Husband getting extremely tired on Zytiga

[Usernameitis]

Tim began Zytiga one month ago. He is also doing Lupron and EBRT which will be over in 5 sessions (he had 5 weeks of them all together). Up until about 5 days ago, he was working and then going to Pilates once a week and to the gym, but now he is coming home EXHAUSTED from work and barely has the energy to exercise. I believe I read where Zytiga makes one feel very tired. Does the tiredness last or does it get better? He is supposed to be on the Zytiga for 2 years - lord - if it does last, he will be a mere shadow of his former self. 😞. Any insight? Also do any of you take any particular supplements to help out and find they are working? Thank you, Mary

[Cackalacky_cyclist]

Zytiga alone is not the cause:

I too am finishing 5 1/2 weeks of radiation (today!), and taking Lupron and Zytiga. I can tell you first hand the fatigue from the radiation builds on top of the fatigue from the Lupron and Zytiga; Some of the past few days I've been winded just getting out of a chair. 3 to 4 weeks after radiation completes that "extra" fatigue should have dissipated and we'll both be back to "normal" fatigue from the Low T.

[Usernameitis in reply to Cackalacky_cyclist]

Thank you so much. That is encouraging. I wish the best for you.

[JohnInTheMiddle]

I've been on Abiraterone also known as Zytiga for 2 years. Also an androgen antagonist ADT, which is different from your Lupron. Had chemo too. I suffer from some fatigue and take methylphenidate also known as Ritalin everyday. I used to exercise a lot and need to get back to it. I experienced huge fatigue after chemo sessions but then it went away.

It's difficult to say whether Zytiga is causing your husband's fatigue. Could be the ADT mixed with the radiation? In summary I have fatigue but I have no idea if it's caused by Zytiga. Probably as the other reply to this thread mentions, the low or zero testosterone.

Also the idea that anyone would be on Abiraterone for only 2 years is strange. If your husband needs to be on an ARPI then my understanding that would be forever, or at least until it stops working because of resistance. I do feel fortunate to be on an ARPI because it is an advanced drug with strong evidence of effectiveness.

[Cackalacky_cyclist in reply to JohnInTheMiddle]

To be clear, if the ADT + ARPI + Radiation is treating BCR after RP (or equivalent) and the patient is non-metastatic, then ADT + ARPI would last 6months - 24 months, depending on which trial you've decided to follow.

[JohnInTheMiddle in reply to Cackalacky_cyclist]

Interesting.

[Usernameitis in reply to Cackalacky_cyclist]

He is metastatic. The petscan and mri show metastatic around ureter and a few lymph nodes. He also has a stint to relieve any pressure on his kidney. The oncologists (primary and radiologist oncologist) believe the ebrt and meds can treat the lymph nodes, etc…Only time will tell…..

[mrscruffy]

I ended my fatigue with working out 6 days a week, just have to power through it until the fatigue subsides. I also workout after radiation treatments. Took a few months but I have been without fatigue or hot flashes for a few years now. Good luck going forward

[Usernameitis]

Good for you!!!!!!!! It is encouraging. Keep up the good work.

[Huzzah1]

It can be very discouraging at the beginning of this journey. I am on Eligard (Lupron) - Zytiga (Abiraterone) and Prednisone for 2 years. Also had 9 weeks (44 sessions) of IMRT. During Radiation, I was waking up early every day to do a fast 4 mile walk, then went to radiation and then to the gym in the afternoon. Then my body caught up with me. Feb, I had a full knee replacement and I'm trying to get caught up on all the workout stuff. I also had my last Lupron injection and will be off Zytiga mid July. During this time, I have always had my eye on the prize - getting off this Stuff! One day at a time - during 9 weeks of radiation - 1 day at a time and before you know it it's over!

