Xtandi: Well I was on Xtandi for 2... - Advanced Prostate...

Advanced Prostate Cancer

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Xtandi

roncyn profile image
29 Replies

Well I was on Xtandi for 25 days and PSA went from 6.51 to .61 quite a fast drop! Then I had to stop the Xtandi as I was having almost panic attacks and insomnia and restlessness and right back muscles.. I stopped on nov 20 and due to the half life last night I had a full nights sleep. The anxiety had gone down.. Anyone else experienced this..

BTW I take 5/325 hydro for pain and sleep at night 1 or two 2 pills. Stopped taking those about three days ago , so trying to figure out what the cause is.. I have been taking hydro for years and had no problem. So the new drug Xtandi was added I had those symptoms...

I am starting my 24th year of PC at 50 years old..

Ron

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roncyn profile image
roncyn
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29 Replies
Shooter1 profile image
Shooter1

After a break, you may want to try it again at 1/2 dose.. That's all my body will handle.

roncyn profile image
roncyn in reply to Shooter1

That’s the plan to see if the negative effects come back.. They were horrible..

Shooter1 profile image
Shooter1 in reply to roncyn

See my posts-- so were mine. Good luck on reduced dose.

tallguy2 profile image
tallguy2

Wow you are a survivor! My father had a seizure on Xtandi.

Best wishes.

Schwah profile image
Schwah

Wait, is that a typo? You were saying you were diagnosed with prostate cancer at age 26? I never heard of somebody with PC at that young of an age. What a nightmare! So sorry you’ve had to deal with this at such a young age.

Schwah

roncyn profile image
roncyn in reply to Schwah

NO diagnosed at 50..

Schwah profile image
Schwah in reply to roncyn

Oh still very young. Mine wasn’t till 58

larry_dammit profile image
larry_dammit

Xtandi does not like a lot of pain drugs, I had to switch to Ms Cotin a morphine pain pill , I was on OxyContin but wow the more I took the worse it got . Talk to your doctor he should be aware of that. Keep up the fight warrior 🙏🙏🙏

braddockroad profile image
braddockroad in reply to larry_dammit

That's interesting. I have been taking Diclofenac and Gabapentin for leg pain associated with slipped lumbar disks. I switched to Xtandi a month ago and began to have fatigue and leg and foot swelling. MO allowed me to halve the Xtandi dosage and most of the SE's dropped. Wonder if it was the interaction?

larry_dammit profile image
larry_dammit in reply to braddockroad

Xtandi has a full time pharmacist that can answer your questions about drug interactions. Very helpful.

roncyn profile image
roncyn in reply to larry_dammit

Thanks Larry I’ll check it out!

j-o-h-n profile image
j-o-h-n

26 + 24 = 50.........Tell us how and why they diagnosed you at age 26.... Keep up the good work... Your userId reminds me of a cigarette lighter........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/30/2020 6:42 PM EST

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

Lol

I bought my wife one of those for Christmas one year ... came with a tank of refill gas. my wife is a heavy smoker.

Anyway think she used it til the gas ran out and put it in her “ special “ drawer ( rubber bands, coupons, old wall warts , old dead batteries , mic hardware etc ) ..

Saw her out in the back yard last week making BHO with the can of gas. ( not really , this is just a antidote [ boredom def ] , I know you’ll look up BHO )

😂😂😂😂😂

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

As you rightly assumed I did "look it up".... Google stated that BHO it's used to remove ear wax...and to lubricate your nipples.......

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday12/01/2020 4:55 PM EST

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

That earwax angle might be interesting ..even handy ... dunno much about the nipple thing .. only seen those in pictures or a mirror in the last 30 years yayahahahaya. Pointless now tho anyway ....huh ... amazing how your life can change so much. Sometimes I look back and think about all the opportunities I squandered ...woulda, , shudda , cudda.... oh well..... dang it ... yayahahahaya yayahahahaya

😂😂😂😂😂😂

Interestingly, one form the product of making bho is called “ wax “ and looks exactly like earwax. That starts going off sideways in creepy directions . Yayahahahaya

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

It also mentioned that if you chew it.... you start to reminisce....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday12/01/2020 5:21 PM EST

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

Omg yayahahahaya yayahahahaya. Too late to spit it out now .. yikes.

Bho is a super thc concentrate , possibly the most potent form of cannabis anywhere. A tiny piece the size of half a match head is equal or better to three big ole top shelf joints ... it’s smoked in a special vaporizing pipe. One puff is usually more than enough with good quality decarbed product.

Of course this is just what I’ve heard , I wouldn’t know anything about it myself . Even here in a recreational cannabis state where cannabis products are sold in corner 7 - 11 stores ( figuratively speaking ) ..... concentrates made with solvents like butane or CO2 are still , stupidly, illegal. Its because people stupidly keep blowing them selves up or catching their houses on fire making bho at their house or apartment using butane canisters. The butane escapes during the process and fills the room down at knee level ( it’s much heavies than air ) , a spark happens then a massive explosion. People know it’s happening and “ still “ do it anyway. Go figure. Just FYI ...

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

Thanks for the info..... you think I can get it gift wrapped like a fire place log for my ex-wife before Christmas?

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday12/01/2020 6:04 PM EST

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

Probably if you write Ted Kaczynski in jail he’ll know.

Just say’in 😂😂😂😂😂😂

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

I'll call him..... He and I went to the same University together.... He always used to kid that he got is surname from the last line on an eye chart.....He has a good sense of humor......but he bombed out getting laughs from the University Faculty....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday12/01/2020 10:41 PM EST

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

That was an Indian School wasn’t it .... Bombbay University ? My doctor went there too ...Dr Bennyboombah.

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

He did..........and he was the one who told us how does an Indian know he's hungry? Answer: His a-hole stops burning......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday12/02/2020 5:15 PM EST

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

Ewwwwwwwwwww .... preparation H time ... 😂😂😂😂

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

Sorry I wrote it goofy ..fuzzy brain.. diagnosed at 50 in 1997 october.. will be 74 this March..

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

Not to worry.... we got you one of the best rooms in Bellevue (visitors allowed)....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday12/01/2020 10:46 PM EST

Lynsi13 profile image
Lynsi13

My dad's oncologist said that he has several men on only one pill rather than four with Xtandi and that they not only tolerate it well but it seems to be just as affective! Perhaps when you restart, you'll find a dose that not only works but doesn't have the adverse side effects!

roncyn profile image
roncyn in reply to Lynsi13

I hope that works will find out..

since the psa is good I would opt for xtandi

in reply to

Yes, exactly what we are doing. Oncologist pushing zytiga but said she didn’t have a prob with the xtandi.

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