Questions on three separate issues - Advanced Prostate...

Advanced Prostate Cancer

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Questions on three separate issues

Madbeach profile image

My hubby’s oncologist wants to start him on Zometa next month. Any one on this site taking this and can provide feedback.

My hubby has been having leg spasms (only way to describe it) where when he is walking, his legs get spasms, lock up and he can’t move. This started BEFORE starting on Xtandi and BEFORE the HBO therapy. Anyone else ever experience this and what treatment did you get.

My hubby has just about zero control of urinating now. This has been building up for months and prior to starting on his cancer meds and treatments. He wears disposables 24/7 and urine passes all day long and when he does get the urge to go to the bathroom, he stands there and just a few dribbles of urine come out. Anyone else having to deal with this same situation?

40 Replies

Hi madbeach ….. first, how is your husband doing with his passing blood ? Better I hope , its difficult to hear a brother warrior with that terrible issue.

If you are on adt , particularly Xtandi, a bone loss make up drug like Zometa is “ very “ important. IMHO it’s critical for me. I’m just getting over my 34th consecutive monthly Zometa infusion. Probably most people take a Zometa infusion in stride, but like my Xtandi experience I’m not one of them. Still I’m not going to say much about Zometa , here…now, ….. you would be best served to wait and see how hubby does. Zometa is important, if you do have problems with Zometa side effects please feel free to pm me and I’ll give you my “ workarounds “ for any side effects he might experience. Sticking with it has worked nicely for me.

About the leg spasms, I’m on Xtandi as well. I’m one of the small percentage of Xtandi users that are “ zombieized “ by the drug, …just like shooter1 and several others here. I’m pretty much paralyzed , immobilized, from the lower rib cage down , ……. and back , hip and leg issues are the mainstream side effects for me. The point being that if your hubby already brought leg issues to the table before his starting Xtandi, Xtandi may amplify …. possibly dramatically , those mobility / leg issues. The Xtandi could actually partially conceal dealing with the initial leg spasm too … but at least the problems caused by Xtandi, if however unpleasant, are only temporary and the Xtandi can be nearly miraculous in extending hubby’s life expectancy. It has for me. I was supposed to croak in hospice nearly 3 years ago and Xtandi has miraculously given me nearly three years of unexpected additional life. Well worth it for me.

I hope hubby will be able to tolerate Xtandi Zometa … in my own life and from what I read on this group, adt of Lupron Xtandi Zometa is one of the best , most productive, treatments in the APCa toolbox at this time. It’s a great combo to give a serious try … I’ve been helped dramatically by it, I hope hubby is as well.

I’m impressed how you are in there slugging it out , hardcore , with and for your hubby. He is one lucky guy to have such a strong warrior , like you , at his side.

Just say’in 💪💪💪💪❤️❤️❤️❤️

Madbeach profile image
Madbeach in reply to Kaliber

Thx for replying. He is doing his fifth HBO treatment right now so I’m waiting and reading a book. Bleeding seems to have subsided except right now he isn’t urinating again but didn’t see any blood the last few days so we may have to do a straight cath as soon as we get home. He doesn’t want the Foley Put back in so we will try the straight cath for a while.

Not sure what is causing the leg spasms since the first episode happened before started the Xtandi.

Today he isn’t feeling well at all and doesn’t look good so it’s hard seeing him basically fade away in front of me. But I’m here for him and for the long haul. Hoping good days ahead for him.

Best to u as well

Kaliber profile image
Kaliber in reply to Madbeach

Well it’s good to hear that blood issue is moderating and even possibly on the way out. Humans are amazing at healing. Don’t worry too much about him not looking his fluffy best. The hammer, my wife - warrior says I look like dog #$&@ most of the time … when I get up in the morning, and look in my bathroom mirror , in the mornings usually, I think I have my munsters make up on yayahahahaya yayahahahaya. Today , this morning, the perfect example.

