Zytiga side effects

My father has been on Zytiga for about a month. For the last week, he has been constantly sleeping except to eat. His appetite is also down and he eats about 25-50% of his normal intake. Blood test shows some electrolyte imbalance. Has anyone else faced this? Should we consider replacing Zytiga with something else?

My father is 78 and his PSA is 5.8. His PSA has been doubling every 4 months after the hormone shots stopped working

Dear NNATU,

Welcome to this forum, and we're here to support you and your father.

When you post, I know it's helpful to hear from a wide range of respondents ...

There are DEFINITELY several of us here who are on ZYTIGA, just as your father is right now.

It's vital to stay on a timely regimen with the medication --- it's four large, white chalky pills per day --- taken together at the same time of the day.

Some fellows report a bit of nausea, and so what many of us have found is that if you start by drinking quite a bit of water first, and then drinking water IN BETWEEN each of the four pills, it seems to help many of us tolerate the pills much better. Your father would already know that you can't eat any food two hours BEFORE taking the ZYTIGA pills and you can't eat any food one hour AFTER taking the pills.

I do my best to continue drinking WATER throughout the day. Everyone here seems to agree --- WATER seems to be the magic elixir for all of us going through any types of treatments --- chemo, hormone shots, medications, radiation, and so forth.

Along with this, I think it's also important to focus as much as possible on eating healthy foods --- fruits, vegetables, grains, and so forth. Sure --- I have strawberry cheesecake and sweet potato french fries and lemon cake with coconut frosting, from time-to-time --- and I still haven't encountered any type of cookie that I didn't like --- but I DO strive to get those fresh fruits and vegetables into my daily eating plan, as much as possible !

As you know, then you have to take 2 small prednisone steroid pills during the day, as well. These small steroid pills help your body tolerate the ZYTIGA. These have to be taken WITH food, and again --- it's important to stay on a timely regimen each day. It's easy to forget those 2 little steroid pills sometimes --- don't forget ! Your body needs those, as long as you are taking ZYTIGA !

Some routine exercise can be helpful in maintaining energy levels --- and you don't have to achieve the level of an Olympic athlete to feel the benefits, honestly ---- those of us on ZYTIGA are also usually on the ADT hormone shots, as well. This combination of medications CAN impact energy level, alertness, emotions, and can trigger weight gain.

Fellows here have found that just a simple exercise routine can really help to bolster a waning energy level --- so, a daily stroll around the neighborhood, a walk to the park with the dog, a round of golf with the fellows, some time on the exercise bike, a bit of yard work, or a stop by the local exercise gym for a bit each day can go a long ways towards boosting energy levels AND improving one's spirits. Point is ... you get moving a bit and you'll feel better ...

If the weather is inclement, you might want to encourage your father to select an indoor walking location --- such as a local shopping mall, a large department store, a warehouse store, or a local gym --- all of these locations can "save the day" when it's raining or snowing outside. Here in my town, there's a deluxe exercise facility that also offers one-day passes for those rainy days or snowy days. Many local schools will ALSO allow townspeople to walk around their gymnasiums or long hallways after school, if you seek permission to do so. As well, some large churches have gymnasiums where he could walk. In your father's case, it would be great if he could find a walking partner or "exercise buddy" to encourage him to keep some activity going. Best plan ... find a simple form of exercise that your father would ENJOY most of all.

From your post, it sounds like your father might need to check in closely with his primary doctor --- it sounds like your father's eating and sleeping habits have changed a great deal and this is a concern. They will want to check blood work at the lab, to assess for any deficiencies in his lab levels, blood counts, and vitamin deficiency levels. Don't hesitate to get this checked out SOON ! Why wait ??? Just some friendly advice from a fellow comrade here, who is also taking ZYTIGA ...

With his diminished energy level and changed eating habits, this could also be a sign of depression. If that's the case, then this needs to be addressed in an honest manner with your father's doctor. It would be wise to have a family member accompany him on his next doctor visit --- lay your cards on the table, be honest, describe his symptoms, and ask his doctor for some help. Your father might need an advocate in this, and it's always wise for a family member or trusted friend to go along for moral support --- and to help in giving the doctor an honest perspective of his symptoms from another point-of-view.

It's important to state --- whenever ZYTIGA is prescribed, the doctor HAS to monitor lab levels quite often --- checking to make sure that liver functions remain stable --- as determined by frequent blood draws at the lab. In my case, for example, I go in for lab work every four weeks, just like clockwork --- and then consult with my primary oncologist each month to make sure that all my lab levels are staying stable on ZYTIGA. Your father will likely be closely monitored by his doctor while he is on ZYTIGA --- make sure that this is the case.

Your care and concern for your father is quite evident --- I'm thankful that you are looking out for him and his welfare. Continue to stay in touch with us here --- I started on ZYTIGA last year and it has been helping me these past few months, for which I'm very thankful. I hope your father gets to feeling better soon --- I honestly think a doctor can help him assess his symptoms and get some help going for him soon.

Let us know how your father is faring ... stay in touch with us here .... we're a band of brothers AND sisters --- all united together in the interest of supporting each other, sharing our collective experiences, lending a bit of advice, and walking together on this road ...

