Zytiga starts in the morning - Advanced Prostate...

Advanced Prostate Cancer

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Zytiga starts in the morning

thevvy profile image
49 Replies

Well, here we go. I collected my Zytiga and Prednisolone from the pharmacy to day.

Full cost of the Zytiga is $3306 per month, but thanks to the Aussie PBS and my pension card it costs me $6-80.

I just read through the list of side effects for the Prednisolone. WOW .... just ... WOW!

Talk about the cure being worse than the disease!

Not sure I am really looking forward to this.

By the sound of it, if I wasn't sick before, I will be soon!

No wonder they got me on 3 weekly blood tests, and 6 weekly scans!

But on the bright side, I guess a lot of you guys have been through all this before, and are still here helping each other (and ME ... thank you for that!)

So the journey begins!

See how I feel in a few days. Certainly pick a good time to finish lining the patio!

Cheers cobbers

Thevvy

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thevvy
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49 Replies
Tjc1 profile image
Tjc1

Hi thevvy, the Zitiga may not be so bad. We all handle treatments differently. I myself was given Xtandi because its easy on the liver and no blood test are needed constantly. I have read as many post where guys had little or no side effects from both Xtandi and Zitiga. Well Xtandi floore d me with fatigue and muscle weakness. I dropped from 4 pills to 2 and its much better. Will find out in a month weather it will still work controlling the cancer. I hope you are one of those that have little or no side effects!

Thomas

keukalake profile image
keukalake in reply toTjc1

I'm in exactly the same boat regarding Xtandi. So tiring it's a challenge to function. I have also dropped back from 4 to 2...same question, I can function better. but is it doing any good ? Guess we'll find out at next months appointment. I switched from Lupron to Xtandi, if possible I may switch back. Best wishes to all. K

Tjc1 profile image
Tjc1 in reply tokeukalake

Im still on Lupron too. Strage they took you off of it.

rococo profile image
rococo in reply toTjc1

Is xtandi alone lowering your psa

Tjc1 profile image
Tjc1 in reply torococo

I still get the Lupron and i take the Xtandi.

AlanMeyer profile image
AlanMeyer

Hello thevvy,

I've not had Zytiga but have had prednisolone and not noticed any bad effects from it. As with most drugs, some people get blasted by them and others sail right on through. Hopefully, you'll be a sailor here.

Best of luck.

Alan

in reply toAlanMeyer

Sail on thevvy! You got this!,

Dan59 profile image
Dan59

Thevvy , When fasting with zytiga, I always took it on my 5 am wakeup and went back to bed for another hour before getting up for breakfast. I have been on various oral steroids for years, and no real side effects. Prednisone for at least the last 5 years two a day now. For a while on zytiga I did just one 5 mg prednisone, The thought from My Harvard Med Dr. was that at 5 it would allow the adrenals to produce some of what was needed and keep them working. For now just go with the 2 and see how it goes. Steroids are actually known to have an effect on cancer. I saw a study recently when zytiga stops working , sometimes an additional response can be had by switching steroids to dexamethasone, It should be one of my post, good luck with the zytiga, not every one gets the side effects , just something to be aware of.

JamesAtlanta profile image
JamesAtlanta

I’ve been on Zytiga and prednisone since December. PSA response has been great (back to undetectable) and no real side effects other than perhaps a bit more fatigue. Still working full time.

Steroids can give some problems to some people (I occasionally get an occular migraine that bothers me for 30-minutes, for example). But not really any issues from it.

Don’t fret it! You will do just fine!

