Log in
Advanced Prostate Cancer
7,444 members7,592 posts

Xtandi and the terrible feeling that i must be getting worse

i have been on Xtandi..one at first and now 2....for a month and was tired ..very most of time and today and yesterday I am finding it hard to get dressed ..just too exhausted.

Has anyone else felt this way on Xtandi...Took Zytiga for about 7 mths...never felt this way.

Sidnw

37 Replies
oldestnewest

I think it's the most common side effect. You can ask your doctor if he can prescribe modafinil if it's interfering with your quality of life.

3 likes
Reply

Stoped Xtandi more than a month ago. Still extremingly tired, exhausted. Is it normal ? Any suggestions?

Reply

According to most people who are posting on here they are taking it at bed time and saying that forcing yourself to walk seems to help most.

Your complaint seems to be repeated by others. Is it working for lowering PSA and side effects worth trade off. I am afraid it’s not working for my husband.

2 likes
Reply

Elgie was extremely weak on Xtandi. He could barely walk but could NOT sleep. I hope you get use to it Sidnw and it works wonderfully.

Jackie

1 like
Reply

He stored Xtandi after 2 months.... then tried 1 more month and then stopped it. The side affects lingered for at least 5 to 6 months. I hope you find a different medicine Sid nw.

Reply

I was also extremely weak while using Xtandi. It was an effort to even lift my legs.

1 like
Reply

the dose is usually 4 40mg caps

Reply

Try to get out and walk, try some deep breathing exercises---the types done in Physical Therapy. There are a couple of drugs to help Tall_Allen mentioned one. Tough to take a drug to counteract another drug---but many of us have had to. Spring is here!

Nalakrats

1 like
Reply

I've been on Xtandi for 16 months, the prescribed 4 capsules taken all at once per day. Took my PSA down from 95.0 to 1.2. Current PSA is 1.7. I have a mild background lack of energy and tiredness pretty much all the time, compared to before I started. Getting in some short walks seems to help. I take mine at night, but not sure if it makes a difference. I most often rest and maybe nap a little in the early afternoon. My sleep is about the same as during the 3 years on Lupron before starting Xtandi.

(The worst fatigue and weaknesses I've felt were in the several days after I got some Provenge infusions back in 2016. I have no experiences with fatigue from any chemos, yet. I am very grateful for some lucky biology and a survival of 4 years and 4 months so far, from original diagnosis at age 65 as very metastatic to bones and lymph nodes and a PSA of 5,006.)

Charles

7 likes
Reply

I salute you! Way to go.

Good Luck and Good Health.

j-o-h-n Wednesday 03/28/2018 6:10 PM EDT

1 like
Reply

Your one lucky tough blessed Pca patient here. Thx for sharing. I just started my first Lupron shot for bone Mets. I’m cautiously optimistic. Stan AZ/AK

Reply

Have been taking Xtandi for almost three months. I take them late evening, however I'm still very tired. I do manage to go to the gym three times a week which helps. If I didn't do that I would be sitting around all day.

Regarding my psa it has reduced it from 3.5 to 0.8.

1 like
Reply

My husband felt tired on Zytiga and Xtandi unfortunately neither worked for him, before chemo and put back on Zytiga Two months after this past chemo and rising PSA.

My husband was 65 when first Dx stage 4 PC and now is 74 young. He is now on a clincial trial drug that was just recently FDA approved.

I think most of these drugs have such side effects. It's true to try and walk and as hard as it is to try and do some exercise.

you are not getting worse they always say some of the drugs make you feel worse than the disease. My husband was terribly sick with taxotere chemo this past year.

Hang in there!! Best wishes coming your way!!

Sincerely, Lynn Pa.

1 like
Reply

Have been on 4 every day for a year now, yes started draggy ,bone pain, joint pain ,found out that the pain meds they had me on at first made the Xtandi effects worse, the more I took the worse they were. Neuropathy in legs and back . Couldn’t sleep . Changed pain meds to Ms Cotin has been better, also I take them at night as that has seemed to be better as well

1 like
Reply

What pain meds were you on? My Dad just started and is having terrible side effects.

Reply

Sorry missed this. I’m on morphine morning and night with dilutin when needed. Sorry for the spelling. Was on opioids and they made things really bad.

