Xtandi advice

[Doseydoe]

I have just been prescribed Xtandi as my APCa has progressed into a couple of lymph nodes and multiple skeletal areas. I am seeking advice about this drug such as when should I take it and things to be aware of. I am back on Eligard and just finished 4 weeks of biclutimide. Any advice or experience you may like to share would be most welcome, cheers, 😎 DD.

[Kaliber]

most people have mild - moderate SEs on Xtandi. Some people say taking it before bedtime helps manage the SEs. I take mine mornings. Many people say light exercise, gym work ( addresses the tiredness ) and I’d say, watch your eating, keep an ( frequent ) eye on your BG and BP for the first year or two.

Xtandi has extended life substantially, for many guys here including myself.

❤️❤️❤️

[Doseydoe in reply to Kaliber]

Thank you

[Ravenfae]

my husband was equally concerned about enzalutamide (Xtandi) we were worried about the side effects. He has been on it now for over 12months, with very few problems at all and his psa has been stable at 0.01 for several months now, we’re very pleased he made the decision to try the drug. It took us a while to decide but he’s glad he did, he’s doing ok. Obviously everyone is different, but we’re pleased with the effect it has had on helping with his symptoms. He does get a little tired occasionally, which is to be expected with this disease. Good luck to you! Hope this helps.

[Doseydoe in reply to Ravenfae]

Thank you, much appreciated

[aloha_spaceman]

I was told it would make me sleepy so I took it at night, before bed. Don’t know if it helped me sleep, but I didn’t have any issues.

[Doseydoe in reply to aloha_spaceman]

Thanks

[Doseydoe in reply to aloha_spaceman]

Thanks

[Domas]

Makes me a little bit tired and gives me a little bit of numb. But hiking mountains makes it even. I hikes 4 hrs every Wednesday, Bear Mountains, New York with some team members, and walk 4 miles in Jones beach, L.I. twice a week. Hiking or climbing reinforces your muscles, but more importantly, it may balance your physics of body, thereby it may balance your mitochondria (restore it to the default setting), thereby I hope we fix our DNA. Right now, Xtandi is my life rope. I started it after bicalutamide does not work after 2 years. 2 month ago, PSA went down from 2.27 to below 0.01. I quit coffee and I quit ice cream and any sort of juice, which Xtandi does not like. I am doing my best to keep this hiden gem Xtandi work for long. I don't know what is the next resort after or if Xtandi finishes its efficacy. My life may finish? Xtandi's average efficacy period is 18-24 months. But in some rare cases, it may o for 8-10 years.... my doctor said. I am doing my best to belong to that rare group.

[Jazzman2023 in reply to Domas]

Thanks, good reply !! Could you explain what you mean by 'Xtandi doesn't like coffee, ice cream and any sort of juice' ? Did you switch to decaf coffee ? thanks !!

[Taterslife in reply to Jazzman2023]

I’m wondering the same thing…

[jbskiatook in reply to Domas]

Yes let us know why coffee, juice and ice cream presents a problem with Xtandi

[jbskiatook in reply to Domas]

I just had to check this out and this web site says to eat these very same items. Per your limitation is personal preference.

oncolink.org/support/nutrit...

[Doseydoe in reply to Domas]

Thankyou very much

[PSA680]

Hi DD - I’ve now been on ADT and Xtandi for over 4years - I was initially on Firmagon injections & got the most common SEs. Then started Xtandi 2 months later and didn’t really experience any new SEs-perhaps a little worse short term memory but nothing bad. I take in the morning after breakfast- but I have no rationale for doing so. I walk every day to overcome the fatigue from ADT & on the rare days when I can’t walk I get very tired. I have a short nap every afternoon- but I’m lucky to be retired. Good luck my friend I hope & pray Xtandi works as well for you as it has for me so far Kind Regards Darren

[Doseydoe in reply to PSA680]

Thankyou Darren

[EdBar]

I’ve been taking it for nearly ten years, main SE’s are fatigue, headaches, blood pressure issues and cognitive issues with fatigue being the most common and most troublesome. Definitely take it in the evening, I usually take it around 8pm. Monitor your BP regularly. For me some of the SE’s increased over time to where I had to reduce the dosage by half (per my oncologist) which helped. I was also prescribed Celebrex to help with headaches and muscle aches. Some docs will prescribe Ritalin for treatment related fatigue and cognitive support.😉

Ed

[Doseydoe in reply to EdBar]

Thanks Ed for the tips

[Kevinski65]

12 years out, Xtandi and lupron for 10 of those 12. Do any of you take lupron or other major hormone blockers with it?

