I have been on zytiga/prednisone daily plus Eligard injections since June 2018. My original scan showed mets in bones and lymph nodes. A recent scan found nothing. I am considering either a Eligard vacation or a total vacation including Zytiga. My psa has been undetectable for more than 3 years. Many side effects from the drug regime. Any advice from experienced people?
Considering adt vacation : I have been... - Advanced Prostate...
Considering adt vacation
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It would have to be a total vacation (with tapering off of prednisone). The question is whether it will last long enough to give you some relief.
Thanks. Do you not think that perhaps some of the side effects are attributable to Eligard as opposed to Zytiga? I have never been sure that the Eligard adds anything to Zytiga anyway. My second opinion Doctor at Dana Farber suggested dropping Eligard if I was on Zytiga since Zytiga can do the same thing as Eligard. I did not do that yet. I think I should have.
Zytiga is being investigated as a monotherapy - at least in some people, it shuts off production on testosterone in the testes too. The side effects are mostly due to reduced testosterone - it matters little whether by Eligard, Zytiga or both. To get a vacation, you would have to stop taking both.
For me Zytiga, abiraterone acetate, added zero additional SEs over Eligard or Lupron but I never was on Zytiga alone. I think if your going to do a ADT holiday you want to get your testosterone levels up to get those benefits that your system has been deprived of.
Thank you so much. I cannot tell you how much your experience helps me make this decision
Take your vacation and watch it closely like Nalakrats says. He knows about vacations!
I wasn’t told Zytiga had any side effects, maybe that’s why I didn’t feel any. I took it for 4 months when I started Lupron. I didn’t feel any sides until after I stopped the Zytiga and continued Lupron. My only conclusion is the side effects were entirely from the Lupron and just took 6 months or so to appear.
Exercise is the key to handling all the sides on ADT, and it helps your testosterone recover more quickly and completely too. Nothing else you do is as important.
Bill had been on both for 18 mo. ( chemo, radiation too). Had been non detectable, no evidence of disease a year, no evidence of disease, asked for vacation, that was 4.5 years ago. Still on vacation.
Great advice
So you would end the vacation as soon as psa gets to 0.1?
Nal, when I started my ADT vacation last August my MO didn't mentioned anything about tapering off prednisone so I stopped cold turkey. What happens when you don't taper? Also, it's been 7 months since I started and my Testosterone has barley budged. Still feel awful.
Looks like we're on the same vacation schedule. My T only rose 20 points after the first 3 months. Will find out more next week when I get my next Xgeva injection and bloodwork. I have noticed a bunch of black hairs growing in my all grey beard though, so I know something's up.
At this point you may benefit from BAT treatment which gives you high doses of testosterone for a period of time. I have been told that it can be useful for those who are stable, such as yourself. I had asked about this therapy for myself, and spoke to a member of Dr Denmead's' team at Johns Hopkins, but was told it would do more damage than good to me since I have a rising PSA and progressing disease. I suggest you search for postings on this site for fellow warriors who have done this therapy.
I have stopped all ADT recently and for me T returned relatively quickly. I do not "feel" that much different than I did on ADT but then I had mostly just body altering side effects and none of the others. I have stopped Zytiga twice and both times my Dr's (RO and MO) said no need to taper since the dosage was so low (5mg once a day). I researched as much as I could about tapering but nothing I could find referenced doses that low. So this last time I tapered for one week and took 5mg every other day. I also researched what to watch for when cortisol does not return and had none of those symptoms. I thought about asking for a blood test but have since forgotten about it. This current drop of ADT is not so much a vacation as a check to see if my initial treatment with curative intent was in fact curative. I will do my next PSA in mid March and have struggled with if 3 months was too long to wait. My Dr said watch for unintentional weight loss and any pains that last longer than a week. I guess with my PSA so low and no other symptoms there's not really that much they can do as scans would not show anything at <.04. So I wait.Good luck and if I considered this a vacation I would follow Nal's plan, though I would need to read quite a bit more to fully understand it.
Nal, during your vacation how high does your T go in the time it takes your PSA reaches 0.1? How long does it take to reach 0.1?
Very impressive. Thank-you Nal. How in hell did you ever figure this stuff out?
Thanks Nal. Much appreciated
SHBG means?
Zytigia/Lupron/Prednisone. Pre Cancer T was 900. I am 58 years old. On ADT for about three years.
Are the answers to above in your previous posts or far more complicated?
Thank you very much. That is helpful.
When to come home is still a question for me.
As they told me when metastatic....we can only put it asleep......yuse pays your money...yuse take your chances....4 plus yrs hanging round this romper room of tortured souls....dont think odds are good once the beast wakes up ...anyway it happens....least on adt u smothering it with a pillow....
Could you please elaborate on your use of Histrelin. I see it is available in a 12-month subcutaneous implant and as a daily intramuscular injection.
Which form do you use?
What lead you to using this?
Is there a shorter term implant?
Is the side effect profile different than Lupron?
Besides the quick return of "T" is there another advantage?