No need for ADT yet??

[Tommyj2]

Fully expected to go on Lupron today but CT scan came back negative. This coupled with slow doubling time and negative bone scan has my MO thinking that we can hold off on ADT until doubling time speeds up keeping a very close watch on PSA... While I am only TOO happy to avoid ADT for as long as I can I know that there is controversy about handling things this way..... Any informed opinions Yea or Nay re: taking this approach?? Anything else I might be doing to help keep these microscopic stray cells from gaining traction ( can't take NSAIDS due to Kidney issues)... current PSA is 7.5 down from 8 a few weeks back...... thanks for any thoughts.

[tango65]

I would ask for an Axumin PET/CT scan or try to get a Ga 68 PSMA PET/CT. There are clinical trials for these tests:

clinicaltrials.gov/ct2/resu...

You may have metastases which have not been detected by the tests you had. Those tests are notorious for the low detection rate of metastases. I would like to be sure I do not have any metastases before deciding how to proceed.

[Tommyj2 in reply to tango65]

I understand your reasoning..... but wouldn't one expect a more substantial doubling time if there were substantive mets?? The question is how much of a chance am I taking if I wait until doubling time decreases.... I admit freely that I am in NO hurry to begin ADT...... I'll read your reference...perhaps it addresses these issues...

[tango65 in reply to Tommyj2]

You should consider that you may not have distant metastases. The PSA could be coming from lymph nodes in the pelvis (up to the aorta bifurcation) which could be treated with radiation. You may have some areas of cancer in the prostate and the Drs could offer you some local treatment.

If there is some disease that could be treated, the idea is not to let the disease to progress to a point that is impossible to stop. With a PSA of 7 , the new PET/CT scans, particularly the PSMA scans (Ga68 PSMA and 18F DCFPyl) most probable will detect if there s any cancer that could be treated directly

.

[Tommyj2 in reply to tango65]

Thank you for the thoughts and suggestions.... I knew that I would get much "food for thought"...putting this out to the group..... I also suspected that the consensus would be to use a more sensitive medium to detect whatever mets might be out there....so far this is the way it is going... If I decided to go this route I will discuss it next visit with MO in 5 weeks.

[tango65 in reply to Tommyj2]

Best of luck on this journey, a fellow traveler.

TG

[Tommyj2 in reply to tango65]

You are doubtless right.... I just like the feeling of a temporary reprieve..... a few years back this finding would have been a "done deal ".... ie.. " you are OK until PSA starts to rise substantively".... now I have to opportunity to turn this done deal into possible finding of mets with more sensitive tools.... caught between the devil and the deep blue... If the auxumin, psma and the like are not too hard on the kidneys it's likely the way I will go if the psa doesn't catch up to me first.. In any event thanks for your consideration and well intended and educated advice...

Bob

[tango65 in reply to Tommyj2]

Best of luck.

[tango65 in reply to Tommyj2]

I have been thinking about your situation. You should get a second opinion. You cancer could be confined to the pelvis. They could treat the cancer directly with radiation, cryotherapy, brachytherapy etc . The new PET/CT scans could give essential info. To wait until the PSADT starts accelerating without using the new PET/CT scans seems very risky to me.

[Break60 in reply to Tommyj2]

Slow doubling time is a very good sign, no doubt , particularly for Gleason 8. But ur Psa is high enough for the new ct pet tracers to locate any tumors. You have bcr and qualify for axumin scan which is free with Medicare and medigap and available all over the US. Why not have the scan? Doesn’t hurt and free..... just sayin.

[AlanMeyer]

Hello Tommyj2,

I have a few thoughts about your situation. They aren't so much recommendations as just suggestions for things to discuss with your oncologist.

The first one is that there are many forms of androgen deprivation. The main one we think about is Lupron or similar LHRH agonist, but there are others that are weaker and have less effect on cancer, but also have less side effects. Some examples include: low dose bicalutamide, estradiol patches, and avodart. They might slow cancer progression and even regress some cancer while still keeping side effects low. Some oncologists use these drugs. Some don't. They may be worth discussing with your oncologist.

