I had my last Lupron (Eligard) injection in July of last year. My October shot was cancelled (by me) so I guess it would be calculated as follows:
Start counting from November and be very patient for signs that my 'genitals' have feelings again and that I start feeling like a man again (my brain is messed up from 'free floating' - loss of gender reference)
I was on ADT for 16 months and was told that my 'recovery' would take awhile. They weren't kidding ! Note that my PSA is undetectable.
I'm 66 and in fairly reasonable shape, so I am 'expected' to recover, but what numbers and what timeline can I consider (or hope for) ? I've read that it could take one year or more, easily - that is not very specific and fails to mention what returns and what is lost !
My free testosterone level is '20' and the other count is 1.5 (conventionally bound).
The good news is the worst of the hot flashes have stopped (still get 'em, but a lot less severity)
Anyway, is there anyone out there who has withdrawn from ADT and recovered their normal testosterone levels ?
I sure would appreciate some feedback - I haven't found much info on this topic.
THXS !!!
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RonnyBaby
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In have read that testosterone levels will generally reach their maximum in about 1 year after stopping ADT. They also may be lower than they would have been without ever having ADT.
No decent recovery after a year is not good news. 16 mo on ADT really shrinks them down and anatomical damage may never allow full normal recovery. DRs can boost T so you still have other ways to achieve normal levels if you need to. Best of luck. Mine were so small it was like two jelly beans in a sack and drs were telling me ADT forever acct PSA never going undetectable and aggressive, invasive, fast growing , metastasized mess. So off they came. 20 mg Megace 4 times a day takes care of hot flashes.. Best of luck with your natural recover and congrats on reaching undetectable PSA .
I appreciate the feedback offered by persons who care about us 'club members'.
It is great to have such compassionate outreach from strangers who are beginning to feel like a new family.
I am concerned about the low (20) T count after nearly 4 months of initial withdrawal.
At least my 'balls' stopped shrinking - so there is still hope.
I believe the recovery ratio is at least 1 : 1.5 - meaning that 1 month on ADT = 1.5 months of needed recovery. My 16 months on ADT should take at least 1 year to recover.
I'm seeing my RO in about 10 days.
Guess what I'm going to be asking about ....
And I want a consultation with an ED specialist !
Turns out that trying to get some 'additional help', up here in Canada, can be a bit of a challenge.
The 'specialists' are not accepting new patients for all kinds of reasons, unless you started out with them. I need a urologist, but I didn't have surgery - so I was passed up the food chain. And then there are budgets and resource allocation troubles.
I asked my GP for a 'shrink' to help me thru some of the new realities in my life. The answer - there aren't enough shrinks to go around. IF you are lucky, they'll give you a script and you will go away. It might take at least a year IF you can get in line.
Long term psychiatric care is the exception, not the rule. Turns out, he didn't refer me to anyone. WHY ? A waste of time and resources.
I went to a great cancer psychiatrist because I felt like I was on fire with rage . He’s prescribed Kalonapin for two weeks then lexipro for a month...Then and only then , he would talk to me. He said without the drugs the talk wont work . I took that as , first I’m going to drug you up , then you’ll listen to me. I Liken this to a brainwash. Fear from seeing one flew over cookoos nest one too many times ..I’ve never liked pharmaceuticals . My wife refused me to take them . Ripped up the script. I ve gotten much better from that low point 3yrs ago . What you eat can also effect moods as well . With the oversite of my nat dr I started Sam - E . One year ago. Immediately I felt less lethargic in the am and moods and energy improved a lot and muscle joint pain have left. I’m telling you what’s helped me . For this some say I’m a voodoo Dr. I’ve been called worse. I had the best Blue cross when I saw that Dr back then . Now broke and on the cheap route Medicaid. Beggars can’t be choosers. My GP gave me a script a yr ago when I was in a rough spot for a psych med. I tossed that too. He told me he’s allowed to write it for 2weeks only ..After that I’d have to make my case to the drug addition place in Tucson called cope ,..state run.and need to be in regular contact and get my pills from them if they accepted me at all. Nothing more fun than dealing with these state welfare systems and employee that don’t give a rats ass except for their paychecks. Not all people are bad . Reagan shut down all mental health care in the US .Look how that’s turned out for the country. I was told by Patrick of negative connotations of Sam-e on PC . Asked my nat dr. He said he see how people come to that . But because I don’t eat meat , it’s not a negative factor for me. I follow his lead.. If I did eat meat it might not be good. Some have great results with Celebrex and others. So much twisted psychology for us blokes and those that love us. Good luck RonnyBaby ... with time and acceptance things can improve .. hang in there...🌵
I did find 'clomid', so I see that there are some possibilities.
