Odd Experience with Zytiga: Just this... - Advanced Prostate...

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Odd Experience with Zytiga

tom67inMA profile image
51 Replies

Just this past Tuesday I started taking Abitron.. Ariba... generic Zytiga and it's been quite an experience so far. So far it's caused a slight aggravation of pain symptoms and a noticeable increase in fatigue. To say my mood has dropped would be an understatement. "Depression" isn't enough to describe the dark pits of despair I've fallen into quite regularly in the last couple of days.

Now here's where things get a bit odd. Zytiga is known for causing hypertension and fast, irregular heart rates. I took my blood pressure this morning and it was something around 115/70 with a pulse under 50. Not only is that fantastic, it's noticeably lower than my more usual 125/80 reading. It's almost as if my body decided to cut way back on adrenaline production.

Just wondering if anybody out there has had a similar "backwards side effect" experience. Also, is there a chance that some of this is just my body getting used to the drug, and things will get somewhat more normal in a week or two?

One final theory: Is it possible it's not the Zytiga, but the Prednisone that's causing this weirdness? If the Prednisone is supposed to counter the side effects of the Zytiga, then maybe it's doing too good a job.

I do have a follow-up with my MO in another week and a half, just looking for ideas and support to help get me through that week and a half. It's been a 5 tissue morning for me and the morning ain't over yet.

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tom67inMA
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51 Replies
6357axbz profile image
6357axbz

Are you taking other ADT as well, like Lupron (Eligard)? I began Abiraterone a number of months after starting Lupron and have felt zero additional side effects.

tom67inMA profile image
tom67inMA in reply to 6357axbz

Yes, I am also on Lupron, Xgeva, celecoxib, atorvastatin, and bupropion with clonazepam as needed (whew!). Just finished 10 days of penicillin this morning. Had docetaxel earlier this year and am still recovering from that. Hello, I'm a walking chemistry set! :-)

My T was checked a couple months ago and came back at <7. There's not much room for Zytiga to lower it even further, but if it's messing with other androgens/hormones then that could explain the side effects.

in reply to tom67inMA

I went thru much depression , even a lot of rage .. I think it just goes with the territory . You’re under assault in every way ..we all are .. Ive had no T for over four years now .. unique or unich both understatements to the powers of no male hormones ....hang in there dude... it can get better ,or you can adjust to the bs in time .. the price we pay ...

tom67inMA profile image
tom67inMA in reply to

I'm already doing much better, but when somebody told me it would be a roller coaster ride they weren't kidding! Since I original wrote this post the worst of the initial side effects went away, then I got my next Xgeva injection and that made things worse again for a few days, now they're getting better again. Ugh, the inconsistency! :-)

in reply to tom67inMA

APC can be a cluster f$$$ of a friend to hang out with . If we don’t push it down it will push us down . Keep some humor handy . All of a sudden we must become mad scientist to save our asses . Se la ve amigo . Keep rockin until the wheels fall off of this old jalopy . Peace Brother. ✌️

whatsinaname profile image
whatsinaname

So very sorry to hear this, Tom. I feel very, very bad for you. Just don't know what to say, really. I have taken Abiraterone for about 50 days along with Prednisone (just before I stopped it for Lu-177) and did not experience anything that you have except for a slight increase in fatigue.

Apart from strongly empathizing with you, Tom, I cannot help much by way of advice. I 'll step out of the way and let the more experienced and knowledgeable take over.

Rooting for you and in your corner, Tom. THIS TOO WILL PASS.

tom67inMA profile image
tom67inMA in reply to whatsinaname

Thanks! Yes, this too will pass, and hopefully there won't immediately be a next thing that also needs to pass :-P

Jbooml profile image
Jbooml in reply to tom67inMA

Abi and ADT is not kind tome cardiovascular but nothing to mood energy etc etc...we’re all just so different

whatsinaname profile image
whatsinaname in reply to tom67inMA

I understand your frustration, Tom. I am in a similar predicament with nothing working for me thus far. Lets hope our luck changes for the better :-)

tom67inMA profile image
tom67inMA in reply to whatsinaname

I've been following your story closely, and get very sad every time you have a treatment that doesn't work. My treatments do appear to be working, but it seems I use the listed side effects as a "to-do" list. :-P Yes, let's hope we both get good response and no side effects soon!

