XTANDI worries

[Advocatedaughter]

My 86 year old Father has been advised to begin taking XTANDI. At 62 his Prostate was removed, been in treatment since. Currently PSA is 5, Lupron injections every 3 months. I am worried about side effects, as he lives alone. Is is better to take the other drug( can't remember the name) with Prednisone?

[ctarleton]

That other drug is probably Zytiga. Neither drug has really been tested extensively in the very elderly (only around 30% in Trials were older than 75). Both are oral medicines. You might ask these questions of the doctor. I might consider arranging to monitor his home status more closely during the first month or so. Fatigue is often reported on Xtandi. Some have reported an increase in falls on Xtandi. There could be ways to mitigate the likelihood of falls. You might also consider one of the home monitoring alert systems as seen on TV, if he lives home alone.

Hope he does very well on whichever new treatment he may get.

Charles

[Advocatedaughter in reply to ctarleton]

Dad has Great Call alert system. Still driving, plays Bridge 4xweekly, I see him every Sunday. Not wanting Dad to be on Prednisone at all. Wondering if 140 mgs daily is too much with only PSA of 5. Had Bone matasteces 3 years back, radiation. Oncologist said Bone scan would be considered this summer. Dad is retired Admiral, DOD rx program will cover costs I believe. Mostly concerned about this new drug only being approved by FDA 4 years, not tested on elderly. What next? Positive attitude and love.

[ctarleton in reply to Advocatedaughter]

Just to follow-up... You might like to peruse these Information Sheets for Xtandi and Zytiga. They have lots of "details" for overall consideration.

astellas.us/docs/12A005-ENZ...

janssenlabels.com/package-i...

Charles

[Advocatedaughter in reply to ctarleton]

thank you.

[Kaliber in reply to Advocatedaughter]

Hi Advocatedaughter ...I'm 73 and been on Lupron-Xtandi-Zometa for 4 months ( 140 xtandi ). my starting PSA was 1400 along with some seriously screwed blood work ( plus bone mets nearly everywhere in my body ) , and now my PSA is 1.0 and all my blood work has returned to the green ( normal ) ranges. for me, Xtandi does make me VERY fatigued. maybe the falls being mentioned here are related to the hefty fatugue xtandi causes but I haven't experienced a tendency for falls yet in 4 months. xtandi has worked so well for me that the side effects don't seem all that bad for what I get from it. I also experience muscle weakness, hot periods and cold periods and intermittent muscle pains from the xtandi. seems like I experience the effects of xtandi , more or less the same as younger people taking it, that's my own experience with it in just 4 months worth.

[Grumpyswife]

My husband is only 75 but had to go to half dose due to side effects. Xtandi is still working for him at half dose. His side effects were dizziness with a fall at Costco and now lots of muscle weakness and brain fog.

[Advocatedaughter in reply to Grumpyswife]

Oh my, I am sorry. What is his dose and his PSA?

[Grumpyswife in reply to Advocatedaughter]

His PSA is about 5 now just down from 5.6 on his last test. His highest PSA ever over his 18 year history was 28 though. He takes two at night and we have even asked Snuffy Myers about the half dose and he thought it was fine. He has one 104 yo patient on one Xtandi per week.

Has your Dad exhausted Casodex? That was much easier tolerated by my hubby.

[dlestercarlson]

When I was on Xtangi, the fatigue was bad and I lost a lot of strengh in my legs. You might want to consider getting him a cane in case he needs it.

[Shooter1]

Just watch more closely. Took full dose Xtandi 5 mo. to turn me into an invalid needing constant care-no driving for sure. Still taking a year late at 2 pills daily and 3 on Sunday. (ave, 86 mg daily). New normal is different, but driving, shopping, board games, cards all ok. No football, feet hurt to much.

[Kevinski65 in reply to Shooter1]

Do u have neuralgia in your feet? My feet feel terrible at times. I take Lupron and Xtandi (full dose). I've been on Lupron 2.5 years and Xtandi 3.5 years

[Shooter1 in reply to Kevinski65]

They tell me mine is periferal neuropathy from Chemo. Feet, heals. toes, and ball of foot mostly numb, but some times feels like I step on a nail with my heels. Pain moving toes feel like wet sock full of sand. Reduced dose Xtandi. Orchiectomy so no Lupron.

[Kevinski65 in reply to Shooter1]

I take Ibuprofen, neurontin, and aspercream with lidocaine on feet at night. Seems to help.

[Happystrap]

I do not understand why, if your Dad had a prostate removal in his sixties, he has been in treatment ever since. I had mine removed in my late sixties and had nothing but periodic psa tests for the next nine years At that point, my psa began to move up, and I finally went to Loma Linda University Proton Radiation Therapy for a series of treatments. (pRoton, NOT photon therapy -- which has been the standard disaster for many years. Photon Therapy units are being built at various progressive medical centers across the country. It has been around for many years, but only at a few pioneering locations.)

Anyway, the cancer which was returning (in the "prostate bed") was effectively destroyed. That was about 12 years ago. If your Dad's cancer has not metastisized, I'd look into photon radiation, which is precisely targeted so that it does not actively burn everything on its was in to the problem and beyond.