Reply

Forgot to say that it seems to settle in my hips and lower back, the longer I sit the worse it is

1 like
Reply

I have been taking Xtandi for 2.5 years now. And yes, SEs can be pretty rough - a sickly fatigue and brain fog/cognitive issues are a pretty common experience for me. I take at bedtime. Daily exercise even when I don't want to and eating a healthy diet seems to help. As Allen said there are a couple of drugs that can be prescribed to alleviate the fatigue. I try and stay active but stop and take short rests when needed, which helps.

On the bright side my PSA remains undetectable and latest scans were clear. I've been given the opportunity to try intermittent HT but I'm afraid if I do that it may allow PCA to come out of dormancy. My docs feel that staying the course is best, so on we go.

One more cast...

Ed

4 likes
Reply

I have been on Xtandi for 7 months. PSA has dropped from 5.5 to 1.4. After about one month I started experiencing extreme fatigue, severe bloating, gas and stomach pain which continues without much relief though I have tried many over the counter drugs . Xtandi has done nothing for pain relief.

Currently controlling pain from spinal and rib fractures with 75 mcg Fetanyl patches every 3 days and 2 mg Hydromorphone tablets for break thru pain every 4 to six hours. See my profile for summary of treatment history.

2 likes
Reply

I took Xtandi (4 x 40 MG capsules daily) for 8 months and felt extremely tired. Unfortunately, it was not effective at lowering my PSA. For this reason, I was prescribed Zytiga which has made my life very, very difficult. I lost weight and have to take naps throughout the day. It also affected my liver functions and had to take one week breaks from the med on two occasions. To make a long story short, they had to lower my dosage by half (500mg). I am presently 56 years old, 5'7" or and weigh 120 lbs and I have had prostate cancer for 12 years. I underwent radical prostatectomy surgery, radiation to the pelvic floor. Later they irradiated 3 metastatic lesions on my chest. I am also on Lupron and Xgeva. In addition, I was on Casodex until it no longer worked. Immunotherapy with Provenge failed as well. As years went by, the side effects have taken a toll on me. I have a most difficult time focusing and feel dizzy quite often. In addition, I started to feel intermittent bone pain in my legs and arms. I am in the process of applying for disability retirement from my teaching profession which I love.

2 likes
Reply

Hi Franco-moore, You have been through a lot over 12 years and at the prime of your life.

My husband enjoyed working, too, but a moved made him to retire from his part time job. I like that he is retired but feel guilty as I know he prefers going off to work.

I was wondering if you could tell me who irradiated the 3 metastatic lesions on your chest. I will look at your history to see if I can get additional information from that. My husband has 3 lesions in his lung so that's why I am asking. Trying to be positive but Xtandi doesn't seem to be helping him either.

If you choose to, thanks for sharing.

Mary

Reply

Mary,

Sorry to hear your husband has lesions, especially on his lung. I saw Dr. Robert B. Ash at the St. Joseph Cancer Treatment and Prevention Center in Orange, CA.

Link: stjudemedicalcenter.org/fin...

Hope this information is useful to you and your husband.

Sending you the best,

Daniel Franco-Moore

Reply

I have been taking Xtandi for 5 months now. I dropped from 4 tablets daily to 3 on the advice of my doctors, and may drop to 2. My fatigue varies. It makes live difficult for my wife and me. Today, I feel good. Yesterday I felt like s***.

I still am on ADT, and my PSA is still <0.1. Recent studies have shown that taking Xtandi at my stage of PCa treatment can prolong life quite a bit. So I am trying to stick it out. My regimen is to eat relatively healthy with the occasional treat (like the yummy donut I had this morning as part of breakfast) and exercise (mostly walking) when I have the energy (yes I should do more exercise.) I am over 6 years into this fight, and expect to fight it hard for a long time.

One thing that helps me is Medical Marijuna (MMJ). I take it starting about the time I take my 3 Xtandi pills in the evening, about 2 hours before I want to fall asleep. I take a few tokes of CBD oil at about the same time to help me sleep and relieve the pain in my lower back, hips, and groin area. It works!! But to get to sleep, I vape a 1:1 oil starting about 10 minutes before I am ready to turn out the light. It works!! I fall asleep and stay asleep for about 3 hours. I wake up, go to the bathroom whether or not I feel the need, then take a couple of tokes of the 1:1. Rinse and repeat. It works!! I can get up without much pain at all (it is about a 3 without out all this, a 1 with it) and feeling rested - after about 11 1/2 hours of sleep. It is pretty good sleep.

