Horrible zytiga side efffects

[Blair77]

My 48 year old husband Started Zytiga about 14 days ago. The last 7 he has felt awful: sweating, dizziness, nausea, light headed and generally awful. Is this the norm for Zytiga?

[Tall_Allen]

Yes, those are common side effects. But some may be because his cortisol levels aren't being sufficiently replaced or over-replaced with prednisone ( dose should be two 5mg tablets/day). Not a bad idea to alert his oncologist and to have his BP taken and some blood work done (ACTH, electrolytes, glucose).

[easeytiger]

Hi. I've been on Zytiga since January. Also on Firmagon for the same amount of time, so hard to put side effects to one or the other. Night sweats, muscle aches, tiredness, I remember dizziness in the beginning but that subsided. As a lot of people say here, exercise seems to combat the tiredness. Good luck.

[Canoehead]

Zytiga side effects are generally tolerable, much milder than Lupron or Firmagon, which are the main front line ADT drugs, and I’m guessing your husband is also on one of those. Some docs believe the recommended prednisone dose with Zytiga is high, so that is worth checking out.

[DeanNelson in reply to Canoehead]

I go to MDA, my ONC only wants me on 5mg per day

[Blair77 in reply to DeanNelson]

He is on the 10 mg of predinisone. Maybe, that’s why? I hope 🤞

[MMMayhem in reply to DeanNelson]

Same here. My diabetes was already somewhat out of control, so when they started me on zytiga they had me on 5mg of prednisone to start instead of 10. As already suggested get his bloodwork done and suggest they refer you to an endocrinologist. I've been on lupron for 14 days and today is day 4 for zytiga. So far, nothing, but I'm sure that's about to change.

[Break60 in reply to Canoehead]

Glad to hear they’re milder than Lupron and bicalutamide! Probably next for me.

Bob

[jholmq in reply to Canoehead]

Agreed, I've been on just one 5mg pull per day.

[DeanNelson]

Blair77,

I can't believe I just saw this post...

I am 54 and started Zytiga/prednisone about 7 weeks ago. Dx about 11 weeks ago and yes it makes you feel like all that and one more. I just got done crying like a baby for the 2nd time today. I don't know if its the drugs or drastic change in my life. I had to stop working like 3 weeks after starting Zytiga, it was just too much.

Let him relax...let him cry...let him rest...it will get better...He will adjust...

I thought there was NO WAY I could exercise, but I forced myself to walk, gently ride a bike and just move, go outside. Breathe...

and

Ice cream makes me feel wonderful at nite!!!

[Blair77 in reply to DeanNelson]

I got him some chocolates today. Maybe that will help 😊

[lincolnj8 in reply to DeanNelson]

Oh yeah, ice cream does help.

[thevvy in reply to lincolnj8]

Dead right . Icecream makes life worthwhile!! and Chocolate ...

[lincolnj8 in reply to thevvy]

From what I read, we're taking about the same meds.. Zytiga, prednisone and Lupron. This has been an 8 month trip for me. Stage 4, spread everywhere. I go online and see my monthly results. (like I know what I'm seeing) All of my results from this regime seem almost or mostly normal. Liver count is high. Don't drink. Found that the liver number is directly related to my bone functions. In June, it was like 480's and should be 150 max. Well, back in February the number was over 3000. Every month it is falling. That's a big relief. I thought I was going to have to give up my one vice in life. Ice Cream. Chocolate Chip please, or vanilla bean. EEEEEHHHHHA. No worries now..

[larry_dammit in reply to DeanNelson]

Amen brother.

[zenbee13 in reply to DeanNelson]

Basically we need to realize that we are Menopausal on this stuff. The crying the hot flashes, and all the other side effects are to be expected.

[jholmq in reply to zenbee13]

One of my female colleagues and friends just looked at me and said "see what we've had to put up with all these years?" Then we laughed our asses off.

[zenbee13 in reply to jholmq]

My Wife and I have been laughing at both of us waking up in the middle of the night to throw off the covers and swing open windows until the flash passes. We are definitely getting a taste of what Women have endured forever.

What do you think about how you now look at life as neither a man nor a woman, speaking per the hormonal drive. It's the one gift I have from this beast, and the drugs to keep it tame.