Best,

James

It’s a nightmare.. No sugar coating treatments and their effects. So sorry. Sounds like your getting onboard and gonna get your ticket punched. Lord have mercy. The choices that face us.. Do what YOU feel is right. It boils down to just that. Doing what you must to extend life and quality of life. It all heavy on the heart body and mind. Buckle you seatbelts ... Alll Aboaard! I believe you are making the best choice for you and your family. Everything will be put thru the cheese grater trying to eliminate the bad cells. Keep you soul and spirit out of the grater . The flesh is weak . Keep your love and sprit in tact, because you will be testing. No doubt that you will pass this first test. Stay positive as much as possible. I’ve had anger issues before in life . So if you remain calm my opinion is that you’ll live loner just from that.. Keep working. You could be one that breezes through treatments. Good luck thevvy!

thevvy profile image
thevvy in reply to

Thanks cobber

It's all gunna be good.

Between my kids, my wife, and quite a few ratbag mates, I won't be game to be anything but positive. Geez, I'll be too interested to see what the lot of them no-hopers get up to next, to worry about feeling all depressed, sad, or angry.

'Bout the only luck I need will be to survive the practical jokes that are being pulled on me constantly.

Sad part is I can't enjoy as much Bundy Rum with them as I used to, but bloody hell it's so much funnier when when they're maggotted and I'm sober!

Hang in there Lulu

cheers

Thevvy

It’s good your Aussie plan picks up the bill . As they should. Aren’t you heavily taxed for this benifit ?You paid into it. Very good indeed.

thevvy profile image
thevvy in reply to

Nah ... Aussie taxes aren't that bad .. less than 30% for most, and after deductions ity's not that bad at all. Specially now that I am on the pension (thanks to 2008) and in need of seriously expensive drugs and treatment. With Aussie Medicare, my Oncologist costs me zilch!! And the one one I've fluked gives the same level of care to public patients as he does to his private patients.

With my angel onside, and a new angel in the shape of prostate cancer nurse, Sophie, and with my network of mates and ex-work colleagues my head is firmly grounded and going in very much the right direction, despite a major 3am meltdown the other night,

Lots of laughing and joking and not taking anything too seriously seems to be working just fine for me.

The support from this group is unbelievable, and I am so glad I found you all.

Took my first1000mg of Zytiga this morning at 0600, then went back to sleep for a couple of hours. Took the prednisolone with my other pills at about 0830.

Well, I have had a few hot flushes (flashes) on Triptorelin and Zoladex, but man ... this Zytiga got me up to temp in no time. By 1400 I had to change my tee shirt and hat! This is gunna be so much fun this winter, when the wife wants the heater on, I'll be chillin outside in -1 with me finches.

Picked up some D3 and K2 spray at the chemists today along with Magnesium, Calcium and Curcumin.

Quick question for those in the know ... I injured my back when I was an Ambo/Paramedic back in the late 70's. The last couple of years it has been giving me curry, and I have been told not to take my anti inflammatories while I am on prednisolone. As this is an anti inflamatory (sort of) will that help my back??

Cheers all

Stay happy and as healthy as you can

Thevvy

auroracham profile image
auroracham

Yes join the journey and the fight. Onward we go. Been doing it since August 1. Other than sleep problems from the Prednisone, no real issues. I am a PSA wanderer. Mine is never very low, but averages around 3.3. Up, down, learning to live with that now. Was driving me crazy. Thank goodness for Medicare and my employee plan also. Welcome.

Olivia007 profile image
Olivia007

That’s cheaper here in the USA my dad would spend $7500 a month if he didn’t have private insurance along with Medicare that’s amazing it’s about $2500 more in the USA. Thank you for sharing.

Olivia

bjevans1258 profile image
bjevans1258 in reply toOlivia007

Hi Olivia007. How much does your dad pay? My husband has private insurance, and has to pay $700 for a months supply. He's 69 and didn't sign up for Medicaid at 65, now wondering if he should despite the Medicaid penalties he'll have to pay.

Olivia007 profile image
Olivia007 in reply tobjevans1258

Hello my dad pays $40 a month for the Zytiga and $10 a month for the prednisone. Like I said thank God he has Medicare and a Private insurance he pays for monthly otherwise he would say screw it it’s very expensive. Hope that helps.

