Diagnosed 11 years ago, I am T3b non-metastatic and have had one month of Bicalutamide and six months of Prostap (Lupron). Indeed my PSA has dropped dramatically and my testosterone is currently not in production mode. This is common treatment prior to IMRT.
The effects have been quite severe. Apart from the hot flushes, which occur every 30 minutes or so, badly affect sleep patterns, but are bearable if uncomfortable, I have gained real problems including severe muscle weakness and great stiffness and pain in my knees, of all places. Fatigue is another problem.
But, cognitive decline is the worst of all. I took a look at my thesis for my Masters last week and failed to understand much of it. Short term memory is awful, long term memory has become a matter of referring to photographs and videos to remember important events and I am unable to process logical arguments or engage in reasoned debate, usually because I cannot remember the point of the conversation.
I should say that 7 months ago, I walked 5-10 miles a day, cycled, spent many happy hours under my very needy classic car, had no musculo-skeletal problems, perfectly functioning knees and my mind was quite lively.
If this had happened over a long period of time I would have put it down to age, but it has happened over a few months so I ascribe it to Prostap and its reductive effect on testosterone i.e. chemical castration, but I concede it may be just me.
Anyway, I've switched back to Bicalutamide which creates similar problems but deals with testosterone in a different manner.
But, I am alive. Whether being alive is worthwhile if the cognitive decline continues is debatable, but I will be having IMRT soon so we shall see.
I wish everyone with this illness the very best of luck and hope that my experience is not the norm for most. I would be very interested to hear your experience of this drug.
Live long and prosper as Mr Spock would say!
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Jon1923
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Please try weight training. Hire a professional to get you started. 3 days a week for an hour minimum. You will be pleasantly surprised with the results within a month.
Congrats Jon on surviving 11 years post t3b diagnosis! ADT (Lupron) is tough for most people, but exercising and getting more blood flow over the brain helps with cognitive impairment. I had ADT for 18 months and my best days started with a run to get the heart rate up. If I didn’t exercise in the morning I felt like I had brain fog the rest of the day. Best to you.
I'm giving it a go timotur! I can just about stagger round - I wouldn't call it running, since I'm sure it looks daft to onlookers! It's more like a pensioner (which I am) rushing at 1 mph to get his pension before the office closes! Usually, I find the office was never there in the first place😂 As an amateur racing cyclist I used to cycle up to a hundred miles every evening after work. I remember how that bloke felt and occasionally he comes back to egg me on 😉 Best to you, too.
My husband has similar issues. It’s very frustrating for him. However, he faithfully goes to the gym, lifts weights, plays Pickleball and cycles 15-20 miles most days. By nature he is very disciplined but he has to REALLY push himself to do all this and it makes a HUGE difference!He also sometimes takes Vyvance or Ridlin (?) on days he has to focus on details and prolonged projects etc. He is 69. Had RP in 2017. Dealing with his 3rd recurrence!😢😢
Your husband has more dedication than me! I tried the gym, but finally settled on walking as much as possible and using resistance bands at home. Wish him the best from me.
I have noticed slight cognitive decline, mostly with recall of things I clearly know while watching Jeopardy. Increased my reading and do cross words religiously. Hoping it doesn't get worse. I too find working out is huge.
In addition to renewed vigor in exercise training (maybe with a trainer if you can afford one), some guys see some relief with estrogen patches. Especially important to take 10 mg/day tamoxifen to prevent gynecomastia now that you are only taking bicalutamide.
Thank you. Fortunately, my current oncologist has me on Tamoxifen already, so I'm pleased to hear it's the right drug, having had a previous oncologist who really had no idea about very much, or perhaps just didn't care. We are all human.
I can relate to most of those side effects when I had my one & only shot of Lupron. I was active before that & it changed my life but now still here after 12 years.I strongly recommend a gym trainer & keep active. Use it or loose it as they say.
Jon1923,. The experience you went through after using Lupron is almost exactly what I went through in 2013-14, perhaps mine whas even worse. Just yesterday I had lunch with a couple of friends that I've known for more than 50 years and they know about my health issues including cognitive. They were not surpried when one of them talked about a Viet Nam trip we took a few years back and I knew nothing about it, or better yet, I had totally forgotten. My wife died of Altheimers in 2020 after 5 years with the disease. I was her primary caregiver. I know that because I am told and of the almost daily notes I wrotre. Today, I don't remenber attending her funeral.
You wrote..."But, I am alive. Whether being alive is worthwhile if the cognitive decline continues is debatable, but I will be having IMRT soon so we shall see"... Only you can answer that, but I am still here 10 years past the effects of Lupron hit me hard. I also ask myself that question... was it worth it? Next moth, if I am still here, I will turn 86. For me, it was worth it.
As a side comment, I was on patched for 7 months, I don't know if they helped my memory but as TA mention, they definety helped lower my cancer burden. Good luck going forward from here and let's hope that IMRT is a big success .
Appreciate your post middlejoel, I like to hear of success stories after the devil's drug, Lupron!
I think the psychological aspects of PCa are under appreciated and although much of it is physical, I try to keep my brain ticking over with quizzes and an active social life. Without those and the support of the best wife in the world and terrific children I think I would have passed from this mortal coil some time ago!
I was sad to hear of your wife. Alzheimer's is a foul disease that robs people of vitality and identity. That you cared for her is indicative of your strength. That you cannot remember much of it is heartbreaking and I feel for you, my friend.
I truly hope your success continues, you get to the hundred and beat this damn thing! There is nothing I would like better that laughing at it, as I trundle off
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