Apalutimide side effects: My husband is... - Advanced Prostate...

Advanced Prostate Cancer

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Apalutimide side effects

Zoeharley profile image
30 Replies

My husband is taking Lupron shot every 3 months. He also started taking Apalutimide for about a month. In the last couple of weeks he has had insomnia and also has quite bad leg twitches at night that also prevent him from sleeping or wake him up. Has anyone had this happen. Our dr has suggested going off for a week or so to see if these symptoms go away. Any help would be appreciated, Thank you

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Zoeharley profile image
Zoeharley
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30 Replies
LearnAll profile image
LearnAll

IMO, Going off for a week can clarify the reason for muscle twitches. If they stop, Apa is responsible....if not other cause has to be looked into.

Tall_Allen profile image
Tall_Allen

Let us know if that resolves them.

Fightinghard profile image
Fightinghard

What time of day is he taking the med? If insomnia, try taking it in the morning. Might allow him to sleep

Zoeharley profile image
Zoeharley in reply toFightinghard

Thanks. He takes it in morning usually around 9 am

tallguy2 profile image
tallguy2

I have only experienced fatigue from the apalutamide. I take it with dinner but after lunch each day I crash for a nap. Replying back to express support.

2dee profile image
2dee

Did you change diet?For example cutting all dairy years ago resulted in muscle spasms.

2Dee

BadNews4me profile image
BadNews4me

Leg twitches could be RLS (restless leg syndrome). If so (I’m not a Dr) there are meds that help. I’m taking Mirapex with great results. Just my experience. Keep fighting and Never Give Up!

Fastingguy profile image
Fastingguy

I was prescribed low-dose gabapentin for neuropathy and restless legs. I also take 3 mg melatonin. For the first time in years of Lupron I am sleeping 8 hours without interruption every night. I have a bit of trouble getting comfortable enough to fall asleep because of arm pain but use extra pillows on each side for added support. I am 73, so it is hard to distinguish effects of aging from effects of meds.

JPOM profile image
JPOM in reply toFastingguy

i'm 74 and also experience leg cramps... always at the same: as my body is relaxing into sleep mode. i find if i tense my leg muscles, then relax, and repeat a few times, the cramps subside and i fall asleep. I'm on casodex and finasteride, still have my gland and still can enjoy the rare orgasm. I also fast as often as i'm able. Great for T2Diabetics. Good luck, friend.

MarcoGlenn profile image
MarcoGlenn

Hi I started taking Erleada (Apalutamide) a little over a week ago - switched from Casodex. I also get an Eligard shoot every 6 months and xgeva shoot every 3 months. I have been expecting insomnia since starting Erleada. I also have been noticing some leg discomfort at night. I have been using medical marijuana for a few years for sleep, but it does not seem to work very well since starting on Erleada.

MarcoGlenn profile image
MarcoGlenn in reply toMarcoGlenn

I take my Erleada in the morning

JPOM profile image
JPOM in reply toMarcoGlenn

why did you switch from casodex?

MarcoGlenn profile image
MarcoGlenn in reply toJPOM

I had 3 straight test where my PSA increased

JPOM profile image
JPOM in reply toMarcoGlenn

yep, good reason, for sure. thnx. rock on!

Lunbo profile image
Lunbo in reply toJPOM

Casodex is old school--are you using an Onc.? Zytiga or Erleada....

JPOM profile image
JPOM in reply toLunbo

of course i have an onc... i have a team of doctors for over 10 comorbidities, my friend. The best is my hemotologist onc, for the bone marrow cancer as well as the PCa. casodex is so old school that it is still standard initial tx for PCa all over Europe. you can call it whatever you like, but until it fails me (PSA<0.1 for 3+yrs), i'm sticking with it. Next up will be Lupron, because apalutamide looks great but can't see much difference between that and other -lutamides.

