Recovery from ADT

I found this 20 minute video on another forum, and was glad i did. But wish i had found it before i made the decision to choose it as a complement to SRT. Anyone who is considering ADT particularly if being given a choice by their RO/MO, with expected marginal benefit, should watch this video. The presenter is Dr Robert Mulhall of MSKCC, well regarded in his field. It starts with a discussion of the side effects, and at about 8 minutes goes to a lengthy discussion of chances of full recovery.
I am still dealing with low T, last test was a few months back, and 8 months after end of Lupron running its course, T was 149. I will probably test again shortly, (and will report back) but fully expect it to be hopefully higher, but still low, based on hot flashes and belly fat continuing to be an issue.

Video is here:
https://www.youtube.com/watch?v=u4tn9mchlg4

A couple of quotes by Mulhall, that to me, go to the main point we all should be aware of....

"It's crystal clear to me that the majority of patients don't know what they are getting into. And that the regret index is very high"

Then at the very end....referring to his own hospital (where i am being treated)...
and ultimately patients should be given realistic expectations and, at least at MSKCC at this time, many of the patients do not get those expectations given to them"

To be clear, i was told about the side effects, and affect on quality of life, but was not told of the high chance of never recovering to baseline Testosterone after treatment.

My husband received his first injection from his urologist. I was at the appointment and he never mentioned the side effects. I asked because I had already done the research and he basically shrugged and gave the hot flash speech then he said that he was also on Lupron and that it was no big deal.

But, to be fair, do any doctors - when prescribing any drug - offer a detailed description of possible side effects? I know I've never been given any possible side effects to any prescriptions - any knowledge comes from the pharmacist or my own research.

Ed, I’m glad you recovered well, and in fact, for me, it hasn’t been fun, but it’s been manageable. Just a little scary to think such a relatively large % of guys never fully recover. I was told in November, that my T is not as far along in recovery as they wou;d hope, but that I had a low baseline to begin with, so it’s not surprising. I would have liked to have been told that before my first shot.
Nevertheless, you and I are just two guys and our results are anecdotal. And for better or worse, as far as PCa goes, it works, and the alternative could be worse. I just think that it’s worth throwing the recovery numbers out there, for those still on the fence especially. Men should know going in that there is a significant chance of long term QOL EFFECTS.
The good news is, it doesn’t affect photography skills, as I can tell by following you on Instagram ;-)

What’s I find interesting in the data presented in the video, was that age, time on ADT, and T level at baseline we’re all factors in T recovery. Positive factors were
Age <65
Testosterone at baseline >400
Time in ADT <6 months.

6 months or greater was a negative factor for full recovery

Pratoman said...
I found this 20 minute video on another forum, and was glad i did. But wish i had found it before i made the decision to choose it as a complement to SRT. Anyone who is considering ADT particularly if being given a choice by their RO/MO, with expected marginal benefit, should watch this video. The presenter is Dr Robert Mulhall of MSKCC, well regarded in his field. It starts with a discussion of the side effects, and at about 8 minutes goes to a lengthy discussion of chances of full recovery.
I am still dealing with low T, last test was a few months back, and 8 months after end of Lupron running its course, T was 149. I will probably test again shortly, (and will report back) but fully expect it to be hopefully higher, but still low, based on hot flashes and belly fat continuing to be an issue.

Video is here:
https://www.youtube.com/watch?v=u4tn9mchlg4

A couple of quotes by Mulhall, that to me, go to the main point we all should be aware of....

"It's crystal clear to me that the majority of patients don't know what they are getting into. And that the regret index is very high"

Then at the very end....referring to his own hospital (where i am being treated)...
and ultimately patients should be given realistic expectations and, at least at MSKCC at this time, many of the patients do not get those expectations given to them"

To be clear, i was told about the side effects, and affect on quality of life, but was not told of the high chance of never recovering to baseline Testosterone after treatment.

Thanks for posting! I was told about some of the common side effects ie. ED but the higher risk of diabetes, loss of muscle mass I was not informed about. Again many thanks.

My testosterone was around 750 ng/dL before leuprolide chemo. 2 &1 1/2 years after ending 2 & 1/2 years of leuprolide chemo, my testosterone rebounded up to 340 ng/dL as my right testicle was dead. Soon after that my left testicle began dying as well. T dropped to 160 until last month when I got a hit of Firmagon followed by a 6 month hit of Eligard yesterday.

When I asked the doc about this, he said he was surprised that both testicles hadn't died right off after the first round of leuprolide chemo, as that is what often happens. The shingles belt was no surprise either, as that happens frequently with leuprolide chemo. Now I have had both shingles shots, so for the last month (since Firmagon injection) all I have gotten is an increase in my exzema and a few nasty little single shingles spots.

The mild cognitive impairment is more noticeable to me than to others. A pretty bad nausea attack during this mornings breakfast has got me thinking about keeping a loaded Pax in the dining room for such.

Everton, I’m glad it helped, I always feel if a post of info like that helps one guy, then, it was worthwhile.

Ed, your photos make photography look easy, but I’m sure it’s not

Trail guy, tough ride. I still haven’t gotten the shingles shot I need to do it

CJ, I’ll leave that answer to others more kn0wledgeable, but my understanding is that there is no right answer, lots of different opinions.

