Hi everyone. I'm sure there must be a discussion about this elsewhere but I can't find it.
One month on Enzalutamide caused significant brain fog. The brain fog was so bad that I could not remember the quantities for a recipe that I make every week!
I am now being switched to Apalutamide. I have read the information leaflet and been horrified at the potential side effects so would be interested in the experience of others with apalutamide.
Good Morning Ever hopeful
You are correct - there are a few threads so here's the links:
RE: Abiraterone or Enzalutamide
I haven't read them but these are 3 of the threads I have found - I do hope this helps. If I can do anything else for you please let me know.
Best wishes - Brian.
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Hi Ever hopefully
I've been taking Enzalutamide for about six months and Zoladex injections for about a year. I have stage 4 prostate cancer that has spread to my pelvic regions, and my original PSA level was 110. Now, my PSA is in single figures and continues to drop. However, I do experience severe sweats, brain fog, and short-term memory loss, which sometimes feels like the onset of dementia. Before cancer, I was a marathon runner, but due to fatigue, I'm now only able to manage brisk cross-country walks of about 5 miles, which I enjoy and feel better for. I'm going to continue with Enzalutamide, as it's better the devil you know. I wish you well in your treatment choice.
Hi Jonney I’m interested in your journey so far, because your initial PSA is more or less the same as my husbands. I looked in your profile but it’s blank atm. What is your treatment plan other than HT are you having full pelvic RT or Chemo? I always like to look to see if different treatments are available or new in.
Best wishes
Lorraine
All i know is i'm stage 4 cancer. The oncologist mentioned 5 years + life expectancy as my cancer cant be eliminated so its all down to how i respond to treatments. I'm starting radiotherapy in March, six treatments. It's all pretty grim but i keep a stiff upper lip, nothing else is unfortunately.
Hi Jonney
Ahhh I think it’s similar . Mr BW has Abiraterone ( similar to Enzalutamide and Apalutamide) so that’s another drug that could be used if Apalutamide is a problem. All these drugs have side effects, though. Also BW has had full pelvic RT I wonder if that’s something you may have? Worth checking on your next meeting. What’s your PSA come down to so far ? Are you taking Calcium and vitamin D for your bone health? You are clearly a very fit guy with the walking etc so that’s really good .
(*Abiraterone comes with a very low dose of steroids to counteract the side effects)
L
Need more info. Pelvic area - bones? Six months of radiation - what is this? Radium 223? If bones involved and he should not be taking calcium supplements. Check with Macmillan nurses and don't be afraid to ask questions - some oncologists want you in and out as quickly as possible and you go out no wiser than when you went in. Best wishes for a happy few years to come.
Hi Skoda
why not Calcium and vitamin d ? Granted you should run everything by your own consultant supplement wise. But a lot of men with advanced PC/HT take it for bone strength. We went to the Royal Marsden and was told take calcium Vitamin d and do at least 3-4 types of exercise a week as this would help to fight off the side effects of HT medication and osteoporosis, also will help to make bones stronger. Do you think it’s wrong? Other people’s treatment plans are always interesting, like you say, you should never be afraid to ask those questions.
what’s your stats and journey? Your profile is blank.
Best wishes
L
* some men have full pelvic RT when the cancer has spread to the immediate area outside the Prostate .BW had all of pelvic area, nodes and lower ribs. If it had spread to distant parts that tends to be Chemo. Maybe a target RT? I mean seriously I don’t know, I’m not medical, I do like to know what other men are having incase it’s something we should be looking at for my OH for options.
*not 6 months RT
Hi Barry,
The no calcium part refers only to using Radium-223 because calcium supplements compete with the Radium-223 for absorption into bones and can also increase side effects like diarrhoea. I couldn't work out what the OP was facing and the 6x monthly sessions would fit with a course of Radium 223.
I'll put my journey in the profile; you might wonder if I'd made it up. No it's just as I remember it and from notes I made as we went along.
Best wishes
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