Lupron Advice

Need some advice. If you take a look at my signature, you'll see what my journey has been like so far.

After my recurrence was detected, I was on Casodex intermittently and it brought my PSA down fairly well. In January of 2017 my PSA went up to 7 and I started Lupron injections. My PSA plummeted to <0.1 in three months. My bone and CAT scans are clear.

At the end of November I will have been on Lupron for ten months and I would love to have a vacation from the drug. I'm not in love with the hot flashes and the loss in strength. In discussing this with my oncologist, I got the impression that she thinks a vacation is a bad idea.

From what I understand, there is no difference in lifespan wether you take vacations or not. So, why might she want to keep me on the drug? I'm looking to get some opinions other than my own. Thanks in advance for your responses. This group has been great in giving me good information.

This G9 stuff is a different animal. I've come to the conclusion that for me, if recurrence does appear, I'll be starting ADT to fight it early and continuously. My 5+4, cT3a has my respect. I was on ADT for 3 years as part of my primary treatment; didn't like it, but will do it again.

It's hard to find specifics for G9 cases in most studies. There just aren't enough of us around. They ignore us, or they lump us in with lower risk types blurring the results, or rarely they'll mention something like "an unplanned subset analysis showed...", or some such. There may be a noticeable effect within the small sample of G9s, but usually not enough to draw statistical conclusions.

I don't have a bunch of links, perhaps the forum's linkmeister does, but I've seen enough studies that I do think continuous may be better for the more severe situations. Not for intermediate risk, studies have shown rather clearly that intermittent works as well as continuous for those cases. But perhaps for the high & very high risk folks if recurring especially with short PSA doubling times, and for those who may be widely metastatic, it seems there may be benefit to continuous ADT.

Some studies have also suggested that the Quality of Life stats aren't all that different between intermittent and continuous ADT.

Lots to explore. Google away...

You are quite right that the overall survival is no different in all studies of intermittent vs continuous ADT among men who are not metastatic and are still hormone sensitive. They also consistently find no difference in rated quality of life. The vacation periods often aren't long enough to provide relief - testosterone doesn't have time to return to normal (This is why the BAT trial in hormone-sensitive men was so intriguing). The question is - considering that very rapid PSA increase to 7.5, how long will you be able to have a vacation, and will it be long enough to give you relief of those symptoms for a while before you have to re-start ADT?

A recent subset analysis of the abiraterone STAMPEDE study among recurrent men without metastases suggested that early use may be beneficial in slowing progression - but it will be a challenge getting your insurance company to agree to that. An oncologist I met wants to do this for a patient. Her reasoning is that if she could get a really substantial cancer-cell kill, say 90% or more of all cancer cells, using Zytiga for 9 months, she may be able to slow down regrowth enough to provide him with a longer vacation - up to 2 or 3 years - during which he might recover better quality of life.

There are a lot of unknowns. I think you should discuss this further with your oncologist - what does she see as the risks? Tell her specifically what are the benefits you expect (e.g., reduction in hot flashes). I think the only way you can know is if you try it, and put a contingency plan in place - how will you decide when the vacation is over? What biomarkers will you use (e.g., T levels, PSADT, etc.)? Use a guided questionnaire to evaluate ADT-related quality of life?

Fairwind said...
My oncologists thoughts...."We have your cancer under control right now. If you take a vacation from ADT, your cancer is likely to progress rapidly and it may be difficult to get it under control again..."

But...There is a novel treatment called BAT where men with advanced PC are given high doses of testosterone and trials in progress are getting good results. One such trial is called "Restore"..

That sounds reasonable to me, too.

Regarding BAT, I've posted before that I have a friend on the TRANSFORMER trial, a crossover trial for Xtandi vs BAT. He's on the BAT arm, and while not hugely effective for him on PSA control, the rise seems to have slowed and he's feeling very good! (He'd been on Zytiga for about 16 months before it quit working, and Xtandi didn't do anything to slow his down).

For fun here's a link to a picture of both of us... Men In Kilts! (I'm in the black shirt). Even with all of this health stuff going on, let's go live life, eh?

Thanks to all for the advice. I will be asking my Oncologist some very pointed questions come late November.