Enzalutamide and fatigue

[Napper01]

I've been on a 160 mg dose for three months now and while my PSA dropped dramatically, the fatigue is just crippling. I'm 59 with a senior management job, honestly not sure how I can keep going and I certainly can't afford to retire much as I'd like to! I find myself taking 1-2 sick days regularly just to sleep and try to recover, my job involves a great deal of travel and I'm really struggling. Keen to hear from anyone and learn of ways to combat the fatigue (it's the only side effect I have).

[Hidden]

I can't speak from experience, but I know there have been people that had to switch from Enzalutamide to Abiraterone acetate because of the fatigue.

Some people have it much worse than others. Hope you find a solution, maybe others here can recommend something to help.

[RonL]

I've never been on enzalutamide but I am on Zytiga which more or less serves the same purpose and while fatigue has been an issue for me since I've been on Lupron it didn't get worse when I started taking Zytiga. Best of luck.

[afab]

Napper01, I was long retired before being diagnosed with metastatic PC.; I'm on Lupron and Xtandi. My energy lasts for one half day before needing a one hour nap.

When I was your age, I had a senior management position. I would not have been able to handle the cancer drugs and be effective in my job. You may want to think abot retiring or moving into a part time consulting position.

Time with family is more important than career at this point. I know that it's easier said than done. You have some tough choices.

[Napper01]

Gentlemen, appreciate all comments, what great support. I would also like to ask the wider community whether anyone has elected for 'surgical castration' as an available option to reduce hormone generation without the total need to do so from drugs (I am also on a drug called 'Lucrin' for this and this is injected every 12 weeks.

[RonL in reply to Napper01]

This solution will replace the need for Lucrin but you will still need to take enzalutamide or a similar drug.

[drsridhar53 in reply to Napper01]

I was diagnosed almost exactly 7 years back with Gleason 4+3, PSA 12,6 and a symptom consisting of s few drops of blood just before peeing every time. I live in India,where bilateral Orchiedectomy is the standard procedure for PCa. My Urologist said it

works so well that "if you are lucky your cancer will be subdued for 16 years, if not so lucky maybe 10 to 12, and if frankly unlucky for 8". The blood returned two years after surgery, still with very low PSA (never went above 0,3) and he said "By Jove! You do have an extremely aggressive cancer. I suggest you go to an Oncologist". Since then I have had various ADTs, 40 EBRT and other tricks. Abiraterone did not even start to work. now on Enzalutamide. PSA fluctuating from 4 to 12 all the time. Thankfully the bleeding stopped two years back, after five years of that psychogical torture, with the first exposure to EBRT. I don't suggest surgical castration at all.....it robs you of much of value in life. Interest in sex is a big zero, even if I on a pretence that it is not so. I think Lupron and other ADTs may work just as well without a final full stop to that aspect of life. As with exhaustion with Enzalutamide, I am glad I am at 78 no longer active in my profession. On some days I need 16 hours of sleep and naps. Sometimes I wonder if it is worthwhile, taking into account the crippling cost as well. PCa is a killer, it kills you when you are alive, and kills you for good when you die. Sorry to be so negative.

[Napper01]

And another question - my Oncologist did suggest I could lower the dose of Enzalutamide from 4 x capsules daily (160 mg) to 3 x capsules daily (120 mg). I'm nervous about this prospect for obvious reasons - has anyone gone down this path and if so, did it work for you..?

[Hidden in reply to Napper01]

Have you considered trying Abiraterone acetate instead of Enzalutamide? It might help you get through until you can hopefully stop working or find a way to work part time. I'd like to retire, but still have to work part time. But I work for myself so I have some flexibility.

For primary ADT, a lot of people have chosen surgery over getting shots. There are some definite advantages. You do it once and its done. No more going in for shots. It also maintains your T levels lower and more consistently. Typical T levels are 15 after surgery. A lot of people who take shots including me are not getting that level of T consistently. Lupron, for example, only guarantees T levels at 50 or less. I am considering doing it myself at some point.