[MomOfMaisy in reply to Huzzah1]

I guess I should consider my husband fortunate. He’s been on 1,000 mg Zytiga and prednisone daily and Eligard injection every 3 months. He had 28 IMRT radiation treatments and came out of that fine with the exception of some narrowing of the urine flow. That’s subsiding. It’s only been since December when he was diagnosed and he’s expected to be on hormone therapy for at least 2 years. His radiation oncologist said it would be nice if he could take a little “vacation” from it at some point because it’s not always good for the body aside from keeping the cancer at bay. But his medical oncologist said we’ll see how it goes. So far he’s not overly tired or exhausted at all. He runs on the treadmill sometimes daily and other times not as much. Our daughter works out with him at her gym when she can. She tries to have him work on upper body (which as a former distance runner he abhors.). But he knows that abiraterone can do a number on muscles and bones so he needs to keep up with strength training and cardio.

[Usernameitis in reply to MomOfMaisy]

At first, Tim’s oncologist talked about much higher doses of Zytiga, but then said research has shown that Zytiga, taken with food, can be just as effective at 250 mg daily as the 1,000.

[MomOfMaisy in reply to Usernameitis]

Hmmmm…that’s something we might have to ask his oncologist. If it works just as well, why not! Plus, it’s less expensive. Thank you for sharing that.

[Usernameitis in reply to MomOfMaisy]

cancer.gov/news-events/canc...

[Usernameitis in reply to MomOfMaisy]

His doctor is the medical director of cancer research and specializes in prostate cancer at University of Colorado Health Sciences.

[Usernameitis]

Good for you. Tim’s oncologist said my patients go through all this and they’re going “ugggg 😩 “. Then they finish and begin feeling good again and say” oh yeah awwwww🥳😁”. Needless to say we are waiting for the “ oh yeah awwww🥳” part!

[London441]

More than likely the Lupron not the Zytiga. Exercise is the kryptonite. Cardiovascular is important, but also resistance training. Lifting weights is VERY effective for fatigue. .

[Balylone]

Hi Mary

I have been on Zytiga for 7 years now. The first year was really tough. As you mention tiredness is huge, like the Everest. I kept exercising a few times a week. I slept a lot including naps. I learnt to sleep anywhere including public transport. Then over the years tiredness decreases or the body get used. Strangely my days are easier if I go to the gym in the morning. However a small nap is always welcome.

[vintage42]

The fatigue is mostly from the radiation, of which he has had 4 weeks with 1 to go. I had 4 weeks of external IMRT for prostate. Then two years later I had 6 weeks of external IMRT for pelvic nodes. And have now been on Zytiga (abiraterone) for 4 months.

I did feel tired at the end of those two radiations. I do not feel tired at all from the Zytiga, but do feel a little weaker in strength, as it turns muscle into fat. I think he is feeling the combination of radiation and Zytiga, and should feel better a few weeks after radiation.

[SteveTheJ]

No one knows the answer to your questions. I started similar therapy 4 years ago and experience troubling, interruptive fatigue and brain fog, but it's not debilitating. One option you can consider is Provigil, a medication that can relieve the fatigue symptoms temporarily. Talk to your doctor about that.

[MarkBC]

I've been on ADT for 6 years. Zytiga for almost 2 years. Fatigue is part of my "new normal". You just need to make adjustments to the life you enjoyed before cancer. I lie down when my body tells me to. I have a nap at least once per day. I love to bike so I now have an electric bike so that I can keep up with my partner. Life is still good and I'm looking forward to a few more years.

[anonymoose2]

Sounds like me when I was on Xtandi, with Zytiga for 3 months I can count on one hand the hot flashes. I was wiped out for 3 weeks after radiation and glad that is behind me.

Hopefully I can be on Zytiga for years because I tolerate it very well with good results.

[TJGuy]

A little surprised no mention of pet scan before pelvic bed radiation . Then a bit surprised that whole pelvic wasn't performed at the same time.Fatigue from Radiation is like smoke and mirrors but very real. Should recede by 3 to 4 months. Although I have never felt total the same after PB Whole pelvic, I get a wave of tiredness that comes on quickly most afternoons usually requires a nap or immediately get up and do something physical.

What were/are your wbc and rbc counts, radiation effects the bone marrow and your pelvic region is were a lot of that gets produced. I became below the low normal level for both immediately and it took years to just get a smidgen over those.

Your doubling time is squed due to coming off ADT. But if stayed at 6 months or less creates a bit more concern.