One question that is generated from a T increase / intervention - will this increase my PSA count and (re)activate my castrate sensitive cancer OR am I now a cancer survivor based on my stats ?
I should mention that I had a paid for oncology test that looked at cancer cells that had escaped (and surviving) the prostate into the bloodstream.
There is a protocol from an organization called the RGCC Group, based in Switzerland that
I recently got my results from. It turns out that I am below a cutoff point that indicates an
ongoing / aggressive threat in my body. Apparently, I'm told this is great news.
All this in less than 2 years - it is surreal.
The word 'cure' might still be on the table (conditionally). My RO wants to see me clear and free for 5 years before that word is spoken out loud. My crystal ball is foggy, however.
I'm doing some off label stuff and have looked outside the box for ways to adapt or attack as needed.
I note that some questions about medical cannabis have been asked by a few persons. I
will add something to that in some separate posts. I am licensed to grow and have done a lot of research on that topic. Its called making your own medicine, but it is not the magic bullet that some people claim it to be. It depends on a bunch of variables. Is it part of my success story so far ?
The CUTOFF point was 20 cells / measured unit of blood.
Not sure if that is the standard, but I suspect that it is.
MY count was 6.0 +- 0.3 cells.
An explanation was offered.
The treatment was successful (at least that phase is over) but the
question will always be for how long.
The treatment involved an ADT stack (Eligard (injection every 3 months) + Apalutamide (daily oral) + Casodex (a few weeks to eliminate the spike) plus 81 Gy of Radiation to the prostate plus 1/2 that amount aimed at positive lymph nodes (3 hot spots).
Something escaped the prostate envelope, but distant metastasis has not been
detected.
Right now, I watch 'wait-fully.
That leaves me in limbo, but that is not a bad place to be right now .....
I just want me old self to start to re-emerge, even if it only lasts a year or two.
last Lupron shot was in May 18, August labs had T<7 as it had been throughout the 18 months, October labs had T at 135, PSA <.1, Feb labs had T at 481, alas PSA at .36, meet with my urologist on Wednesday to discuss...I'm 63, diagnosed in 2014, surgery, SRT and then 18 months of ADT, six cycles of taxotere and 25 more radiation treatments after C11 Choline scan found four pelvic lymph nodes...I was definitely feeling better, muscle and joint stiffness and hot flashes subsided.
I see that your PSA count slowly continues to move up on you.
My 'nadir' was undetectable, which, based on my observations,
is a good indication of things to come (like I won't drop dead
from PCa anytime soon).
I read more and more comments and note that there appears to be
disease progression for virtually everyone that was 'unable' to go below
0.1 on the scale.
The timelines vary, but I haven't seen a lot of 'undetectables' go out of
control at rapid rates. I can't explain it, but perhaps it indicates how
advanced the cancer was when treatment was finally started.
I see many examples of surgical 'failures', because too many RP patients end up with a second phase of cancer because something got missed or was left behind.
Hopefully, DaVinci becomes the future standard of care.
I recently saw a video of prostate surgery using the DaVinci.
I was really impressed. IF I had a choice, it would be a no-brainer.
After a very successful surgery in Mar 14, I had BCR in Sep 15 when PSA came in at .2 vice the <.1 for the first 18 months. 90 days after the .2 PSA my labs came in at .3, that's when we started SRT. I finished SRT in May 16, 90 days (August) after my last treatment PSA was .7! We tested a month later and it was 1.0!
