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Posted 12/20/2012 6:04 AM (GMT 0)
GOOD NEWS....8 weeks post SRT my Psa is <0.1 My T level is 7...as in single digit 7. I did concurrent Firmagon with SRT and am 3 months since last injection. I felt like my T was improving base on slight libido increases , but its only 7. Doesn't seem healthy....good for the PCA, but sucks otherwise.
Anyone else have feedback?
Thx Scott
Posted 12/20/2012 1:20 PM (GMT 0)
I did my 12 months(HT) as of last May and mine T levels are very slow coming around.....but at least I don't have those dreaded flashes anymore!
Posted 12/20/2012 1:38 PM (GMT 0)
My father did 2 - 3 years of lupron, had his last shot a year ago (think it was a 6 month shot), and his testosterone is still 0.
His rad oncologist is happy about this. He had high grade gleason 9 & 10, and the doc feels that keep the testosterone away for as long as possible is a good thing.
Different for everyone based on QOL of course. My dad is in his late 60's, and is doing quite well, playing golf, working, etc. I think he is happy to keep the testosterone at 0 for now as well. Doesnt want to take any risks.
Posted 12/20/2012 2:36 PM (GMT 0)
Sorry to hear about you "T" level.

Mine is 135, but I haven't yet started to prance around singing " Tip-Toe Through the Tulips" . Hope you don't either ....
Posted 12/20/2012 3:15 PM (GMT 0)
Takes time to recover. My last 3 month Lupron shot was in early March. Hot flashes did not end until October. Have noticed some renewed interest in things sexual in recent months. SRT completed in April. What I ideally want is T to rise and PSA to stay undetectable. Tests in a couple of weeks will tell that story.

NewspaperLover
Posted 2/25/2013 2:08 PM (GMT 0)
I'm right around that 9-12 months after my last Lupron shot should have lasted and my T level is still a ways away from my normal level, but getting there. Other than the usual return of one's sexual urges, is there anything else one should expect to change in our body functions that we should be aware of? ie muscle and bone cramps?  
Posted 2/25/2013 2:23 PM (GMT 0)
The most recent study I remember reading about T recovery after ADT followed men who had had two years of adjuvant ADT after surgery. It was the control arm of a chemotherapy study; they were comparing surgery+24mo ADT+chemo to surgery+24mo ADT w/o the chemo. They had some problems with the chemo drug and stopped the study but they continue to follow the control arm (as a sort of uncontrolled study of surgery+ADT). As I recall the study didn't state exactly what they considered "normal" but they did quote a median T recovery time after cessation of ADT as 11.7 months (one week short of a year.) There was no "average" reported because a significant number of men never recovered (89 percent recovered, 11 percent never did).
Posted 2/25/2013 2:34 PM (GMT 0)

PeterDisAbelard said...
The most recent study I remember reading about T recovery after ADT followed men who had had two years of adjuvant ADT after surgery. It was the control arm of a chemotherapy study; they were comparing surgery+24mo ADT+chemo to surgery+24mo ADT w/o the chemo. They had some problems with the chemo drug and stopped the study but they continue to follow the control arm (as a sort of uncontrolled study of surgery+ADT). As I recall the study didn't state exactly what they considered "normal" but they did quote a median T recovery time after cessation of ADT as 11.7 months (one week short of a year.) There was no "average" reported because a significant number of men never recovered (89 percent recovered, 11 percent never did).

Thanks Peter, but I'm not sure I understand this comment. An 89 percent recovery sounds pretty significant to me?

There was no "average" reported because a significant number of men never recovered (89 percent recovered, 11 percent never did)
Posted 2/25/2013 2:53 PM (GMT 0)
... I'm not sure I understand this comment. An 89 percent recovery sounds pretty significant to me?

I could, perhaps, have been clearer. One cannot compute an average if you have missing data. As an example, I have two children. The average age at which they got married is (30+32)/2 = 31 years. The average age at which they became parents themselves is (31+not-yet)/2 = (no result).

Since people like to have an average, if you are averaging a large number of data points and only a very small (loosely speaking, an "insignificant" number of them are missing) then often you just leave them out, compute an average from the data that's left, and put in a footnote. The authors of the study found the 11 percent to represent a "significant" part of their cohort and decided that an average figure would not be that meaningful.
Posted 2/25/2013 3:30 PM (GMT 0)

PeterDisAbelard said...
... I'm not sure I understand this comment. An 89 percent recovery sounds pretty significant to me?

