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Thread: What I Need to Know About HT

  1. #11
    Greetings,

    I started ADT in April of 2014. I get a Lupron 4mo shot in the arm. August 2014 we added daily Cassodex as my PSA was not falling as quickly as we would of liked.

    A bit of history: I'm one of those PC patients whom had severe UTS before being diagnosed - some days I spent most of my time going back-forth between my desk and the nearest restroom. The urge to empty my bladder was more than often closely followed by the urge to empty my bowels and/or gas or "productive farts" (in which your under/clothing get stained). At times emptying ETHER was so VERY painful that I had to resort to perscription pain killers so I could bear emptying ether bowel or bladder. Some (but not all) nights I spent more time on "the throne" in agony then sleeping. When and if I was able to get back to bed the discomfort in my pelvic region kept me awake. Well enough "whining" about how my late 2013 and early 2014 went - things are much better now.

    When it comes to Cancer (and PC is no exception) no single treatment can offer a 100% "cure" or offer 100% that PC won't return 5, 10, 15 or 20 years later.

    "Your doctor as prescribed this medication for you as in their opinion the benefits outweigh the possible side effects"

    Its not always fun to read the above included with the paperwork with ADT/TAB medication(s).

    I'm of the understanding that ADT/HT is generally used in two different ways: as a short term 'secondary' treatment to some 'primary' treatment and long term (or as long as it is providing a benefit) as a primary treatment for PC that has spread beyond the prostate.

    The concept here is that PC lives off testosterone (and its byproducts) and if your body is "tricked" into producing no testosterone the PC (for a time) will be "starved" and die. The key phrase is "for a time". While ADT/HT/TAB CAN offer the single longest effective treatment option for late stage or advanced PC, (most other treatment options for late stage or advanced PC are generally effective for much shorter durations of time) there is still much debate within the industry as to when to start it and (after numerous studies) predict how long it may be effective for any individual case or patient.

    To "muddly" the decision process even further, some patients have little or no symptoms which effect their "quality of life" while other patients have rather sever symptoms. Some symptoms can be short term (or can be easily regulated with other medications and/or life style changes) while some patients "suffer" for the duration that they are on ADT/HT/TAB.

    Some patients may opt for castration rather than ADT/HT/TAB. While the side effects are mostly the same depending on your insurance coverage (or not) the is a significant cost benefit to castration. However, my DR quoted a number of patent surveys that mentioned that for many men their "quality of life" was better if they kept their "family jewels". Since there is little cost difference to me (Kaiser $35 a shot) and ADT/HT was recommended/covered I've gone along with it for now.

    Given that the treatment MAY adversely effect the patients quality of life AND its duration of effectiveness is of a unknown but known to be limited duration, some doctors may recommend a 'calculated risk' in ether delaying ADT/HT treatment or some have utilized a 'intermittent' treatment protocol in attempts to lessen the adverse effects as well as extend the duration of its usefulness.

    My personal experience with Lupron+Cassodex is somewhat mixed.

    On a positive note, I'm averaging only 2-3 wake up trips to the "throne room" a night which may (or not) include a secondary bowel movement. There are times where I can go 2-3hrs between very urgently required trips to a restroom. I have much less gas+bloating and discomfort than before and as of this writing (1/2015, 9mos later) my PSA is finally < 7ng/ml.

    On the down side, the urgency and deregulation of my bladder+bowel has ruled out any+all plane rides, anything but very short (1/2 hour or less) car trips (unless I'm in my fully self contained RV - which has its own "throne room"), sometimes business meetings which last over 1hr and countless other things. Sometimes I feel I'm "chained" to a toilet. While much of this could be "band aided" by the use of Adult diapers at 55yo (as of this writing) I refuse to resort to that. I carry an extra pair of underwear+pants in my trunk "just in case". <sic>