The point being , looking like a train ran over you is part of adt for many of us …it’s no biggie, in fact generally its an indicator the treatment is having its way and it’s working. It’s probably less about fading away and more about adt succeeding. The hammer has seen me like this for 3 years and has come to realize it’s just part of the plan … and even a good thing as indicators go. Getting your hind end kicked by adt is exactly what you want, looking like it …. goes with the territory. Yayahahahaya yayahahahaya I wouldn’t fret about that too much, being a bit sick and looking like hell is probably a good thing. Those extra weeks, months and years might be piling up in the bank.

Just say’in ❤️❤️❤️

I looked pretty good this morning
ppulatie profile image
ppulatie in reply to Kaliber

Know what you mean about the wife being the hammer...lol. I am physically different that what I was 5 years ago, about 40 pounds of extra weight, and loss of energy. But wife fully understands and is surprised I do what I do around the house. Even though what I used to do in an hour now takes all day. If that fast.

Now it is about taking each day as it comes. Walking and enjoying life while we can. Even with this sword hanging over my head, life is still good.

The funny thing is I really do not feel sick. Except for the drugs and the side effects. Guess that is having learned to live with the Beast for 5 years now.

Kaliber profile image
Kaliber in reply to ppulatie

I hear you … i still feel like life is good too, if greatly altered, for me. I’m an extreme adt zombie, I can’t walk more than about 10-15 feet ( before face turning dark red, huffing and puffing gasping for air and bp shooting up to 215/110 ) . I know if I went off adt, my mobility would probably return close to normal, but staying alive longer is my prime concern. Adt rescued me from inpatient hospice ( my first diagnosis ) and has given me nearly three unexpected years of additional life and counting.

Yes I “ take a beating “ ( 24/7 ) , but I ” keep on ticking “ ….. while a little rough around the edges for sure , I still feel like life is good. Yayahahahaya yayahahahaya. After three years of this, a person can get used to about anything. I go to sleep like this, I wake up like this …my whole day is like this. I just shine it on and get to hitting my QOL list of things. I’ve developed mobility workarounds. I can enjoy hours and hours of beautiful hike and bike trails, …… stunning Monterey Ca ..has some of the best coastal trails in the world. I can cruise up and down the isles of drug stores and super markets … and run up to the regional park on bike trails. It’s an example of a mobility workaround.

The hammer doesn’t let me do much …. She knows the zombie discomfort ( pains ) and tries to keep that a minimum for me … still like you , I need to do something and I do.

Life is what you make of it ….

🌸🌈🦋🌻❤️❤️❤️

My stylish set of legs … mounted ready for a trip to the zoo.
ppulatie profile image
ppulatie in reply to Kaliber

I can still walk at least a couple miles at a time, a couple times per day, except when it is extreme heat. Of course, my baby girl makes me go.

Gigi, my shorkie.
Kaliber profile image
Kaliber in reply to ppulatie

How adorable… I’ll bet she cuddles good too. We used to have brown teacup poodles. They were smart and good cuddlers as well. They sadly died of old age. We have pebble tek floors in about half of this house … definitely not dog friendly. Yayahahahaya. It takes a big truck with a big machine in it to clean these floors, I’d like to take it out and put in tile ….. too late for me to worry about that now tho.

ppulatie profile image
ppulatie in reply to Kaliber

She is actually not a big cuddler. Very independent. Owns the neighborhood. Everyone knows her and gives her treats as we walk by. Don't know how she is not 50 pounds instead of her 6 pounds.

Kaliber profile image
Kaliber in reply to ppulatie

She looks precious …❤️❤️❤️

ppulatie profile image
ppulatie in reply to Kaliber

I credit her with saving my life. Without her, I would have lacked the motivation to do what it takes to live.

Kaliber profile image
Kaliber in reply to ppulatie

Dogs are loyal loving pets, its easy to love them. 🐕🐕 ❤️❤️❤️

monte1111 profile image
monte1111 in reply to Kaliber

Great picture. At least you don't look like a limp green squash in the morning. Looking like dog #$&@ in the morning is way better than smelling cat#$&@ in the morning.

