Hello my dad has been on Xtandi for about 3-4 months yes it brought down his PSA level magically but he is having some side effects to the pills we think.
He is 82 has been on most treatments like Provange, Zytiga, on currently and since this battle started Lupron and Xgeva but now he’s on xtandi. Numbers are great.
But since about the start of them about 3 months ago he said he was feeling tired and weak but I as his daughter didn’t think anything of it cause most of these meds would cause these mild side effects.
Then he started saying he had pins and needles feeling in his feet which we assumed his diabetes but along with that he said he has no balance and he has fallen a couple of times.
I went to check in him like I normally do once a week or if I pick him up and take him to his appointments I can see he has a struggle with getting in and out of my car. He’s afraid to walk over to his mailbox so his mail was full because he’s afraid he will fall outside then his neighbor tells me he had fallen while cutting his own grass because he doesn’t want anyone else to help him or for me to pay for it but the neighbor said he fell so thank God he picked him up.
My dad has a lot of pride and fear but I asked him how often has he fallen he said since he started Xtandi he hasn’t felt the same he can’t get up and out of his chair easily or sit back down he said like he lost his power? I did some googling and I read that is some of the side effects I will put a call into his doctor Monday morning and see what he said but I thought I would check with others on this forum to see if anyone has any side effects as those of my dads.
Not being able to move or walk faster
Can’t get out of chair or into chair easily
Feels lower extremities weakness
And over all not feeling like himself
He has been on these pills for 3 months I thought the side effects would show up in 2 weeks not 3 months any input would help thank u in advance
Olivia
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Olivia007
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I went onto added Xtandi around 3 years ago when I was only a spring chicken at age 69. For me, there was a marked increase in daily fatigue, less "peak strength", less "prolonged stamina", and less tolerance to working outside in the heat. I found myself needing to go slower and to take more frequent breaks to rest and to cool down when doing things like mowing the lawn. A couple of years ago I made the decision to "delegate" that type of work, and also anything involving getting up onto the roof, or up on ladders, or lifting really heavy things.
At the time, I did some understandable grieving over my self image and the loss of my former easily-fulfilled Roles and physical Capabilities in life. Looking back, it has been one of the best things I've done in recent years. The "lawn guys" have the tools and do a better job over time than I would be doing, and it has actually turned out to be a relief for me, and less of a source of worry for my spouse.
My oncologist(s) also do often ask me if I've had any falls while on Xtandi. A small subset of men did experience falls in the clinical trials leading up to approval of Xtandi. Perhaps more likely in older men.
I think it would be a good idea to Google research "Fall Prevention", and to discuss those things with your Dad, and to perhaps survey the home to remove any obvious fall and tripping hazards. Some families also avail themselves of one of the "I've fallen and I can't get up" type of monitoring services that are widely available. Good Luck with this, though.
I recall when my own parents were getting older and frailer, they were often quite resistant to some things. It's not easy for many of us as we age or develop symptoms to reverse a lifetime of trying to be so independent. Families need to share their Patience and Compassion for one another. Sometimes easier said than done, of course.
As I've lived for a while with my incurable metastatic prostate cancer, I've been coming to the feeling that a lot of my former sense of personal independence and lone wolf attitudes have been a bit of an illusion. We and everything else on this planet are more interconnected and interdependent than we imagine. When I was an infant, I could not walk, talk, or even survive without the love and care of those around me. It seems kind of balanced to me that as my body & mind may become equally helpless toward the end of my life, I would hope to be comforted to know that such love and interconnectedness could still be there.
Beautiful written. Iam 62 been on xtandi for over a year. My psa is non detect and yes my muscles get really sore and sometimes my balance is kind of wacky.
What you describe could be negative side effects of Xtandi. The new antiandrogen can cause significant problems in some of the patients. Paresthesia, falls and muscle weakness are negative side effects of Xtandi.
These drugs can control the cancer but they do have negative side effects. If all the numbers are great, you could discuss to reduce the dose and monitor PSA closely.
