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How long til you know if HT is working?

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Posted 5/25/2012 7:41 PM (GMT 0)

Hi All

My husband just started taking casodex this week, with lupron to follow in a few weeks.

Do you know how long it takes to see if you'll respond to HT?  In two ways -- when do they usually do the official testing to see if you're responding, and then, if the timing is different, when might you start feeling a difference? 

If you've followed this course, how long did you wait after starting casodex to start lupron?  I ask because our urology practice seems to be planning not to turn on Lupron anytime soon, and honestly I suspect it might be because our doctor is out on vacation (yes, we are in the process of finding a better doctor, in part with the help of people on this board).  

thanks in advance for any info

Katie

Posted 5/25/2012 7:45 PM (GMT 0)
I don't think it matters for this question, but here are some stats (I thought I'd created a signature that would always post this, but obviously did it wrong...)

He is 58 years old
G9 (5+4)
last PSA 62 (up from 49 a couple of months earlier)
diagnosed earlier this week with metastatic PC, with lymph node involvement and metastases to bones throughout skeleton (pelvis, spine, ribs, arm, leg)

His diagnosis was triggererd by symptoms -- a doctor visit prompted by persistent back pain
Posted 5/25/2012 7:57 PM (GMT 0)
Kathie

It is standard practice to be on Cassodex at least 2 full weeks before getting Lupron. The practice is i place to stop any "flares" which may happen if start on Lupron without the Cassodex.

The VA where I go, I get Lupron (or equal) once every three months, the PSA would be tested on the three month intervals.

For the bones - the HT could ease that pain. More than one of our brothers has had that happen.

The other thing to consider - well actually I would TELL the doctors - have Zometa for bone health. I get that every month, its a 30 minute or so infusion.

HUGS!

Bud
Posted 5/25/2012 10:59 PM (GMT 0)
Infohound,
It may take three or more months on HT to see the full results. Casodex should drop the psa rather quickly, in a few weeks. The response you would like to see is testesterone below 20 and psa at .05 for at least three months. This is considered a very favorable response to HT. I would also recommend "Primer on Prostate Cancer" by Dr Stephen Strum. Dr Strum uses various other markers to monitor if HT is doing what it was intended to.
Posted 5/25/2012 11:15 PM (GMT 0)
Hi katie

I started HT Feb. 15 with a PSA of 2200.00, wide spread bone mets, and alot of pain. 12 weeks later my PSA was 3.13, and my pain was all but gone 2 weeks after starting HT. Understand though that my results are in no way the norm as far as I can tell. In my case I was mistakenly started on eligard before cassodex, and I had a flare that landed me in the hospital for several days.

Post Edited (Oldphoto) : 5/26/2012 5:07:29 AM (GMT-6)

Posted 5/28/2012 4:01 PM (GMT 0)
Infohound.
Everyone is different when it comes to peeking out on HT
Most see noticeable results withing one month of a 4 month shot of Lupron but that may very.
In your quest for info, I do not recommend Snuffy Myers but there are others that may shed some light.
Art
Posted 5/29/2012 1:31 AM (GMT 0)
Hi All

Raddad -- thanks for the info and the zometa reco. Sounds like something he should have. Before we knew to look for PCa, we did an x-ray to figure out why he had so much back pain, and there is a spinal compression and an "anomaly" that they said might be a fracture. So I definitely worry about how fragile his bones may already be, and will see if we can't get some zometa going. I also, love your HUGS and truly, responses on this board do provide some hug-like comfort. But even more I like your Keb Mo song -- I listened to that and found it a comfort and an inspiration. I hope we can do like you and make this some good come of a crummy diagnosis.

John T -- thanks for the specifics -- I like to know what I'm shooting for. I got the Strum book on a kindle (to avoid alarming my kids, who don't know about this Dx yet, we're waiting to tell them until we know more) but I need paper. It turns out I'm not an e-reader type, and also that that book doesn't translate well -- lots of key info in tables that are either cut off or reduced to be too small for my old eyes. You've given me the motivation to go pay for the old-school version.

Oldphoto -- the flare sounds awful. I'm sorry you had to go through that, but wow I'm hoping we can walk in your shoes as far as the speedy and dramatic results.

