ADT vacation

[joeguy]

After about 20 months of Firmagon/Eligard injections I went castrate resistant with a 6-7 week doubling time. At that time I was started on Xtandi, and have been undetectable since (about 8 months). I told my doc that if I stay undetectable for a full year Im going on an ADT vacation. He thinks that is a bad idea, but I told him the body needs a break from the relentless fatigue of ADT. He responded "well you could maybe stop the Xtandi, but I wouldn't stop the Firmagon injections". That doesn't make a bit of sense to me considering the injections are no longer working on their own anyway. I plan to stop both Firmagon and Xtandi for as long as I can. Does my docs response make any sense to any of you guys?

[Tall_Allen]

The Firmagon IS working. As castration resistance progresses, among other changes, the androgen receptor gets upgraded so that there are many more of them. This means that less testosterone is needed for the same effect

[joeguy in reply to Tall_Allen]

Well I guess its working somewhat. It has not been able to get my T below castrate level for about 6 months. Last testosterone reading was 55. I think its the Xtandi that is doing all the good work at this point.

[tango65 in reply to joeguy]

If Firmagon is not decreasing the testosterone to castration levels, you sould try lupron or similar.

[joeguy in reply to tango65]

I have...... I used Eligard (Lupron) or Firmagon for about 20 months. The Firmagon always worked better, but the lowest either ever got my T level was about 30. Now neither seem to be able to get it below 50 which is castration level (although some now say the number is 20).

[tango65 in reply to joeguy]

Your testosterone levels could contribute to the short PSADT you had. QOL of life issues are very important and you have to decide what you are willing to tolerate. Best of luck.

[Tall_Allen in reply to joeguy]

Have you tried Zytiga yet? It might bring your T level down.

[joeguy in reply to Tall_Allen]

not yet, just Xtandi so far. I think its because Xtandi is approved for non-metastatic castrate resistant cancer, and Zytiga is only for metastatic castrate resistant cancer. In the insurance world, spread to lymph nodes is not considered metastatic, and I have no known bone mets at this time.

[Tall_Allen in reply to joeguy]

Apalutamide was recently approved for non-metastatic castration-resistant PC.

[joeguy in reply to Tall_Allen]

yes, once Xtandi stops working, that will probably be the next one I try. If I have new mets, I could try Zytiga, but they say usually when X fails, so does Z. The curious thing about my testosterone level is that it stayed around 30 for 20 months before I started Xtandi. Once I started Xtandi, it shot up immediately to about 65 (above castrate level). Despite monthly Firmagon injections, T has been above castrate for about 7 months now.

[Tall_Allen in reply to joeguy]

T can accumulate when anti-androgens are used. They block T from being used by the androgen receptor, but they don't block it from being created in the first place. I was hoping you could try Zytiga to shut off the secondary source of androgens (the adrenal glands).

[joeguy in reply to Tall_Allen]

If the insurance companies weren't so difficult about their definition of what is, and what isn't metastatic, I would certainly give it a try. My doc and I have discussed if maybe my adrenals produce more T than average. He says he has 3 or 4 other PC patients that are also very difficult to keep below castrate level. Its a bit of a mystery

[tango65]

Yes, there are not data about doing ADT vacations when treating castration resistant cancer with firmagon and Xtandi. The firmagon is working. When the cancer is castration resistant it is very sensitive to testosterone. If Firmagon is stopped and testosterone recovers the chances are that the cancer will have a fast progression.

[joeguy in reply to tango65]

So does that mean if someone is castrate resistant, they should never take a break from the drugs, even if PSA is undetectable for a long time?

[Tall_Allen in reply to joeguy]

It depends if you need a break for QOL reasons. A break is not justified for survival.

[joeguy in reply to Tall_Allen]

If unrelenting fatigue and brain fog that is making it increasingly difficult to make it through an 8 hr work day is a QOL reason, then yes

[cesanon in reply to Tall_Allen]

At what point do you determine the firmagon is no longer working, and you need to do something different?

What are the indications that it is time to move on.

[Tall_Allen in reply to cesanon]

If the testosterone is at castration level, it is working.

[joeguy in reply to Tall_Allen]

I just checked on my last T reading and I am at 49.6 so I guess Im at castrate levels again.....sort of

[Tall_Allen in reply to joeguy]

I agree with your "sort of" assessment. Perhaps apalutamide may work better.

[Sxrxrnr1 in reply to Tall_Allen]

I am now confused. Xtandi blocks testosterone access to receptors, does not decrease T. My understanding is that apalutamide does the same, as so with Casodex. I have never read of Xtandi decreasing T levels. In my use of Xtandi, when working, my T increased from 400 to 950, as PSA dropped from 375 to 3,,,,with no ADT at all. Am I incorrectly assuming Apalutimide basic action as an anti-androgen is different than Xtandi?

Help

[joeguy in reply to Sxrxrnr1]

Interesting..... makes me wonder if an increase in testosterone level is to be expected when taking Xtandi?

[Sxrxrnr1 in reply to joeguy]

Yes,,,cannot vouch for everyone however,,,SOP when discussing Pca

[Tall_Allen in reply to joeguy]

Should not happen with Firmagon.

