I am new here

[jbskiatook]

Started taking Xtandi 8/2/2021

[Tall_Allen]

I hope it works for a long time!

[jbskiatook in reply to Tall_Allen]

Thanks, me too.

[Magnus1964]

Is xtandi the first drug you have taken or did other drugs or treatment precede it?

[jbskiatook in reply to Magnus1964]

I was on intermittent Lupron for 10 years.

[Magnus1964 in reply to jbskiatook]

You respond well to treatment, that's great. Here's hoping you do well on xtandi.

[Hidden in reply to jbskiatook]

10 yrs ? Dam ! You are a vet .. welcome

[Spyder54]

Yes, I too hope it lasts a long time! I read your Bio and see that Lupron failed after 10 years (since 2011). That is a good run! I had T rise 2 months in a row on Xtandi after starting. PSA then reversed upward. No one could explain. I switched to Zytiga which many said often will also fail, but T went back to near zero, and PSA followed reversing downward. “Never give up, Never give in”. Cure is coming. We just have to hang in long enough. Best,

Mike

[jbskiatook in reply to Spyder54]

This is good to know.

[Pancake_Lefse in reply to Spyder54]

🥰❤️😘

[Survivor1965]

56 months on Xtandi. As far as I’m concerned Its a miracle drug. Do I hate it, yes. Do I love it, yes!

[jbskiatook in reply to Survivor1965]

I read your home page about how xtandi turned your prostate cancer outlook around. What a story and I hope it works as well for me. I am 79 years old and on Medicare with a prescription plan also. I only have a low prescription cost plan so for this drug the first month was $2800 and the next months will be $600 since I am now under catastrophic part of the plan. I have not looked at any other plans as I am busy with other things. The actual cost is around $12,000 per month as far as I know. Have not researched it much. There are other income dependent plans your doctor and you have access to. This could bring you cost to as low as $50 per month if you would qualify.

[Spyder54 in reply to jbskiatook]

Remember…..Abiriterone/Zytiga is now offered as a Generic drug and should be cheaper. You should inquire. Both Zytiga and Xtandi block T produced by the adrenal glands. Lupron and Firmagon block T produced by the Testicles.

[jbskiatook in reply to Spyder54]

This is good to know and towards the end of the year I will talk to my doctor about this. I need to see how this Xtandi is actually going to work for me 1st. Were you on Xtandi long enough to compare the side effects between the 2 drugs?

[Spyder54 in reply to jbskiatook]

Xtandi for 2 mos. Zytiga now for 7 months. Both had similar effects. Everyone is different. For me….fatigue, hourly hot flashes, loss of muscle tone, brain fog increasing over time, some neuropothy in finger tips and balls of feet. BUT, if it keeps PCa in sennescence (dormant), then whatever. All minor inconveniences.

[jbskiatook in reply to Spyder54]

Did you find that Xtandi was higher cost than Zytiga?

[Spyder54 in reply to jbskiatook]

Yes. Xtandi more expensive

[jbskiatook in reply to Spyder54]

😒

[Atlpapa in reply to Spyder54]

as info - Xtandi does not block T production, it is an androgen receptor blocker, meaning it prevents the cancer cells from receiving the T

[jbskiatook in reply to Spyder54]

This is good to know. Thanks

[Hidden in reply to Survivor1965]

Adt is dammed if we do , dammed if we don’t . I’m probably alive due to it … it ravages a guy . 👍

[2dee]

Contact the manufacturer pharmacy and request financial help.They were so kind to include me in an annual renewable program where they picked up all of the horrendous copay after proving financial status.

Been on Lupron for 3yrs and added Xtandi 13mos ago.

Miracle drug for ME with the normal side effects.

My PSA starting to slide back up so will make a change soon.

BRCA2 positive. Not sure of path just yet. But Xtandi brought MY PSA down to less than 1 for many months.

2Dee

[jbskiatook in reply to 2dee]

Thanks and this seems like what Spyder54 experienced also.

