Enzalutamide and headaches

[londoncyclist48]

I've recently started on enzalutamide. I am experiencing headaches since I started taking this drug. Some evenings I'm ok, others I get the headache. I spoke to the hospital and they told me, come back to us if this persists. They think it might be my body getting used to enza. Does anyone else have a similar experience? I'm also on Zoladex, tamsulosin and bicaltumide to prevent tumour flare. The headaches only started though when I started taking enzalutamide. I want to take this drug for obvious reasons but similarly i don't like the headaches. I have read that other people have had headaches and it's listed as a known side effect in the instruction notes.

[Shooter1]

If you can stand the headaches, stick with full dose as long as you can. If not cut dosage and see if that helps. I am on 80 mg dose as that is all my body can handle . Good luck with your battle.

[larry_dammit]

All this time I thought it. Was the MsCotin that did it. (Morphine).

[MateoBeach]

If the headaches persist and are not acceptable or tolerable, then you can tell the doctor you are intolerant of enzalutamide due to the severity of side effects. This is your call. It may justifying a change to darolutamide which is at least as good and does not get into the brain so might not have that SE.

[londoncyclist48 in reply to MateoBeach]

Thank you

[EdBar]

I‘ve experienced headaches regularly, likely from Xtandi since it crosses the blood/brain barrier. My MO even went as far as doing an MRI of my head to rule anything out.

Dr. Sartor prescribed Celebrex for me which was approved by my cardiologist and it has helped greatly. I’ve also been able to cut back My dose to 80 mg after being on the full dose for over 2 years. I’ve been taking the half dose now for over 2 years and my PSA remains undetectable.

Ed

[londoncyclist48 in reply to EdBar]

Thank you. That's very interesting. I was worried about continuing with enzalutamide with the headaches but I will push on.

[EdBar in reply to londoncyclist48]

I’ve found sometimes you have to treat the side effects for the greater benefit.

Ed

[j-o-h-n]

Geezamacripe, are you riding backwards again?.............

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 10/17/2020 1:06 PM DST

[monte1111]

Good luck. Hope you get a handle on it. Xtandi has worked well for some of us.

[Survivor1965]

I have been on Xtandi for 44 months. I also had headaches but as I remember they faded with time. Good to see you here, I was a competitive cyclist for years. I finally had to give it up because of the lack of energy, chemo, and weight gain. But hey, I transitioned over to a motorcycle and love love it.

Peace

[londoncyclist48 in reply to Survivor1965]

Thank you for your comment. My headaches are, touch wood, beginning to fade. The doctor said it might be high blood pressure. I'm seeing them on Thursday so will get this checked out. I've now managed to get through two packs and only missed 3 days.

[londoncyclist48]

I had my blood pressure checked and it was 130/90 so slightly high but nothing major. I'm continuing to lose weight and am now down to 106kgs. Still far too heavy but at 6ft2, I can carry it. Next target is 100kg and then 95kg and 90kg. As I no longer drink alcohol, I feel it's entirely doable.

[Patrick-Turner]

Gee that's bad news to get Pca at 48. I've been on ADT Eligard then Lucrin since 2010. I had Cosadex for 6 months in 2016-2017, no side effects, Zytiga 2017-2018 gave me irregular heart rate, especially in hot weather, but I still managed 100km cycle rides early on summer days.

I had chemo afterZytiga, which failed like all thigs before to hold down Psa or stop Pca growth which just slowed down to about a 1/5 of what it might have been without any drugs. I had Xtandi since April 2019, and its effect at hormone suppression lasted about 9 months, about same as Zytiga, so Xtandi has lost its ability to stop Pca growth or slow it down. But I had no side effects. Since 2007, I have cycled average distance 200km+ a week, or 10,000km a year. in some years I did 12,000km. I am fairly fit and healthy at age 73 but now rely on Lu177 to stop Pca getting out of control and killing me quickly.

I cannot keep on having more and more Lu177 because it may cause leukemia.

Some men cut their standard Xtandi dose from 160mg to 80mg, but I have not seen where any expert has written that it makes taking Xtandi useless. One man in Sth Africa said he found cost of Xtandi was so high he reduced the dose, and added a lot of vitamin C. He thought that helped, but I have not hard from him in over 6 months.

Patrick Turner.

[londoncyclist48]

Thank you for your message Patrick. Interesting to read about Lu 177.

Yup, I've drawn the short straw on this one. Your cycling is very impressive. Let me know if you're on Strava.

All the best,

Tom

[AlanLawrenson]

Hi LC48

I notice you are 'following' me. Sadly, these days I don't post here very often. After the loss of my brother to PCa after a 20 year battle and my writing the 3rd Edition of my book An ABC of Prostate Cancer Today, earlier this year, I am a little jaded. However, I got an email today from PCa sufferer who said " that my 3rd Edition was probably the best book for the PCa sufferer that he has read in 30 years". Most motivating.

I hope the Xtandi induced headache have eased. Someone suggested a possible change to darolutamide.

With the suspension of most prostate support groups around the world due to COVID, i see a marked tendency of men to almost ignore their condition. Which is a very dangerous thing to do particularly for me with high Gleason scores.

[londoncyclist48]

Thank you. My headaches have eased. Life is good for the moment. I will check out your books.

[londoncyclist48]

Does anyone get tingling in their hands and feet from this drug? Whilst not painful, it's really freaking me out. I'm told this is a known side-ffect.

I'm still working in a light manual job and I've noticed that when I do long shifts, the tingling is more frequent. When I rest, it goes away.

Any advice or shared experience much appreciated.