An update on my ADT vacation that a few were following:
Recap:
DX Dec 2018 when PSA was 6.2 - Biopsy GL 9
RP April 2018 - Post surgery PSA 2.2
Aug 18 - 1st 6 month Lupron injection
Sep 18 - PSA 0.87
Nov 18 - PSA 0.53
Jan 19 - PSA 0.33
Jan 19 added Zytiga
Jan 19 - 2nd 6 month injection of Lupron
Apr 19- PSA 0.000
Aug 19 - PSA 0.000 - I passed on the 3rd 6 month Lupron injection
Dec 19 - PSA 0.000 - Stopped Zytiga
April 20 - PSA 0.000
After 15 months since last 6 month Lupron injection and 4 months since last Zytiga pill, I'm so fortunate to still be a 0.000. So 3 more months of vacation. Hopefully 6. Doctor already has a plan when PSA starts to rise, and that is Firmagon. I know it won't last forever, but going to ride this train as long as I can. I haven't felt this good since before surgery. Lost the 20 pounds I gained on top of that.
Thanks to those on here whom I learned that this was even possible, as my Doctor would have never suggested it I don't believe.
Ron
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Ron53
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Wow, I'm at PSA <0.02, diagnosed 09/18 (PSA 1000+), hit undetectable around 07/19 and holding to date. My doc said vacation would be extremely risky, another 2 years before talking about it.
So, great for you, always a rule of life, you never know how great it was, until you loose it!
That would be great, but just hoping to make it 6 more months and that would give me a year with no Drugs. I will be better prepared for the next round.
IMO ...you are doing the right thing..Ron. By doing Intermittent ADT, you are causing androgen sensitive cancer cells to remain Androgen sensitive for a longer time.. So as long as your PSA remains undetectable (0.2 or less)..you should be fine without ADT.
Once PSA starts going higher clearly then you can always get back on ADT train.
Also, during OFF period, build your body back and strenghthen your Immune system to thwart body destruction by your next ADT round.
So right. I’ve lost the weight I gained and added some light, but a lot, of weight training. I’ll be ready next time. They never seem to tell you all the side effects until they occur. I’ll have to read up on strengthening my immune system.
I was also a G9 with a PSA > 300. + node positive - Dx was spring of 2017.
I was treated with radiation and ADT. Last shot was July of 2018 - so it was still effective thru Oct of 2018.
Today, I have fully withdrawn from my 16 months of ADT (Lupron) while my 'T' hs recovered to within the low/normal range.
My PSA was at 0.60 in Feb of this year, so it is anticipated that it will go up to 1.0 when I get re-tested in May.
What's there point?
The point is this - the recovery time - from undetectable to 'normal' range took close to 1 year before the numbers really started to rise. The withdrawal cycle is nearly a one to one ratio - 1 month on = 1 month to withdraw - not scientific, but the nummbers are close to typical published data.
Am I worried about rising too high ? YES, but I need to go there before making another major decision about treatment (options).
IF I''m one of the fortunate ones, I might not need further treatment - I can always hope and dream ....
About the immune system - mine crashed badly due to anemia, which is a common side effect.
Solution ?
I used supplements to rebuild my immune system - I used medicinal mushrooms combined with some DEEP immune tonics and some herbals to get back to 'normal'.
Today, my immune system is strong (I did regular blood panels at the same time as I was tested for PSA and 'T'.
My muscle mass has returned, my moods improved etc etc etc ....
In closing, take your holiday and use it to recover to as near normal as you once felt - it can be done in incremental steps. Physically, there is a nice payoff, even if it only lasts a few months - keep cycling as long as possible - I have heard of men who survived for relatively long periods of time with elevated PSA readings - while tolerating the minimal side effects (that were less prominent or relatively minor in comparison).
Of course, you should be guided by a medical professional, seeing as the benefits might be worth the temporary leave of absence.
We wish you well - keep us posted - the outcome is encouraging.
I’m curious too. My husbands testosterone is 79 on a lupron vacation since 6/19.
A doctor on Monday told us he thinks Charlies hormone resistant now? I’ve tried to call him back. I think he is mistaken my husband is on hormones and assumed he was still on lupron but it’s bothering me. His nurse has not called back to clarify if there was a misunderstanding.
I’ve been wondering if avodart might lower his Testosterone. Does anyone know if that might work?
He went off lupron 6/19. He grew a metastasis very quickly on T6 as PSA went from undetectable on lupron to a PSA of 1.3 in late July, 19. His doctor thought SBRT to the metastasis may lead to remission. PSA made it down to .22. Now he’s at 2.2 with a small amount on T5 and T7. Many doctors are in agreement to play “wack a mole” and keep him off hormones. The hope is SBRT will add years to his life pushing drugs down the road.
SBRT to a tiny uptake to Charlies hip was cured. T6 looks great on a PET after 9 months. Unfortunately, T5 and T7 show a small uptake and will be treated late April. Mayo put us on hold in March for the virus. PSA is higher this time but with lesions much, much smaller than 8 months ago when 1.3 PSA showed a huge lesion on T6 and spot in the hip.
Charlies Total Testosterone 10/17 (prior to ever having lupron) was 89. Now 10 months after lupron has worn off he is at 79. He has had very low Testosterone for over 15 years but I can vouch none of the sexual symptoms you would expect.