[joeguy in reply to Tall_Allen]

Maybe not, but I can confirm that it has happened with Firmagon.

[Tall_Allen in reply to joeguy]

That's because your adrenals are making androgens. Think of it this way - you can block testosterone at the source (testicles, adrenals) or you can prevent it from activating the androgen receptor, or both. Either way should control the cancer. Sxrxrnr1 only preventing activation, but did not block the source, so testosterone accumulated. His T level shot up to 950 because he did not block the source. Yours is still under 50 because you are taking Firmagon.

[joeguy in reply to Tall_Allen]

It is curious though that my T had been under castrate level at around 30 for 20 months until I added Xtandi to the mix, at which time it jumped up to 65, and has stayed in the 60s and 50s for 7 months. Seems like a cause and effect kind of thing....

[Tall_Allen in reply to joeguy]

It's consistant with an extra-testicular source

[Tall_Allen in reply to Sxrxrnr1]

The goal is to control the cancer. If testosterone can't get to the androgen receptor, it is controlled. Also, apalutamide may downgrade the androgen receptor, which would make the Firmagon more effective. Right now, apalutamide and Xtandi are the only two hormonal agents approved for non-metastatic CRPC. If he can't get Zytiga, he has to work with what he can get.

[RICH22]

i see most often that the next step after RP is to radiate the whole prostate bed. have you tried any ADT that removes the ability of PCa cells to use testosterone? also heard of BAT, thelancet.com/journals/lano... -- the idea is to starve the cancer for a few months, then hit it with a super-large dose of testosterone. the cells explode by "over-eating"

[cesanon in reply to RICH22]

Bat is interesting. My understanding is that it works sometimes. But just as often makes things worse.

There's a doc at Tulane who participated in the original bat study who is willing to trial straight testosterone without the binary alternation.

[TEBozo]

Who us you doctor? Get a.second opinion

[pilot52]

At Duke I asked the same question..Reply was the simple reply was that Lupron kept the food supply down ( T) the Xtandi stuffs a sock in its mouth to keep it from eating...thats why some form of ADT is given in addition to Xtandi...

[pilot52]

Question....what was your PSA when you went on Xtandi...and are you saying it took 8 months to get to undetectable ?

[joeguy in reply to pilot52]

Psa was just under 2 and doubling pretty quick when I started Xtandi (went from .1 to 2 in a few weeks). Within a month of being on Xtandi I was undetectable.

[Hidden]

The choice is yours...... reduce your survival statistic or increase. Listen to your Medical Oncologist.

GD

[joeguy in reply to Hidden]

Im leaning towards being able to continue working a 40 week and continuing to have employer provided insurance. Fatigue and brain fog are an increasing problem on continuous ADT. Most in our situation are past working age, or retired early. That is not an option for me as I am 10 years away from Medicare.

[ctarleton in reply to joeguy]

Sometimes men can work, or try to work, at high capacity right up to the very end. Sometimes that works out. Sometimes it does not. Many men find themselves in positions of living with "constraints" and "limitations" to their capabilities, as they live longer with advanced disease or with the side effects of advance treatments.

Looking into ALL options regarding one's working life, estate planning, and financial issues relatively soon after an initial diagnosis can be beneficial, ..... "just in case".

For example, several advanced disease men here who were well under normal USA Medicare age were able to apply for Social Security Disability Income (SSDI) benefits, and to qualify for early Medicare relatively soon after being awarded benefits.

Doing some "what if" planning early can sometimes help keep other options open and under more personal control later.

(Similar things apply for some USA military veterans with Agent Orange exposure histories, or eligible for other VA benefits.)

No matter what happens, the impact of our disease on "working life" and everything associated with it can be profound. The fears and feelings of loss and sadness and anger that can come with impacts on our working lives & finances and who we have been in the working environment are very real. It can take lots of time and support and planning and flexibility to come to terms with the new realities.

Just some thoughts,

Charles

[joeguy in reply to ctarleton]

Well put, and I agree with you. Had I been a better financial planer earlier in life, perhaps I could have retired at age 55. Sadly because of life events, work lay-offs, etc... continuing to work till about age 67 before retiring became a necessity.

You are correct that you can get on SSDI once you have mets to bone or organs after primary treatment, and through the "compassionate allowance" program, you can start receiving benefits almost immediately. The problem is you still cant get on Medicare for 2 full years. So one is left with 100% of the insurance expense since you no longer have the employer contribution.

I have come to terms with the new reality, and after much thoughtful reflection, I have decided the new reality sucks!

[ctarleton in reply to joeguy]

Here! Here! I agree, ... sometimes "the new reality sucks"!

[Sxrxrnr1 in reply to joeguy]

Cobra,,,likely costly. Obamacare with no income,,,who know?

[Sxrxrnr1 in reply to joeguy]

Have you considered SSD, thereby if approved, eligible for Medicare after 2 years on it?

[Hidden]

Understand. I was most fortunate at age 57 to have an employer who understood that for the next six months during chemotherapy that I would only be working about twenty hours each week. I retired at 63. Today I am 72. I assume that you and your employer was spoken about your medical situation. I wish you the best.

GD

[j-o-h-n]

Whatever you decide........ never look back..... Hoping for the best for you...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/27/2019 6:07 PM DST