ADT Break: I'm not tolerating Lupron... - Advanced Prostate...

Advanced Prostate Cancer

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ADT Break

5_plus_4 profile image
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I'm not tolerating Lupron/Eligard very well at all. The fatigue is debilitating sometimes. Talked to my MO yesterday, told him I want to take at least one shot off the calendar (I'm on the 3 month plan) to see what happens. He agreed but said my high grade disease may take off like a rocket/or maybe not. He said PSA of 1.0 would be the trigger to resume ADT, I'm currently undetectable.

Has anyone else had a huge PSA increase after skipping one or maybe two shots?

Thanks

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22 Replies
DarkEnergy profile image
DarkEnergy

I'm in the same situation as you, certainly like to hear others that took an ADT break. But, you know, this is an experiment of one, the consensus here, that ADT is holding down progression, so playing Russian Roulette.

This is a personal decision, no rules playing with biology, understand the risks - all the best...

Timfc profile image
Timfc

After 3 years on ADT, undetectable since the start, my last injection was in April 2020. I stopped, with my doctor's ok, for the same reason: weakness and fatigue. It has been 8 months off ADT and there has not been much change. Next PSA is mid January. I have known that recovery from the side effects is slow, but now I know first hand. My exercise routine seems to be just a little easier as time passes. I will jump back into ADT if and when PSA returns, and I am anxious to watch the responses to this post.

noahware profile image
noahware

Part of the ADT problems result not just from low T, but from low estrogen. Aside from just stopping treatment, there are (at least) three other options that might help address this:

1) continue Lupron but add low-dose estrogen (transdermal)

2) discontinue Lupron, (temporarily?) switch to ADT via high-dose estrogen (transdermal)

3) discontinue Lupron, (temporarily?) switch to antiandrogen monotherapy (i.e., Casodex 150mg)

Realize, too, that PSA of 1.0 is an arbitrary trigger number. Probably the rate of increase is more important, and of course scans tell a better story than PSA alone.

Tall_Allen profile image
Tall_Allen

Unfortunately, a short vacation often doesn't provide the relief you are looking for. It can take 6 months to a year for your testosterone to return to normal. Meanwhile, your cancer is increasing.

You may want to try a different approach being explored in a clinical trial. They are using some very powerful hormonal agents for a year. It is hoped that it will reduce the cancer load so much that a longer vacation is possible. My friend is on the trial. A year since he took the drugs, his PSA remains undetectable even though his testosterone has returned to normal. Here's the trial:

clinicaltrials.gov/ct2/show...

(Your rectal lesion may be categorized as overgrowth from the prostate (Stage T4) rather than a metastasis (Stage M1c) for purposes of the trial. Otherwise, your insurance may be convinced to cover the drugs outside of the trial.)

LearnAll profile image
LearnAll

youtube.com/watch?v=_et0sSG...

DarkEnergy profile image
DarkEnergy

Does this indication really matter? PSA and other gauges are man made, we're still oblivious to biology which is not mechanical physics. We can calculate if the materials can sustain a structure, like buildings, bridges, airplanes, etc., but cancer?

5_plus_4 profile image
5_plus_4

After RP I had adverse pathological finds: ECE, SVI bilaterally, PNI+, LVI+ , PSM, T3bN0. Then did 37 EBRT. Recurrence 18 months after RP, 12 months after EBRT, PSADT 1.6

LearnAll profile image
LearnAll

Gleason grade 7 or less is certainly favorable for ADT vacation. BUT, Initial PSA is not important...it is the lowest PSA achieved which matters.Newer studies (last 5-7 yrs) do not consider pre treatment PSA as a prognostic marker. We see on this forum, people who started with PSA 5000 and above and still alive and kicking after many years, Aggressive variants, generally have low PSA (less than 10) mostly.

RonnyBaby profile image
RonnyBaby

The 'withdrawal' time from Lupron / ADT is roughly the same amount of time you have been on it - within limits. My comment isn't 'totally accurate (my own admission) - I'll call it a 'rule of thumb'. However, there is a ceiling on my numbers. The 'max' withdrawal / recovery time is less than 12 months.