When I went to Mayo 4-5 Jan 17 PSA had climbed to 3.8, PSADT and PSAV were <3 months. When I started Lupron and Taxotere on 22 Jan 17 less than three weeks after going to Mayo, PSA wad jumped to 4.8.
The .36 reading in itself is not a panic button but given the past history of my PCa, the rate of change may be of concern. We may do one or two more PSA tests 90 days apart but if the results indicate PSADT and PSAV <3 months, well, decision time I think. I have been "fortunate" with no visceral or bone involvement just the lymph nodes so I may decide to go back on ADT early.
While my PCa has not technically be metastatic, no doubt that if I waited it would be so this study interests me: prostatecancernewstoday.com...
"The mean initial testosterone level measured before RP and ADT administration was 465.3±166.8 ng/dL .., and hypogonadism (testosterone levels in serum <300 ng/dL) was found in 19 (8.6%) of 221 patients before ADT."
During T recovery, 6.8% never got above 50 ng/dL (supra-castration cutoff) & 44.8% never got above 300 ng/dL (hypogonadism cutoff).
"Patients treated with ADT for ≤18 months recovered to {>300 ng/dL} in a mean of 6.8 months .., but patients treated with ADT for >18 months recovered {to >300 ng/dL} in a mean of 9.7 months"
"The absolute recovery rates of {>300 ng/dL} were 47 (21.3%), 82 (37.1%), 105 (47.5%), and 117 (52.9%) at 6, 12, 24, and 36 months after discontinuation of ADT, respectively."
Personally, I don't view the absence of hypogonadism as a good definition of T "recovery", or 300 ng/dL as the cutoff (many use 350 ng/dL), but here is the rationale:
"Although this does not align with previous studies, it may be important to use hypogonadism as a testosterone recovery criterion. Decreases in testosterone are associated with side effects, and some side effects are resolved by testosterone recovery. Therefore, setting criteria for testosterone recovery from hypogonadism may have clinical significance and be helpful for patients."
***
In a 2016 Spanish study [2] where men were on ADT for much longer periods:
"After 18 months of follow-up, all patients had recovered normal LH levels, while 38% of patients still presented castration levels of testosterone (< 50 ng/dl)."
"Mean time for testosterone recovery was 14.5 months ... in patients treated with ADT for less than 60 months compared to 29.3 months ... in patients treated with ADT for more than 60 months"
***
In a Chinese study [3] where men were on ADT for a much shorter period (9 months):
"The percentage of patients who recovered to normal testosterone level increased to 66.3%, 86.3% and 92.6% at 6, 9 and 12 months, respectively."
***
So ADT duration is a very significant factor determining recovery time.
If true T recovery is desirable - as I believe it to be - then T replacement should be considered at ADT cessation. IMO
I recovered from a six month eligard shot a few months after it timed out. You might consider some supplements to enhance circulation down there -- L-arginine, L-acetly-Carnitine. Maybe some low dose daily cialis or viagra (or equivalent) to ward off penile atrophy, which unfortunately may have already occurred. I wasn't well informed of this risk and didn't take these countermeasures so just that six month castration period did affect me.
I have had 3 urologists and 2 MO's during my PCa treatment and penile rehab was never mentioned by any. Too late for me now. I just take a magnifying glass and a pair of tweezers with me when I go to he bathroom to urinate.
I can tell you that vacuum pumps can work, with a bit of practice and patience.
Unfortunately, this is impractical for many people. It is far from perfect, but it can make things better, in the right environment.
In the meantime, I share your frustration and understand how pissed off you can become. The help that could have been offered was basically blown out the window by 'professionals' being uncaring and unprofessional. At the very least, SOMETHING should have been put out there for discussion purposes. Call it 'consultation'.
Then you ask about the price tags paid for 'service' ?
Most of the smooth muscle tissue that engorges with blood is long gone. I've been in this battle for more than 22 years. I was mulling it over last year if I should get a pump but I said to myself F--- it. I'm starting to see the light at the end of the tunnel and it is a train coming right at me. USE IT OR LOSE IT
The answer is not that simple - but I would suggest this approach - you can go to an 'adult' shop and try out a pump to see how it feels and to see if it might work 4 you.