in reply to whatsinaname

I’m pulling for you ...

whatsinaname profile image
whatsinaname in reply to

Thank you very much, Lulu700.

in reply to whatsinaname

I profess that I’m

Praying for you daily brother . My faith is mine alone . Not imposing . Positive vibes and love sent to you . I hope you can hang on the lu-177 and that it cures you . If not plan CDF . You can not give in . Our mutual foe is a real SOB of a buddy to spend time with . Wish he never got invited to our party . .. Id like to push all pc into a dark room and pummel it into submission. There must be some spiritual healers were your at . Just saying . Think out of the box . Your needed here. . Hang in there . I’m praying for miracles . Stay strong .😂

in reply to tom67inMA

Haha. We are all works on process. Walking on rice paper ..

noirhole profile image
noirhole

I switched back to the brand name I was retaining more fluids in my legs and ankles were swelling. It is possible they are not formulated the same. Try switching back. I had to get a doctor's letter saying the brand name was medically necessary. Good luck.

tom67inMA profile image
tom67inMA in reply to noirhole

Did the brand name make a difference? I've never been on the brand name. FWIW, fluid retention hasn't been a problem, as I've instantly lost 2 lbs of water weight. Once again the side effect is backwards.

noirhole profile image
noirhole in reply to tom67inMA

Yup. Back to normal on the names brand. I would say if you can switch and see if it makes a difference for you.

I’m switching back for similar reasons. I have more numbness in my feet and legs which I assume is the fluid retention.

HOPEFULSPOUSE profile image
HOPEFULSPOUSE

My husband was on zytiga for 3 months last year (the brand) and he experienced pretty much the exact side effects you are describing. He made the decision to stop as there was no decrease in PSA.

tom67inMA profile image
tom67inMA in reply to HOPEFULSPOUSE

Thanks for sharing your husband's story. Did he try reducing the dose at all before stopping?

Happily, my testosterone and PSA are already quite low, and the only way for it to drop further is to go undetectable. Reducing the dose or stopping look like realistic options to me.

HOPEFULSPOUSE profile image
HOPEFULSPOUSE in reply to tom67inMA

My husband seems to be very sensitive to meds in general - he did try reducing the dose by 25% then by 50% before completely stopping. Sounds like you're in a good place in terms of your tests results.

tango65 profile image
tango65

You just had chemo. Do you have burning feet or pins and needles in feet and/or hands? If you do you could have a peripheral neuropathy caused by the chemo. Peripheral neuropathies could be associated with a lower blood pressure.

tom67inMA profile image
tom67inMA in reply to tango65

I have just the slightest remnant of numbness in my finger tips. During chemo, I generally had higher heart rates and blood pressure than normal, and they were gradually dropping over the last couple weeks. I started Zytiga and they fell off a cliff.

monte1111 profile image
monte1111 in reply to tango65

Interesting. My blood pressure has been just super great lately. And my mild foot neuropathy is becoming moderate in my opinion. Must research that. Have just weened myself off of prednisone. Walking chemistry set, passing things and cow utters have brightened a depressingly rainy and cold day. Enjoy.

6357axbz profile image
6357axbz

Are you following the timing instructions regarding meals, i.e., two hours after meals and one hour before the next meal?

tom67inMA profile image
tom67inMA in reply to 6357axbz

Yes, been taking it an hour before dinner, and skipping afternoon snacking.

tom67inMA profile image
tom67inMA

So would that imply dropping to 5 mg of Prednisone might help?

harryb48 profile image
harryb48 in reply to tom67inMA

Switched to 5mg of prednisone several weeks ago and it made a huge difference in how I feel, more active now and getting my weight back down.

shipoo profile image
shipoo

A study at the University of Chicago found taking one 250 mg capsule with a low fat breakfast is as effective as taking 4 on an empty stomach. If you are taking 4, maybe you should talk with your oncologist about changing to one with a meal. Another benefit is a huge cost saving!

tom67inMA profile image
tom67inMA

Dexamethasone worked very well for me around docetaxel infusion time. Thanks for the suggestion!