Olivia

bjevans1258 profile image
bjevans1258 in reply toOlivia007

Thanks so much, appreciate the info. We're in Washington State, insurance is Blue Cross/Blue Shield - Federal. Will look into getting him onto Medicare, much cheaper than $700 /month.

Olivia007 profile image
Olivia007 in reply tobjevans1258

No problem I just assumed doesn’t everyone have to get Medicare even if u have private insurance once you hit 66? We r in Michigan Just wonderIng if every state is different ?

bjevans1258 profile image
bjevans1258 in reply toOlivia007

No, you don't have to get Medicare part B if you don't want to. He elected not to, but now we're probably going to get him on it. Penalty is 10% per year and he's 69, so a 40% increase. Cheaper than paying $700 a month tho. I figured his Medicare part B will cost an additional $54, on top of the $135 per month.

FYI, my Mom never elected to get Medicare B as she also was a Federal worker with Blue Cross/Blue shield. Just a choice she made way back. She is 86 now.

Olivia007 profile image
Olivia007 in reply tobjevans1258

Thank u good to know best of luck to u both.

Olivia

bjevans1258 profile image
bjevans1258 in reply toOlivia007

Thank-you. And good luck to you and your Dad.

Pwjpp55 profile image
Pwjpp55

Hi: I just started on my second month of Zytiga/prednisone. So far my side effects are nonexistent. In addition, my PSA went from 60 down to 6 in 3 weeks! I had Lupton too, but at this point I'm a Zytiga fan.

Go get 'em!

in reply toPwjpp55

Go Zytiga..

RonL profile image
RonL

I’ve been on Zytiga/Prednisone for over a year now and experienced no significant side effects other than those I was already enduring from the Lupron injections namely fatigue and ED.

Schwah profile image
Schwah

Been on lupron zytega and prednisone for 8 months. As I've posted before I work out hard 3 days a week. Mostly weight training. My dr had told me how much it helps. I actually feel great. I've lost 10 pounds and PSA down to .05. Highly suggest weight training while on this stuff.

joancarles profile image
joancarles in reply toSchwah

Hello, do you train with weights? Do you have bone metastases?

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

"By 1400 I had to change my tee shirt and hat!" HAT? HOLY DOOLEY!

Last time I went to sleep with a HAT it was called a HELMET.

GOOD LUCK AND GOOD HEALTH.

j-o-h-n Friday 04/20/2018 5:59 PM EDT

thevvy profile image
thevvy in reply toj-o-h-n

j-o-h-n ....... who was sleeping ..... was out helping my son build a shade house for a customer ... only a little one tho ... about 14 metres x 8 metres and 4 metres high ... temp was a mild 28 C ... maybe a bit warmer up the ladder cause I was closer to the sun .. this morning all has been good in the hot flush department only had about 3 since I woke up at 0600 for my zytiga ...couldn't go back to sleep tho so I started fitting a new transmission cooler to me Nissan Patrol. Not hard, just fiddly .... Then this arvo with a bit of luck I'll get to try it out when I hit the beach for some Australian Salmon fishing ... mate went out yesterday and got his bag limit of 4-5kilogram fish, so I'm keen!

Good onya cobber

you hang in there

ps: If ya didn't fall outa bed so much ya wouldn't need a helmet hahahahahaha

j-o-h-n profile image
j-o-h-n in reply tothevvy

oops.... you got me ya bugger.... I should have said I was "ROOTing" a great FANNY instead of sleeping and the helmet was for protection (don't want to get her preggers, get my drift?).

No wuckers, have a naughty...

