PSA Results - time to act

Ken,
If I had an opportunity for a multidisciplinary meeting about my PCa, I’d grab it. Not to second-guess SRT — hard to imagine that will happen — but to hear how they discuss the case among themselves and respond to each others’ observations.
I completely agree that once the big decision is made, it’s time to trust your treatment team and go with their recommendations as to details. If they prefer Firmagon, Firmagon it is. Same for where to do the RT. Free your mind so you can live the other parts of your life fully.
Rich.

Best wishes from me too, Prato. The multidisciplinary meeting may become the standard of care — we see plenty of evidence here of specialists who are experts in their field but novices in others, and the best practitioners are those who keep learning. Indeed, I can imagine any doctor who takes part in a multidisciplinary meeting benefitting from the perspectives of others.

Update, I got a call this afternoon (Sunday) from my RO, we spoke for about 10-15 minutes re whether to do Hormone therapy. He said it’s hard to quantify the benefit of doing adjuvant ADT with radiation, but in my case, with a low 5% grade 4 cells in my G7(3+4), if he had to come up with a number he would say it would give me a 5-10% added advantage. It’s really a judgement call balancing quality of life with how much value I place on a a successful outcome (paraphrasing). He said it’s entirely possible that SRT alone would do the j0b, but a question to ask becomes, if it doesn’t work that way, would I look back and regret not doing ADT. Again, I’m paraphrasing. But I gave it back to him, saying “so it sounds like you are saying, if I want to give myself every possible advantage and chance for a cure, the hormone therapy would be worth doing”. He said exactly, you understood me perfectly. He added, that if I was totally ambivalent about ADT, and left if to him, he would do ADT.

That last sentence clinched it for me. Zelefsky is at the top of the RO food chain. And I’m burnt out from all this. So I’m going to put myself in his hands and become a typical patient, stop analyzing, and do what he says. I’m going ahead with 6 months of Firmagon.

I have to call the office tomorrow to set it up. I’ll probably get my first of 6 monthly shots on Tuesday or Wednesday. He said we can start the planning right after Labor Day, and I’ll start treatment some time between the middle to end of September. Which is perfect because that will allow me to head south to Florida for the winter right after Thanksgiving.

Not going to say I’m not scared (mostly of the Firmagon). But I can handle whatever it is, I just hope it works. Otherwise things become complicated I guess.

I was totally unprepared for the call, I had sent a message to his assistant through the MSKCC portal, and expected her to reply on Monday. But apparently he was working and picked it up . I felt good about him calling me. Tells me he’s a not just a great doctor, but a good guy.

I guess I’ll be posting in Skypilots SRT & ADT thread soon

Sounds like a plan to me.

Now get it done!

Andrew

The reason he uses Firmagon, ed, is because it drops testosterone much faster, with no surge, so no need for casodex.
From what I read in the Firmagon website, it drops T levels by 96% within 3 days.

The downside is it’s a monthly shot.
Hopefully the nurses at MSKCC are as good as yours was, Ed. I know there can be a reaction at the injection site.

Rest easy in your decision and focus on winter in Florida. You’ve got this!

One thing that might make it easier to think about your decision with the ADT is to stop thinking of it as a binary yes or no decision and think of it instead as where on the continuum of possible values you want to fall. For ADT as an adjunct to radiation the range is generally 0-36 months. The higher you get in the range the more side effects you will need to deal with. The usual values we see are 0, 3, 6, 12, 18, 24, 30, and 36 months. Obviously zero months would have the least side effects (only what's caused by worrying about the decision) but three and six months are still pretty easy time -- over quickly with generally fast recovery to your normal self. A year is starting to take a noticeable bite out of your life, 18 months is a bit more, and two years or more pretty much totally sucks.

Where on this range is your RO talking about if you decide zero isn't quite enough?

Pratoman said...

That last sentence clinched it for me. Zelefsky is at the top of the RO food chain. And I’m burnt out from all this. So I’m going to put myself in his hands and become a typical patient, stop analyzing, and do what he says. I’m going ahead with 6 months of Firmagon.

Having read almost all your posts...yes, I would go that way, too, given your situation. You probably realize that, if you didn't add the ADT, you would spend those 6 months worrying about whether you were losing that 5-10% extra insurance. I probably would worry also. Bet the six months will fly by, and you will then know u did everything you could.