Kaliber profile image
Kaliber

hey man , hang in there things will sort themselves out OK. you'll feel better too. I don't know anything about any of the meds you are taking but I think I can safely say that everyone of us here know a LOT about that tissue box . I can say definitely I do and am not a bit embarrassed to say so. we feel your pain and feel for you too buddy. just try to remember that it's all drug induced ( sounds like in this case ) and it will perk up.

my doctor told me to cheer up , things could be worse !!! I did and he was right !!!

what do you call a cow that's really sad ??? utterly depressed !!!

( yea it's stupid and juvenile but most downer jokes are too dark and morbid here ay ah ayahay ah )

BTW: if you've backed off your opiate pain meds lately , that is a sure source of depression. almost everyone experiences it because your receptors are hammering you the only way they know how to make you give them more !! I hate to stay on mine and have to endure the downer dregs every time I clean up ( every couple of weeks ). serious depressive downer to say the least. a little xanax goes a long way towards clearing up that for me.

.

tom67inMA profile image
tom67inMA in reply to Kaliber

Thanks, and I did the snort-laugh thing at that awful cow joke. It's so bad it's hysterically funny :-)

My moods are definitely drug induced. I'm not on opiates, but am on an antidepressant and medical marijuana. I just looked up drug interactions, and the prednisone may be speeding up metabolism of both and getting them out of my system faster which would definitely tank my mood. I am feeling better this morning, for no specific reason that I can figure out. Damn brain chemicals :-P

Kaliber profile image
Kaliber in reply to tom67inMA

thats moovolous Tom , we're on here to kick the crap out of this PCa , all of us. and all of us want to help each other. " they " might take our balls, but they can't take our gall ! to hell with those those PCa bugs . just hang in there, you got this !!!! ( those jokes used to come from my daughter and they were as awful then as they are now, still funny tho yaahay ahaya ya aa )

tom67inMA profile image
tom67inMA in reply to Kaliber

If you get me started on cow puns, I'll milk it for all its worth.

Kaliber profile image
Kaliber in reply to tom67inMA

ya ahaya yaahaya ya ay < insert thumbs up emoji here > ! those are fun ... stupid ..... but fun. I'm going in the other room and eat half a Sugar Black Rose brownie , made with cows milk of course !! yummmmmmmm yummmmmmmm got a little caramel drizzle on mine.

leo2634 profile image
leo2634

Talk to your doctor first before deciding what to do. I've been on Zytiga,Prednisone, Eligard, and Xgeva 16 months now had all the side effects you mentioned although not as severe. It did get better for me and I'm on the generic Zytiga its made by a company called Teva. I've seen no change from the real Zytiga which I took for over a year other than more fluid retention in my ankles. All of my numbers have stayed the same, I'm on 750 mg. And 10 mg. Prednisone. Leo

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

Tom I no longer use tissues for my tears....I just let the tears roll down over my TITS and let them tingle...Aw what I was missing all my life thinking with my little head...now I think with my nipples.... Hang in there... and btw NYC doesn't miss you👀

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/19/2019 1:22 PM DST

chipler profile image
chipler

A 10 point change up or down in BP is really not significant.

Don't sweat the small stuff. A drop in prednisone may be all you need.

Hang in there.

herb1 profile image
herb1

tom67, My experience with prednisone (for other issues) was that it caused my bp to increase significantly. It also caused an increase in Glucose and in appetite. All went back toward normal when I stopped the prednisone.

Caring7 profile image
Caring7

My husband was hyper on 10 mg pred. No problem dropping to 5 mg. Unless your doctor is far away make a closer appt and call him ASAP to make sure he is ok with less pred.

and see if he has other ideas. Good luck getting it managed.