Another suggestion is that you and your oncologist set markers for what might cause you to begin treatment. I've always thought that "let's wait and see" is a pretty vague strategy. What are we waiting for? What do we expect to see? You might set a PSA of 10, or whatever, as a trigger to begin ADT. Or maybe you'll look for a particular doubling time. I'm not arguing for rigid targets. You might say "PSA = 10", but if it took a year to go from 9 to 10, then maybe set a new target.

I hope that helps.

Alan

[Tommyj2 in reply to AlanMeyer]

I like this kind of thinking.... will bring it up with the MO. We have set a treatment " start " parameter. When doubling time reaches the eqivalent of every 6 months.... I have to go back to the MSK calculator to know what actual number this is.... will see MO in another 5 weeks and see if she thinks interim Tx with other drugs in lower dosage would be worth doing.... My wondering would be if using ADT like drugs would lead to faster castrate resistance ( kind of like using too low a dose of an antibiotic) ?

[AlanMeyer in reply to Tommyj2]

Your question about faster castrate resistance is a good one. I don't know the answer. The three treatments I mentioned are all different from each other and different from Lupron. Bicalutamide reduces testosterone uptake in the tumor cells. Estradiol patches stimulate estrogen receptors. Avodart hinders the conversion of testosterone to dihydrotestosterone - a much more potent stimulator of cell division in prostate cells than plain testosterone. Does resistance to one generate resistance to the others? I don't know.

Ask the MO about this. I wouldn't be surprised if she doesn't know either, and I consider it possible that no one knows, or at least that there's no scientific consensus on the answer.

It was once thought that ADT is palliative, that it reduces symptoms but doesn't extend life. It's now believed that it can extend life (or at least that's what I've read and been told.) It's possible, for example, that the number of new mutations leading to increasing aggressiveness (more frequent cell division and more ability to metastasize) is proportional to the total number and activity of tumor cells. In a billion cells there might be twice as many mutations as in a half billion cells. If that's true, and I don't know if it is, then treatment might extend life in spite of its possibly leading to increased resistance.

These questions are the kinds of things that make me think that cancer research is harder than rocket science.

Best of luck.

Alan

[pjoshea13]

Tommy,

My view 15 years ago was that, since ADT is purely palliative - never a cure - & fails for most men between 18 & 24 months (i.e. basic Lupron), there is no point in rushing into it.

Yes, we now have various ADT drug combinations that do better, but for younger men without co-morbidities, I see no reason use-up an option that may be useful down the road.

-Patrick

[Dd7757 in reply to pjoshea13]

My sense is that the current “ hit it early and hit it hard” paradigm has been created by favorable overall survival statistics and the availability of multiple androgen directed therapies . The question one has to answer is whether living longer but with life long side effects from the drugs is better than waiting , living shorter , but with a higher quality of life.

[pjoshea13 in reply to Dd7757]

If ADT must be used, then I am all in favor of the protocol that leads to the best overall survival [OS], provided that the OS benefit is significant & the treatment has acceptable morbidity.

But Tommy isn't in that situation & we lack a study designed for the Tommys of the world, with a "wait & see" arm. But my guess is that the Wait arm would do better. & QoL would be as good as it gets while waiting.

Meanwhile, Tommy could do some of the things that have been discussed here:

- monitor inflammation markers & act to eliminate subclinical inflammation.

- monitor coagulation status via D-dimer, & use nattokinase to hasten removal of microclots that may facititate metastasis.

- reduce unfavorable DHT via AVODART

- use a statin (work up to highest dose) to impede uptake of LDL-cholesterol

- Metformin

- supplements, where the research evidence passes the smell test

- etc, etc.

-Patrick

[j-o-h-n]

I'd like to give you my opinion on your decision, now that I'm no longer indecisive..

