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I start ADT Wednesday...

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Prostate Cancer
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Posted 6/2/2019 5:49 PM (GMT 0)
I got back the results of my PET scan last week and was thrilled to find that teh cancer had not escaped!

This changed the plan from 2 years of ADT and 9 weeks of radiation or surgery to 6 months of ADT and 5 weeks of radiation or surgery.

I wanted to avoid surgery but had decided it was better than 2 years of ADT plus 9 weeks of Radiation. So now I am going with the ADT and 5 weeks.I am very happy to be able to do this. .

They are starting with a one month shot of Degarelix.

I did a search here and read some tough stories about this drug but it's protocol at Sloan and has to be better than surgery. (I hope)
Posted 6/2/2019 6:04 PM (GMT 0)
i'm not sure I ever saw those choices before. good luck to you man!
Posted 6/2/2019 9:00 PM (GMT 0)
Mentor, I started at Sloan, with Degarelix, with Dr Zelefsky. I know he prefers Degarelix /Firmagon, over Lupron. A big advantage is that Degarelix brings T down to castrate levels ,in an average of 3 days, vs Lupron 28 days. Another (supposed) advantage is that Degarelix is thought to be less likely to raise risk for heart disease. I would assume this means less likely to,wreak havoc with lipids, and metabolic syndrome. Being on Lupron, I experienced both.

The downsides of Degarelix are also two-fold.... first, they are monthly shots (although o read that they are working on approval for a 3 month shot). Second, the reaction at the injection site can be rather tough on some men.

I experienced the latter issue, and after the second shot they switched me to Lupron.
I am almost 4 months after the last shot ran it’s coyrse, but still feeling the effects.
It’s not fun, but it’s manageable. Be sure to get into a routine of exercise, and good diet, NOW, don’t wait for the weight gain to show itself, like I did.

Good luck.
Posted 6/2/2019 10:41 PM (GMT 0)

Pratoman said...
Mentor, I started at Sloan, with Degarelix, with Dr Zelefsky. I know he prefers Degarelix /Firmagon, over Lupron. A big advantage is that Degarelix brings T down to castrate levels ,in an average of 3 days, vs Lupron 28 days. Another (supposed) advantage is that Degarelix is thought to be less likely to raise risk for heart disease. I would assume this means less likely to,wreak havoc with lipids, and metabolic syndrome. Being on Lupron, I experienced both.

.

I will only be on Degarelix one month then switched to Lupron for 3 months. I don't recall what after that, I believe it is two more months of Lupron. My doctor is also Zelefsky at Sloan also.
Posted 6/3/2019 12:40 AM (GMT 0)
Mentor,
I just finished a year on Degarelix. Just so you, know, the shots in the abdomen are nowhere near as bad as you might expect. Receiving the shot is no worse than a typical blood draw in my opinion. Almost no sensation other than the initial jab. However the site does sting starting a few hours later, is worse the next morning and then declines over a few days back to normal. For people, like me who are undergoing long-term treatment with Degarelix, the first shot is a larger dose administered as two shots. Again very little pain from the shots when administered. But the large dose of the first shot did sting more in the following days than all the other monthly shots that followed. I mean this as reassurance that it isn't nearly as bad in reality than it might be in your mind before hand. Also, FWIW, I had minimal side effects on Degarelix and have asked to go back on Degarelix when I have to resume treatment. Maybe I'd do as well on Lupron. But based on what I know so far, I will gladly take a monthly shot to not have the side effects most other people report from ADT.
Jim
Posted 6/3/2019 2:44 AM (GMT 0)

Bohemond said...
Mentor,
I just finished a year on Degarelix. Just so you, know, the shots in the abdomen are nowhere near as bad as you might expect. Receiving the shot is no worse than a typical blood draw in my opinion. Almost no sensation other than the initial jab. However the site does sting starting a few hours later, is worse the next morning and then declines over a few days back to normal. For people, like me who are undergoing long-term treatment with Degarelix, the first shot is a larger dose administered as two shots. Again very little pain from the shots when administered. But the large dose of the first shot did sting more in the following days than all the other monthly shots that followed. I mean this as reassurance that it isn't nearly as bad in reality than it might be in your mind before hand. Also, FWIW, I had minimal side effects on Degarelix and have asked to go back on Degarelix when I have to resume treatment. Maybe I'd do as well on Lupron. But based on what I know so far, I will gladly take a monthly shot to not have the side effects most other people report from ADT.
Jim

Hey, thanks!I really needed this post. I have read mostly tough stories and some horror stuff.