[londoncyclist48]

I've been on xtandi for ten months. PSA at start after degerelix was 0.33. Hovered around 0.17, 0.18, 0.19 for a while. Latest was 0.13. That was the first significant drop since the degerelix. I don't get any of the side effects that others talk about but I did get headaches to start with. I think that may have been something else though.

[jbskiatook in reply to londoncyclist48]

That's good to know perhaps these headaches will go away soon.

[larry_dammit]

Welcome fellow warrior

[jbskiatook in reply to larry_dammit]

Reading your homepage I cannot tell how long you have been on Xtandi. If I understand what I have read you had a pretty serious situation to deal with.

[larry_dammit in reply to jbskiatook]

I have stage 4 with Mets. , spine, pelvis area and sternum,plus. I started on Xtandi just before Christmas of 2016 . A little over 4 1/2 years.

[jbskiatook in reply to larry_dammit]

All I can say is WOW you have had a battle. I wish you the best.

[rm9x]

I take Xtandi before bed (vs morning) to reduce fog head during the day.

[jbskiatook in reply to rm9x]

This is what I do but so far my bedtime starts hours after I've taken it. Since I've only taken at twice this sleep problem may just be coincidental.

[john205]

I am happy with Xtandi so far. Some mild fatigue is the only issue and it's not that bad. I was doing well with Lupron and a course of chemotherapy in 2018. After 2 1/2 years, my PSA began to rise again and I started Xtandi in November 2020. My PSA rapidly dropped to the lowest level ever and is still going down. I have no signs of active disease right now so I am hopeful it will work a lot longer.

My cost has been exactly the same as yours. I did not find any less costly plans but the drug company has an assistance program for high co-pay if you qualify. It's worth checking out. All the best for your success.

[jbskiatook in reply to john205]

My only real concern about Xtandi are the side effects. I dread the fatigue and most of all the insomnia. I've only been on this for 2 days but I have not been able to go to sleep before midnight. Probably way too early to be thanking these thoughts.. I'm so happy to hear about success stories such as yours and look forward to seeing how you progress through the years. Thanks snd my name is John also.

[john205 in reply to jbskiatook]

I have not had insomnia. Regular physical activity seems to help with the fatigue. I suspect it helps with sleep too. Nothing more than a nice walk for an hour or so each day seems to do it.

[jbskiatook in reply to john205]

I agree and I was active until the last couple weeks. Here in Oklahoma it's been extremely hot but we have a few days of very cool weather now. Our gym has just opened and now I just need to get into the routine. Very good thoughts, I will see if I can do my part.

[Madbeach]

Hi…my hubby just stated his Xtandi on July 9 and so far, only a hot flash a few times; however, his doc said to just start on 3 pills til our next appt. but 4 pills is the recommended dose (4 x 40 mg). He also started receiving a six month injection of Eligard on May 28, 2021. So far, he seems to be tolerating everything well. So, best of luck to you on your journey. I hope you have much success with your meds and your outcome. We all can only take one day at a time.

[jbskiatook in reply to Madbeach]

Thanks

[jbskiatook in reply to jbskiatook]

I started on 4 pills but now I was moved to 3 pills since I had insomnia and constupation which I am dealing with. What I really want to tell you is when I became castrate resistant I actually was castrated and later after healing had a penile implant installed. This is changed my relationship with my wife , everything is dependable and and I just wish I had done it a few years earlier and did not have the need for tle Lupron. So many years of marriage and memories I found that we seen to be more in love than ever. Also no chance of penis shrinkage. I did get the best unit possible which is made by Boston scientific but I can't tell you right now what the model is.

[pdaleuski]

I have been on Xtandi for 9 months and my PSA went from 538 to below 1. My Doc has changed my dosage from 4 pills a day to 3 so let's see how that works out.The side effect I am having is fatigue I make it until around 6 PM and then I need to lay down.

Also, have hot flash's but all in all, am very please with these results..

I hope it works as well for you.

[jbskiatook]

WOW That is a great result and I hope that's what will eventually happen to me. Thank you very much for that information. John

[Nous]

hi ... the sharing of thoughts and experiences by each one of you in this thread is so helpful ... thanks ... best wishes ... Nous