Incidentally, he should absolutely minimize dairy products and meats -- which seem to help cancer thrive. And of course, cancer absolutely LOVES ALL sugars. (It fascinates me that I have seen oncology treatment centers which offer candy and sweet rolls to persons while the receive intravenous chemicals designed (presumably) to kill their various cancers.)

[dbrooks_h in reply to Happystrap]

Did you have a pelvic scan when your psa started going up

[charlesmeyers1964]

He’s 86 .... stop the treatments . at his age a heartattack or something else will take him. let him live the rest of his life comfortable and worrying about the end. we all die at sometime and his age means he's lived a good life. let his body heal. i've only been at this for 11 years and my body is taking a beating i'm only 72

charlie

[Advocatedaughter in reply to charlesmeyers1964]

I agree but it is his decision. He has begun and is on his 3rd week without huge side effects. By 5/7 he will be taking the 4 a day dosage. Seeing Oncologist Monday. Prayers up.

[Bball]

My husband is 81 and has been on xtandi two years. The side effects are very similar to the younger people on this site, extreme fatigue and weakened muscles. He had a significant fall going up steps although that could have happened without xtandi. His PSA has remained between .1-.4. I agree with Shooter1 just watch more closely.

[Magnus1964]

Everyone has a different reaction to xtandi. I am doing ok but some do. Have side effects. So there cause to be cautious.

[monte1111]

Most of us Xtandi users use in evening. That is just most, some exceptions to the rule. I will be 69 in June and have been on Xtandi for 19 months. Psa last 7 months 0.2 Perhaps MO would consider starting with half dose and then trying full dose. Just a thought. I do have fatigue, but I'm lazy anyway. And which drug is causing that? Could be the lupron I've been on for 2 years. Don't know which is "best". Heard conflicting accounts. MO actually prescribed prednisone with my Xtandi. I have cut that to half and do notice increased fatigue. One pill makes you larger and one pill makes you small. I would certainly be inclined to follow doctor's advice.

[Beermaker]

One pill makes you larger and one pill makes you small. And the ones that mother gives you. Don't do anything at all. Go ask Alice When she's ten feet tall! One of my very favorite songs, full of wonderful advice.

I too have been on Xtand for about 19 months. PSA is <=0.1. I have been on ADT for most of the 7.5 years I have been on this trail. The Xtandi gave me such fatigue I cut back to 3/day, then 2 per night. Still tired, fatigues, but also fighting insomnia. I would recommend letting him try it, but to be ready to cut back if necessary.

Oh, the green smokes (vapes) from MMJ help me overcome the insomnia at night, and to relax and look for that rabbit and caterpillar.

Best of luck, encourage him to keep fighting!

Beerman aka Marshall

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

youtube.com/watch?v=clXoGIz...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 03/14/2019 8:13 PM DST

[Garbonzeaux in reply to Beermaker]

'Twas brillig and the slithy toves

Did gyre and gimble in the wabe;

All mimsy were the borogoves

And the mome raths outgrabe.

(You wouldn't believe what the spell check feature does when I type that.)

[CreativeOne in reply to Garbonzeaux]

I haven't read Jabberwocky in years. I love how it rolls off the tongue when read aloud in a pompous over-loud voice.

[Garbonzeaux in reply to CreativeOne]

And it helps to burble a bit.

[Kaliber in reply to Beermaker]

yep me too. I live in a recreational cannabis state where you can just walk in stores and buy it off the shelf. .... there are 160 delivery services here in town which will have it at your door step in 15 minutes or less , .... shopping off their well illustrated web sites. I find cannabis very effective at dealing with " some " of the awful and very painful side effects of Zometa and the nausea I sometimes feel with xtandi. and like you I use it for improving my sleep at night. I really like to avoid using the hardcore opiates they give me as much as possible and I find cannabis somewhat useful in that respect. mostly I eat cookies and brownies for sleep. they can take a couple hours to kick in but are powerful and last a long time. eaten right before bedtime ( for me , your mileage may vary ) they can really improve a nights sleep considerably. for me, they can have a decent pain relief impact, somewhere between vikes and tramadol ( closer to vikes ) ... but I have to be substantially medicated on cannabis for that to happen ( which gets pretty old over time ). like everything else, it's a trade off. cannabis can be a real big help with the mental issues by letting you zone totally out , elevating your mood, and forgetting everything for a while. choose the right strain for the job you had in mind. although not necessary legally in this state anymore, I keep my MMJ card current ( certified Dr recommendation ) in order to comply with the Opioid contract / urine test my provider makes you sign / do when they give you the big boy pain killers.

I'm an old hippie from the 60s Berkley scene , that caterpillar , Absolem, and I are old friends and I have used his hookah many times. he's got a lot of tales to tell about Alice. y ahaya hayaa h

[Daddyishealing]

My father 65 was on only lupron. His psa neber went down below 4. On zytiga with add back prednisone his psa is finally below one. Keep the faith xoxo