Xtandi break for 4 wks

[Jack02]

Hi all, Well my pa mo as now decided to take him off the xtandi for 4 wks to really know if this treatment is what coursing my pa to be able to not barely walk, I was wondering if any of you have had a break from this treatment and noticed a difference in your health and mobility?and if so how long did it take for you to start feeling any or no improvement? The NHS founding in England will only allow 6 wks off treatment so not a long time in all accounts, hope your all well and remaining happy, positive and enjoying life best wishes to each and everyone of you, xx

[Shooter1]

Full dose of Xtandi made me an invalid...I couldn't wiggle a toe and balance was greatly affected. Other neuropathy problems also.. cut dosage and first improvements were noticeable within a week. I ended up on 80 mg dose for 3 1/2 years with no further really bad SE's. You may want to start back on Xtandi at lower dose after break and see how your dad handles it..... Best of luck to you. Life is Good, live it to it's fullest and enjoy your dad's company for many years to come....

[Jack02 in reply to Shooter1]

Shooter thank you for your reply, mo halved dosage to 80 mg for 3 wks with little change so was put back on full dosage, I was gutted, they want to see by taking him off has a dramatic improvement, if not they will continue treatment and I’m going suggest half dosage, if it doesn’t it must be the lack of test surely everything thing else had been negative,as been told it’s nothing to do with his diagnosis at all, i certainly will love and cherish every day for many’s yrs to come along with my darling mom, so good to hear your doing good xxx

[Magnus1964]

I am ñot a believer in taking breaks in a treatment. If it's working, stay on it.

[Shooter1 in reply to Magnus1964]

It made me a complete invalid... Couldn't stay on full dose. 1/2 worked for 3 1/2 years then new mets we just got through zapping, PSA dropping and Xtandi holding old mets in check... Mid way on Proveng right now-infusion Thursday.

[Magnus1964 in reply to Shooter1]

Of course, there are those who cannot tolerate side effects.

[Shooter1 in reply to Magnus1964]

Can't feel hands from upper wrist down. Can't feel feet from upper ankle down. Can't feel face (drink just ran out of corners of mouth when both hands lifted glass to my mouth.) can't feel butt to wipe with dead hands. can't see to read or watch TV, blood and snot running out of nose 24/7. can't wash myself, Yeah, I couldn't handle the side effects. Life is Good, but I needed better QOL. Sorry, but rants feel good some times....

[Kaliber in reply to Shooter1]

Gosh what a whiner … you’d probably complain if you were paralyzed enough that you couldn’t even get out of bed or something !!! Yayahahahaya yayahahahaya. Welp the “ can’t feel you butt to wipe “ part got me. That’s where I’d draw the line …. OMG ……. P U ….. yikes 😵‍💫😵‍💫😵‍💫 I definitely have to “ feel “ er ….ah ….. “ fresh “.

😂😂😂❤️❤️❤️

[Joecarver in reply to Kaliber]

I agree if QOL is gone what is left.

[Kaliber in reply to Joecarver]

Yep .. when you get lemons, sometimes you have to make lemonade. Sometimes QOL is what you make of it. You gots to drag your sorry butt up off that couch and go get some QOL and bucket list things done. Attitude is oftentimes key. Its often not the easiest thing but you never regret it later.

Just say’in ❤️❤️❤️

[Jack02 in reply to Shooter1]

QOL is important I agree with you no point living a life but not living it xxx

[Maidtuck in reply to Shooter1]

If you had radiation to new Mets, can I ask how manyRadiation treatments you needed? Was it a course of many weeks or just a one or two zap deal?

[Shooter1 in reply to Maidtuck]

6 days in a row with 3000 greys to each site. No pain at all now. PSA dropping. RO says cancer should continue to die for weeks or months. Only time will tell. Yesterday's blood test showed PSA dropping below 1.0 again (0.91). Hoping for the best. Life is Good and I feel good again.....

[Maidtuck in reply to Shooter1]

Thankyou for letting me know that. My husbandwill be looking into having it done and 6 days would be okay—we were afraid it might be a six week process. That would be pretty wearing. Glad to hear it helped you!

[Jack02]

Amazing positive attitude amazing!!! It’s not something his mo will keep doing that’s for sure a one off to see if it is, if it is they will try a different treatment or drug if not will go straight back on it in no longer then 4 wks, he rather stay on it if it keeps his APC at bay and keeps him here for many years, your attitude is amazing I’m going show my pa this thank you and all the best for many more years to come and enjoy xx

[Kaliber in reply to Jack02]

Thanks warrior …❤️❤️❤️

[Frigataflyer]

Rants are good. Thanks for yours. I am Just waiting for my first Xtandi to arrive.

[billymc4]

I started on 4x80 mgcaps and hoped would have a cardiac arrest, side effects were so bad. Then looked it up. I was on plavix, a blood thinner, which doubles the effect of xtandi, but had to find out myself and take article to professionals, who were unaware. Cut it to 80 mg and very few side effects. Some drugs are potentiated by other medications.

[Marshb52]

Full dose Xtandi made me so tired and dizzy that I could hardly stand up. 3 helped but so exhausted driving was shaky Went to 2 but continued brain fog and fatigue. I also take Lipton injection We stopped Xantani 3 weeks ago and I feel great. Brain fog is gone I am alert and awake headaches gone PSA Was undectable will recheck next week see what happens on just Lupron . Hopefully that is enough. I’ll report back

[Jack02 in reply to Marshb52]

How long did it take for you to really see the benefits? May I ask it’s only been 5 days and not much change yet, great to hear your feeling so well truly is, xx

[Marshb52 in reply to Jack02]

A week or so. When I nixed the full dose it was overnight

[larry_dammit]

After being on it 4 1/2 years I’m not brave enough to stop taking it. Lord watch over your Dad 🙏🙏

[HopingForTheBest1 in reply to larry_dammit]

Have you been on the full dose, or was it cut back? What side effects have you been experiencing, both long and short term? Any way to mitigate them?

[larry_dammit in reply to HopingForTheBest1]

Full dosage, only real issue besides the normal listed side effects was the adverse side effects when I was on the wrong pain medication, neuropathy was awful

[Shooter1 in reply to larry_dammit]

Agree about the neuropathy. Awful. 1/2 dose and life is worth living..... 4 years or so on it now and new mets zapped in July. Psa dropping below 1.0 again....Hurray. Life is Good.

[Fiddler2004]

Xtandi dosage information, with information regarding adverse effects, they suggest one week off then restart (lower dose if experiencing adverse events). I'm currently at 80mg and all is well... coming up on 2 years. Here's the link that you can share with your oncologist --> bit.ly/3BfrwzJ

[Jack02 in reply to Fiddler2004]

Thank you kindly for the information much appreciated xx

[Fiddler2004 in reply to Jack02]

Your welcome Jack, best of luck for you and your Dad

[ReMarcAble]

Started Xtandi and Lupron a year ago. PSA went to undetectable almost immediately. MO and I agreed to take a 6 week Xtandi holiday. I’ve handled the side effects pretty well but if these drugs have a limited window of effectiveness holidays seem to make sense as long as we stay on top of things.Im nervous but excited about feeling better over these next few weeks!

[CharlieBC]

Jack, I had to do a "reset" when my Zytiga sent my liver enzymes out of tolerances. I just did a 6 week break, and restarted. When it happened again (liver), I had to quit zytiga altogether, and another break to let the enzyme numbers settle. I don't think a short break is bad.