I have been on an ADT vacation now for about 8 months, and it has been wonderful. My T is currently at 250 (I had low T before starting treatment) and PSA has come up from 0.000 to 0.1
PSA has been increasing by a factor of 5 every 8 weeks, so in 3-4 months it should be in the 2.5 - 3.0 range. At that point I will need to get back on some sort of treatment.
The main reason I took a vacation was because of heart problems that were arising from 3 years of ADT. I had and excellent response to the combo of Firmagon and Xtandi, but am very concerned about the heart risks of starting back up again.
Has anyone tried Xtandi as a mono therapy? I am hoping without the Firmagon, Xtandi may not be as hard on the ol ticker? Any thoughts?
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joeguy
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I started having tacycardia and skipped/irregular beats about 2 months after starting Firmagon and Eligard injections. I became resistant to the injections (PSA doubloing every 6 weeks) at about 2 yrs, and we added Xtandi to the mix. The tachycardia and skipped beats continually got more severe, and I started becoming short of breath when walking. A heart cath showed a 70% blockage in the left coronary. At that point I stopped ADT and started 5 or 6 new heart meds. All heart issues have now gone away, but I am concerned they will be back as soon as I start ADT again. Looking for some heart friendly PC treatment options....... I did have an amazing response to the Xtandi though (got PSA to 0.000)!
Yes, but the blockage is at the first main fork in the left coronary (the ol widow maker), so they believe a single bypass will be a better choice when the time comes (they dont seem to get too excited about blockages until you are closer to 90%......im only 70%)
What about cholesterol, blood pressure, are you on statins, ACE or beta blockers (could help your angina?). Check also diet (do you have a normal BMI?)!
My husband is on the same boat (he is going to begin ADT but has already blockages)... oncologists should work together with cardiologists!!!
Yes, the cardiologist started me on statins, blood thinners, ACE inhibitors, calcium chanel blockers, and a couple others I cant remember. As for BMI.....ADT certainly did not help my waist line.....It caused me to pack on about 25 pounds of fat.
For me, ADT has been a life saver on the PC front, but it wrecked me physically, mentally, and emotionally....... quite the trade off
maybe with all these medications for heart it will be easier having less symptoms when going on PC therapy.... hope so!
My husband will still begin therapy, so i am very worried. What I can say is that when he was on metformin he lost quite a bit of weight.... and many are taking it as some studies show benefit for PC when taking with statins. But it is not instead of ADT...
If you are well now , what about doing all you can to loose some weight, do exercices, eat more greens, try to do a sort of "reset"?
Yes, I have not been as diligent as I should be on the excersize and diet front. And dont let my experience with ADT side effects scare you. A lot of guys tolerate the ADT drugs very well......hopefull your hubby will be one of them.
Joe you know what you need to do, but I’m going to say it anyway.
You say that ADT ‘wrecked you physically, mentally and emotionally’ and ‘caused you to pack on 25 pounds of fat’, but of course It’s failure to compensate for your missing testosterone that actually caused it.
All the drugs in the world won’t save you from this and worse unless you change what you eat and how much, and exercise. You can do it! It would be transformative for you.
Absolutely nothing is as important as good diet and exercise when on ADT. Without it your problems will only worsen, and quickly.
Every one of your side effects can be minimized and much more. It is entirely up to you.
I am doing what I can on the diet and excercise fronts, but I think I have a better solution .......... I have stopped taking castration drugs like Firmago or Eligard, and have started using antiandrogen drugs like Casodex , Xtandi, or Darolutimide as a monotherapy. I am castration resistant, so the castration drugs have no effect on my PSA anyway, but they have a heck of an effect on my heart, brain, and general wellbeing.
Thank you for the reply. I too had heart problems after being on ADT for 9 years. Had to have a pacemaker and just recently developed rapid heart beat. Now on beta blockers and so far all fine. I am still on Lupron.
In looking back, I am sure the signs were there years before. But the MO and docs didnt check my heart. In fact they said there was no heart side effects from ADT!! When on ADT you feel crappy so I put it down to this as there are no heart problems in my family at all. Now I have a pacemaker and earlier this year was dx with rapid heart beat (which I found because I have an apple watch). I am on beta blockers now. As I have learnt the head way you have to be super careful and check and check and check. Get many opinions. I now also have two cardiologist.
I have figured out that urologists and oncologists just dont seem to worry about the heart problems they may be causing with PC treatments because it just isnt their area of expertise........ best to you too
I have been on Xtandi as a mono therapy for 6-1/2 years. Doc was reluctant to drop Lupron, I hated it. He now is using Xtandi as mono therapy for a number of men who have similar circumstances. My T which was <1 in now 225.
Is it keeping your PSA nice and low? Were you having any heart issues, or just not liking the Lupron side effects when you switched to Xtandi as monotherapy?
I started back on casodex as monotherapy. Depending on how well it works, I may switch to xtandi or possibly Darolutamide monotherapy. My uro keeps telling me if I don’t get his Firmagom or Eligard injection along with the Casodex, I will grow huge man boobs. Have you had any problems like that with monotherapy?
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