[Robertleeb in reply to Hidden]

I was going to do the surgery but a friend of mine had the surgery and the cancer came back so he had the radiation treatments, I think radiation is the first and best and surgery last because once it gone there side effects like uncontrolled urination have to wear depends all the time. sex is gone for good, and most radiation treatments sex drive can return no guarantees but I have heard more positive results with radiation treatments plus hormone therapy from friends that are dealing with Pcancer. I met a man at the urologist office , he was there to get the hormone shot, he is 79 and found out when he was 71 he had Pcancer, he had his prostate removed and it came back too, he said he had been doing the hormone therapy for over 5 years and it seems to be working for him , not sure if he was also doing casodex too probably something along with the shot.

[Hidden in reply to Robertleeb]

The surgery I was referring to is orchidectomy which is a substitute for Lupron or other shots that tell your testes not to produce testosterone. It doesn't have different side effects than Lupron shots.

The surgery you are talking about is prostatectomy, where the prostate gland is removed. I'm at stage 4 so that wouldn't make sense for me.

[Carol2 in reply to Napper01]

Napper, My husband has had an orchidectomy as well as being on Enzalutamide. Fatigue has been a huge problem for him. Has been on this medication for 2 years, but 6 months ago elected to go down to 3 capsules as well as taking at night. This initially made a huge difference for him, but then I found that he was forgetting his pills so changed back to mornings. His PSA has been around the 18 to 21 mark over that time, which for him is control. He was diagnosed in 2004.

Thinking of you, Carol

[Napper01 in reply to Carol2]

Thank you Carol, that's very helpful. I set myself an alarm for 8:00 PM at night and I have yet to miss a dose. From comments within this blog I have started on a reduction of 3 tabs daily, hoping that makes a difference. Good luck to you guys!

[JamesAtlanta]

Sorry to hear of your fatigue challenges. I fully understand them and suspect we all are dealing with them to some degree.

I'm in a senior management position, too. I have metastatic prostate cancer diagnosed at age 53 (I'm 56 now) diagnosed 2 1/2 years ago, Gleason 4+4=8, original PSA was 227, bone met in my spine at T8 vertebra. Been on Lupron since diagnosis, 6 rounds of chemo, plus radiation to my spine area.

I've been working full time since my diagnosis. This week I've been in 5 major US cities. As Charles suggests, though, the travel is getting too hard. And I'm to the point where I am tired of the stress. So I am planning to retire in February. I will have achieved a milestone at work that is important to me - my 30 year anniversary- at a job I love. But I know it is time for me to focus on myself and my family. A decision like this is hard...but it is the right thing for me.

Candidly the fatigue makes it tough to push through every day. And I'm finding that I'm even having an occasional memory lapse. My wife and I went through all of this together. The debate of whether or not to retire. Would we have enough money to live on. When we focused on all of it we reached the right conclusion. It's just about priorities. We even asked my oncologist and he said most of his patients with stage 4 PCa stop working.

Good luck with your decision. I hope you find relief for your fatigue. And, whatever you do, we all wish you much happiness. I hope someone in this forum has some great ideas on how to help combat the fatigue. (I find that exercise is a great help.)

[gottodealwithit]

Dr Moyad recommends American Ginseng to combat fatigue. This is based on solid research, check it out using google. It may take a couple of months to have full benefit. Also caffeine can help and exercise is a must do.

[pjoshea13]

There is an Australian trial (in progress):

"Effect of Enzalutamide Dose Reduction on Fatigue, Cognition, and Drug Trough Levels in Patients With Prostate Cancer (EFFECT)" [1].

No results yet, but your doctor isn't the only one thinking about dose reduction.

Xtandi targets the enzyme that converts pregnenolone to DHEA & progesterone to androstenedione (see steroidogenesis chart [2].) You could monitor levels before/after a dose reduction. Maybe the difference will not be substantial?