I got this information from THESE forums - and the 'prediction' was pretty close. I was ON ADT for 16 months and went on 'vacation' (OFF ADT). It took nearly a year for the 'T' to come back and longer before my PSA started to rise (about 18 months).

I was a G9 at Dx with a PSA over 300. I was in my late 60s at the time and in reasonable health. I also had no 'mets'. I should also point out that my NADIR was <0.002 and stayed there for about 1 year before I 'vacationed'.

There NEEDS to be a good reason why you would quit / vacation on ADT. One MIGHT be to determine if you still have cancer - a verification of the success of the primary treatment.

THe second reason MIGHT be experimentation - a quality of life issue - assuming you remain castrate sensitive AND your PSA isn't running away at an alarming rate.

I had a miserable time with the side effects - I can relate 100% - BUT if you really need ADT to hold back the progression of the disease, you are in a difficult situation because stopping ADT could be a big mistake.

In my case, my vacation is coming to and end - it will be about 3 years that I was vacationing - I'm awaiting a PSMA/PET scan which will be done in the next few months (I'm on a waiting list in a trial). I've had a BCR and we estimate my PSA to be around '5.5 - 6'. My last 'known' reading from a LAB, about 6 weeks ago was 4.8 - so we are 'projecting' a bit) - a rough guess)

It took 3 years to get there. Why 3 years? No definitive answer - probably the high risk and stats - about 50% of 'my type of PCa' with have a BCR. We thought I was in a runaway situation for awhile ( 2 BIG jumps) but then the NEXT 2 jumps were a lot less than we had expected. Kinda strange - not sure why it 'slowed down'.

My most recent scans (bone / CT / MRI) are ALL clear - so it is assumed that there is a small 'hot spot' somewhere that is the culprit. I was HIGH risk (still am) and quitting ADT was not recommended.

So there is a 'comparison' if you will. Don't make a blind decision without some careful thought and objective.

ONE thing I can state - it would be 'unusual' for the PSA to climb rapidly in a few weeks IF you had been on ADT for a few cycles. IF there was that climb and rate, then 'vacationing' is off the table for you.

Wishing you well on your journey .....

Zzzgott profile image
Zzzgott

When I complained about side effects to my Dr. He suggested half dose of Xtandi(that seems to tolerable at this time) but the most interesting thing he mentioned was switching off label to Darolutamide. Daro no brain fog no cancer resistance to other treatments. Sounds to good to be true. It is approved for non-metatastic PC. I can't find much in clinical trails to determine it's efficacy. I am very curious to find out why it isn't used more.

dfridge profile image
dfridge

I've taken 2 year long breaks and it has kept me castrate sensitive. The first time I went on ADT for one year (lupron/ casodex) for around 9 months -- when PSA was h detectable for 3 straight months, I went off). That gave me time to detox and recover). Took about 9 - 10 months for PSA to rise again and when it went 1.0, I went back on it with Zytiga. Second time PSA dropped again and stayed on ADT / Zytiga for 1 year. Got off again when PSA was undetectable. Had 11 month of no meds and PsA started to rise slowly- after 11 months I went back on Lupron. In 5 weeks my PSA dropped from1.03 to .3. Many new studies coning out saying intermittent ADT is good. I would highly recommend

Horse12888 profile image
Horse12888

What your MO is saying, I'm sure, is not not that you are skipping one shot, but rather that you're on a vacation until your PSA hits 1.0 again--a protocol for intermittent ADT. Skipping one shot would not provide you with any relief at all, because it takes at least 4 - 6 months for your T to recover.

Now, whether IADT is a reasonable approach for you remains to be seen, though current studies show that it's not inferior to continuous.

What the others said about high-dose transdermal estradiol is a very good idea for people who tolerate Lupron poorly, because, as was mentioned, it's believed that the worst SEs derive from low E, not low T.