Sent with my best to you and your father,
"Cyclone Fan" ~ Iowa State University

If his electrolytes are out of balance and his appetite is down, he may need a higher dose of prednisone. Low cortisol can cause those symptoms and may lower blood sugar, which would make him sleepy. Maybe ask his doctor to check his cortisol and ACTH levels.

Hello NNATU,

Along with my original response, and considering your father's gentle nature, my best advice is that a trusted relative, friend, or neighbor ACCOMPANY your father to his next doctor's appointment.

In this case, it sounds like he needs an ADVOCATE to describe the side effects he is currently experiencing to his doctor --- doctors are there to listen, and to help patients navigate through any side effects we may be experiencing --- or to make changes in the current prescription, if needed.

Here's an easy plan ... simple advice ... make a written "laundry list" of his side effects and symptoms in written form and take the list to the next appointment --- this way, you have time to think of all the side effects and symptoms he is experiencing right now --- having the written list will provide the doctor with key details about what your father is experiencing.

Appointments can go quickly ... and sometimes you get home and realize you've forgotten to share a key detail. I honestly think it would be wise to have someone who will accompany your father and help "speak up" for him --- an advocate, so to speak !

With the ZYTIGA plus the steroid pills that must be taken with the ZYTIGA prescription, the combination can impact energy level and blood sugar levels. As I said before in my earlier response, doctors are required to frequently monitor their patients who start ZYTIGA, because there can be side effects. They also should be closely monitoring him to determine whether ZYTIGA is having a positive impact on his case.

In my case, for example, my primary oncologist had me return in 20 days after starting ZYTIGA to see how I was feeling --- and to see if it was having a positive impact on my PSA levels. Experiences with ZYTIGA can vary from patient to patient, and that's why doctors watch their patients closely once they start taking ZYTIGA. That's why my doctor sees me every 28 days, without fail, year 'round ... just like clockwork.

I honestly feel that your father's side effects could be greatly minimized with an honest heart-to-heart talk with his doctor --- the dramatic change in his eating habits and energy level are impacting his daily living and the doctor needs to know about these changes so that your father can be helped. It takes time, but it's important to form a strong and loyal bond with your doctor, letting them know whenever there are concerns.

If your father is on ZYTIGA, I bet he has a regular consultation coming up soon ... get a "laundry list" of side effects and symptoms written down ... and make certain that a trusted friend or relative goes along with him to his next consultation as an advocate ... and just for moral support.

As well, since ZYTIGA has to be shipped directly to the patient from large pharmaceutical companies, they offer toll free advice from a PHARMACIST through the pharmaceutical companies that distribute ZYTIGA. Side effects from ZYTIGA can also be discussed with them on a daily basis, while waiting for your next doctor appointment. It's a constant resource available to each ZYTIGA patient, available through the medication distributor.

You asked if you should walk away from ZYTIGA --- I think that it's important to assess its impact on your father's PSA and health effects first, before walking away from a medication that has the potential to help your father a great deal --- meanwhile, address those side effects --- which could be attributed to other things that have been mentioned as possible causes.

My thoughts, my reflections, written in care and concern for your father's situation ... from my perspective as a fellow "Battle Brother" here who is also taking ZYTIGA at the current time ...

Sent with my best,
"Cyclone Fan" ~ Iowa State University

Dear NNATU,

That is a noticeable and important drop in your father's PSA score --- and within a short period of time.

An early initial improvement in PSA can often be indicative of further improvement in PSA scores.

I think you and your father should read this as an encouraging sign to stay on track with ZYTIGA --- while continuing to monitor the other side effects that you were concerned about --- such as diminished energy level and diminished eating habits.

Stay in touch with us here --- let us know how your father continues to fare --- I honestly hope that ZYTIGA will continue to help him EVEN MORE ! I'm very encouraged to hear about his initial drop in PSA already !

Sent with my best,
"Cyclone Fan" ~ Iowa State University

He has Essential Tremor.

Slightly off the PC topic, but my 85 year old mother was admitted to the hospital last year with a ruptured colon and sepsis. While there she was taken off the propanolol she'd been on for her tremor and prescribed primidone. It has been amazing. She has no tremor at all any more and says she wishes she'd had it 50 years ago. I'm not sure how it affects prostate cancer, but every time I hear of someone with a tremor I want to tell them how well it has worked. Good luck to you and your father.

ISU-Cyclone
Thanks for your post, I took my first dose's of Zytiga-Prednisone last night. It's very encouraging to hear of your positive result.

It's been a long time since my last post here. I need to update my signature...but for now I'm almost 11 years in, since diagnosis with a PSA of 50, at the age of 50.

Hello Andrew,

I'm glad this thread helped you and your father.

For another thread that many members have put together recently about ZYTIGA, please find the search box at the top of your screen and type in this thread title, as follows:

ZYTIGA: OUR COLLECTIVE EXPERIENCES

Type that into the search box and that thread will appear, with lots of other information and experiences from members here who have taken ZYTIGA. I think you will find that thread helpful, insightful, and informative, just like this thread.

I just ordered my 27th monthly bottle of ZYTIGA. It has continued to help me, day by day, over the past 27 months.

Sharing first-hand experiences on this website continues to help all of us!

With all my best,
CYCLONE ~ Iowa State University