I will be getting the two shots Wednesday.

I am real glad to learn the sting starts later. I may well have thought something was wrong if it stared hurting later as I was expecting it at once.

Post Edited (mentor5959) : 6/2/2019 8:55:54 PM (GMT-6)

Posted 6/3/2019 11:44 AM (GMT 0)
Mentor... here's how I explain to people about ADT and it's effects. I don't feel like Tarzan wanting to swing from the vines chasing Jane! but so far it's keeping me alive to play with my grandson, spend quality with my great wife actually I believe that we have grown closer together she's really been understanding even when I start crying when reading a story about a 13 yr old girl who has stage 4 ovarian cancer. The only advice I can offer; do as much exercising as your able to even if it's walking this will help keep the weight from increasing so fast and so much. The one good thing is if you forget something, especially something on the honey dew list you can always blame it on Lupron!!!! LOL I use that excuse at least once a day! 😜😜😜

Larry
Posted 6/3/2019 1:06 PM (GMT 0)
Mentor,
I’m also a Zelefsky patient at Sloan. I started with one Degarelix shot and went on to Lupron every 3 months for a total of 18 months ADT. From my experience, the degarelix was not painful, but it did leave a small grape size lump at the site which lasted for quite a while. The lupron injections were not bad at all. It’s the side effects.
Just curious. Did Zelefsky discuss SBRT with you? Radiation in 5 days rather than 5 weeks. Idk if your diagnosis fits with SBRT, but i was just wondering.
Posted 6/3/2019 1:17 PM (GMT 0)
Hi Mentor,
I was on Lupron for 7 months and fortunately for me I had a pretty easy time of it. Hot flashes were my biggest problem, especially at night when I was sleeping.
I agree with the others here that exercising really seemed to help. My wife and I either walked 3 or so miles a day, or took a long bike ride. I also worked out 3 or 4 days a week on our home gym. I never really had any noticeable fatigue,except for the occasional "cat nap" before dinner with the TV on!
SkyPilots description of the sexual side effects was spot on.
Good luck and keep us posted!
Posted 6/3/2019 1:45 PM (GMT 0)
Started Casodex 4 weeks ago and Lupron 2 weeks ago. Main side effect of note is Nausea in the morning (started four days ago). Also I am typically of a patient temperament but have noticed a notch higher on the "irritability" scale. Am aware of this and have managed so nobody notices but it takes effort on my part.
Posted 6/3/2019 10:00 PM (GMT 0)
As an aside, if I were to recur after salvage, and had to go on permanent, ir long term ADT, I’m not sure what I’d do. The cardiac/lipid/metabolic side effects scare me. I might ask for Degarelix, and just tough out the issues I hve at the injection site. If I might put off starting adt as long as possible, like PSA reaches 20. And just take my chances.

Mentor, obviously, not everyone has the reaction I did to the Degarelix, I hope you don’t either. Good chance that will be the case.
Posted 6/3/2019 10:14 PM (GMT 0)

Dogdays said...
Mentor,
I’m also a Zelefsky patient at Sloan. I started with one Degarelix shot and went on to Lupron every 3 months for a total of 18 months ADT. From my experience, the degarelix was not painful, but it did leave a small grape size lump at the site which lasted for quite a while. The lupron injections were not bad at all. It’s the side effects.
Just curious. Did Zelefsky discuss SBRT with you? Radiation in 5 days rather than 5 weeks. Idk if your diagnosis fits with SBRT, but i was just wondering.


I am not a candidate for SBRT or the 5 day radiation.
This was the opinion of my radiologist at Columbia Presbyterian and from Zelefsky at Sloan.
Posted 6/5/2019 12:08 AM (GMT 0)
Hey all, one last question, it's no problem if I go myself for the first double shots of Degarelix or I should have someone with me for the ride home?
Posted 6/5/2019 12:19 AM (GMT 0)
You should be fine after the double shot, to go yourself
Posted 6/5/2019 12:27 AM (GMT 0)
Thank you!
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