and confront the bandit fully.

    I am younger than you at 62 with a PCa history of 12 years. Along my journey I had two failed treatments (surgery in 2000 and radiation in 2006) and since November of 2010 that I am on hormonal therapy with a single blockade with Eligard (similar to Lupron). I have not been diagnosed as advanced as you, my Gleason score was 2+3=5 initially but the bandit never shown its “face” again and I do not know where it is hidden.
    I never got a positive scan or image study though my case is systemic. I am hopeful to control the cancer with ADT until it fails and then move on to the second line drugs (if II can afford it). At present I am enjoying a Off-drugs vacation so that I can have a relief from the side effects

    You can read about my progress in this link:
    http://csn.cancer.org/node/244938

    If you like, you can check the stories of cases similar to yours from guys in the same age range, Gleason, etc. Here is the link;
    http://www.yananow.org/query_stories.php
    http://www.yananow.org/


    You will do fine as well. Just be careful and check periodically the lipids (liver health) and other important vital signs. Care for any case of anemia.
    And read a lot about the problem. It will give you the confidence needed to confront the problem.
    Many guys in this forum are quite knowledgeable about PCa so that you can expect good answers to your queries.

    Best of lucks.
    VGama
  • cyb
    cyb Member Posts: 1
    #9
    Metastatic Prostate cancer to Bone High PSA
    My father is 71 years old and was in great health until about 3 years ago when he was told he had aggressive prostate cancer that the only cure option was radiation. He went thru that and the cancer was "gone". Then he was experiencing shoulder pain thought it was a torn rotatar cup, no it was a rare form of cancer that the tumor was eating away at his bone. Chemo and radiation and right before christmas in 2011 we were told it was gone. Then 3 weeks ago he was experiencing tremendous pain, lack of appetite, short of breathe, thought he was having a heart attack. Long and short of it his PSA level last friday was 1,000. Dr. has said cancer is back (and probably was never gone, cancer hides) and is in his bones all over. He is extreme pain and very weak, he has pain patch, anti nausia pills, hormone shot and started chemo last week. Dr. has said he WILL put him in remission but it is not curable. We are all very scared and worried about my mom. They have been happily married since there were 18 and 16 and she is only 69. As the oldest I want to do something but I don't know what i can do other than be there.......
  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #10
    cyb said:

    Metastatic Prostate cancer to Bone High PSA
    My father is 71 years old and was in great health until about 3 years ago when he was told he had aggressive prostate cancer that the only cure option was radiation. He went thru that and the cancer was "gone". Then he was experiencing shoulder pain thought it was a torn rotatar cup, no it was a rare form of cancer that the tumor was eating away at his bone. Chemo and radiation and right before christmas in 2011 we were told it was gone. Then 3 weeks ago he was experiencing tremendous pain, lack of appetite, short of breathe, thought he was having a heart attack. Long and short of it his PSA level last friday was 1,000. Dr. has said cancer is back (and probably was never gone, cancer hides) and is in his bones all over. He is extreme pain and very weak, he has pain patch, anti nausia pills, hormone shot and started chemo last week. Dr. has said he WILL put him in remission but it is not curable. We are all very scared and worried about my mom. They have been happily married since there were 18 and 16 and she is only 69. As the oldest I want to do something but I don't know what i can do other than be there.......

    Alpharadin for bone metastases
    CYB
    I am sorry for the advanced status of your father. I wonder if his doctor did any bone scan at the time of diagnosis. Probably the cancer was metastasized to bone at the time.
    Unfortunately all you can do now is providing him and your mom comfort. Hopefully the chemo and hormonal works so that he can enjoy prolonged years.
    Pain is generally associated to cancer in bone. Doctors use spot radiation to alleviate the pain but it does not cure. You could inquire with his doctor about any possibility of enter him in a clinical trial of Alpharadin (radium 233). This drug is very effective in the treatment of metastases in bone.
    Here is the link with details. You could make a copy to the doctor.

    Zometa is also a bisphosphonate known to be effective in holding the spread in bone. Just type the name in a net search engine to read details.

    Drugs will cause a series of side effects. You should ask for constant lipids tests and try avoiding any case of anemia. Care with diet is also recommended to avoid any adverse reaction.

    Wishing your family peace of mind.

    VG

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