I hate having to spend extra hours sleeping. My ADT took me from 8 hours (or less) to 10 hours or so, and the Xtandi + MMJ took me to 11 1/2 hours. So I have lost almost 4 hours out of every waking day - a lot to give up. But I am still undetectable. I recommend the MMJ if you can get it. I did use street MJ before I was able to get the medical. It worked, but not as effectively.

tl;dr

Take Xtandi 2 hours before bed. Take CBD 2 hours before bed. Take 1:1 MMJ at bedtime and when you wake up. Enjoy!

1 like
Reply

A hit to be fit....

Good Luck and Good Health.

j-o-h-n Wednesday 03/28/2018 6:17 PM EDT

1 like
Reply

I am really sorry to hear that Sidnw. I hope you get netter soon. I don't want to be curious and get too personal, but for the benefit of this group why did you give up on Xytiga when you seemed to have got along well with it. I am also on Xytiga for the past three month, and though there have been hardly any adverse effects, the PSA fell only from 11,8 to 4,8...a little disappointing when most contris here reported a fall from several hundreds to undetectable level in a few weeks. I wonder if others had the same experience.

Reply

I stopped zytiga afte 7 mths. It stopped working for me, but was good until that time. Some can take it much longer and some of us can't. Was very disappointed when it stopped working...felt great on it.

Sidnw

Reply

Interruption theraphy with Xtandi more than a month ago. I always feel extremently tired and weak.Is normal?

Reply

Stop Xtandi therapy because extemingly tired and weak. More than one month later i still feel exhausted, extreningly tired. Is it normal?? Any suggestions???

Reply

Stoped Xtandi more than a month ago. Still extremingly tired, exhausted. Is it normal ? Any suggestions?

Reply

I recently read a lot on this "tiredness" from cancer and the different meds causing it...ALSO, they say a lot is caused by Depression.

Shyrlene Weiner

Reply

Shyrlene, Is Sid able to sleep at night? Soon after we talked about that I saw where Nalakrats was also using melatonin to get to sleep at night. Wishing you both the best

Dan

Reply

Melatonin doesn’t seem to be helping our household sleep any better...sorry to say because we were hopeful.

Reply

Since I wrote last, I saw my Oncologist.......Firstly, regarding PSA, he said with me since I have bone cancer and it's in the bone marrow, he doesn't pay too much attention to it.....He now put me on Prednasone twice a day....05 hoping that wd. help me eat more and feel better.....He made appt's, for bone scan and scan in the abdomen......He mentioned that new med. being talked about was not for metastatic cancer patients. At least that;s what I understood.....He will see me after the tests. He still says tiredness also is from Depression too..plays a part in it.

What is your opinion Dan as well as you other well informed guys???

Sidnw

Reply

Hi Sid, did he tell you what your psa was doing anyway? The new drug for non metastatic is apalutamide, not sure why it is not for guys with cancer in bone. There may be some truth to the depression. However after hearing that you can not get to sleep at night, I suspect that may be a reason why you are tired in the daytime. I started taking both my prednisone in the morning, and have kept going all day since then. The melatonin I mentioned to aid in getting to sleep at night is a herbal supplement that you can buy over the counter most anywhere. I wish the best always for you and Shirlene

Dan

Reply

Dan, He will be taking PSA and I will let you know. You taking theprednisone ...both, in morning sounds interesting....will find out more....I will get the melatonin and try it..anythg. to help sleep. Thks. Dan for advice....We certainly wish you and wife the best always also. Will be in touch.

Sidnw

1 like
Reply

I’ve been like that many days weeks and months out of my 3yrs . Lupron and Tak -700 plus radiation are what I’ve used that’ve caused these side effects. I think fatigue can be a side effect of most treatments and drugs. I slept for 32hrs straight a few days ago..That’s too much.Your fatigue should improve with time. I get a feeling like I’m wearing a lead overcoat. Hope these clouds part soon for you. Good luck.

Reply

Lulu....32 hours!!!!!! wow!! and I understand the more individuals sleep ...the more tired they are.....Good luck to you Lulu...

Sidnw

Reply

You may also like...