My partner just started zytiga and the literature on the side effects is very scary. Would like to know how severe are the SE and what to expect? And if there anything he can do to minimize them. Especially the liver toxity?
Zytiga side effects: My partner just... - Advanced Prostate...
Zytiga side effects
Written by
SherryKahn
To view profiles and participate in discussions please or .
Read more about...
50 Replies
•
I experienced the same SE’s as Lupron. Fatigue, hot flashes, weight gain. My liver numbers went wonky when I initially started Zytiga. No symptoms, just elevated blood test numbers. My MO took me off of it for about a month and started me again at a lower dosage. The dosage was then slowly increased up to the normal dosage and I’ve been fine since then. The literature can be pretty scary, listing all kinds of potential SE’s but most people, not all but most, just have the ‘normal’ SE’s, which can be very annoying but not terrible.
Thank you!
I experienced liver function test abnormalities, they cut me to 5 mg of prednisone it cleared up. I talked my MO into going with 250mg dose with a light breakfast, low fat and it has now been 4 months. My PSA is still steady at .01 .
I'm over 2 years in with the standard Abiraterone/Zytiga + prednisone corticosteroid add-back. My short answer is I don't have any side effects. Liver numbers are monitored and are fine so far.
I have to work on my blood pressure and that responds to exercise. And from my ADT I also don't have any hot flashes (this maybe related to the big question of GnRH agonists versus antagonists.) I do have the ongoing fatigue associated with zero-ish testosterone and zero-ish estrogen.
Yeah there's the big long list of potential but mostly uncommon scary side effects from Abiraterone. And there's also a question is to how one would distinguish between a side effect from ADT and from Abiraterone. (I just realized now, about a half day later from my original post, that this was the reason why my drugs were staggered by several weeks in terms of introduction to my regime - explicitly in order to identify separate responses to the meds.)
I'm tempted to suggest from Dr. Alfred E. Newman, "don't worry, be happy". After all, the clinical evidence is great.
Of course there are no guarantees, and apparently there are people who have bad reactions to this drug. I appreciate that I've been lucky so far.
A big success for your husband!
John, didn’t Alfred say “What Me Worry?” 😁
100% Hobi 😂
Bobby McFerrin sang /said “ Don’t worry , be happy” . I remember because Bobby got mad because Bush 1 used it in his campaign.
Along with a "thousand points of light" . . . 🙄
New Add To Abiraterone Side-Effects Note Above: "I do have the ongoing fatigue associated with zero-ish testosterone and zero-ish estrogen."
Thank you!
I just added a new line to my post above-about testing for side effects by staggering the introduction of my meds.
There is a herb that helps to support liver function, Tuduca. Dont know if it interacts with these drugs, but many people on alternative treatments as well as Standard of Care treatments take it to help support thr liver.
You would of course want to run it by your Dr's and do your own research on it.
I've been reading in a FB group I am in, called Beating Cancer Today, that you shouldn't take tuduca if you have cancer.
I have been on Zytiga for 6 years, along with Lupron and prednisone. I have found it to be okay and very little side effects, Lupron was the worst for that and I switched to 3 monthly doses, that helped. I have been taking 500 mg of Zytiga for about 5 of those 6 years.
The list of side effects is scary, so don't read too much into them, just be aware of them.
I hope that Zytiga works as well for your partner as it has for me.
All the best.
I had no side effects at all from it. Elevated blood pressure is the most common side effect by far. Often Zytiga gets the blame for side effects that are from the ADT that usually accompanies it, especially fatigue.
I would careful with it if blood pressure was pre existing high, or I had other co morbidities. Or simply if my strength and fitness were not a priority.
My BP went way up, from 130/85 over the three years of Zytiga, to 119/68 on BP meds... The catch is, I am dizzy at times when standing, but it seems to get less and less the more miles I walk and bike
I got off Zytiga and Prednisone a couple months ago, after two long years. Primary side effects were the hot flashes and tummy weight. About 18 months in to it, I started feeling weak and blasé.
Prednisone is the bigger concern. It is a steroid and after using it for 24 months, I had a bone density scan and was diagnosed with Osteoporosis, a common SE that was not brought to my attention. I am now on medication for it and hope my bone density will improve. Seems there is a price to pay for cancer drugs, but they keep us vertical.