But now, I'm not so sure.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 08/09/2019 2:50 PM DST

[jfoesq]

Tommy- for what it's worth. I was dx 7 yrs ago with Gleason 9, PSA in 40s and rising quickly, 2 mets in spine, 1 in acetabulum and 1 in lymph node. I had PR and was initially placed on Lupron INTERMITTENTLY. Then Abi (Zytiga) was added to the Lupron, but also INTERMITTENTLY. After 5 yrs of being treated INTERMITTENTLY, I have been on Lupron CONTINUOUSLY, but am no longer taking the Abi. I have responded well to all of my treatments. I am not recommending any specific treatment for you, just relaying to you my experience. I am treated at MSKCC in NYC. Where are you treated?

[Tommyj2 in reply to jfoesq]

Sounds like you have been through the wringer for a while.....any particular reason that you are continuous now rather than intermittent?? How are you holding up to SE's ? Any advantages you noticed while on intermittent?? On average how long were you ON before he took you off ?..don't know how intermittent is decided ( ie...is it different for everybody or is there an algorithm

Sorry for all the questions but your profile is complex.... always feel badly when someone starts OUT metastatic.... the general public is SO misinformed about the dangers of this disease..." oh...it's only prostate ca. no problem!!! "..... they should spend some time on this forum. Best of luck to you

[jfoesq in reply to Tommyj2]

As best I can recall, I went 20 months between Lupron shots the first time I went off, approx. 12 months in between shots the 2nd and 6 months or so the last time. I assume I went on continuous because the periods of time I was able to go without ADT was getting to short. In addition, studies suggest (although, they apparently didn't have uniform standards) that patients live longer with continuous treatment. Some docs would have their patients on a set schedule (i.e.on ADT for 6 months, then off for 6 months, others would stay off ADT til their PSA roe to a certain level, but not all docs used the same PSA increase to decide when to restart the ADT.)

When I went off the ADT (and Abi), my testosterone would begin to rise and I think I would feel less lethargic and my sex drive would begin to return. Also, and apparently in the reverse of what many other people experience, my "breasts" would become sensitive when I went OFF the ADT.

My response to all of my treatments has been very good. As of my last appointment about 4 weeks ago, my PSA is still <.05 (undectable at MSKCC).

What are SEs?

[Tommyj2 in reply to jfoesq]

SE's ( side effects.....sorry : )

I've often wondered if the reason psa doesn't rise rapidly during intermittent ADT is that the testosterone takes a long time to recover....thus... it would be almost like still BEING on ADT?? Did they test your testosterone levels during your vacations from ADT??.... Sounds like your side effects were not terrible... but I always ask.... Right now I got a reprieve from starting ADT because my CT scan is negative and the onlcologist thinks it doesn't make a lot of sense to endure the SE's of ADT until psa doubling time drops a bit more.... I'm happy to oblige!!

[jfoesq in reply to Tommyj2]

I assume you mean SEs while I was ON the treatment. The following are my SEs. From age 24-54, I gained 15 lbs. Within 6 weeks of starting ADT, I gained 15 lbs, most of it in my stomach. I now have man-boobs (which I really hate; no sex drive; pain in both sides on hips WHEN lying down on my side(s); some short-term memory loss(? not sure); some lethargy (not sure?); smaller penis size; no muscles;

I also have fluid in my legs, but that's probably a result of the more than 30 lymph nodes removed during my prostate surgery. It is, what it is. I am nit happy about any of them, but I am very happy to still be alive.

[Tommyj2 in reply to jfoesq]

Nasty.... were you dieting during the time you gained the weight or working out regularly?? Wondering if there will be anything that I can do to mitigate these kinds of side effects if I am so afflicted when my time comes..... Some guys don't get all of these... some work out like maniacs to maintain muscle tone.... BTW... you mention from age 24 to 54 ... I'm thinking that is a typo?? no?

[Tommyj2 in reply to jfoesq]

OOPS.... I think you were giving me an example of how slowly you gained weight " naturally " over the years and then how quickly it came while on ADT...

[Hidden]

Ask your MO, “Doc, if you were in my shoes, what would you do?” If they think about it more than a quick reply, you might be surprised.

Keep kicking the bastard down.

GD