My last Tests at treatment's end - Prostate Cancer N...

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My last Tests at treatment's end

thierry profile image
27 Replies

Hello everybody , after IMRT ,38 sessions x 2 Gy on intermediate/ low risk , plus 6 months of ADT ( Bicalutamide , for 30 days , and 2 Lupron Depot 11 , 25 mg ) here are my last tests at the end of my treatment initiated in May 20 . Psa 0,03 µg/l and testosteronemy < 0,1 µg /l . The reversibility would not happen within the six next months . very frustrating , as the normal testosteronemy starts at 1,75 µg / l to 6 or 7 µg/l . I fear it will never climb back to normal . Regards

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thierry
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Tall_Allen profile image
Tall_Allen

It can take up to a year for testosterone to return to normal.

doc1947g profile image
doc1947g in reply to Tall_Allen

My RO told me that the more we react to ADT the longer the recovery time will be.

With my T = <0.2nmol/L or <5.7684ng/dL or <0.057684 µg/L. My rcovery will be longer than 12 months, closer to 18 or 24 months.

Tall_Allen profile image
Tall_Allen in reply to doc1947g

Impossible to predict - different for everyone. The longer you've had ADT, the longer recovery will take. In this study among men who'd been on ADT for 9 months, 93% recovered within a year:

ncbi.nlm.nih.gov/pmc/articl...

doc1947g profile image
doc1947g

Hello, I am 73 y.o. And I had 6 biopsies out of 12 positive G4+3=7 Grade 3 very aggressif and average 80% (70% to 100%) of the 6 cores that were an average of 17 mm.

My PSA was 20.4 pre-treatment. I had 2 injection of Lupron Depot 22.5 mg/12 weeks (from May 31st 2020 + August 24th) and VMAT Hypofractionnated RT of 20 X 3 Gy for 60 Gy on a very wide margin, about most of the pelvic bed (139.37 cc while the prostate is 45.83 cc and my SV are 4.50cc) in all the directions (which cover the whole SV) and half of the blader with 58 Gy from June 8th 2020 to July 07th 2020..

I am risk Intermediate unfavourable.

My last test showed PSA 0.03 µg/L and testosterone <0.2nmol/L or <5.7684ng/dL or <0.057684 µg/L.

RonnyBaby profile image
RonnyBaby in reply to doc1947g

I went on an ADT vacation after roughly 18 months of treatment. It took roughly THAT amount of time for my 'T' to recover to within normal ranges. I was 67 going on 68 at that time. At your age of 73, it is unlikely that you would break the record of speeding back to normal in a matter of months.

I am not predicting a timeline, but you should recognize that you aren't that young anymore and realistic expectations for a man at 73 suggests that IF you recover, you should go back to close to where you were at baseline - assuming you have a number to refer to.

It is a fact, for most of us 'elder gentlemen', that IF you were on continuous ADT for over 2 years, it is possible that you might never recover to that baseline. Some never do - based on the length of time.

It is conceivable that you could be supplemented at some time, with 'T', but some doctors would consider that as risking malpractice. That would be determined on a case by case basis. Of course, I'm not a doctor - I'm simply repeating what I've read and learned, from a first hand perspective. You should consult a medical professional to seek their advice and recommendations.

Wishing you well on your journey.

doc1947g profile image
doc1947g in reply to RonnyBaby

In fact I do have a pre-ADT T level = 15.2 nmol/L or 438.3984 ng/dL.

But rigt now it is <0.2 nmol/L 0r <5.7684 ngdL.

RonnyBaby profile image
RonnyBaby in reply to doc1947g

You responded well to treatment - I went well below 'castration levels' myself - I responded very well to treatment AND I recovered. I got as low as you did.

Seeing as you've been on ADT for ONLY six months, you should recover - give it time.

IF not, then consult a professional, after 6 months - because it will take time for your testicles to 'wake up' after being shut down 'completely'. That's what ADT attempts to do and it works for many men.

MOST men recover - hopefully, you'll be one of them ....

thierry profile image
thierry in reply to RonnyBaby

Thank you Ronny , I hope so , but I must also admit that sometimes I would consider , this problem , no testosterone no libido etc as not as important as it should be . Because I feel fine , doing sport Everyday . Finally , I spent the last 8 months, from diagnosis to today , with no sex during that time , and I often think of these Young priests who had to do their chastity vow . God bless them .

RonnyBaby profile image
RonnyBaby in reply to thierry

I must admit that my 'sex life' took a permanent turn - to - off - I basically lost it all.

I couldn't do 'anything' anymore - went to the ED doctor and found out that the 'Trimix' (kind of the last resort before 'invasive' surgery) wasn't going to work for me.

I have been married for over 30 years and I'm fortunate enough to have a caring and accepting wife who didn't leave me because we couldn't do 'it' anymore. Surgery is off the table for me - NOT going to happen - but that is a choice and an option for those who 'lose it'.

When you consider what could or could not be - still surviving this disease and living again in the most 'normal' way possible, I am truly blessed. Some things we must accept to move forward. What I have lost is not the end of 'everything'. We need to re-discover intimacy in a different way IF you have been one of those men who have lost it - as part of the price we pay for being afflicted in the first place.

PCa has many casualties and many lose their 'sex lives' - as they knew it - forever.

Radiation or ADT or RP or other forms of treatment can cause permanent change.

WE are fortunate if we have a partner who still sees us as who we are - somewhat damaged, but still the loving spouse that spent and built a life together. That becomes more important - the bond that ties - and the love that it still gives. Just think - what would you do if your wife suffered a debilitating disease or injury?