CJS10, 24 months for me but I came out of surgery detectable I talked to my team about only 18 months cause the SE's were and still are beating the craph out of me but they said they had good success with 24 and I said that's good enough for me. Larry

Pratoman,

An interesting topic. This is an additional link about Mulhall's research:

https://www.mskcc.org/clinical-updates/testosterone-recovery-uncertain-after-androgen-deprivation-therapy-prostate

I was just looking for additional articles in this area.

This one mentions a nomogram to show recovery time after SRT+ADT, but I don't see the actual nomogram:

https://www.redjournal.org/article/s0360-3016(18)33954-3/abstract

In the following, some of the men studied had completed both proton therapy and ADT. But none of them until at least one year after finishing ADT.

https://theijpt.org/doi/pdf/10.14338/ijpt-14-00004.1

This is a little different than having had RALP, then SRT+ADT. But I was wondering if possible use of TRT for you would be a possibility. You are just 4 months away from the one year mark after completing ADT.

I guess the saturation theory in your case would posit that if your "normal" T level at this point in your life (putting aside the whole PCa journey) would be, say 600, would your body really know/care if you achieved that level by a very slow "natural" ramp-up over time after ADT, vs. through T shots every few weeks?

Personally, I was not confident enough in saturation theory to keep injecting T after I saw a slow rise in my uPSA (seven years post-RALP). So I went off the TRT last Nov. Even testing uPSA monthly for last two years, it is so hard to determine what's what with an undulating pattern of uPSA results. I am seeing an endocrinologist in Jan. to discuss my low free T, high estradiol, fatigue and seeming diminished ability to keep muscle on--even with a lot of lifting/aerobics. But I don't know if all this is just "being age 70" or not. If she says I can go back on the TRT shots and/or take anastrazole to prevent so much aromatization of T to estrogen, I may try TRT again with closely watching uPSA trend. It's just nerve-wracking. Am sure it would be for you, too.

Just wondering if you have broached this (TRT) with any of your doctors?

Robert

farmanerd said...
My official end of six months of ADT was 10/15/19 and I'm still experiencing side effects: hot flashes, slightly anemic, what was it like to have libido? Now I have a better idea of recovery profiles.

What I found confusing is that at 15:00 in the video, ADT exposure is grouped by less than or equal to 6 months and then larger time ranges; however, in the statistical analysis at 15:30 in the video, suddenly it's less than 6 months and greater than or equal to 6 months. Probably have to dig into the papers to see where 6 months really gets included and we have to acknowledge that there really is a continuous probability distribution and that the boundaries are fuzzy areas.

The biggest takeaway that I got from the video is that MOs or ROs infrequently take a baseline testosterone reading before prescribing and administering the many forms of ADT -- I did not have this done and was a week into Casodex before I realized that it would have been beneficial. Mulhall even seemed ashamed that MSK only did the baseline testing 10% (? couldn't find the video time where he referenced this) of the time.

I never had a baseline testosterone test nor did I get the two weeks of casodex but the latter was because of a history of hep c.

Robert, thanks for the links, don’t know how I missed your post in December.

I last checked T level in November 2020, and it was close to normal, just under my already low baseline, at 268. Next month will be two years since the end of ADT for me. But I’m feeling good, so not concerned.

Somebody said...
Hi Slapshot, This is Reg Dunlop. Just kidding. I am possibly entering a PSMA PET trial in LA and wanted to see if you think the salvage radiation extends life. I've been on intermittent Lupron for 4.5 years. My PSA goes to .01 on lupron and off Lupron it doubles every 3 weeks. Traditional CT Scans have not spotted the cancer except two hot spots on a PSMA PET scan at NIH in 2016 (abdominal aorta lymph node and retroperitoneal lymph nodes). My primary treatment was IMRT followed by high dose brachytherapy.

slapshot said...
Entered a 3 year clinical trial of a new PSMA Pet scan August/2018 which indicated 2 presacral lymph nodes positive at PSA=1.17. Uro/surgeon recommended RT and 2 years ADT. My RO said 1.5 years of ADT after I said I was uncomfortable with ADT for 2 years after reading negative comments from men on Lupron. We agreed on 6 months. Bad news is that I suffered many of the same SA as have been mentioned on this forum. Good news is that although my T levels are not as high as I would like, my muscle mass and endurance have come back as has my "frisky" behavior and my wife and I are planning a rigourus 12 months on our feet, bikes and skis.

If my PSA moves up in the next year or so to whatever level my RO thinks can be identified, I will get another Pet scan to identify lesions/tumours and hopefully with RT, eliminate the problem. Knowing what I know now, will probably skip the ADT even if only for 6 months.

Dave

George Glass,

These new kinds of PET scans are much more sensitive than traditional CT scans( unless CT scans have advanced). As my post indicates, my PSA was 1.17 at the time of the scan which is probably the minimum for detection. The RT targeted the 2 small, regional lymph nodes that were hot as well as the prostate bed which had never received radiation after surgery. RT was 12/18. PSA readings every 6 months have indicated .04. Am receiving another reading in a month. In my opinion, pin pointing the hot nodes with RT will extend your life but that is only an opinion. BTW, my testosterone(338) has come back to a very satisfactery level. I will not be happy if in the future someone suggests ADT even for 6 months.

Dave

When I was set to get IMRT the doctor asked me if I wanted ADT also, and I asked about the benefit he said maybe about 5% longer life span...I didn't choose it, so I was able to be free from ADT for 2 years..Now on ADT I am thankful for it.... been on seven months now with only slight side effects....Hot flashes not bad, and about two days after shot some nausea and tired.