    "Loss of energy" is often mentioned as a side effect. In my case it often is complete loss of energy or any "drive" at all. While some of the symptom I can attribute to the lack of a solid uninterrupted full nights sleep, I'm rather amazed as to how much energy us men derive from our testosterone. I'm up at 4-5am (depending on timing of restroom trips and pelvic discomfort) and generally start to "run out of steam" at 2pm and often require a 1-2hr nap when I get home or try to retire for the evening at 8-9pm. While the 1st 6mo's was the worse, I'd often spend most of one weekend day in bed I've gotten sort of used to the "new normal" and just try to plan accordingly. (my SO/OH/Partner has been very supportive in this regard)

    The hot flashes were most sever in the 1st 4-6mo's of treatment. While I could easily get over the ego crushing random bursts into full on sweat, the inability to perform critical thinking during those periods was more alarming and more difficult to overcome. My Uro added "Megistril" (brain is spacing on the spelling and exact name at this time of the AM) which I take a few times a week which has helped considerably.

    As far as sex goes, my "junk" has been a fairly to completely useless appendage since this whole ordeal started. The good news here is that I have absolutely NO interest in it what so ever. Anything that may of reliably started the "launch sequence" before has become ether a fleeting moment or uninteresting.

    I used to be fairly "hairy" however the hair on everything but my head is slowly vanishing. (for example I now have rather smooth legs and arms)

    From what I've read and I've been told by my Doctor, the current ADT/HT/TAB is the LEAST intrusive of the possible treatments that may very well be in my future once my current protocol stops being effective in controlling the spread of my PC.

    As others have mentioned ADT/HT/TAB is not a cure for PC but rather a "palliative" treatment intended to "slow down" the spread of PC for a time. Currently (as of this writing) Kaiser will only offer me "salvage radiation" when/if the PC reaches the bones. Since I have very "low volume" PC the new ADT+Chemo treatment does not apply to my case.

    Again on a positive note we are currently hoping that ADT/HT/TAB will provide me with ~3+ (or more) years of progression free survival before resorting to more intrusive protocols. "Quality of Life" currently is much much better on ADT/HT/TAB 1/2015 then it was 1/2014 (pre-treatment).

    Until then, its one-day-at-a-time.
    Last edited by GeorgeS; 01-11-2015 at 06:01 PM.
    - George

    55yo at diagnosis 3/14, PSA=395, 1 week later PSA=322, 98cc prostate at biopsy: 16/16 positive, 15-G9 (4+5), 1-G6(unknown). Stage4: T3BN1M0, "Metastatic to pelvic Lymph node" (bone scan clear) 12/14 DEX=normal, 12/16 DEX=normal

    - Currently on ADT/TAB: Lupron 4mo+Cassodex
    - PSA 03/14=322
    - PSA 06/14=55.88
    - PSA 08/14=37.63
    - PSA 10/14=11.35
    - PSA 12/14=6.78
    - PSA 04/15=2.69
    - PSA 04/16=0.38
    - PSA 04/17=0.19
    - PSA 08/17=0.16 Start Lupron Vacation #1
    - PSA 09/17=0.14
    - PSA 04/18=0.17, T=100
    - 5/18 Restart Lupron
    - 6/18 Start 40 sessions RT (8 weeks)
    - 8/18 End RT.
    - 9/18 Get last scheduled Lupron shot
    - PSA 09/18=0.12 (First post radiation reading)
    - PSA 01/19=0.09
    - PSA 07/19=0.06

  2. #12
    Has there ever been a study done to show the % severity men suffer? ie: What % of men experience low (0-3) side affects on HT, med (4-7), High (8-10) Measured on scale of 0-10.

  3. #13
    Senior User
    Join Date
    Apr 2014
    Posts
    128
    I took the 6 month shot of Eligard June 12th, first week of December my PSA <.05 and my T was -3. my hot flashes have increased from the beginning and worse at night. Tender breasts have lessened, energy has stayed low and mind is fuzzy all the time. as far as my, hair the only hair i have lost is from SRT and has not returned. Radiology Oncologist said it probably won't return until I get off HT. right now I look down and it looks like a sea creature out of its shell. debating whether to continue with HT, would like to stay off and see if SRT worked. supposed to have started back on HT but because my insurance got screwed up I have none till they get it straightened out. from what I have read sometimes later is as good as sooner. so as of now I am on HT vacation and little Elvis has still left the building. I thought i felt bad when I low T, 186 was what i was told when i had my physical before finding the PC. no T is 10 times as bad.I would put myself in the High category of 8-10 per Bravehardon.