"Patients with metastatic castration-resistant prostate cancer (mCRPC) who were treated with Xtandi (enzalutamide) were more likely to experience central nervous system (CNS) events or fatigue than patients treated with the combination of Zytiga (abiraterone acetate) and prednisone." [3]

Is switching to Zytiga an option?

-Patrick

[1] clinicaltrials.gov/ct2/show...

[2] en.wikipedia.org/wiki/Stero...

[3] curetoday.com/articles/in-p...

[Hidden]

Are you sleeping OK? I recall having problems sleeping when I was on eligard, an ADT treatment. I took some lorazepam as a sleeping aid when I needed it. I might also suggest adding to Nal's list of supplements: CoQ10 and vit B12; they might help.

[TRinVirginiaBeach]

Napper01

I added Xtandi to my Firmagon regimen in February(2017) and have the same issues with fatigue. You are not alone. I'm 61 and work from home (list broker). I don't have the rigorous travel schedule as you.

Here's how I handle it.

I take all 4 of the daily Xtandi pills at approximately 9:30 PM

I try go get 8 hours of sleep at a minimum. 9 or more if possible.

8-10 AM: I take one Zyrtec-D. I stumbled on this by accident. Back in March-April, I was struggling with seasonal allergies. Usually, I take Benadryl but we had none in the house. I told my wife I was going to the drugstore that day and she said we there were some Zyrtec-D in the pharma cabinet. She had tried the Zyrtec-D (day version) and said it made her jitter, so, she had discontinued them. I gave it a try and found that not only did I get relief from the allergies, but, it had a similar effect on me. I found that I had good energy through 2-3 pm.

2-3 PM: I begin feeling sluggish. Afternoons are the toughest for me. Here's what I've found that helps.

(a) give in and take a nap (preferred because it does not involve ingesting additional products)

(b) Grande Starbucks Cold Brew Coffee (black): It's stronger than the iced coffees/hot coffees and can be sipped. You should be able to find a Starbucks at any airport.

(c) 5-hour energy drink: this is the one that comes in the small bottle. Don't drink it all at once and don't drink it straight. I've found that to dilute 1/4 to 1/2 a bottle of the 5-hour Energy Drink into a bottle of water and sip on in it as needed helps cover the fatigue for 2-4 hours. This gets me through 6-7 PM. Be careful with taking it later than this. It can impact your sleep.

There are any number of other products which give similar results, tea, ginseng, etc. You may find they help.

For What It's Worth/In My Opinion: These strategies only mask the fatigue that is inherent with Xtandi. I find that I am still tired, but, they give me the edge to push through the fatigue to accomplish the activities that I need to complete.

I wish you the best. Feel free to reach out if you need to discuss more.

Oh, I almost forgot, with Xtandi, my PSA dropped to <.01 within 2 months (4/2017) and is still <.01 as of yesterday.

Tony

5/2011 Proton Therapy (3 Gleason 7 cores and possible ECE)

10/2015 Salvage Cryoablation (it got the lesions within the prostate but I have a lesion outside the prostate which abuts the rectum-Gleason 9- and suspicious pelvic lymph nodes)

6/2016 Began Firmagon

2/2017 Added Xtandi

8/2017 Completed Provenge Immunotherapy

[BrianF505]

I'm 59 and have been at battle with the devil for about 15 years. Totally sucks as we all know.

Currently I'm 3 1/2 years on Xtandi. After about 9 or 10 months I dropped dosage from 4 to 3 (with doc approval) and began taking it at night. Drop in dosage did not affect efficacy. Combining the dose drop and taking at night vs AM helped a bit. Not much, but a bit.

I was working as a database and application developer for a large Mutual Fund Co. Even with the change, I couldn't function at the level I needed to continue employment. I tried. I really tried hard to hang in there. But after 11 months on Xtandi I went on disability. By far, the best thing I could've done.

The company has an excellent disability benefit and I'm happy I decided to utilize it. I hope this is an option for you and you take time to consider this!

Fast forward 2 1/2 years after going on disability. Xtandi still working well, fatigue is still bad. But not working has allowed me to function oh so much better. Most importantly, I'm enjoying my life at a greater level.