Would you pack it in ? I hope not .... that's what makes the man - the love - not the 'dick'.

j-o-h-n profile image
j-o-h-n in reply to RonnyBaby

"that's what makes the man - the love - not the 'dick'." I don't agree I've met a lot of men that are Dicks (including me)......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/14/2020 5:15 PM DST

RonnyBaby profile image
RonnyBaby in reply to j-o-h-n

You could go AKA d-i-c-k j-o-h-n !

j-o-h-n profile image
j-o-h-n in reply to RonnyBaby

or AKA b-i-g-d-i-c-k -j-o-h-n

(my name is Ronny but you can call me Ron for short even though it isn't)

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 10/15/2020 1:31 PM DST

JuliesHusband profile image
JuliesHusband in reply to RonnyBaby

Check out the book "Slow Sex" by Diana Richardson for the comments on "soft entry". Sounds so erotic I almost wish I could avoid arousal long enough to try it.

j-o-h-n profile image
j-o-h-n in reply to RonnyBaby

I tried slapping mine around but they still wouldn't wake up..... next I'll use the vise method.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/14/2020 5:12 PM DST

doc1947g profile image
doc1947g in reply to RonnyBaby

I guess I am different like everybody but my libido started to go sloly down since my second divorce, 20 years ago. For about 10 years, I would masturbate but less and less as the years went by. 10 years ago the libido was at zero.

So the ADT did not change my libido but brought all the SE: Hot flashes, mood swing and even aggressivity that I never had. Thanks God, only the hot flashes remain.

My new haemato-oncologist checked me yesterday and decided to keep on Active Surveillance so I will se him in 6 months for the follow-up on my Lymphoma.

He was tellin me that my PCa was more dangerous than my Lymphoma.

tsim profile image
tsim

You're saying your last Lupron shot was in May? That would be effective to August so you are only 2-3 months out and around 100 ng would be about normal. I was about the same, 245 at six months, 331 at nine months and now a year and two months out 553, so nothing to be alarmed about.

thierry profile image
thierry in reply to tsim

Hello , Sorry , I had six months Lupron Depot 11,25 mg , two shots , the first on May the 7th and the second and last on July 29th , a month prior I had bicalutamide 50 mg per day to prevent a flare . So my testo is currently < 0,1 µg/l or <0,4 nmol/l , ( there is 1000 µg in a milligram and 1.000.000 ng in a milligram ) ,and PSA 0, 03 µg /l , and I am theorically out of Lupron main effect in two weeks though the testosterone will take time to recover but the receptors will be free of this LH agonist in fifteen days . Best regards

EdinBmore profile image
EdinBmore

For whatever it's worth: ADT (Firmagon, 1 mo; Lupron 9 mos. Last 3 mo injection in May 2019). Devastating reaction to it - far worse than many men experience from what I've read here. I had IMRT and brachy boost in late 2018.

In theory, Lupron should have dissipated by spring of 2020 and my T should have returned to pre-treatment levels. Didn't happen. My T has not returned to pre-treatment levels; it's a roaring 129 at last blood draw. Woo-hoo. Still experience (Oct 2020) occasional hot flashes; fatigue is a constant; wt gain remains; sex drive low; and so on.

But on a brighter note, PSA remains at 0.03. No PSA "bounce"...yet.

So, good luck to you. Hope you recover from all.

EdinBaltimore

j-o-h-n profile image
j-o-h-n

I recently prayed for an erection.... A booming Chinese voice from above said "sure just wait until November 3rd"...

(ok, ok i know it's an old one but it's still funny)......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/14/2020 5:25 PM DST

in reply to j-o-h-n

The election will be no laughing matter. I'll leave it there.

j-o-h-n profile image
j-o-h-n in reply to

You got my vote on that....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/14/2020 6:38 PM DST

doc1947g profile image
doc1947g in reply to j-o-h-n

I love it, it remind me of:

An haitian comme back from his urologist and tell is wife that the doctor told him he was impotant. They cannot pronouce the R so he thought he was "Important" when the doctor told him he was "Impotent".

thierry profile image
thierry in reply to doc1947g

I love your jokes , keep a good sense of humour and an healthy diet

j-o-h-n profile image
j-o-h-n in reply to doc1947g

FunE... can't wait till I tell my wife I'm very "Important"..... (thanks)

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 10/15/2020 1:14 PM DST

doc1947g profile image
doc1947g

Normal level of Testosterone for:

Older adult

Male 300–720 ng/dL 10.41–24.98 nmol/L

Newborn

Male75–400 ng/dL 2.6–13.9 nmol/L

So with <0.2 nmol/L or <5.7684 ng/dL, we are very LOW.

Go, Go, PCa just starve to death.

RonnyBaby profile image
RonnyBaby

You are NOT aware of the reality of permanent damage that can occur due to treatments and your comments aren't accurate - you've made several erroneous assumptions. and should be careful what you spout as the correct way to deal with something you have no idea about. What has worked for you cannot be held up as a shining example for others. You should inform yourself before you pass yourself off as some kind of expert on this topic - sorry but you have some reading to do an a bit of sensitivity towards others would go A LONG WAY. I am withholding what I'd really like to tell you !@%&*%# AND I'm NOT interested in your stupid upcoming response - keep it to yourself !

JuliesHusband profile image
JuliesHusband in reply to RonnyBaby

I am sorry that I have upset you and appreciate that you made me aware that my comments cause harm. I would appreciate more detailed feedback.

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