GOOD LUCK AND GOOD HEALTH.

j-o-h-n Friday 04/20/2018 10:46 PM EDT

thevvy profile image
thevvy in reply toj-o-h-n

HAHAHAHAHAHAHA ... onya cobber .... be good

in reply tothevvy

Salmon mmmmm

thevvy profile image
thevvy in reply to

Yeah, but not the salmon you're thinking of ... they NEVER go near fresh water ... spend all their life at sea. Kiwis call them kahwai ... bloody nice to eat frsh.

in reply tothevvy

Learned something new. Thanks

thevvy profile image
thevvy in reply to

Your welcome, ol' mate! Good fun in the surf on light tackle. Grandson (6yo) just caught a 12lb fish this afternoon at Wanna Beach near Port Lincoln. Bloody fish was nearly as big as he is!

in reply tothevvy

That’ll be the big fish story of his life with grandpa. He’ll never forget it. My skin is turning to leather .Someone turned on the heat. Heading for the hills ASAP.

thevvy profile image
thevvy in reply to

We're just coming out of Summer into a very warm autumn (fall) So far the temp hasn't dropped far at all, and we've had a few 38-40 degree C days ... mild 25 at the moment, but blowin a bit. Some snow would be nice, but climate change won't deliver that to Wanilla for a few years yet lol

in reply tothevvy

You need a temp drop We re completely opposite / 100 f here by next weekend. Amazing planet. Mother Nature rules. High fire danger in our four corners region of the south west. It’s more typical than not .. thevvy. Grandchildren of my own is not going to happen for me. Kids are the joy. I’m smiling with this image of you him

And that 12 pounder. Wonderful

Moment for a kid to be with his grandpa catching a fish as big as he is.🇻🇬 A “ Big Fish “ story to tell his kids about someday.

thevvy profile image
thevvy in reply to

Mate, he's still got a grin on his face from ear to ear. Wish I could post a photo here to show you. The look on his face ...Wow!!

We've had a mild summer by our standards, with only a handful of days over 40C (104F) but a couple that were 47C (116F). I'm a volunteer firefighter with the Country Fire Service, but this summer looks like being my last fire season. I think that now I would probably be more of a hindrance than a help. Won't quit completely, might stay on as a radio operator. We'll see.

Hope you enjoy the mountains!

Cheers

Thevvy

in reply tothevvy

Radio operator sounds fun. Salute you thru this season . I’ll be praising the mountain air... and water.. when you spend years on the desert floor you dream of these things. I m fortunate to be able to swim in rivers and hot springs and take in the majesty of the Rocky Mountains . There is solace in nature and peace...

in reply tothevvy

Dear sir, doc jokingly says that i am cured.. no signs in scans and undetectable PSA> not bragging just saying it is possible for others if i had some success with initial treatments then you can too. I’ ll be skipping all summer but also praying for you too to feel better. Thank you and keep up the sails...

thevvy profile image
thevvy in reply to

WELL DONE!! I am truly happy for you! Stay positive and keep up the good work

Thevvy

in reply tothevvy

Thanks thevvy .. stay busy .. enjoy the family...

thevvy profile image
thevvy in reply to

You betcha!!

rxearl profile image
rxearl

I have 6 empty zytiga bottles staked in my trophy case. Hope I can add an empty bottle for many years. Cost on Medicare is $550.00 a month but better than the 10 thousand it costs every month!

thevvy profile image
thevvy in reply torxearl

Now there's a thought! Good one rxearl .. I might borrow that idea if I may, and start a trophy cupboard of my own.

I mightn't be able to beat this bastard, but by God, I intend to run it hard until it stops tryin!!

Stay strong rxearl

RonL profile image
RonL

I started Zytiga+Prednisone about a year ago haven’t experienced any additional side effects beyond what I already had with the Lupron.

Daddysdaughter profile image
Daddysdaughter

Hi, how is the Zytiga going? My father just started 2 days ago. We are praying that it works. Have you had any side effects?

thevvy profile image
thevvy

First day was crap! Full on hot flushes (flashes) the whole day! Next day and since then have a few each day, but very bearable and easy to cope with. Seem to have lost a bit of strength, but I have been on Triptorelin and Cosudex since March, so they probably are to blame for that. So far (fingers crossed) its been easy peasy!! Say hi to your Dad, and tell him and everyone around him to stay positive!

Cheers & good luck

Thevy

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