You will discover that the 'toys' are NOT the same as the higher quality and designed 'medical TYPE ' devices.
Yet, the toys are an indicator of possible / probable success. The toys have all types of price ranges - I'd suggest a modest investment (avoid the cheapest and the most expensive) and that 'unit' become the trainer or experimental one.
SIZE will matter, but the dimension that matters most is the girth. Most typical sizes run between 2 - 2.5 " (wide). Unless you are well above average, tjhe length of the cyinder should be adequate. Most run between 9 - 10 ".
They will come with a membrane / seal that allows the vacuum to hold. Water based lubricants are the best choice.
Assuming you find one that works for you, you can now move on to a 'medical type' unit.
The difference and this is what sets them apart - you will use 'tension rings' with the medi-unit. The tension rings MUST lock in the blood to maintain a firm enough erection for penetration. If there is blood leakage, then you will go soft(er) and need to do something else. A partial erection can still be good for stuff - so it doesn't always need to be penetration.
In the USA, you can get some financial assistance (that's what I've read about the insurance thing). Expect to pay MORE for the better quality unit.
Some names to consider 'Encore (my choice), Pos-T-Vac, Vacurect etc ...
You should Google and do some reading. You need to understand the tension systems, the mounting cones and unloaders. Then there is battery and manual powered (or both). The tension rings are the biggest piece of the puzzle. You will probably be surprised at the size of the ring (restriction). Smaller, in most cases, end up being the ones that work best. I am using stats that equate to most 'normal size' penises. In most cases, the supersized stuff will be too big and won't work at all.
The so called rings sold in the adult stores are NOT the ones that will work for the medical application. They are too loose. I am assuming that you have a fairly bad case of ED and you need a tension ring system to get it to work properly.
Hopefully, you can consult a Urologist or Sex Therapist who could help you out.
There will be some trial and error, so be patient and get ready for a new (and hopefully positive) experience.
Good luck - I hope you can find a new way to share some intimacy with a caring and patient partner. You will probably have a learning curve and a failure or two before you get it right, but it should work for most men. Hopefully, that includes you .....
After 19 months of Zolodex and Lupron I discontinued it, that was 8 months ago my hot flashes have disappeared within the first two months my Testosterone has gone up from 0 to 7.1 with that my blood count is almost Normal so much greater energy levels. My sex drive is returning and the ability to have sex. I under went bracheytherpy 17 months ago and the side effects have largely disappeared the Radiation will wear off in 6 months! But help help achieve these good results I work out in the Gym and at the Pool daily and watch my diet and keep stress out of my life at any cost! In the early stage of my Cancer before I actively started Treatment I was sued by the cibc bank for Credit card debt! my psa reading took a huge jump! As well as a diet for good health, fruits vegetables etc.....! I hope this helps!
Thanks for the comic relief. We can always laugh at ourselves a little bit .....
It can't hurt !
After a year off of Lupron, T did not come back. MO tried to jump start testosterone production with low dose - 4 mg of Androgen patches twice a week..... that was in January 2011. End result, to maintain T between the 350-750 range, 4 mg of Androgel, twice a week. If you are lucky, it should come back. After seven years, my T never did.
Sorry to hear about the permanent loss. That's the sad part of stats. We are talking about real people and those that are effected, like some innocent colatoral damage.
The 8 or 20 or 30 percent can be easily dismissed because 70 % got thru it .....
After 2 years of ADT i stopped it. Man, i was starting to feel good. Started getting acne. The T was on the march back. Well my 6 months check up my psa went from .01 to 4. Well needless to say i have been on ADT ever since. 6 years.
I realized a while ago that recovery is like the forest that you can’t see for the trees!!! It’s soooooo slow! I started keeping a log of how I feel and sure as shit.... I’m coming out !!! 13mo’s from last 3mo injection and first sign of T @ 103. We’ll see!!! Best of continued luck! Jc
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