There is something called adaptive ADT which puts you on and off ADT at strategic PSA values, meaning like cutting it in half, this improves your quality of life and I believe is shown to help resist becoming castrate Resistant. That is what you want to AVOID, becoming castrate resistant. Moffitt practices that form of adaptive ADT.

Your PSA has been very low, you have PC that has escaped but might still be controlled or eliminated but various radiation such as SBRT, lu177. AC 225. Etc.

I read you have a stent in your uretar, was this from radiation? This gets changed out every 3 or 4 months? Does this creat any issues for your cycling?

Of course while on ADT your cycling is pretty much done with, unless you get a Ebike of the type of bike you're riding now. If you do that you will be able to continue performing the rides you currently do while off ADT. Give yourself good exercise and keep your cycling life prettymuch the same.

In my opinion your top goal is to prevent castrate resistance, by limiting ADT as much as possible. Your PSA can rise significantly higher than it is now. But take each opportunity presented to kill each metastasis with radiation, cryotherapy, and other forms of

A clinical trial reported in 2022 showed attacking metastasis prolonged life. With the goal of this approach to allow you to live with the condition rather than dieing from it.

[Sagewiz]

Fatigue has been my biggest issue. I have had fatigue on and off for a few years due to low Testosterone, Anemia, Low D and anemia on and off for a few years. Just prior to my PSA test, fatigue was my only symptom. I completed 6 weeks of EBRT and HDT brachytherapy almost 6 months ago, and have had fatigue during the entire process. I also started the Zytiga/Prednisone/Lupron treatments in September as well. I have shown miniscule and erratic improvement, but still have days that are really difficult to function. I just took a trip for a few days and some days I was almost ok, and others I could not walk more than 1/3 of a block then had to sit. Extreme fatigue and shortness of breath occur regularly.

I know exercise is important, but simply have not been able to do more than short stints on a treadmill before losing breath and energy, I have my next quertly oncologist visit next week.

On the last quarterly visit, they cut my Zytiga from 1000mg to 750 mg to see if it would help. I also started taking Vitamin B supplements and the two seem to have helped a mit in that I can do a few more chores strung together before having to sit.

I find the hot flashes somewhat manageable, and are using some homeopathic tinctures that reduce the intensity and frequency somewhat.

The fatigue is my biggest issue, and am hoping now that I am 6 months past radiation, that I can start to make some progress if I can continue to push my activity levels daily.

Thank you for posting this, it gives me hope that I am not the only one experiencing this.

[Usernameitis in reply to Sagewiz]

Tim did have a petscan in January that showed metastatic activity around his ureter (he has a stint to relieve kidney pressure since January) and a few lymph nodes. Also, his oncologist (dr. Elaine Lam of University of Colorado Health Sciences) has placed him on 250 mg of Zytiga along with the 5 mg of prednisone for 2 years. She is the Medical Director of Oncology Research there and cites studies/trials where IF Zytiga is taken WITH FOOD, it is as effective as much higher doses.

[j-o-h-n]

Well Mary it's like the song "Love and Marriage, love and marriage" go together like Pca and Meds.............

If you can, please update you dear tired Husband's bio........ Thank You!!! (BTW Greetings!)

Good Luck, Good Health and Good Humor.

j-o-h-n

[Usernameitis in reply to j-o-h-n]

I haven’t provided his bio. Not sure where to do that.

[j-o-h-n]

Good to top right of screen. Click on profile and just like that you will see bio area. Entire data and remember to save your kiss for me and give it to that Lucky Husband of yours...

Good Luck, Good Health and Good Humor.

j-o-h-n

[dmt1121]

I will disagree with some posts that Zytiga is not the cause. It certainly has had that effect on me over the long-term, even years after any chemo or radiation treatments. I was falling asleep at my desk at work! This, plus a stage 4 diagnosis and an injury to my the perineal nerve in my left leg from a radiation treatment for a lesion got me SS Disability. I would rather be working but Zytiga effects memory, causes fatigue and my leg was a real problem, so I gave in and retired. It is hard to accept but I would rather be productive writing and painting than a liability at work.

I think regular exercise helps with the fatigue and try to have him on mostly vegetarian diet with limited red meat intake.

Just try to find the balance that works for you.

Good luck.