Can anybody point me towards info that talks about how long it takes for PSA rise or testosterone levels to rise after missing my monthly injection?I should have had my Lupron injection two weeks back. For certain reasons I only have them monthly now whereas before it was every 3 months.
How long have I got before things start getting dangerous? I know it's relative to each individual but what is a ballpark figure timewise ?
Much appreciated 👍
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Alicat1
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"The Impact of Late Luteinizing Hormone-Releasing Hormone Agonist Dosing on Testosterone Suppression in Patients with Prostate Cancer: An Analysis of United States Clinical Data"
Your question is important and not uncommon. It is also concerns an understudied topic and the answer is more difficult than casual responses by doctors.
I'm on a different ADT than you but the article above concerns your Lupron. From the article, non-adherence to ADT schedules is shockingly common. But apparently non-adherence really not a good idea. The study focuses on the recovery of testosterone; I think we will find it difficult to find clinical research linking late ADT dosing to PSA rise.
But doctors will have casual things to say about missed doses; from what I have read, such statements are often not strictly reliable. Because there's little research, and the doctor will never have accountability, and the doctor's experience is only anecdotal and casual, and the doctor is also motivated by your immediate feelings. Let's assume that a majority of doctors actually want a good outcome for you. So your doctor will figure out what to do, for example maybe having your injection now and then adjusting future schedules. This is just me speculating; I have no idea.
Along with PSA, as the article suggests, you will want to have your testosterone tested as soon as possible. As well as taking whatever corrective action you and your doctor figure out you should do as soon as possible.
Pharmacokinetics for Lupron is one aspect of what you were looking at. But that's just the drug. Then there's the dynamics of testosterone recovery and how that impacts your sleeping prostate cancer cells. And then of course PSA is downstream from that.
Hi AliCat - from your bio, you have metastatic prostate cancer, but if I read it correctly you are only on ADT? (Ignoring the bone drug.) And you are now also on transdermal estradiol for QOL? I'm assuming the estradiol is low-dose? Only to improve side effects of therapy? (This is very interesting to me.)
But overall if you have metastasis, then being only on ADT seems unusual. You must have a medical oncologist? By unusual I mean "undertreated"?
Since 2017 is fantastic! A continued success for you!
Three days ago, my oncologist started me on low dose, 0.025 , estradiol patches to improve the extensive and powerful SEs I experience on Lupron Xtandi / my QOL. I’m a super responder so the SEs have put me in a wheelchair. Im hoping I get some of the great results others here have experienced. So far it has dramatically changed my strong desire to sleep 16 hours a day ( woke me up ) and it’s improving my mental attitude as well. Supposedly I will start seeing results after at least a week and a half or more days.
Good to hear. It did wonders for my hot flashes. Sorry about the wheelchair situation. I have a skull base tumour on the clivus and that is worrying me. Put my left eye out for 6 months. Pressing against 6 th cranial nerve then 3 rd cranial nerve. Eyesight ok now.
Yes I have an oncologist but am paying from my own pocket everything so life is not always easy. I have a skull base tumour on the clivus and that is worrying me. Put my left eye out for 6 months. Pressing against 6 th cranial nerve then 3 rd cranial nerve. Eyesight ok now. However Lupron injection is delayed by two or 3 weeks and that's making me nervous.
I offer my own experience as example, but caution that it may not be the same for others. I was on intermittent Lupron for several years. Each time I completed a series of Lupron, (three times), my PSA rose gradually, but exponentially. After Lupron series of three injections in 90days, (30 days apart), my PSA always fell to <0.1. Then it rose gradually, to roughly 4, the point of RO advising next injection, after 11 months. By the time the reinjection was implemented, roughly a year after last injection, usually, my PSA had risen to 10. This occurred three times, with the duration slightly lengthening each time. Then my RO passed me to an MO, who seemingly did not worry about PSA, and allowed it to rise eventually, after four years without ADT, to 36, when that MO fortunately for me, retired, and passed me to another MO. At that point, scans showed signs of metastasis, two lymph nodes in my neck, and something vague in my pelvic area. I resumed Lupron, and PSA fell back to <0.1, where it has remained now for four years since, and I have been on continuous quarterly since.
P.S. I am also having Prolia injection biannually to fight osteopenia, a side effect of Lupron.
So you had 30 day intervals in between injections if I understand correctly? 3 injections in 90 days which is one every 3 months but with a month wait period after each 3 months? That would have lasted about a year then ?
Please tell me about your skull lesions I'm most interested in this. They found a 2 cm lesion in my skull base on the clivus and it took out my 6 th cranial nerve for 6 months giving me diplopia than after being ok for a week it took out my 3 rd cranial nerve forcing my left eye to shut. Ok now but concerned about the lesion.
I described it thoroughly in my bio. Skull lesions on my skull showed on scans. I took very hot showers to eliminate them. Another lymph node above left ear was eliminated using heat. These things are easier to kill with heat when smaller.
I received intermittent Lupron shots (3 shots, 30 days apart) which reduced my PSA to <0.1 within a few weeks, and then the PSA rose to 4 after 10-11 months.
After monthly Eligard shots and then bimonthly, I found out that I could get six month depots. Much easier. Since is was .001 for more than 4 years, I talked MO into going on vacation since I have other serious med problems. It has been more than a month on vacation and still having hot flashes🙃
How long will you be going on vacation for ? What I'm trying to find out is if there is a recommended "safety window period". I was getting 3 monthly shots for two years was at 0.4 or similar then stopped for 2 years went to 2500 now taken 4 months and back down to about 200. I want to continue with shots but or personal reasons am two weeks late for my shot perhaps 3 if things don't pan out.
I am hoping forever. From what I have read, I our cancer is unpredictable. Once metastasized, the "seeds" have been spread and may sprout down the road. Changes in you PSA probably will be the only indicator.
mine took 3 years to get to 100 then went on to 350 and back to 150 in a year. Going in for a 3 month test in a couple days. Not expecting any big increase. I’m half asleep 24/7
I'm not a physician but it seems reasonable that missing an injection or changing timing of injections will have no impact. Typically, meds/drugs remain in our systems for x amt of time. I had 3 three mo injections and I still had side effects 1 and a half years after the last injection.Discuss with your doc but methinks all is well. PCa causes enough anxiety without adding this issue.
My Lupron shots are every 3 months, and Kaiser forgot to notify me or schedule an appointment for one of the shots last year. My testosterone tested at 30, and my PSA has remained unchanged, at < 0.1. That's one person's experience -- I was relieved that it did not appear to be disruptive.
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