I could, perhaps, have been clearer. One cannot compute an average if you have missing data. As an example, I have two children. The average age at which they got married is (30+32)/2 = 31 years. The average age at which they became parents themselves is (31+not-yet)/2 = (no result).

Since people like to have an average, if you are averaging a large number of data points and only a very small (loosely speaking, an "insignificant" number of them are missing) then often you just leave them out, compute an average from the data that's left, and put in a footnote. The authors of the study found the 11 percent to represent a "significant" part of their cohort and decided that an average figure would not be that meaningful.

I don't mean to be difficult, but one would assume that an average of 89 percent would be considered a fairly significant number to work with. Now if those numbers were reversed and only 11 percent recovered then I would most definitely agree.

On to a more important issue. I really wasn't looking for any study material, just some personal experiences of others, here, who may have gone through the same HT recovery as I have.
Posted 2/25/2013 3:57 PM (GMT 0)
The 89/11 percent thing is a glass half-full/half-empty issue. The study authors mentioned that they didn't compute an average since not all men recovered.

I am not yet half way though my ADT so studies are all I have to cling to. From my point of view those 11 percent are very significant. They haunt me in my dreams.

For details of my recovery, check back with me in three or four years.
Posted 2/25/2013 4:51 PM (GMT 0)

PeterDisAbelard said...
The 89/11 percent thing is a glass half-full/half-empty issue. The study authors mentioned that they didn't compute an average since not all men recovered.

I am not yet half way though my ADT so studies are all I have to cling to. From my point of view those 11 percent are very significant. They haunt me in my dreams.

For details of my recovery, check back with me in three or four years.

The thing I found/find troubling is that no one likes to discuss the SEs from the HT and life after the treatment, which is why I posted my question here. Another point worth mentioning is that even though the treatment duration is specific to how long ADT is in effect, there is another recovery time period(ie 9-12 months) that is rarely mentioned.....just saying.
Posted 2/25/2013 5:04 PM (GMT 0)
Yes, and those 9-12 months don't start when you get your last shot. They start when it is due to wear off. So if you are on 3-month shots you have at least a year after your last jab.
Posted 2/26/2013 11:34 PM (GMT 0)
Peter, do you have a link to the study on the 89/11 per cent thing?
Posted 2/27/2013 4:50 AM (GMT 0)
Mixer,

Sure. It's Adjuvant Androgen Deprivation for High-Risk Prostate Cancer After Radical Prostatectomy: SWOG S9921 Study

It was a monster study. Some of my doctors were participants in it.

The link above is to the full text. Reading it over I find a few piddlin' differences between what it says and what I remembered. It doesn't, for instance, say that the 11 percent never recovered. It says that they hadn't recovered at 18 months (which, apparently was as far as they tracked T recovery.) I remember reading that somewhere. This paper is widely cited. I probably read the "never recovered" part in a paper that cited this one.

It does say this:

It said...
Although 89% of men recovered normal testosterone levels after 18 months, the fact that some men remain hypogonadal after 2 years of adjuvant ADT is an important piece of information in counseling patients.

But I'm sure I have seen a stronger summary elsewhere.
Posted 2/27/2013 6:02 AM (GMT 0)
I will freely discuss HT side effects Foxrun...
No libido, poor endurance, trouble focusing on tasks; compounded by fatigue, worsening depression, anxiety (which I never had at all) , weight gain, muscle loss, skin changes (smooth like a woman) body hair is finer and much less dense, pubic hair is straight, not curly. Psa remains down post SRT and Firmagon.
hope its worth QOL change.
Scott
Posted 2/27/2013 11:34 AM (GMT 0)
Scott, glad to see the PSA remaining down. Sorry to hear the ht is hitting you hard. We've been on a similar path since surgery and I often wonder how things are going with you. I made it a few more months before srt, but am catching up to you quickly. I started ht in Oct. And am 1/2 way through SRT. I haven't found the ht to be toooo bad. Libido is low (takes a stick of dynamite to get things moving but once started is good, so far), fatigue is only hitting me in the evening so I go to bed early, and yeah loosing some body hair now. As for anxiety/depression there are days I'm down but I have no doubt I'd have tthem regardless of the ht.
The daily exercise and trying to have a positive attitude helps.
All the best, Darrell
Posted 2/27/2013 5:48 PM (GMT 0)

prop70 said...
GOOD NEWS....8 weeks post SRT my Psa is <0.1 My T level is 7...as in single digit 7. I did concurrent Firmagon with SRT and am 3 months since last injection. I felt like my T was improving base on slight libido increases , but its only 7. Doesn't seem healthy....good for the PCA, but sucks otherwise.
Anyone else have feedback?
Thx Scott