Thanks for posting details. I may be in your same boat down the road. You have the best care, so it is helpful to know what the top-shelf docs are thinking these days.

Robert

Ken, ditto to what everyone else said, and what you yourself said best. Try to relax now and go with the flow. No more worrying, at least for a while. Just get thru October and November, and try to enjoy the winter in Florida. It will be quite a while before you will have any meaningful PSA tests once you've hit the pavement, so there will be no more decisions until later next year... and they won't make any difference anyway. The plan is pretty much set in stone. No second guessing. You're already doing everything possible. Good luck to you!

Thanks all for the support.

Ken,

It is not the side effects from Firmagon per se, it is the side effects from low-no testosterone. So whether you use Firmagon, Eligard, Lupron, etc. the main side effects are the same.

I had both Lupron and Eligard. The side effect differential was due to the different injection administration. Eligard is deposited in the belly fat near the navel. It is viscous and takes a large needle and about one minute to complete the injection. Lupron is very liquid an is given in the high hip area. Both hurt at the time. Lupron injection hurt for a day and then was gone. Eligard injection was fine once the needle was removed but left a marble size lump for about two weeks before subsiding.

The real side effects were from low-no T. For me that included some weight gain, loss of energy, hot flashes, loss of libido, a more relaxed demeanor, less tension when things weren't going my way, a more thoughtful and pleasant demeanor (according to my wife) and an improved ability to watch and even enjoy the Hallmark movies around the holidays. All in all pluses and minuses that fairly well evened out.

I had no depression, nor bad feelings, no brain fog, never forgot where I was (anymore than normal before the ADT), worked full-time and never made any more or different errors than I otherwise would have. But, if you seek these problems by fearing that you will experience them, then they will become self-fulfilling. If you know you are going to be a bit impaired, then just slow down, improve your concentration, remove distractions and eliminate double tasking. Isn't that what we all do anyway when we know we are performing important tasks?

It will be what you make it to be. As real as the side effects can be, from my experience and thousands of others, they do not have to be debilitating and I found mind over matter did prevail. Anytime I was down due to the side effects I simply went outside for a long walk or bike ride. Fresh air, exercise, and the appreciation of nature always had a very positive effect.

Superb input and advise from JNF.....

JNF said...
Ken,

It is not the side effects from Firmagon per se, it is the side effects from low-no testosterone. So whether you use Firmagon, Eligard, Lupron, etc. the main side effects are the same.

I had both Lupron and Eligard. The side effect differential was due to the different injection administration. Eligard is deposited in the belly fat near the navel. It is viscous and takes a large needle and about one minute to complete the injection. Lupron is very liquid an is given in the high hip area. Both hurt at the time. Lupron injection hurt for a day and then was gone. Eligard injection was fine once the needle was removed but left a marble size lump for about two weeks before subsiding.

The real side effects were from low-no T. For me that included some weight gain, loss of energy, hot flashes, loss of libido, a more relaxed demeanor, less tension when things weren't going my way, a more thoughtful and pleasant demeanor (according to my wife) and an improved ability to watch and even enjoy the Hallmark movies around the holidays. All in all pluses and minuses that fairly well evened out.

I had no depression, nor bad feelings, no brain fog, never forgot where I was (anymore than normal before the ADT), worked full-time and never made any more or different errors than I otherwise would have. But, if you seek these problems by fearing that you will experience them, then they will become self-fulfilling. If you know you are going to be a bit impaired, then just slow down, improve your concentration, remove distractions and eliminate double tasking. Isn't that what we all do anyway when we know we are performing important tasks?

It will be what you make it to be. As real as the side effects can be, from my experience and thousands of others, they do not have to be debilitating and I found mind over matter did prevail. Anytime I was down due to the side effects I simply went outside for a long walk or bike ride. Fresh air, exercise, and the appreciation of nature always had a very positive effect.

Jack, Thanks very much, your post is both reassuring and wise (and insightful). I was going to email you since we are both in the same business, and its a concern for me. But you've answeered my question.

BTW, my understanding is that Firmagon also leaves a bump at the needle sight.