Kaliber profile image
Kaliber in reply to monte1111

omg …Yayahahahaya yayahahahaya … well you do have a point there. Yea i did want to put my “ lumpy “ photo there, but that one made everyone nauseous for two days. Yayahahahaya In my “ looking pretty good in the mornings “ photo ……above …. my pony tail is already tied back, I just put on my tuxedo tee shirt, my harley over shirt, put in my diamond earring , doo rag, and my biker skull rings on …then Im ready to go out on the town. I like to look dressed to the 9s for those fly ladies in the infusion clinic.

Just say’in 🪰

monte1111 profile image
monte1111 in reply to Kaliber

Talk about a stylish ride! Bet you could do a wheelie if you really tried. Looks like you solved a lot of your mobility issues. Be careful with those fly ladies, you don't want to get hammered.

Kaliber profile image
Kaliber in reply to monte1111

Actually , when I had the Bruno tie down hardware installed, they shifted the seat forward for me to shift the center of gravity. In high range , it definitely would wheelie. Other models have little “ wheelie “ wheels on the back too. Electric bikes and trikes have powerful motors that take off surprisingly fast. It can do 20 mph in bike lanes for three hours, and switch down to .05 mph for stores and indoors. I bought mine and a few months later there are 4 more of them in the neighborhood now. especially handy for Covid lockdown too. Yep …. One has to be careful around the hammer. There is an iron fist wielding that hammer yayahahahaya yayahahahaya. I can’t “ run “ or even run away anymore … I have to be especially careful. Considering my radical physical adt modifications …. Pretty sure the hammer isn’t worried about any of that fly ladies stuff anymore . If I’m “ bad “ , she’ll hide my pair of mink lined tweezers.

Just say’in

monte1111 profile image
monte1111 in reply to Kaliber

Amazon has a special on Chinchilla lined tweezers. Or was that Chihuahua lined tweezers. Ahhhh, never mind.

Kaliber profile image
Kaliber in reply to monte1111

ewwwwwwww Ewwwwww EWWWWW ….

Chihuahuas always have the short stiff hair that gets caught in your teeth.

Just say’in 😂😂😂😂

monte1111 profile image
monte1111 in reply to Kaliber

I'm guessing that the 4 neighbors on their new trikes are looking for their Chihuhua's .

Kaliber profile image
Kaliber in reply to monte1111

Guess why my trike is faster than theirs ?? 4 horsepower ( er …. Dog power ) motor. Lots of pep but the emissions are messy.

Back2future profile image
Back2future in reply to Kaliber

The last time I took Zometa I had serious side effects, chills, fever 101, headaches, fatigue, etc. Please let me know your workarounds for any side effects I might experience and what has worked nicely for you.

Kaliber profile image
Kaliber in reply to Back2future

See your pm.

Madbeach profile image
Madbeach in reply to Kaliber

Not sure where to find my pm’s

Madbeach profile image
Madbeach in reply to Kaliber

Nevermind, you were replying to someone else…..not me, but I’d also like to learn of that info you sent to Back2future

Kaliber profile image
Kaliber in reply to Madbeach

Yayahahahaya yayahahahaya took me a bit to figure it out and I’m the one doing it …. Can you say “ Lupron fog “ . Yayahahahaya.

Everybody responds differently to meds like Xtandi and Zometa ….. I believe most people breeze thru Zometa infusions with little or no harsh side effects. I’m not one of those tho . I was kinda holding back to see how hubby did before jinxing him . If he does experience some harsh SEs just pm me , some of my experience may be useful if he has the same stuff happening. I’ve had “ the works “ now for 34 consecutive monthly infusions.

Many people experience Zometa as a light flu for a few days, the infusion clinic will prolly tell you to take a OTC decongest starting the night before. I like to use OTC chlorpheniramine, but others might like OTC Loratadine. Something like that. That plus immediately after the infusion ( I start on the way out of the building ) start drinking one of those electrolyte replacement sports drinks , I like the grape flavor Propel … prolly Gatorade or anything similar is just fine. The point of the sports drink is to start frequent urinating for a couple -few days after the infusion …… this to rinse the Zometa out of your body to lessen the duration and protect the kidneys from the Zometa.