Hey Scott.....some would consider 7 within the a normal range.....I'm not near(or I was not during my last test) and my Libido is back and I'm back in the game but not 100% yet.....I've been experiencing a lot of joint pain lately and I'm assuming it from the return of my T levels.
Posted 2/27/2013 5:52 PM (GMT 0)

prop70 said...
I will freely discuss HT side effects Foxrun...
No libido, poor endurance, trouble focusing on tasks; compounded by fatigue, worsening depression, anxiety (which I never had at all) , weight gain, muscle loss, skin changes (smooth like a woman) body hair is finer and much less dense, pubic hair is straight, not curly. Psa remains down post SRT and Firmagon.
hope its worth QOL change.
Scott

all of the above except muscle loss(I worked our), skin changes, body hair, no pubic problems. I can't say much about depression, but it's been the bluest winter I've ever had. All behind me now. Where are you now in terms on treatment?
Posted 3/18/2013 12:42 PM (GMT 0)
Hi FoxRun,
I am T3b Prostate Ca patient. RP surgery in Jan 2011, pathology report gleason 8 with tertiary 5, SVI, N0M0, extraprostatic extension, perineural invasion and high grade PIN all present, negative surgical margins.
PSA 3 months post op 0.03. Started HT (Lupron injections) in May 2011, adjuvant IMRT (40 sessions) started in Jan 2012 and ended in March 2012. Last Lupron shot (3 months) in June 2012. Recent PSA in Jan 2013 0.003.
SE's of HT were muscle loss, body hair loss, enlarged breasts. Will have a liposuction next week to fix the gynecomastia. Having sufficient erections for the past 1 month.
Take care,
Traveller58

FoxRun said...

PeterDisAbelard said...
... I'm not sure I understand this comment. An 89 percent recovery sounds pretty significant to me?

I could, perhaps, have been clearer. One cannot compute an average if you have missing data. As an example, I have two children. The average age at which they got married is (30+32)/2 = 31 years. The average age at which they became parents themselves is (31+not-yet)/2 = (no result).

Since people like to have an average, if you are averaging a large number of data points and only a very small (loosely speaking, an "insignificant" number of them are missing) then often you just leave them out, compute an average from the data that's left, and put in a footnote. The authors of the study found the 11 percent to represent a "significant" part of their cohort and decided that an average figure would not be that meaningful.

I don't mean to be difficult, but one would assume that an average of 89 percent would be considered a fairly significant number to work with. Now if those numbers were reversed and only 11 percent recovered then I would most definitely agree.

On to a more important issue. I really wasn't looking for any study material, just some personal experiences of others, here, who may have gone through the same HT recovery as I have.

Posted 3/18/2013 7:31 PM (GMT 0)

Traveller58 said...
Hi FoxRun,
I am T3b Prostate Ca patient. RP surgery in Jan 2011, pathology report gleason 8 with tertiary 5, SVI, N0M0, extraprostatic extension, perineural invasion and high grade PIN all present, negative surgical margins.
PSA 3 months post op 0.03. Started HT (Lupron injections) in May 2011, adjuvant IMRT (40 sessions) started in Jan 2012 and ended in March 2012. Last Lupron shot (3 months) in June 2012. Recent PSA in Jan 2013 0.003.
SE's of HT were muscle loss, body hair loss, enlarged breasts. Will have a liposuction next week to fix the gynecomastia. Having sufficient erections for the past 1 month.
Take care,
Traveller58

FoxRun said...

PeterDisAbelard said...
... I'm not sure I understand this comment. An 89 percent recovery sounds pretty significant to me?

I could, perhaps, have been clearer. One cannot compute an average if you have missing data. As an example, I have two children. The average age at which they got married is (30+32)/2 = 31 years. The average age at which they became parents themselves is (31+not-yet)/2 = (no result).

Since people like to have an average, if you are averaging a large number of data points and only a very small (loosely speaking, an "insignificant" number of them are missing) then often you just leave them out, compute an average from the data that's left, and put in a footnote. The authors of the study found the 11 percent to represent a "significant" part of their cohort and decided that an average figure would not be that meaningful.

I don't mean to be difficult, but one would assume that an average of 89 percent would be considered a fairly significant number to work with. Now if those numbers were reversed and only 11 percent recovered then I would most definitely agree.

On to a more important issue. I really wasn't looking for any study material, just some personal experiences of others, here, who may have gone through the same HT recovery as I have.

ouch....your SEs were more extreme than most.....good to see you're on the way back though.....good luck!
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