Oregon56 profile image
Oregon56

I've had such a negative experience on that combo that I've decided to stop all of my treatments which also inclued Lupron hormone shot. My oncologist just basically said was suck it up and have a better attitude. So I'm going on 30 days now and withdrawals of all cancer meds. I had a reoccurrence of my cancer in July as its spread to my lymp nodes and the combo of treatments has led me to deep depression, extreme pain and reviewing options to end it all. I had my prostrate removed in 2013, 82 radiation treatments and chemo in 2013.

Good luck and I hope you have a better experience than I've had. Its interesting my BP did drop but gained 20 lbs and pain level increased dramatically. Hopefully we can keep in contact and I'll let you know how my experience goes without any meds because I can't take this life with the Zytiga Prednisone and Lupron schedule. I'm going cold Turkey so far it's been an emotional rollercoaster.

tom67inMA profile image
tom67inMA in reply to Oregon56

So sorry to hear of your struggles! Since my original post I've bounced back a bit so I'm going to see what the next couple weeks bring and then discuss things with the onco at the end of the month. This is no picnic but it seems to be working and my pain levels are much lower than they were 6 months ago.

Hopefully you at least get some symptom and side effect free time off the meds. We all have to choose our own path so best of luck to you!

Trouble19 profile image
Trouble19

Prednisone most likely is the culprit. When my husband was on Zytiga he too suffered from exhaustion. He had never had a problem with blood pressure, but his curse is diabetes. Prior to starting the drug he took a couple of oral medications to control his blood sugar. Once he was on the Zitiga his sugar levels went crazy.

200, 250... He ended up on insulin, until the Dr. cut the dosage of prednisone. He ended up having to change drugs because of the impact of prednisone. Hang tough, many of the drugs can trigger depression and give you a run for your money. Lots of luck!

gleason9guy profile image
gleason9guy

I'm currently on Lupron, and was taking the Zytiga and Prednisone. I found the exact same thing, that I felt the Zytiga-Prednisone combo was amplifying the side effects I was already experiencing on Lupron. I hung in there and got my doctor to agree that week-long breaks from the Zytiga were necessary when I just couldn't handle it anymore. But on the positive side, I did eventually finish all of my Zytiga and made it through the other side. So keep on and do what you need to do to get through it all.

tom67inMA profile image
tom67inMA in reply to gleason9guy

All of your Zytiga? You're not on it indefinitely?

gleason9guy profile image
gleason9guy in reply to tom67inMA

I was put on Zytiga and Prednisone when I started the Lupron. That was in October of 2017. The oncologist wanted me on all of it, while the urologist supported saving the Zytiga until later. I finished the Zytiga in April and just came back from an appointment with undetectable PSA numbers. Although it feels like I'm dying usually, the oncologist essentially says that I should stop bitching and deal with it. He wants me to try and stay on the Lupron for another year. Hopefully, I won't have to see Zytiga ever again.

tom67inMA profile image
tom67inMA in reply to gleason9guy

Ah, got it. I'd be very curious if you stay undetectable on the lupron alone and how much better you feel.

gleason9guy profile image
gleason9guy in reply to tom67inMA

I'm still undetectable. But my neuropathy is still daily and can be painful. My liver is very sore frequently, but all of my blood panels look good. Just hangin' out for the time being!

FightingforSmith profile image
FightingforSmith

My guy dropped the prednisone entirely (on generic Zytiga and Degerelix/ Xgeva). It was causing severe reflux issues and precancerous issues in his Esophagus (as well as some incontinence). Does fine without it. More fatigue w Zytiga, more muscle loss

tom67inMA profile image
tom67inMA

Just a quick follow-up for anybody reading this now or in the future: Since my original post, things have been improving greatly. I've had three really good days in a row. Today I did some brush mowing, cleaned up some downed trees with a chainsaw, and then after a bit of rest went for a 6 mile run/walk. What would I do if I wasn't so fatigued? :-)

Haven't made any changes to the dose, so it just seems my body took a few days to adapt to the drug. Still have some digestive issues but energy and mood seem to be good now.

MisterBebop profile image
MisterBebop

I had a drop in blood pressure with Lupron too. My heart rate is about 80 and I wish it was closer to 50 like yours. "Lupron Brain" is my gripe, and not so much fatigue, but call it loss of incentive.

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