Finally Art/Sickof... -- thanks for the info. I'm curious about the Myers mention though. If you're willing, can you let me know why you DON'T recommend him? I definitely do better with more info, hence my infohound name, but my husband does not. I wish I could go to a consultation without him but I can't. And for him, hearing the details again and again is torture. So it's been a sales job for me to get him to agree to get second opinions (our first, from his urologist was not good -- they told my husband the news on the phone while he was driving, told him he shouldn't treat aggressively because it won't extend his life but will reduce the quality of the time he has left, and said they couldn't schedule an in-person appointment for about 5 weeks because they're busy...who are they making time for if our case isn't serious enough to get their attention?). Anyhow, I was thinking Dr. Myers was our best hope, and want to make sure I'm choosing wisely because I may not be able to get him to go to another doctor.

thanks again to all of you, I am very grateful
Posted 5/29/2012 1:48 AM (GMT 0)
Infohound, Art - if you want to discuss negative information about named doctors/facilities, please do it by private email, off-line from the board. There are legal risks for the owner of the site.
Posted 5/29/2012 2:00 AM (GMT 0)
Info I cannot explain on this forum my reasoning behind ,y statement but if you email me I will explain about Snuffy
Art
Posted 5/29/2012 2:01 AM (GMT 0)
wow I got a lecture before I had a chance to respond, good job guys
Art
Posted 5/29/2012 12:53 PM (GMT 0)
"I'm hoping we can walk in your shoes as far as the speedy and dramatic results."

I hope you can too! I really do.

Rodney...
Posted 5/29/2012 5:09 PM (GMT 0)
Infohound

I started casodex 7 days before the first Lupron shot. Did a PSA and t test one month later and then a sec0nd test a few weeks after that. It took a good 6 weeks to cut the PSA in half, lower the T level to 13. Wasn't the greatest result. I get retested in another week and get shot number 2 in 2 weeks.
Posted 6/2/2012 4:42 PM (GMT 0)
Katie,you have been in my thoughts and prayers......we are here right with you!!!!!!
Posted 6/3/2012 3:31 AM (GMT 0)
I promised an update after our consultation at Mayo last Tuesday, but I hadn't posted that yet because it's still up in the air. I thought we were going in for a two hour consultation and would walk out with questions answered and recos and advice for a doctor at home to potentially follow. They treated it more like a new patient visit and ordered some testing that meant we needed to stay a few extra days. One of the tests was the choline PET they have that is not generally available elsewhere, so we stayed to get the benefit of that.

We were supposed to have a meeting at the end of the week to get the results, but that appointment was cancelled (by them, I think the dr. had an emergency). I expect to have a phone consultation Monday and will share my take on that afterwards.

My husband had been taking Casodex for about a week prior, to prevent flare from an eventual Lupron regimen, but Mayo recommended Firmagon instead (like it's speedy effectiveness, dislike that name!). We took them up on that and he got two Firmagon injections on Thursday afternoon.
Posted 6/3/2012 2:05 PM (GMT 0)
I will follow with interest.Thanks for the update.prayers
Posted 6/3/2012 3:38 PM (GMT 0)
A lot of -- since your husband is taking Lupron and I mentioned Mayo recommended Firmagon instead, I thought I'd explain. They recommended Firmagon because of Ted's cancer's aggressiveness. Lupron requires a few weeks of casodex in advance, so we weren't yet able to get Lupron. Firmagon doesn't cause the testosterone flare that Lupron does (that the casodex lead-in prevents), so we could get Firmagon immediately, vs. waiting for Lupron. Additionally, Firmagon works a little faster -- so less lead time, and faster post-shot results.

On the downside, it costs more and requires monthly shots, so I'm assuming once we have the "jump start" advantage, they'll switch us over to Lupron. It's also supposed to be a more painful injection, but Ted didn't have any problem with the injection itself, and minimal soreness afterwards. Apologies if I'm telling you a bunch of stuff you already know.
Posted 6/3/2012 5:56 PM (GMT 0)
No appologies are ever necessary.Any info is truly appreciated.Ted should see a great reduction in his pain As our dr.said the wife can usually tell when the medication is working before the patient because they notice that there is less complaining(no offense meant to the men here) and it actually was true in our case.I found out my husband is getting injections of trelstar not Lupron .They are all in the same category and pretty much do the same thing.I guess each urologist or oncologist has their favorite or their own opinion on which work better.The more I come to understand is that the protocols seem to follow the same path although the the outcomes differ with each individual.All the dr. we saw this week said to stay off the Internet because at this point in his treatment it will only cause more worrying than it is worth and I myself find some truth in that.Even though their is a wealth of knowledge on this site and others I did find myself comparing stats which caused more worrying and stress.Also there are not a lot of men with the same stats and each individual has different results with different drugs.Feel free to email me anytime.I will check in here from time to time to check on the wonderful people here .They will always be in my thoughts and prayers. Pls feel free to email me at anytime.just click on my name and it will take you to my profile with email address.

Luci
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