Good Evening Friends:
My husband (and love of my life) got his “loading dose” of firmagon on the 16th of May.
We are getting a psma scan at UCLA on the 24th and seeing Dr Rettig on 26th of June.
We are thinking he is going to wait to have the next shot at UCLA, which will put us about 2 days beyond its 38 day effectiveness. Any thoughts on this?
I’m very sad about all of this today. Some days are better than others but today somehow the gravity of it all sunk me down low.
Wisdom appreciated. 💛
No problem getting the shot a few days late - the testicles don't recover overnight. Try to stick with what you know in the present moment. Easier said than done, I know. But if it's restricted to pelvic lymph nodes, this may be curable - talk to Dr King.
Hi Tall Allen....This is Barbara Lockridge...I am so sorry....but I just tried to open your last reply to me re: Rob and trying to get scans and what we might do if something shows up on the scans....in the process, I lost it and my whole thread of responses???????!!!!!
Could you possibly please send me your response once again......
Do you mean in response to your earlier thread?
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Just click on your name to get to any of your threads.
It takes time for the testosterone to recover after stopping firmagon. Two days will not make any difference.
Please fill in some blanks..His Gleason score ? Scan results ? Any Mets ? His PSA at Diagnosis ? Makes no difference who gives him the ADT shot, and a few days will make little if any difference..
Hi Fairwind
Stage 4, Gleason 8. Iliac chain lymph involvement including a probable external illiac node.
Diagnosed 6 weeks ago. Started firmagon about 3.5 weeks ago.
Bone scan clear.
Wonderful people on this site who respond to questions with helpful information (and people who are here sharing their stories) you are my everyday heros.
The course of this disease feels particularly cruel to some. And I don’t know how we will get through all of this, but I know we will.
And, to quote a really good author/ book I can’t remember (it may have been: When Breath Becomes Air)
It’s 100% mortality rate in life.💛💛
Few days will not make a difference, I remember that I worried for my first pre-surgery Lupron monthly injection and the urologest said the effect will last 45 days after injection. Firmagon is much potent (and expensive) and likely last longer.
Also consider changing diet for your husband and other life modifications.
😊
Just love the puppies. Don't know it the kid's did the artwork, or if that is modern art, but that is great also.
Diagnosed in late 2012, metatastatic, G8, I received hormone therapy beginning with Eligard and Casodex. Switched to just Lupron in September 2016. I continue taking 6 month Lupron injections. No radiation or chemo yet, nor any second line drugs like Zytiga, Xtandi, etc. Still hormone sensitive.
Very importantly, from my experience, live in the present moments, don't dwell on the "what ifs" of future possibilities. And especially don't give in to the temptation to write scenarios and scripts for future events. They are inevitably grim and inaccurate. In a few months you will both be coming out of the dark cave and realize there is a lot of living ahead for both of you and those precious dogs.
CalBear74
Hi CalBear74
Thank you for your response. Did you have any evidence of lymph or bone involvement at diagnosis?
I was just reading about your supplement history and we are currently incorporating some of the items you are using.
Best, ☺️ Dachshundlove
Yes, two bone Mets at Dx which are no longer visible on scans. I am a big proponent of IP-6.
"When Breath Becomes Air"... And my favorite "Not to fret... the sun hasn't set... Yet"
I once had a Dachshund named Homer (the Greek). The NY Mets had/have one named Homer (baseball) years after our dog was gone. Well our Homer could never climb the stairs in our house so we installed an escalator just for him....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 06/12/2019 4:52 PM DST
What I’ve yet to meet is a dachshund who has been fully potty trained... it’s a good thing the puppies are cute, because if they weren’t, they might just be pushing up daisies..
Hi there,
I do not understand this reference to the 38 days, surely you mean 28?
The half life of the initial loading dose is 43 days but it is normal to give the next dose after 28 days or monthly as the half life is 31 days.
Obviously if you are on the 28 day regime you will get thirteen injections per year while if you are on the monthly regime you get twelve.
The initial dose saturates the system with degarelix and it blocks up the receptors for GnRH in the pituitary completely, the follow up doses just block up any receptors that may have come free since the last dose.
I am on the monthly regime so I time my doses so that they are roughly thirty day apart but I am not too precious about this as it does not really matter, for instance I try and avoid weekends or holidays, even if the level of degarelix in the body falls below 50% of the level after an injection it does not matter as that is still enough to keep everything locked down.
I have had my testosterone measured and it is below the limit of detection on the normal run of the mill test, obviously I still have a little from the supra adrenal glands but it is like I have been castrated.
They did an experiment using degarelix on sex offenders, they gave them them the initial 240 mg dose and then followed that up with three monthly shots of 80mg, their testosterone levels did not hit the floor and stay there like on the regime for prostate cancer but they went to zero and they did not recover above hypogonadic levels in between so there was loss of libido, erectile ability, etc.
This is the Canadian guidelines which is what they use in France as well.
Hi GeorgesCalvez
Thank you for sharing this. The nurse at the clinic told us the shot is good for 38 days, although they tell you it’s a 30 day shot.
It’s interesting to read the drug facts, I hadn’t seen those before, so thank you.
If you don’t mind me asking, what stage are you and what have you done this far in the treatment realm?😊
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