Dang! I was going to comment that because estrogen is made from testosterone, that testosterone suppression results in estrogen suppression. And that this explains osteoporosis (for example as with women after menopause).
But then because of your note, I read up about prednisone and steroids and osteoporosis risk. I have to say I was shocked - because in all my reading and visits with doctors that I never knew this before. (I take the usual 5 mg per day which is indicated along with an ARPI such as Abiraterone.) I'm really ticked off. And not a little fearful. I have another dexa bone density scan later this fall.
Argghh!!😳😠
I do appreciate not being in the dark anymore Cancer4054!
What are the alternatives? There are second generation drugs that effectively do what zytiga does but the dr didn’t prescribe these for my husband. And these don’t need steroids for it.
You are correct. And your doctor has made a strategic decision for Abiraterone. Coincidentally the same one my doctor did.
A nelw generation of hormone therapies (as opposed to other therapies such as radiation and surgery), based on powerful clinical trials, and notably not yet standard of care in many jurisdictions worldwide, provides two main strategy options.
In no particular order, let's first look at Abiraterone (Zytiga). Abiraterone is an ARPI, or as you may know an androgen receptor pathway inhibitor. That means the class of drugs, of which I believe Abiraterone is about the only one in use, stops the synthesis of testosterone from cholesterol, wherever that synthesis might take place. (ADT stops the production of testosterone in certain organs "from the top", i.e. the pituitary gland at the base of the brain, as an GnRH agonist or antagonist.)
ADT + ARPI are complementary because ADT doesn't stop all the production of testosterone on its own.
As a sidebar, to your point, this ARPI strategy requires a steroid, usually prednisone, to restart corticosteroid production which is a byproduct of the testosterone suppression. Without which we will die.
The other new generation hormone therapy strategy is an androgen receptor antagonist (an AR antagonist), also complementary to ADT. This strategy is what you get with all the "lutamides". This class of drug works "at the bottom" of the testosterone chain - and jams up the (millions of?) androgen receptors on the surface of prostate cancer cells.
Both of these two hormone strategies (the two strategies together are collectively known as ARSIs, androgen receptor signaling inhibitors) apparently have excellent results - to the point that we're still learning about how long they work for! (Caveat added later: progression and resistance is still inevitable, sadly.)
The first strategy is focused on the production of any testosterone. The second strategy is focused on making it impossible for prostate cancer cells to "hear" the testosterone message.
Both strategies start with ADT and each strategy can be characterized as a kind of doublet therapy. Add chemo and you have triplet therapy.
It's worth noting the point that is made on this forum from time to time - once prostate cancer has metastasized, then it is a system wide problem. And there may be millions or hundreds of millions of prostate cancer cells floating around the body. And forming little metastases here and there. And you can't get them with radiation or surgery.
At this point drugs, especially hormone drugs, and sometimes including chemo, is the order of the day. That's the only way to get to all these nasty undesirable interactions between testosterone and prostate cancer cells and metastases.
Also, this note is a reply to an excellent comment in the thread, specifically that the second strategy, the AR antagonist strategy, apparently does not require a steroid, such as prednisone.
I suppose for a lot of readers this summary is well known. And there are better summaries for newbies. Nevertheless if I think out loud sometimes I learn amazing things from replies!
My husband has been on Zytiga (abiraterone) 1,000 mg daily and prednisone for 9 months now and has had VERY little side effects. He sometimes feels a bit more tired, but not much! If he exercises regularly that helps! And he has his liver panel done regularly. He also has an Eligard injection every 3 months. The only thing he’s felt with that is the expected loss of libido.
So far, so good. His oncologst wants him to take Zometa to help prevent future bone loss, but his baseline DEXA bone scan was normal. Plus, he’s in the process of having a dental implant and those bone strengthening drugs can’t be taken when there are dental issues. He’s kind of scared to take it since it has been known to cause ONJ —jaw deformities. He’ll have another bone scan at some point to see if he’s still within the normal range. Best wishes to your husband! It helps to have a positive attitude. My guy is laidback and said he doesn’t even feel like he has cancer. He was diagnosed in November ‘23 with Stage 4, advanced, metastatic Gleason 9 cancer. We’re taking it one day at a time.
