Dad , 83 , has periodic limb movement disorder ( PLMD ) , during the time when he is going to sleep. Once fully asleep it does not happen.
he is supposed to start xtandi next week. At 40 mg to start with and then after a few days has to increase to 80 gm.
I was wondering if xtandi would be a wise choice with the Plmd issue as I read xtandi can exacerbate neurological stuff ??
Meaning ? Why would I joke Allen.
Please can you guide me on this
Sorry, I deleted my comment. It just never occurs to me that someone might worry about restless limbs during sleep from a drug delaying death from a disease.
Thanks Allen 🙏🏻
It's a terrible disorder. Very painful, like the pain from opiate withdrawals, but not as bad as that.
Dad does not have any pain at all from plmd. He only gets it when going to sleep and is not also aware of it.
He's lucky, then. Mine happens just as I'm falling asleep.
Your Dad is starting on the smallest possible dose of Xtandi, so hopefully he can tolerate and move up to 80 mg. Even 80 is only half the usual dose of 160 mg. I think the oncologist is being cautious. If your Dad does get any side effects then Darolutamide maybe a good alternative as from what I understand it doesn't cross the blood brain barrier. Good luck to your Dad and your family.
Thank you. Good luck to you too 😊🙏🏻 Was reading your bio. You did not do chemo ? Have been asking the MO’s if dad can get triple therapy but they prefer doublet they say for him
When I was diagnosed in May 2020 triplet was not a option for newly diagnosed. Infact the reason I was given Enzalutamide (Xtandi) was only because during COVID they did not want to start me on chemotherapy incase patients became immunosuppressed. I have responded well to Xtandi 🙏. It is really difficult to know what to do. Maybe go for a second opinion?. A friend in my prostate cancer support group in the UK aged 81 started on Xtandi like me and then did x10 Docetaxel chemotherapy treatments after Xtandi stopped working.
Tall Allen says chemo must be done relatively early on for it to be fully effective as later cells go into senescence or something.
What is your experience with Xtandi
The care oncology clinic is a private clinic in London. You can Google them. I also believe they are based in the USA and that they ship. I have no idea if it works but I threw it into the mix. It consists of daily Metformin, Atorvastatin and alternatively between Mebendazole and Doxycycline. I have recently stopped the Doxycycline due to photosensitive response. You have to pay every 12 weeks. Even the clinic doesn't really know if the protocol actually works. The following is copied from the website:The COC Protocol is a specific combination of conventional pharmaceuticals which may work together to restrict the overall ability of cancer cells to take up and use (i.e., ‘metabolise’) energy. The addition of non-cytotoxic agents with well-established safety profiles seeks to impede the prospects of cancer cell survival, especially in a hostile environment, such as during standard-of-care chemotherapy, radiotherapy, immunotherapy and hormone therapy.
I have restless leg syndrome. My Dad had it, too. It may be due to a magnesium deficiency. I take Ropineral (Requip) , which works greatl.
Attempts to reduce cost of Xtandi in the USA
Enzalutamide (Xtandi): Start at half standard dose to extend efficacy time span?Only ADT first or add second generation ADT too at start ?
The University of California has raked in a previously undisclosed $1.6 billion from Xtandi sales sales
Zytiga failed, starting Xtandi. What to expect for my dad. 