I hope hubby breezes thru his Zometa infusion , Zometa is so important in protecting his bones associated with his adt treatment. Harsh as mine are, I’m always eager to get mine because I know how much they help me.

❤️❤️❤️

Madbeach profile image
Madbeach in reply to Kaliber

Can you please share your workarounds for the side effects from Zometa…

Madbeach profile image
Madbeach in reply to Kaliber

Not sure how to PM you for the workarounds of Zometa that you mention in ur reply…

Kaliber profile image
Kaliber in reply to Madbeach

Look at the top of this page and it will be under the “ chat “ button, next to my hub and alerts .

❤️❤️❤️

U gave me a belly laugh and I need that today.

Kaliber profile image
Kaliber in reply to Madbeach

❤️❤️❤️

I take zometa- no side effects for me

ppulatie profile image
ppulatie in reply to Chugach

Ssssh! I don't get them anymore, but don't tell the family that. When I get the infusion, I "suddenly" become ill and helpless for 3-4 days and can get out of doing anything and even cooking. Then I "slowly" get better.

Kaliber profile image
Kaliber in reply to ppulatie

Maybe you should try a different bone rebuilder .. maybe Like Prolia.

Sssssh , if you get an adt treatment like Xtandi , they make your bones thin and unstable and very easy to break … causing you horrendous issues with your bones. If you are prescribed Zometa you should absolutely discuss it with your doctor or medical team , before you decide not to use it. Adt is extremely tough on your skeletal system, you need to take great care to avoid loss of mobility, being in traction or getting stainless steel spinal implants .. if at all possible.

Just say’in

ppulatie profile image
ppulatie in reply to Kaliber

The Zometa no longer bothers me. Have gone from monthly down to quarterly. Just use it for an excuse to get pampered by family every so often.

Been on Xtandi for 2 years now. Doing fine with it. Worst side effects are the tiredness and hot flashes like with Lupron which I also get quarterly. But have learned to live with it all, so life is good.

Kaliber profile image
Kaliber in reply to ppulatie

❤️❤️❤️

I used zometa alsoAlbeit about a 60% dose to be safer. I added Celebrex as the two combined were proven

To reduce deaths by over 20%. They were not sure why.

Schwah

Kaliber profile image
Kaliber in reply to Schwah

Great info …😁😁😁

On the topic of bone strengthening, I was prescribed a Bisphosphonate called Risedronate (Actonel)

At first the dr gave me the regular once a month tablet 150mg. I took it and had a horrendous side effect of stomach spasms, Diarrhea and vomiting.

My pharmacist suggested that I take a different version of the same thing. Once a week 35mg Delayed release tablets, which does the same job as the monthly pill.

This version is taken with food, and has given me no problems at all.

I just wanted to point out that the side effects of the drug can be avoided sometimes by just switching the dosages.

Maybe try the Netflix therapy? Sorry, couldn't resist. I've been taking Xgeva for 4 and a half years now. Once every 3 months now. Belly fat shot. I think everyone here has belly fat. Easy as pie. I think some insurance requires Zometa, because it's cheaper? Maybe someone can weigh-in: which is better, Zometa or Xgeva. Is there a difference besides the cost? Or is this an unknown. I have a recurring dream of my arms breaking off like pretzel sticks. I also persuaded Dr. I needed Celebrex. (Half the dose of the Zometa/Celebrex trial I believe). Maybe I'll just have a left ventricle heart attack. I'm coming, Elizabeth!

j-o-h-n profile image
j-o-h-n in reply to monte1111

youtube.com/watch?v=stdi-1t...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/14/2021 7:45 PM DST

Kaliber profile image
Kaliber in reply to j-o-h-n

Rotflol

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