Dear MomOfMaisy: you could have written my exact story line...thanks, I don't feel so all alone now 😉
Max24, it’s nice to know others are living the same story. We go to a local monthly prostate cancer support group (many wives/significant others attend). It’s very helpful being among like-minded folks sharing similar issues.
Hello, your husband could try Glucosamine, pure, I've been using it for years, with some success. I have celiac condition, osteoporosis, osteoarthritis are a side effect of that, then coupled with this 😳. It's not instant, but it has helped me reverse the bone density loss.
All the best 👍
Lettuce231, so far, at least with his DEXA bone density scan several months ago, he’s within the normal range. He doesn’t even have osteoarthritis like I do! Heck I have osteopenia, but he’s fine. Now then, going forward, if his next DEXA scan shows some change, I’ll let him know about the glucosamine. Thank you.
Hi, it takes a long time to build up in the system. There is no problem in using it to maintain the density now.
You're welcome 😊
My husband never had any issues. Was on with Lupron. For about 2 years. As far as liver, abstain or limit alcohol use.
seems everyone here has had positive experiences with Zytiga , which is great, Unfortunately, I did not as it caused huge spikes in blood pressure. My the BP started rising after about a week and got higher every day. Had to stop and switch to Xtandi. Monitor that would be my advice.
Almost 82. Started Orgovyx ADT 9 months ago and added Abiraterone 7 months ago. No side effects.
Been on Zytiga Prednisone and Eligard since 2018 PSA 0.1 since start the side effects are many and I would say vary from hot flashes to loss of muscle mass and many others but in my case they are tolerable and keeping me alive. If you trust in your doctor then follow his or her recommendations. Never give up never surrender Leo
Again a lot of us would say that the hot flashes are only because of the ADT.
I’ve been on a combination of Zytiga and Lupron for several years. I really have not experienced any side effects. However, my PSA has been stable while on Zytiga.
Good luck. I hope your partner’s experience is as good as mine.
No one can tell you what the side effects will be. Or would you rather have the "side effects" from cancer? Don't believe the fear others will try to impart to you. Go ahead with the recommended therapy and count on being able to switch to other medications if the side effects are truly onerous.
I've been taking Lupron and Erleada for 4+ years and while I'd rather not, it's better than the alternative. I'm grateful to have effective medications that have controlled the cancer for that long.
My LFTs went up for a month, stayed for a month, then went down. Nothing high enough to reduce or stop it. That was nearly 3 years ago.
Mild hot flashes once in a while and a bit of fatigue here and there. Otherwise no major side effects. Need to exercise and stay active to your ability, get good sleep and adjust your diet. Your doctor will require regular blood tests to check on issues. Communication is key as there are some other medications that can help with SEs if they are severe. We're all a bit different and react differently. Keep the doctors posted on any issues that may arise.
It was hard for me to tell between Lupron and Zytiga because I was on both at the same time. Typical low testosterone symptoms and my testosterone never recovered properly because of the radiation. Just a guess.
I did have the elevated liver numbers 6 months in and stopped zytiga for about 7 weeks. Restarted at 1/2 dose and went up to 3/4 dose. All 4.5 years PSA at <0.01. Been off all meds since June 2022 and still undetectable. I know I am lucky or blessed or whatever. Hope your guy gets some of that.
Jim
Wow, even though this is a self-selected group which doesn't include people who had really bad reactions and had to stop are this probably not posting, nevertheless the positive experiences shared by everybody here concerning Abiraterone are very encouraging. Over 2 years in, and so far so good!
Approaching the 2 year anniversary of my beloved Abi/Lupron/Prednisone treatment (g9 w/local spread), with mostly fatigue and hot flashes throughout. Oddly symptoms were much worse the first couple months until I started taking multi vitamins. PSA became undetectable a month or so into treatment.. so as annoying as the side effects have been, I'm very grateful with the results.
Undestand totally. I actually was not going to initially do any treatment and just trust God and fight it naturally after reading about side effects. A little old man in an elevator on my first visit to my oncologist changed my mind.