  4. #14
    Senior User
    Join Date
    Dec 2014
    Posts
    232
    In my case, first thirty day H T injection was one month ago, second is tomorrow, Tuesday. This one a six month dose. Side effects so far are not horrible but are noticed. Some bloated feeling, restless sleep, night sweats early on, bit of pain initially along with some swelling and bruising at the belly injection site. I also experienced some constipation which I'm finding is unusual and maybe not even a side effect of the H T at all. Really not all that bad at all and I'm a total wuss with a low pain threshold.
    I'm taking a six week break and heading for Key Largo away from this cold. Radiation therapy begins in early March. Nine weeks, forty five sessions. Going to make a supreme effort to get my head straight!
    Age 70, ( now 73 ) consistent low psa till now, dre's are very important as this got way ahead of me without them!
    PSA rise 3.8 to 4.3 ( 10/2014 )
    No family history, one of eleven siblings.
    Biopsy 11/20/14 Gleason 9 with 5+4, T2c score
    9 or 10 of 12 positive 12/04/14
    Cat scan, bone scan, m r i show confined to prostate gland
    Two weeks intensive research....HT and radiation decision made
    First HT 12/16/14 lots of side effects ( Degarelix ) (3/11 pain and bruising at injection site, sleep issues, sweats and maybe some dark thoughts)
    Second HT 1/13 no side effects ( Eligard )( much easier than the 30 day, no pain or bruising, only sweats and sleep issues )
    Cat scan and tattoos 3/6/15 Dry run 3/18 actual radiation on 3/19
    Wrapped up the radiation on 5/22 and met the Memorial Day goal!
    Second six month Eligard on 7/14/15. If follow up PSA test goes well may opt out.
    .01 PSA at 90 day follow up, opted out of h t after a year. Still undetectable after three years.

  5. #15
    I had my annual physical yesterday and was surprised my DR did a DRE. She said everything felt perfect and the examination was important post surgery. I asked her how many PC patients she had and the estimate was 40, with 10 of them on HT. She guesstimated that one would be #2 on a scale of 0-10 (troublesome side affects), two would fall in the #7-#8 range, the remainder would be #3-#4 all based on discussions she has with them. The two in the #7 and #8 range were losing weight through mostly diet but increasing their walking as well, and the side affects are becoming less severe for them. She said many DR's try to candy coat HT but there is nothing sweet about it. But she claims most men successfully deal with it and enjoy life. She feels the secret to maximizing your comfort level is an opted dialogue with your doctor and keep weight down as well as increasing exercise even if you walk around your backyard.
    Obviously this wasn't a scientific study and she was giving me her best guesstimates from memory.
    She is the greatest plus she gave me free samples of Cialis when I asked for them which saved me considerable $.

  6. #16
    Senior User
    Join Date
    Dec 2014
    Posts
    232
    Had the six month Eligard injection on Monday 1/13. Patient portal access account indicates chemotherapy too which I did not expect. However, so far, no side effects of any kind like the thirty day Dirgarilix.
    I'm having trouble caring either way, we are in Key Largo for six weeks, tough to feel bad here, and hey, it's only 80 !
    Age 70, ( now 73 ) consistent low psa till now, dre's are very important as this got way ahead of me without them!
    PSA rise 3.8 to 4.3 ( 10/2014 )
    No family history, one of eleven siblings.
    Biopsy 11/20/14 Gleason 9 with 5+4, T2c score
    9 or 10 of 12 positive 12/04/14
    Cat scan, bone scan, m r i show confined to prostate gland
    Two weeks intensive research....HT and radiation decision made
    First HT 12/16/14 lots of side effects ( Degarelix ) (3/11 pain and bruising at injection site, sleep issues, sweats and maybe some dark thoughts)
    Second HT 1/13 no side effects ( Eligard )( much easier than the 30 day, no pain or bruising, only sweats and sleep issues )
    Cat scan and tattoos 3/6/15 Dry run 3/18 actual radiation on 3/19
    Wrapped up the radiation on 5/22 and met the Memorial Day goal!
    Second six month Eligard on 7/14/15. If follow up PSA test goes well may opt out.
    .01 PSA at 90 day follow up, opted out of h t after a year. Still undetectable after three years.

