I’ve been on enzalutamide monotherapy for about 2 1/2 months. The side effects are quite debilitating even though I train hard, lift weights and hike almost daily. After sailing through Orgovyx with very little side effects I am surprised it is so difficult with enzalutamide. During the night, the lower back cramps are extremely painful and even reached into sharp stabbing pain in my abdomen when wrestling.
As a result, I cut my dosage in half from 160 mg to 80 mg and the brain fog and trunk pain have diminished substantially. What do you guys think about this and have you experienced similar nasty side effects?
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No experience so far but since I am starting with that same combo in June, this is of interest to me. From what you've described, I think it will be worthwhile for me to not start both on the same week in order to be able to know what drug to attribute the side-effects to. Thanks.
I've been on Enzalutamide 160mg since July 2020, along with quarterly Prostap injections (Lupron). I've not experienced any of those side effects. Definitely one to discuss with your oncologist. In the UK they switch you to Abiraterone if side effects are bad in the first 3 months. Good luck.
we have discussed “ Xtandi side effects “ exhaustively on the group in recent times. Myself perhaps the “ extreme side effects “ poster child ….. Lupron - xtandi. I’m in a wheelchair from it and happy to be here. Just type “ xtandi side effects “ into the search engine at the top of the page for over 1800 returns. I’d say more now but I’m way too exhausted to even try. I’ve said it many times before tho. I’d guess that everything you want is in those posts. Best wishes brother.
I’ve been told by some of my oncologist that I have had a “ fortunate “, unusually sensitive / good , reaction to Xtandi that has “ literally “ helped me escape the open doors of inpatient hospice. Another oncologist told me that I’m the “ luckiest “ patient she ever had and she is ‘70 years old. lol. Yea it’s “ strongly “ tempting to change or switch up , I couldn’t convey how tempting that is sometimes. Still, my personal goal is extended life with my wife ….perhaps at nearly any cost, dunno ….. even with the struggle with QOL that is nearly non stop.
I know I’m holding well right now, it feels tooooo risky to screw with it. It’s just my preference but that’s why. Thanks for asking brother.
Yup. Hated it. Apart the low grade stuff - hot flushes, loss of energy, feeling shit etc, like you I had what is loosely called brain fog plus increasing headaches ending one day in “worst ever headache” plus very high blood pressure.
On the brain fog, I made stupid mistakes with everyday matters (eg bills) plus specific problem with visuo-spatial awareness- wife started complaining about my driving too close to pavements and I ended up clipping parked car one day.
The severe headache had me in hospital on morphine - diagnosis probable PRES. Posterior reversible encephalopathy syndrome. In my case it reversed but it can lead to stroke. Rare but no fun if you draw short straw.
Brain and energy took at least 3+ months to improve.
A friend had been on Orgovyx for almost a year when his MO added enzalutamide (Xtandi). Bad side effects started and he dropped his dose in 1/2 while awaiting another appointment, at which the MO agreed to the lower dose.
I would continue with the full dose. What is the alternative? You R body may adopt to the medication later? I would be concerned with high blood pressure. You should measure your blood pressure daily and consult your doctor if your blood pressure is too high or too low. True to keep your blood pressure in a normal range.
I was on 160mg for a few years and SE’s became cumulative, my onco, Dr. Sartor had me reduce the dosage to 80mg and SE’s lessened. It remained effective for a couple of more years. I wouldn’t make any changes in dosage without talking to my doctor however.
Just as others have said above and previously, I experienced serious side effects on xtandi. Mine included out of control BP, fatigue, brain fog, hot flashes and severe headaches. This was so even when the dosage was lowered from 160 to 120g daily. After about 6 months my oncologist switched me to zytiga and Prednisone. Thankfully, the side effects has been minimal relative to xtandi. That said, as TA, Magnus and other warriors have reminded us time and time again, we all experience these medicines differently. Best to you all my fellow warriors, keep up the fight as the medicines that will cure us are coming. Smile.
Drugs are drugs. If Medicine advanced to the point where 1 drug eliminated all Cancers without side effects, then we would have success. Hearing about each individual experience is educational, but not a valuable indicator for treatment. Listen to your MO for your particular treatment. I had 1 doc give 12-18 months, 4.5 years ago. Im sure I'll outlive the AH. Docs are human, just like us. If yours do not treat you as such, f him/her and find a human, compassionate health care provider.
Why not go on casodex? It's first generation but very effective and few side effects other than breast enlargement. And it only cost around $5 month. They usually don't prescribe it because big Pharma can't make any money off of it. My husband does not do ADT because of the cardiovascular side effects. He's been on casodex for 2 years and his scans are improving.
My husband was diagnosed in 2015 with Gleason score of 6. Due to his heart disease we chose to move forward with radioactive seeds. Fast forward to 2021 his PSA was rising and he had a lung nodule that turned out to be PCa. Lung was radiated with one blast with good results. He has been on 50mg of casodex a day for 18 months. He never had ADT and will probably never get it due to cardiac side effects. His Pylarify PSMA scan has improved with less activity than a year ago, his does not have any bone metastasis. By the way the cost of casodex is around $5 month. The second generation anti-androgens are super expensive and have more side effects. There's got to be a way to beat this cancer, and the drug companies are only interested in making money. He also has an excellent oncologist out of the cancer center at MUSC.
Are you talking about Xtandi or Zytiga? I take the Xtandi directly after dinner so I rest and sleep through the worst of it. Is there a difference between taking Xtandi on a full or empty stomach?
i’m getting my blood work today which should tell a little about the SBRT to 5 bone lesions last month and the recent enzalutamide half dosage for the last two weeks. Also on Provenge for the last four months. Keep your fingers crossed.
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