Been on Lupron and Zytiga now going on 7 years and side effects are minimal and living life. God works in mysterious ways. Have a protocol of some natural meds that really help if you’re interested. 😊🙏
I was a Gleason 9, Group 5 out of surgery. I had a recurrence 6 months later so got radiation and ADT (LUPRON (Eligard) w/ Zytiga & Prednison). I have been on them for 18 months. I started Zytiga at 1000mg. A few months later needed to drop it to 750mg due to liver numbers going wonky. Been on it since with no more liver issues. Primarily have extreme fatigue, hot flashes, muscle loss, memory issues, and finally bone loss which the gave me another drug (Fosamax) to take once a week. Fosamax is a nasty drug, for me. Additionally, the ADT may also cause depression and anxiety, both were very new to me. I never knew the importance of Testosterone to the body until you don't have it. Everyone is different with this disease. I wish everyone the best. God Bless and let's beat the awful disease. Thank you SherryKahn for posting this and for being a caregiver. Caregivers are so important.
I have been on ADT (Lupron) for more than 12 years, except for 3 “vacations” during my first 5 yrs and have been on Zytiga for almost as long. I don’t think Zytiga added to the side effects I was already having from the Lupron. I wish I could stay on both for another 12 yrs but it seems as though my PSA has started to rise over the last year or so and I will likely have to add something to the Lupron and Zytiga or switch to another treatment. Good luck.
I did 2 years on abiraterone and ADT and have now been off for 9 months. The liver will be monitored so I would not worry. Elevated liver tests is regularly common early but tends to go away even if you keep the dose the same but many of us modify the dose. Hypertension is very common but controllable. Most of the other side effects are related to the loss of testosterone and would occur with ADT alone. Testosterone is important for maintaining mitochondrial health in the muscle so insulin sensitivity drops and glucose can go up. Physical endurance suffers. The risk of heart attack goes up. I was sent to a cardiologist to make sure I was doing everything possible to prevent heart attacks. I lifted weights to maintain muscle strength. No matter how hard I worked I did not get stronger. Interest in sex disappeared in my case.
Wow, your question is exactly what I've been worried about for several days after meeting with my MO. The replies have greatly eased my concerns so thanks for sparking this thread. My MO touched on so many side effects that I've wanted to reject the Abi (Abiraterone). I've been on Orgovyx for 7 mos. now. As has been noted, high BP is the biggest SE to manage. I finally got a BP Rx last month and now I barely notice SEs from ADT. Even my hot flashes are reduced. Just received my lastest PSA test and I'm at 0.41, down from 0.82 one month ago. What a relief. Now, just 3 more days of RT to get through. Abi+Pred to start in mid Oct, after our R&R in Sedona. Yay! MO wants me on this regimen (ADT+ARPI) for 2 years post RT.
I have been on this drug for years with no noticeable side effects.
been on it for two years with zero side effects. Liver good, scans good, etc. just tell him to exercise daily if possible, including resistance work (weights), critical to not lose muscle mass via zero testosterone
I’ve been on Abi and prednisone for more than 10 months now and SE’s have been quite mild…..same for my ABT…..when I was initially dx’d and treated I forwent ADT and other meds because of the potential side effects….as a result I lowered my chances for a cure first time out……don’t worry so much about potential side effects……most are rather uncommon and those that do occur often have workarounds……give yourselves the opportunity to hit this hard first time out…..
I have been on Zytiga (750 mg) and Prednisone (5mg) for 10 months. I was experiencing severe fatigue for quite a while, but my wife insisted on the instructions (Zytiga - no eating 2 hours before & 2 hours after taking) (Prednisone - take with food) and my fatigue is down 90%. I also find walking everydary has minimized the fatigue.
I have Gilbert's disease (a liver issue) but since zytiga/prednisone, my labs have not changed (somewhat elevated).
GOOD LUCK!
Not what you're looking for?
You may also like...
Zytiga side effects
Has anyone been so sick on the Zytiga that your Dr tells you to go off a week? My husband has been...
Zytiga side effects
Dx Jan 2016, PSA 20, Gleason 4+5 , 2 bone mets. Most recent scans 1 Bone met and no visible mets to...
Zytiga side effects
Hi All,
I started Zytiga one week ago. The biggest problem I am having is sleeplessness. Even with...
Zytiga Side Effects Inquiry
I'll try to keep this post short and simple:
I'm trying to decide whether to push for/encourage...
Side effects of zytiga
Does zytiga or prednisone tend to cause back pain or metallic taste? And if so does anyone know...
Side effects of Zytiga?
Zytiga/ Prednisone side effects 
Stopping Zytiga d/t side effects
Side effects of Zytiga and prednisolone
Effects of zytiga