There’s got to be a link to his aggressive PC and his historically low testosterone.
Ron...please provide your T levels after stopping ADT...lets see the pattern of T. I am OFF ADT for 2 1/2 months and my T still keeps going down. Last reading yesterday showed Free T = 0.0007 nmol/L (0.2 pg/ml)
As I told Terry I was so excited about the 0 I forgot to ask. I’ll check to see if they will send. But I think it’s coming back as the hair in my stomach and legs is beginning to show fuzz and either my libido is returning or it’s just the high from the 0 PSA from the last 2 visits.
PSA can only be produced by (1) normal prostate cells and (2) prostate cancer cells. There is no other cell in the body capable of producing PSA.
In your case first source is gone because you had radical prostectomy..(no prostate..no PSA) The second source of PSA is prostate cancer cells...who all might have died ..so no PSA is coming from them.
It seems you will probably have a very long PSA free period...hopefully many years.
Great news Ron. I go for my second 3 month Lupron shot in a couple of weeks. MO stated that he wants me to go for 2 years on Lupron. Something to consider.
It's been 2 years since your RP. Maybe you should consider an updated scan. This should tell you how well you are doing. I had an axumin PET scan about a year ago, then had an updated one 2 weeks ago. The comparison was amazing, as it showed tremendous progress in my body as a result of my treatments. Little evidence of cancer.
That’s been a debate. On here I have heard any where from 0.2 to 10.0. Doctor is pretty much letting me make the call, however if I make it one year, I’ve pretty much decided to go back on with anything above 0.02. Then I’ll take the ADT for another year and then hopefully back on vacation.
It appears that this isn't an exact science. In addition to the raw number there is the doubling time. On top of all that are the life expectancy of the patient and the QoL issues that vary so greatly from man to man.
Having said that, the term "BCR" is associated with a PSA of 0.2, so I can't see a rationale for restarting with anything under that.
There are studies which used PSA 10 ng/ml as the RE-starting of lupron point. I do not like these studies as they were designed to make Intermittent ADT fail to preserve their Standard Of Care protocol.
Why should one wait for PSA to go that high...it is inviting troubl as mets might have formed already. The reasonable and sensible set point ....IMO should not be a maximum 2.0 if your prostate is untouched and intact.
In case of absent prostate ,it gets tricky to get the right upper set point of PSA because the entire PSA is probably coming from a group of cancer cells. (and not from normal prostate)
I do not know what should be risk free upper set point of PSA in men whose prostate has been removed or damaged by some other treatment.
Hope someone knowledgeable can give us that answer.
I had my prostate removed and following that Lupron(and later on, Zytiga was added- withdrawn- and, then added back again). My first vacation was 20 months after the surgery and Lupron treatment, although that 20 month period start date was from when I received a 3 month Lupron . My 2nd vacation was approximately 12 months after getting a 3 month Lupron shot and my final vacation was about 6 months after getting a 3 month shot. My doc let my PSA hit 5.0 on my last vacation, which I thought was a bit too much. But- who really knows. I am now approaching 8 years of treatment and my last of the 3 vacations was about 4 years ago. No more vacations are in the cards for me as my new doc is opposed to them and my PSA became measurable about 6 months ago and was at .12 when measured the last time. while receiving both Lupron and Zytiga. PSA may leveled off the last time it was measured and I am hoping the plateau continues.
Sounds a bit like the path I’m on. However after listening at others on here I will start back when it gets to 0.2. My doctor is not that favorable about my plan intermit plan either, but he's hopeful for me.
I haven't had this discussion with my MO. Got my second shot of (3) month Lupron and the Zytiga is on order. The MO stated a 2 year term is recommended. I need more reasons why 2 years. Then sit and watch PSA I presume.
I recommend discussing what your options are if your PSA stays low & scabs are good. Just ended my 1 year of lupron 3 more nth shots. Oncologist said being my scans showed improvement & my PSA is .40, I can try going without Lupron until my PSA starts to rise. Lupron has hit me the hardest these past few months, besides no energy, gaining weight, hot flashes, & emotional ups & downs, I feel my brain has really slowed down. Cannot think sharply, I’m 63 but feel liked I’ve aged 10 years this past year due to chemotherapy & Lupron. Walking & exercise does help so Im hoping to get back to doing more & become my old self even if it’s only for a short span. I’m grateful to take a holiday. Good luck to you
Great to hear Ron. Fantastic to hear how well it’s going. I also had post-RP PSA and am just two weeks shy of finishing 18 months of Zytiga (EBRT too). Can’t wait to begin the “vacation”, and hoping that it’s a long one for both of us.
Yes. I stared Lupron 18 months ago with the Zytiga. PSA went from post RALP surgery 4 to <.05 within days of starting radiation + ADT + Zytiga. I’ve lost muscle tone and am fatigued, but have worked through all thing and continue to surf several days a week. Winding down the meds over this month and then looking forward to better times.
Yes, I had two 6 month shots. I was last due one Aug 2019, I passed on the one and stopped Zytiga 4 months later. Now been 4 months since anything. Don't how long it will last, but am going to stay on vacation my PSA starts to rise by any measurable amount. Everything is back to normal except the most important one...sex..hoping that ability will return as well.
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