Best of luck.

jimbob99999 profile image
jimbob99999

I’ve gone on ADT holiday since May 2020. My PSA was down to 0.031 at the time. Since then, my PSA test (every three months) has continued to decline. It is at 0.025 as of Nov 2020. I am hoping to go a year before it starts to creep up again. Feeling so much better now I am off ADT. My major side effects were constant sweats, debilitating at night, and periodic exhaustion. I’ve been exercising like crazy since being diagnosed, averaging hiking distances of over 300km per month. This has allowed me to lose weight despite the fattening influence of ADT. A lot of gut fat has disappeared since going off ADT.

teacherdude70 profile image
teacherdude70

I started this trip in Dec 2015 with monthly Lupron for 24 months. Then off for 18 months.PSA doubled in 4 months so on Casodex for a year until PSA rose again so on Eligard for 24 months. PSA 0 6 on monthly checks.

Yes low energy but do some time at the gym 4-5 days a week but sleep 10 to 12 hours most days.

Started as Gleason 9 with IGRT radiation and HDR Brachytherapy.

Try exercise and extra sleep.

Oh, and I havebeen watching what I eat and have lost some weight.

As much as we are all effected with Prostate Cancer we each are on a seperate path.

in reply to teacherdude70

Hey teacherdude! I too started this project in 2015 ..

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

"I keep my "net" daily calorie intake and etc." That's total nonsense and I'm letting you know it is..... (ask and you shall receive)...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/05/2020 10:30 PM EST

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

Stick it out..... Don't break a take.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/05/2020 10:32 PM EST

packardlover1949 profile image
packardlover1949

Yes I had plenty of side effects. I'm 74 and I was on it for 18 months and was so tired of feeling bad and gaining weight. I reached undetectable at 12 months and at 18 I decided to take a vacation and see where I'm was at at 6 months. I've was off for 6 months and my psa started showing its ugly head again, but in a minor way at present, .04. I have another test in February and we'll see where I am then. Good luck.

bluesnjazz profile image
bluesnjazz

Since everyone reacts differently to different treatments, I can only tell you my experience. I've been on Lupron off and on since April of 2019 when the Casodex alone stopped working. Since starting Lupron again, I was on it for 7 months off and on up till April of this year. Even a 1-month shot for me knocks the PSA down sharply, and after doing 7 months (including 4 in a row), it had dropped to 0.4 so I stopped and took a break for 6 months. Checked PSA again 3 months later and it had risen to a little over 7 so had a scan (1st time in 2 years) and found no sign of anything amiss so refused treatment for another 3 months, at which time the PSA count reached 30 so started again so started another segment, one month injection at a time.

Personally, based on my 6 years of dealing with this chronic disease, a PSA of 1 is nowhere near worth worrying about. While during that 6 year period, I've used both Casodex and Lupron off and on, plus experimented with another drug that's available only in Japan (where I live) and Korea plus degarelix, I've refused treatment unless my PSA reached over 5, sometimes--like this time--even into the double digits.

The doctors I had at the big university hospital I went to until this year always pushed me to keep at it even when my PSA was low, but I refused, telling them my quality of life was more important to me than my length of life. So far that attitude has worked for me, giving me periods of several months away from the hideous side effects of hormone treatment yet had kept me from developing any more tumors.

CSHobie profile image
CSHobie

Try the one month dose of Lupron. The 3 month shot has a much harder hit on the system than the 1 month. I had the monthly shots, and side effects weren't too bad.

Quick2019 profile image
Quick2019

I went on ADT holiday in 2019. went from undetectable to over 5 in 9 months.

Went back on Lipron and PSA came back to undetectable in 2 months.

I was glad for the vacation but there is risk!!

Its a personal decision!!!

Break60 profile image
Break60

Yes whenever I tried to go on a vacation from ADT my psa immediately doubled so I had scans which found Mets which I zapped with sbrt . Then I went off ADT and on estradiol patches. See my profile.

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