[jholmq in reply to zenbee13]

I view my hot flashes as showing some solidarity with my wife, as you do. I started with bicalutimide last December, Lupron in January added zytiga and prednisone in February. While I feel relief at the reduction of my drive (sounds like you do too) as it hadn't changed much over the last 30 years, my "functioning" is little changed, at least at this point. Maybe you're the same. I suppose it might change as I stay on it longer. I know that's a side effect for most. Other than that it's pretty much same old, same old. When my late father was asked how he was doing toward the end of his life he wpuld just smile and say "I'm adapting."

[Chiquis]

I'm sorry he's not tolerating Zytiga that well.

My husband has been taking Zytiga and 10 mg prednisone since September 2017.

What he complains the most is about extreme fatigue. We are considering cutting it in half at the one year mark. Something we are praying about since his PSA is >0.1

I should mention he's also taking Lupron and finished 6 rounds of chemotherapy in May.

The best to you both. You are not alone🙏💛

[kenner in reply to Chiquis]

My PSA is 0.29 after 18 years. I feel good, but I get tired quicker than I did even 6 or 7 years ago. I will be 67 in Sept. I watch everyone trying to beat this beast & I despair for all of my brotheren.I have been blessed by the the Lord to have lived this long without intervention. I am not interested in intervention. I feel well & get up every morning saying life is good.I really do miss sex with my wife. Intimacy is so important, but we can't have it all.I really am firm in my decision of no intervention, I refuse to buy into the"HOPE" that all the cancer specialists sell us. If I have offended anyone I am truly sorry.Yours, In life& Happiness, ken Metsala.

[HopingForTheBest1 in reply to kenner]

To what do you attribute your low PSA, since you have had no intervention? What has been your course of treatment?

[CalBear74 in reply to kenner]

Are you a Gleason 6?

[kenner in reply to CalBear74]

I was a Gleason 7 when I had the Radical in 2000. It really was a radical.Seminal vesicles,23 lymph nodes, & a big portion of the prostate bed. I thought I was going to die after the operation.Internal urine leak, a massive hematoma, infections etc. I was given a massive shot of Lupron too. I had morning sickness for 2 months & could not stand the smell of meat. I dropped 30 pounds in the 2 months after the operation.There is so much i could tell you, but we all have our issues. Perhaps that is why I don't think I want any intervention.

[CalBear74 in reply to kenner]

You endured a horrible event! God bless you.

[drsridhar53]

I am very sorry that your husband became a target for the Beast so young. I have a son of that age!! I wish you and him all the best and many long years of life. I had the opposite problem with Abiraterone Acetate (Zytiga in the US). I could as well have been swallowing chalk tablets. May be I was!! It did nothing at all......no control on the rising PSA either after six months. My Onc has now put me on Enzalutamide (Xtandi I believe they call it in the US) . This must be working!!!! to judge by bad side effects,,,,extreme fatigue day and night. I am almost at the point of giving up and ask the Beast to stop all this years long stalking and strike once for all. Of course that won't do for your husband! He has at least another 30 years of life. He will be OK. There are wonderful treatments now, and he is young enough to take the bad side effects on the stride. And Lo! before long some clever Researcher will reach his Eureka moment with with a simple pill or syringe. Keep your spirit up!

[PLASTICMAN in reply to drsridhar53]

I was on Xtandi for 4 months then it stopped working. Also felt very weak and lots of fatigue. Now on chemo with docetaxel, Eligard (every 3 months) and Denosumab. (Xgeva). This last I think has provoked additional tiredness and shortness of breath. I read the side effects of this drug and I think I have all of them!

[drsridhar53 in reply to PLASTICMAN]

I can understand how dreadful you must feel with the fatigue. All the treatments you mention have fatigue as side effect. Would injection of Vit B help I wonder!

[leo2634]

Hi Blair sorry your husband has taken on the beast at his early age but his youth may help him in the battle better then us older brothers. I have been on Zytiga,Prednisone,Eligard injection,and Xgeva for bone Mets since February of this year only side effects are hot flashes which are tolerable, ED Which so far is managed . I take my Zytiga at around 5:30-6:00 AM. With at least 12 oz. Of Spring water and the Prednisone after Breakfast around 8:30-9:00. This medication must be taken on an empty stomach and the Prednisone with food. The water was suggested to me on this forum and it really does help, exercise is a big factor also even If it's a nice walk everyday. Hopefully his body will adjust soon and side effects will subside. Encourage him to join this forum there is a wealth of information and Brotherhood here. All my best and prayers to you and your husband. Leo

[samahieb]

Yes--- lots of water and movement as he is able ---a nice walk (with you) might do wonders! Best of luck--started Zytiga six weeks ago ---whether or not it has been effective remain to be seen next month!

