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    Old 06-01-2020, 10:31 AM   #1
    IceStationZebra
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    Testosterone?

    I still am working 12 hour days guys so forgive me for my lack of a signature.

    Dec 2019 RP. All G6 and one small 3mm positive margin that was so small the doctor thought it would never be a problem.

    Two tests in I tested <.1 on the first test (standard psa) at one month and <.006 (ultrasensitive) at three/four months. Given this my doctor felt I was good to start testosterone again and sent in my script.

    Well I just received a call back and my insurance will not cover testosterone until 2 years after I've been cancer free.

    So who is right? I know this is a controversial subject but I am really wasting away without any testosterone. No mental or physical energy, no erections (that could still be the surgery). I squatted down yesterday just to plug in an electrical cord and thought the tendons in my knees were going to rip away from the bone. Extremely painful.

    So I would like to go on the shots (probably the most cost effective without insurance coverage) unless someone convinces me it is dangerous.

    All opinions welcomed. Too early? Good to go? What has your doctor's experience been?

    Thank you!

     
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    Old 06-02-2020, 01:35 AM   #2
    HighlanderCFH
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    Re: Testosterone?

    With a confirmed case of G6 and a highly favorable prognosis, maybe your insurance company would make allowances in view of your successful surgery.

     
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    Old 06-02-2020, 05:34 AM   #3
    IADT3since2000
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    Re: Testosterone?

    Hi IceStationZebra,

    Many of us would have second thoughts about initiating testosterone replacement therapy (TRT) after prostate cancer, including me. But that is often based on emotion rather than facts established by research, and I've heard experts state there is a real place for TRT.

    You can get the same research-based facts available to doctors if you go to www.pubmed.gov, a US government site under the auspices of the NIH and the National Library of Medicine. I just did a search for - testosterone replacement therapy - and got a list of 4,420 articles, with most published since the late 1990s, especially around the middle of this decade, with a peak of 297 studies published in 2015. If you click on the blue hypertext of any article you can see a brief description that covers key points, the "abstract", if there is one, which is typical.

    I applied the filter for abstracts and "narrowed" the list to 3,905. This indicates very heavy research interest. If you apply the filter for "free full text," which means a free link to a complete copy of the paper, you get a list of 1,019 results. If you add the words "AND prostatectomy", so the full search using - testosterone replacement therapy AND prostatectomy , you get a list of 12 articles. The first one lists Dr. Khera as the senior author; he spoke at one of the most recent national conferences on prostate cancer for patients, sponsored by the Prostate Cancer Research Institute (senior doctor Mark Scholz, lead author of "The Key to Prostate Cancer,") that are held every September in LA. If you relax that search by removing the filter for "free full text", you expand the list to 48 papers with abstracts.

    If you take a look at this body of research, I'm sure a lot of us would be interested in what you learn.

    PCRI has a 2018 article on TRT by one of the physicians at Dr. Scholz's practice at https://pcri.org/insights-blog/2018/7/25/is-testosterone-the-new-therapy-for-prostate-cancer?rq=jeffrey .

    Hope this helps.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

    Last edited by IADT3since2000; 06-02-2020 at 05:36 AM. Reason: Inserted )

     
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    Old 06-02-2020, 11:04 AM   #4
    IceStationZebra
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    Re: Testosterone?

    Quote:
    Originally Posted by HighlanderCFH View Post
    With a confirmed case of G6 and a highly favorable prognosis, maybe your insurance company would make allowances in view of your successful surgery.
    I will talk to them since I work for them. Maybe there can be an override.

    Otherwise it is compounding pharmacy or shots for a couple years if i go that way.

    I'm not pushing for it but surely wouldn't decline it provided ot is safe.

     
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    Old 06-02-2020, 11:14 AM   #5
    IceStationZebra
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    Re: Testosterone?

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi IceStationZebra,

    Many of us would have second thoughts about initiating testosterone replacement therapy (TRT) after prostate cancer, including me. But that is often based on emotion rather than facts established by research, and I've heard experts state there is a real place for TRT.

    You can get the same research-based facts available to doctors if you go to www.pubmed.gov, a US government site under the auspices of the NIH and the National Library of Medicine. I just did a search for - testosterone replacement therapy - and got a list of 4,420 articles, with most published since the late 1990s, especially around the middle of this decade, with a peak of 297 studies published in 2015. If you click on the blue hypertext of any article you can see a brief description that covers key points, the "abstract", if there is one, which is typical.

    I applied the filter for abstracts and "narrowed" the list to 3,905. This indicates very heavy research interest. If you apply the filter for "free full text," which means a free link to a complete copy of the paper, you get a list of 1,019 results. If you add the words "AND prostatectomy", so the full search using - testosterone replacement therapy AND prostatectomy , you get a list of 12 articles. The first one lists Dr. Khera as the senior author; he spoke at one of the most recent national conferences on prostate cancer for patients, sponsored by the Prostate Cancer Research Institute (senior doctor Mark Scholz, lead author of "The Key to Prostate Cancer,") that are held every September in LA. If you relax that search by removing the filter for "free full text", you expand the list to 48 papers with abstracts.

    If you take a look at this body of research, I'm sure a lot of us would be interested in what you learn.

    PCRI has a 2018 article on TRT by one of the physicians at Dr. Scholz's practice at https://pcri.org/insights-blog/2018/7/25/is-testosterone-the-new-therapy-for-prostate-cancer?rq=jeffrey .

    Hope this helps.

    Ö.Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.
    Thanks I will look.