Don't get me wrong, I'd rather have my energy back and be working. My job at the mutual fund co was the best job I've ever had. I enjoyed my work tremendously, had outstanding co-workers and the pay/benefits were awesome. Plus, there was the daily running or bike riding and yearly elk and deer hunts, etc., which I loved to do that are now sharply curtailed to none existent.

Now, I get 10 hours a night rest plus 1-2 hour day rest. I've learned what I can do that doesn't wipe me out for the rest of the day or for several days, and/or make me stupid. I know what I can't do too, tho I still try to do shit I shouldn't) and I know the hefty price I'll pay for over extending myself.

I think one of the most difficult aspects for me is a loss or sense of purpose/usefulness. I've needed to fill this void with things like working on our veggie garden, dogs, etc. This part is still a work in progress and I suspect it'll be that way for the rest of my life.

I've learned to slow down, take my time and be more deliberate and mindful. Doing so has helped me accept my current situation a little more and enjoy what I do. Because, believe me, or ask my wife, it was getting ugly for a while- mood, depression at loss of function.

Walking, and other exercise like biking, weights, may seem counter-intuitive, but it helps a lot. Best (IMO) to incorporate about 20 minutes of some cardio work. I have to take it easy afterwards, but the elevated endorphins really help with mood and outlook. And, let's face it, there are so many more benefits to exercise.

Other helpful practices are meditation, yoga, Qigong.

A supplement that has also helped me is BIRM (aka Gator Blood) which I take twice a day. There's a couple threads out there on this which you might want to read. It's about $48 for a 4 oz bottle of regular and lasts approx. 1 month.

Please feel free to PM if you have further questions or if you want to talk.

Brian

[Lakefisher]

I've been taking Xtandi and Lupron for about a year. I find it better to take the Xtandi at night to lessen the side effects like fatigue. I also take .5mg of Ativan to help me sleep if I need it.

[Dan59]

I always took xtandi in the evening, few hours before bed, that way I just slept it off and was ok in the morning. It is also important as others have said to have physical activity, even if just walking for a few miles.

I wish you the best

Dan

[Apollo123]

I take immunecol platinum which helps with my tiredness without this the fatigue is crippling. I take 2/3 a day depending on how I feel. I asked my oncologist and he was happy for me to take it with my ADT and ZYtiga. Hope this helps.

[Drcrunch]

I had extremely bad fatigue for first two or three months and then it went away.i think the more fatigue , the better the response.

[Gigongman]

Try cutting the amount. Or use extsndi on an intermitant basis.

[Shamrock46]

My husband began taking Xtandi about 18 mos. ago as an add to Lupron. He began having side effects including fatigue that became more like lethargy. He also experienced brain fog and memory problems. Later he began having problems with fluid retention even though he was already on a diuretic for cardiac issues. The fluid retention got so bad that it made it difficult for him to breathe and he ended up in the hospital for a 2-night stay for IV diuretics and took no Xtandi for a week. At that time his oncologist cut his Xtandi dose in 1/2 to 2 pills/day. The lethargy then abated and returned to fatigue. Since then his PSA remains undetectable. Recently, however, he asked me to contact his oncologist because he said he's feeling much weaker in arms/legs and it's a struggle to even lift his arms or walk a short distance to our mailbox. The doctor told him to discontinue Xtandi for 1 week and then contact her with the results. Don't know how much difference 1 week will make but hope it's better...but also don't know how the result will impact his treatment. He's due for an in person visit, Lupron shot and blood work in 3 weeks when I suppose we'll learn more.

[Napper01 in reply to Shamrock46]

I’ve been on Xtandi for 5+ years now, plus Lucrin at 3/12 intervals. Fatigue got such an issue my Onco reduced me first to 3, them two caps daily. That was two years ago now and my PSA is holding at 0.01 still holding down a full time management role but it was hard for a while on the full dose.

[Shamrock46]

Completely understand. Unfortunately it's like a roller coaster ride...you have to endure the lows to appreciate the highs.