  7. #17
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,278
    Good luck -- and enjoy the weather, rat! LOL
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  8. #18
    Senior User
    Join Date
    Dec 2014
    Posts
    232
    Been full week since six month H T injection and if there are any side effects, I can't feel them. Unlike the thirty day shot.
    Age 70, ( now 73 ) consistent low psa till now, dre's are very important as this got way ahead of me without them!
    PSA rise 3.8 to 4.3 ( 10/2014 )
    No family history, one of eleven siblings.
    Biopsy 11/20/14 Gleason 9 with 5+4, T2c score
    9 or 10 of 12 positive 12/04/14
    Cat scan, bone scan, m r i show confined to prostate gland
    Two weeks intensive research....HT and radiation decision made
    First HT 12/16/14 lots of side effects ( Degarelix ) (3/11 pain and bruising at injection site, sleep issues, sweats and maybe some dark thoughts)
    Second HT 1/13 no side effects ( Eligard )( much easier than the 30 day, no pain or bruising, only sweats and sleep issues )
    Cat scan and tattoos 3/6/15 Dry run 3/18 actual radiation on 3/19
    Wrapped up the radiation on 5/22 and met the Memorial Day goal!
    Second six month Eligard on 7/14/15. If follow up PSA test goes well may opt out.
    .01 PSA at 90 day follow up, opted out of h t after a year. Still undetectable after three years.

  9. #19
    I have not posted in a while. I have some comments on HT or ADT and a question. I have been on Lupron and Bicalutamide for a little over a year now, beginning almost immediately after my surgery. PSA dropped to zero right away, but I assume that has to do with the HT. My medical oncologist says that the Hormone Therapy can interrupt the reproduction of prostate cells and send them into a "death spiral" (her words). 5 months after surgery, I also had 8 weeks of salvation radiation, which I tolerated well. I've had a LOT of hot flashes, which are annoying and sleep disturbing, but otherwise tolerable. I've lost almost all body hair and gained some belly fat. I know I have lost some muscle mass, since I am more easily fatigued than before and can't do as many pushups or walk up hills as vigorously. And I admit that I have not been as aggressive with my exercise program as I would have liked. Viagra is barely effective, but sex is possible and enjoyable with a VED. I am hoping for some improved erectile function after going off hormones, and also hoping to be able to get back into better shape.

    My question: Has anyone been able to get back into shape after 18 months of HT? Is so, what worked for you? My cardiologist said not to get my hopes up, but I am stubborn, though not as disciplined as I would like. Exercise is fairly easy, but dieting is hard.
    7/2013 PSA 1.73 DRE revealed hard nodule on right side 11/5, 2013 PSA 2.3 ; biopsy DXd adenocarcinoma in 6/12 cores all on right side, Range 20% to 80% Gleason 4+4=8 CT of abdomen and bone scan negative
    daVinci prostatectomy 12/10/13 by Dr. Jonathan Hwang at Washington Hospital Center
    Final pathology report: extra prostatic extensions into the bladder neck, seminal vesicles, and margins on the Anerior, Lateral, Posterior, and Postero-Lateral sides. Final Gleason 5+4=9. 7 lymph nodes dissected were negative for metastatic cancer. Began Bicalutamide 12/21/13. Began Lupron 12/31/13. Radiation planned for May 2014. PSA rose to 0.7 after end of ADT, so began Lupron again in March 2016, bringing PSA back down.

  10. #20
    Regular User
    Join Date
    Jan 2015
    Posts
    22
    Hi guys,
    Been on HT for what will be 3 years in May 12' Lupron, Casodex added in Dec. 13'. My last PSA was 0.19 in Oct. 14'. What is a reasonable expectation of your PSA numbers when you still have a prostate? Correct me if i'm wrong but I don't see how it can be undetectable.
    Thanks..........
    Rob

 

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