[Triplets3]

I too am on Zytiga with 5mg of prednisone. Only side effects have been hot flashes, constipation and occasional low grade stomach irritation. Other than that I feel fine. I even told my doctor that I seem to have more energy now than before. I do have a "crash" day once a week where I need to go home from work and rest but I do work 5-6 days a week 10-12 hours a day so that prolly has a lot to do with it. Maybe his will start getting better with time! Stay strong!! ....I've been on it for 3 months and it's working. PSA from 13.4 to .3

Scott

[larry_dammit]

Hate 5he side effects of this stuff. Number one is call the doctor and let them know. Number 2 call the help line for the drug. There is no need of him being uncomfortable. In my case when they put me on Xtandi they did not change the pain Med. After 4 horrible days and night. Christmas weekend they figured out that Fentenayl was the culprit. Don’t be afraid of getting him into the ER if needed.

[abmicro]

Per the warnings printed on the Zytiga papers, make sure you do NOT take any herbal supplements, special protein shakes with suppliants, or anything else that may contain special vitamins. A conflict with Zytiga can destroy you liver in 2 weeks. Include some liver tests in your diagnostic blood work for your problem to see if there may be liver issues caused by a drug conflict.

I know this first hand because I got jaundiced. I recovered by stopping all drugs for 2 months, then taking URSODIOL for another 4 weeks to get back to normal. Not a fun experience at all. I stopped my protein shakes and eventually worked back into my drugs slowly until I got back to full doses. No more issues after that.

[Derektwright]

My husband also on Lupron for a year now have added Zytiga and 5mg of prednisone for 3 months now. He too suffers from side effects terrible. Extreme sweats, tiredness, sickness, nausea, he has just felt terrible. The last week the hot flashes has stopped. Dr. Took him off Zytiga this week but will go back on at end of week to see if it’s the Zytiga or the prednisone. Dr states it is unexceptionable for him to be this sick. He has like 10 bad days to 1 good day.

[Mkeman]

I hav been on Zytiga and prednisone for six months and have been fortunate not to have a lot of typical side effects. My MO and physical therapist attribute that in part to the fact I do light exercises and spend two active hours a day outside of the house...including 40 or so minutes walking at a local mall. A referral to a physical therapist might yield a regimen to help him. My MO also said studies have shown that 2.5mg of prednisone twice a day may be as effective as 5mg twice a day. Since reducing the dose my blood sugar has come down markedly. This past week I did learn that I have developed atrial fibrillation since starting the cancer regimen. So you might ask for an EKG somewhere down this rough and rocky road. Best wishes to both of you.

[Cmdrdata]

I’ve been on Zytiga for 4 months and didn’t read the prednisone RX well thus only took ONE pill (instead twice a day) in the morning along with the Z. Still doing that even now. My SEs are hot flashes, muscle weakness and tiredness by about noon. Also increased blood glucose (from average of 100 to 125) and cholesterol (from 160s to 200). According to medscape dot com, the glucose and cholesterol rise are the top 2 side effects.

[Apollo123]

It has been 1 year since I started on ZYtiga and Predict at 47. I experienced the exact same side effects but a year on and it’s much more tolerable. I occasionally get hot flushes and an acute low mood normally lasting two days. It becomes your new normal and your husband will experience a relatively normal life again. The results are excellent with my PSA undectable. If your husband ever needs any more info then tell him to message me as I am a similar age.👍 exercise is key, I do light weights and walk 5 miles everyday. If physically able push yourself.

[DaughterOnAMission]

Anyone experiencing leg pain with Zytiga? My dad has strong pain below the waist in his legs frequently but it does go away after a few hours. Trying to figure if this is a normal zytiga side effect or something else.

[ken3015 in reply to DaughterOnAMission]

Yes I am experiencing leg pain at night .I just started zytiga 3 days ago.I was told this should improve in two weeks.

Stay safe.