Perhaps you could discuss to control the cancer with other treatments. It seems he was not treated with chemo. He could be treated with low dose chemo and see what happens.
There is also the possibility of treatment with Lu 177 PSMA. There are some clinical trials for these treatments:
Hi Olivia .... there are a small percentage of Xtandi users that get what you could call the “ hefty “ side effects that you describe , they aren’t all that uncommon... I’m one of those people. Extreme fatigue and I mean whopper .... hard to get up out of cushioned chairs or couches, walking hunched over because your lower extremity - spine - legs are so stiff , shuffle my feet when I walk ... an ever present feeling of being sick and uncomfortable ... sometimes worse than others. There’s lots more but these are most of the major ones. I can’t hardly walk out to my truck without my face turning red, huffing and puffing and bp skyrocketing. The thought of walking across the street and back laughable. I’ve been on Lupron Xtandi for nearly two years , the effects deepen over time. Trying to get up into the driver’s seat of my truck I have to help lift one leg with my hand to get it up there to get in. Sometimes I grab a wall or chair back because I lose my balance a little.
That’s the down side for many on Xtandi ...but there are “ fixes “ that dramatically improve your quality of living. Sitting in higher chairs where you don’t have to use your legs to lift yourself up to get up. Just step off and walk. Step up on a little stool to get into the truck. Also I went on a 30 minute walk with my wife this morning, with our masks , on a local hike and bike trail. My wife walking and me driving beside her on a electric e-trike ( like an e-bike but with three stable wheels ) electric moped ... mine outfitted with slow speed controls to accompany people walking or running. I can go along holding hands and talking...getting sunshine and fresh air and a bit of exercise. When I’m out alone I can whizz along 15-20 miles per hour on the bike trail experiencing the freedom of a 15 year old on a new bicycle but without all the effort. I can go 20-30 miles effortlessly , just like sitting in a comfortable chair with arms.
The point being is that the Xtandi is keeping you alive but it can have strong side effects .... but you can overcome those to a large extent and be able to better enjoy that extra life the drug gives you with your family. To me the side effects are well worth keeping my cancer in biochemical remission. I’ve been in biochemical remission for nearly two years thanks to Lupron Xtandi.
I agree with you, but he lives alone and I can’t move in with him it’s a little more difficult for him and he’s terrified of falling again. I noticed his mail was piling up when I went to go visit him he loves the mail he looks forward to getting it but he said he was afraid to fall on the street because he’s fallen a few times. Thank you for your advice.
If you get him that e-trike and -or a mobility cart , he can still get his mail without falling because he will be sitting down while doing it. Trike for outdoor and cart inside the house. He will also feel weaker to stand and walk , from the waist down, the longer he stays on xtandi. The carts will solve most of his mobility and falling down problem. That’s the whole point.
Used mobility carts are plentiful and cheap on Craigslist. One indoor and one out eliminates the need for a ramp. A e-trike outdoors allows him to go to the store if he lives in town or get exercise outdoors. Even a standard mobility cart outside would make getting his mail safe and effortless without worry of falling.
If you don’t think he could manage mobility carts or e-trikes without fear of falling and hurting himself , sounds like it might be time for a home care nurse or extended palliative nursing care facility.
Adt treatment makes your bones thin and brittle... falling after being on adt is especially dangerous.
Hi Olivia, I’ve been on Xtandi since 12/2015. I’m 80 now and have the same symptoms, balance, strength issues, numbness in the soles of my feet, nausea, diarrhea and loss of appetite. The hot cold flashes went away after a year. I turned 80 in February. My PSA has been undetectable since 3/2014.
Xtandi and Lupron have kept me in durable remission.
When health clubs open again, I suggest that he setup a treadmill or stationary bike plus strength training program.
The other thing is that your dad and I aren’t getting any younger so his issues could also be partially caused by aging.