    I read several studies that backed my doc up that I'm a safe candidate for TRT. One Harvard and one from John's Hopkins where two doc who disagreed on the topic but both said for low risk like me it is safe. The guy who wasn't for it said no for high risk guys.

    I'm just dying without TRT it isn't about sex at all. In fact, I've been using an old androgel script since the doc said I was good to go and no change in the erection department. That will take more time. What is killing me is the lack of energy, muscles, drive or ability to do any work. I simply knelt down on the ground on my knee and reached into my pond to pull out the motor and replace it and I hurt for 3 days like I ran a marathon. I want to replace the carpet and hardwood on my floors with laminate...the old me would have it on order and be doing it. Low t me, I get tired at just the thought of getting down on my knees and back up once, let alone hundreds of times. Think about hiring your 85 year old dad to replace your carpet, that is low t me.

    My script of androgel expired october of last year so I don't know if it is still fully effective but I have some drive back and am working on muscle mass. I don't sleep as much during the day. So time will tell.

    Low t sucks as bad as prostate cancer in the quality of life. Pca took my sec life and low t took everything else.

     
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    Old 06-02-2020, 01:04 PM   #6
    Southsider170
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    Re: Testosterone?

    Quote:
    Originally Posted by IceStationZebra View Post
    I still am working 12 hour days guys so forgive me for my lack of a signature.

    Dec 2019 RP. All G6 and one small 3mm positive margin that was so small the doctor thought it would never be a problem.

    Two tests in I tested <.1 on the first test (standard psa) at one month and <.006 (ultrasensitive) at three/four months. Given this my doctor felt I was good to start testosterone again and sent in my script.

    Well I just received a call back and my insurance will not cover testosterone until 2 years after I've been cancer free.

    So who is right? I know this is a controversial subject but I am really wasting away without any testosterone. No mental or physical energy, no erections (that could still be the surgery). I squatted down yesterday just to plug in an electrical cord and thought the tendons in my knees were going to rip away from the bone. Extremely painful.

    So I would like to go on the shots (probably the most cost effective without insurance coverage) unless someone convinces me it is dangerous.

    All opinions welcomed. Too early? Good to go? What has your doctor's experience been?

    Thank you!

    Since your physician doesn't think its that risky in your case, and was willing to write the scrip for the T, you should go for it.

    Even though your testosterone shots were flagged, the fact they were prescribed by a legit doctor, its certainly worth appealing if the benefit is worth a lot of money.

     
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    Old 06-02-2020, 02:50 PM   #7
    Eonore
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    Re: Testosterone?

    As someone whose testosterone is coming back very slowing after hormone therapy, I am very interested in this topic. If you donít mind my asking, what are your testosterone numbers?

    Eric

     
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    Old 06-02-2020, 02:57 PM   #8
    IceStationZebra
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    Re: Testosterone?

    Quote:
    Originally Posted by Eonore View Post
    As someone whose testosterone is coming back very slowing after hormone therapy, I am very interested in this topic. If you donít mind my asking, what are your testosterone numbers?

    Eric
    Eric,

    Sure. The last check I remember I want to say mid 200's but that was just total and not free

    When on the testosterone we only had me into the high 500's so middle of the road with the gels.

    I have no idea what my numbers are now but my wife commented on my legs. I walk a lot so I used to have really strong well defined legs. She noticed the other day that she said my legs looked like a bike rider's (tour de france type not harleys). Very thin and my thighs are what the size of my calves used to be. She said if I kept going I was going to look like a WWII prisoner.

    I've always been a capable person, so having to hire people to do stuff for me because I cannot do it is hard to deal with.

     
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    Old 06-02-2020, 03:48 PM   #9
    Eonore
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    Re: Testosterone?

    Thank you Ice. As of February, my total was 57.

    Eric

     
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    Old 06-02-2020, 04:13 PM   #10
    IceStationZebra
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    Re: Testosterone?

    Quote:
    Originally Posted by Eonore View Post
    Thank you Ice. As of February, my total was 57.

    Eric
    Wow. You must feel like crap!

     
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    Old 06-02-2020, 04:41 PM   #11
    Eonore
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    Re: Testosterone?

    Quote:
    Originally Posted by IceStationZebra View Post
    Wow. You must feel like crap!
    It makes things tough. My main complaint is fatigue. The other problem is that I have lost muscle and I canít seem to get it back. I am hoping it will come up over time.

    Eric

     
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    Old 06-02-2020, 05:28 PM   #12
    IceStationZebra
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    Re: Testosterone?

    Quote:
    Originally Posted by Eonore View Post
    It makes things tough. My main complaint is fatigue. The other problem is that I have lost muscle and I canít seem to get it back. I am hoping it will come up over time.

    Eric
    It is amazing how slowly you lose abilities without really knowing it. Cognitive, desire, drive. I can really tell a difference in my thinking and aggressiveness. I've been playing around with some stocks and whereas I would normally get about what to do, I went for it on the juice. My clarity at work is remarkably different. I'm one press release away from being the wolf of wall street....minus the jail.

     
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    Old 06-20-2020, 06:00 PM   #13
    MK1965
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    Re: Testosterone?

    Ask your doc for Clomiphene? Clomiphene works via pituitary axis to send signal to your testicles to produce own testosterone. Endogene testosterone is way less dangerous for prostate Ca survivors then exogenous. Clomiphene works very good for me. After RP, at 18 months my total testosterone was 217 and all other values were also low. Now, 2 1/2 years on Clomiphene, my testosterone is 702. I feel significantly better, with more energy, more stamina, higher endurance and also good sleep.
    Give it a try. Might be worthly.
    MK

     
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