[Kaliber in reply to Kevinski65]

Xtandi-Lupron … nearly 6 years , so far.

❤️❤️❤️

[rowboattom in reply to Kevinski65]

I have been 9 year on Lupron after proton treatment in 2012.

UCSF STILL on Lupron and new addition of Xtandi started two weeks ago

Makes me tried and lazy and dumb.

[Kaliber in reply to Kevinski65]

What did you switch to after Xtandi ? TIA

❤️❤️👍

[Shamrock46]

Every patient is unique and will experience unique symptoms and SEs when taking drugs or other treatments. After being dx'd and having a prostatectomy in 2014 we were told we had nothing to worry about since the surgeon "got it all," my husband found out 4 yrs. later that his PSA was back at 18 while in an ER for a kidney stone. I transferred his care to another doctor/hospital for treatment and he was initially given lupron shots. When that didn't work an MO was brought in and she started him on Xtandi. After scans/tests) he had been given options such as abiraterone, chemo, radiation. Due to his preexisting cardiac problems, Xtandi was chosen to help the lupron. After a few months the PSA went down to undetectable and stayed there for 2 yrs. Unfortunately he was one who experienced most every SE listed including restless legs, loss of body hair, loss of muscle mass, fluid retention, extreme fatigue, etc. The MO had told us initially that the drugs work until they simply don't because the cancer outsmarts them. We also found out that eventually, even with testosterone levels obliterated, the cancer cells find ways to manufacture their own to keep going and spreading. At the beginning of 2023 he had his 2nd recurrence, his PSA again rising, doubling and tripling, while SEs got worse and unbearable, especially his ability to walk/stand. The lupron was also causing memory problems. He stopped all treatment in April 2023 and switched to palliative care soon after, followed by hospice in January 2024. I lost him to this dread disease this past April. The Xtandi obviously provided some additional time for him/us when the PSA was undetectable, but with all the SEs he definitely paid a price. You won't know until you start taking it how it will affect you and only you will be able to determine your tolerance level. During my husband's treatment the MO was constantly adjusting the dose up and down. After new/worsening SEs, the dose was cut. After the SEs abated, the dose was gradually increased for efficacy and the pattern repeated. I hope you're one of the lucky ones who has a good experience and a long life! Wishing you all the best!

[Doseydoe in reply to Shamrock46]

Thanks for the words of encouragement

[Lighthouse1959]

At night as late as possible so you sleep through some of the side effects

[treedown]

I started Xtandi at my recurrence and had many negative side effects compared to my first 2 years on Zytiga. After about 3 months I stopped Xtandi and went back to Zytiga and am doing as well as the first time I was on it. So not a Xtandi fan.

[Kevinski65 in reply to treedown]

Do you take a steroid with Zytiga?

[Doseydoe in reply to treedown]

Thanks

[Radtech40]

Dad has been on it 4 years now just fatigue for a side effect and his psa has been stable, the lowest its ever been with widespread bone mets and lympnode mets.

[j-o-h-n]

From A and i

Xtandi (enzalutamide) can have several side effects. Not everyone experiences them, but it's important to be aware of potential reactions. Common side effects include:

Fatigue: Feeling unusually tired or weak.

Hot Flashes: Sudden feelings of warmth and sweating.

Headache: Persistent or severe headaches.

Back Pain: Discomfort or pain in the lower back.

Joint Pain: Pain in the joints.

Muscle Pain: Aching or soreness in muscles.

Diarrhea: Loose or watery stools.

Nausea: Feeling queasy or wanting to vomit.

Less common but more serious side effects can include:

Seizures: Xtandi can increase the risk of seizures. Patients should report any seizure activity immediately.

High Blood Pressure: Monitor blood pressure regularly.

Falls: Due to fatigue or dizziness, the risk of falls might increase.

Liver Problems: Symptoms might include jaundice (yellowing of the skin or eyes), dark urine, or severe abdominal pain.

It's crucial to have regular check-ups with your healthcare provider to monitor for these side effects and adjust treatment if necessary. If you experience any severe or unusual symptoms, contact your doctor right away.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Doseydoe in reply to j-o-h-n]

Thanks mate, cheers