I’ve only been on Xtandi for six months. The primary side effect I experienced was fog-head, but the fatigue is noticeable. My MO suggested simply taking Xtandi before bed vs morning. The fog head effect has diminished by the time I wake the next day . Your dad may want to try this if he’s currently taking Xtandi in the morning.
Olivia I am a Gleason 8 and have been since 2012. I am on an ADT regimen that has worked very effectively. Your father’s symptoms suggest there could be a problem, which I experienced, with his spinal disks. I had an x-ray and my L4 and L5 in my lumbar region were shot. I am 78. It was a quick x-ray that revealed the Extreme wear on the disks.
His sciatic nerve could be involved causing the pins and needles in his feet and the other symptoms I had mine concentrated in my right foot and right leg. No metastasis of my prostate cancer has been identified. I will soon have an orthopedic anesthesiologist do a procedure (Epidural) intended to suppress the cause. I am receiving my care through the Florida orthopedic Institute, Tampa, Florida. Good luck.
I’ve been on Xtandi for about 5 years now and my PSA remains undetectable. 2 years ago I was able to reduce the dose to 2 caps instead of 4, so a half dose, and it is still effective. SE’s we’re getting to be rough on the full dose and seem to worsen over time. They’re somewhat less on the lower dose but still have fatigue, headaches, etc. I like to refer to them as tolerable but substantial. Hopefully your dad is taking it in the evening which helps a bit with fatigue. Exercise helps quite a bit but at his age I can see that’s probably not possible.
You may want to ask your doc about lowering the dose and see how he responds. The full dose is SOC but many men find it is effective at 3/4 or 1/2 the SOC dose.
Xtandi was the first of a new class of prostate cancer drugs. Ask your doctor about apalutamide (Erleada) or darolutamide (Nubeqa). A low PSA is important but so is QOL. Dad could fall and break a hip.
If you have a walking (not driving) mail carrier.... tip him/her and ask them to deliver right to your Dad's front door (set up a mail box near the front door) and not to the end of the property line....
I called the makers of xtandi and their pharmacist said all the symptoms my dad was experiencing was normal and found evidence of men in their clinical trials they told me to have my dad stop taking it and call the doctor the doctor said ok but never heard of this I said the makers of it told me and it says it in the insert possible falls and fractured although when I asked the nurse of Xtandi why the clinical trial showed men falling she said she didn’t know what caused the falls this is ridiculous
numbness/burning pain/tingling/prickly feeling under your skin,
swelling in your hands or feet,
cold symptoms (such as stuffy nose, sneezing, and sore throat),
high blood pressure,
upper respiratory tract infection,
blood in the urine,
urinary frequency,
dry skin,
itching, or
nosebleeds.
Tell your doctor if you have serious side effects of Xtandi including severe low back pain, trouble walking or standing up, pain or weakness in your lower body, severe and worsening numbness or tingly feeling, sudden loss of bladder or bowel control, fever, cough with yellow or green mucus, stabbing chest pain, wheezing, shortness of breath, red or pink urine, or increased blood pressure (severe headache, blurred vision, buzzing in your ears, confusion, chest pain, uneven heartbeats).
Thank u I know I went on their website and called the makers of xtandi they told me from their clinical trials 10% of men had the same symptoms my dad did so we took him off of them to see how he feels? We will see!
160 mg dosage made me a complete invalid. Cut several times and can live with 80 mg dose without all the problems. Cancer in remission and PSA 0.1. Just started riding bike again after 3 1/2 years unable to do so.
There is a list of medications that potentiate xtandi and exacerbate side effects.In my case it was Plavix(chloriprogel) It is a common blood thinner and is common medication in aged men. I had to cut dose of xtandi from 160 mg to 80 mg a day which made it bearable. There are so many drug interactions do your own homework as doctors can't always know and remember.
Thank you yes on our next appointment I suggested we cut the dose to half and doctor said ok so I’m hoping he will feel better on them. Thanks again! 😊
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