MarcoGlenn profile image
MarcoGlenn in reply toJPOM

I was on Casodex for about 5-1/2 years. Worked great till just recently

JPOM profile image
JPOM in reply toMarcoGlenn

ya, i'm aware that hormone tx eventually fails... and 5.5yrs was a good run. i've heard longer ones, as much as 10-15 yrs. i'm 74 yrs old and expect i have maybe 10 yrs max before hospice and death. i doubt PCa will kill me before other medical conditions do. meanwhile, i'm gonna enjoy each day's challenges and opportunities. Stay safe, brother.

JPOM profile image
JPOM in reply toMarcoGlenn

now and then i take a valium to sleep. otherwise, i deal with varying sleep intervals thru the night. i'm done trying to figure them out. there are times when all i get is 2hr intervals (pee, then go right back to sleep), other times i get 4-5hr ones. I thought exercise was a factor, or impending life crises, causing elevated cortisol levels (from anxiety)... but every theory eventually failed. Now i just take one day at a time. I also use a chamber pot, facilitates going back to sleep.

MarcoGlenn profile image
MarcoGlenn in reply toJPOM

I am sorry you are having sleep problems- I was doing good until Erleada- I just have to figure it out, because I need to be good for work. I am so worn out today. Gonna look into Magnesium as mentioned.

JPOM profile image
JPOM in reply toMarcoGlenn

Milk of Magnesia used to be a lot more popular, as was castor oil and a whole slew of other stuff. That's why i chose MgCitrate.

Hailwood profile image
Hailwood

Fatigue is the primary issue for me and in order to not be tired during the day, I take the med at night. I sleep well, only to get up 3 x to pee.

Union98 profile image
Union98

Some of these meds cause electrolyte imbalances. Magnesium will help with the twitches and with sleep (and with bowel movements!). Soaking in epsom salts or purchasing spray on magnesium will by pass the loose bowel fun. The spray on is great for late night muscle cramps and it softens the skin. There are many different kinds of magnesium supplements and I always forget which one does what so a quick Google search may help with selecting the right one.

Zoeharley profile image
Zoeharley in reply toUnion98

Thank you. He has increased magnesium intake but hasn’t seem to make a big difference. I will look into the spray as well.Also he doesn’t seem to get the leg twitch’s during day, mostly from about 8 pm on.

JPOM profile image
JPOM in reply toUnion98

i have a ton of MgCitrate caps, because it's one of the more absorbable forms. i was convinced it would help with everything from Afib to diverticulitis to PCa.... had no discernible effect on anything. i'm still sure it's good for me so i take a cap/day 😜

Maidtuck profile image
Maidtuck

My husband also has had very bad leg twitches for a longtime now while on different prostate cancer meds. Wish we knew a solution. He very seldom gets a decent nights

sleep. Maybe more patients complaining about this side effect will make the medical profession seriously look into the cause.

Zoeharley profile image
Zoeharley in reply toMaidtuck

Thank you for sharing. I didn’t read anywhere where this is a side effect so maybe most don’t get this. Hard to find answers.

Skeeter03 profile image
Skeeter03

Restless legs just started for me after 6 weeks of xtandi. In dialysis patients suffering RLS leg stretching exercises at night substantially reduced incidence of RLS/leg twitching. Also calcium channel blockers for hypertension such as amlodipine can increase incidence of RLS so I am going to try taking my amlodipine in AM and stretching my legs each PM.

kcareer profile image
kcareer

I have been on Lupron and Xtandi for about 4 years. I take the lupron shots every 3 months; and the xtandi 4 pills every day. The side effects that I am having with both drugs are fatigue, numbness & tingling of my fingers and toes. I told my oncologist about these side effects. At first he said I should stop taking the drugs for a while. I stopped taking the Xtandi for about three days but the side effects were still there. When I complained again to the oncologist, he said that I should see my primary care physician. So, may be you should consult your pcp.

Zoeharley profile image
Zoeharley

Just an update on the Apalutimide and leg twitching /jumping. The oncologist suggested going off for a week which definitely reduced the amount and severity of the twitches. Then they said to try taking only 2 pills per day instead of the 4. So far the twitches are still appearing but slight and livable. Next step is to increase to 3 pills a day and see how that goes.Thanks to everyone for all the responses and suggestions.

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