Side Effects of Xtandi???: My husband... - Advanced Prostate...

Advanced Prostate Cancer

13,735 members16,829 posts

Side Effects of Xtandi???

poppymom0211 profile image

My husband has been in Xtandi for 3 weeks now. He has MCRPC which has spread to his bones. He has felt terrible since starting Xtandi/ nausea, no appetite, exhaustion and pain. We have been battling for 13 1/2 years with this cancer. Does anyone have and advice for coping with side effects ? Please ADVISE!!

Thanks so much!

38 Replies

Everyone reacts differently to medications. If the side effect for xtandi is too much, ask his doctor to prescribe another medication, like zytiga.

I was on Xtandi for only 5 days, my side effects where extreme. You could ask your M.O. about lowering the dosage, to 2 or 3 pills and see if that helps.

Talk to his MO. He may find one of the other medications more tolerable,

Full dose made me an invalid...1/2 dose and I could go back to work... 4 years later, still on half dose.

This is the information about Xtandi and its side effects according to the FDA:

accessdata.fda.gov/drugsatf...

You could request to change to Zytiga (abiraterone) which may be better tolerated. Darolutamide which have less side effects is only approved for non metastatic CRPC.

nobaday profile image
nobaday in reply to tango65

I have been on Zytiga ( Abiraterone for over 3 years. No significant side effects for me.

Sorry to hear this. I've been on Xtandi coming up on two years. Started at full dose 160mg/day, then switched to 1/2 dos 80mg per day by oncologist after about a month after experiencing some adverse reactions (severe joint/back pain, edema lower limbs, xtreme weakness )

--> Lowering the dose to either 120 or 80 mg per day may help. Here is a link with instructions and some information for your oncologist from Xtandi xtandihcp.com/dosing/dosing...

Its been good medicine for me and hope one of the lower dosing options works for your husband (make sure to ask your oncologist asap).

I'm sure that the 80 mg kept your PSA and testosterone low. I am interested since I started on 160 and then was dropped to 120 due to reaction And it would be nice to go to 80 but I've only been on it for 2 months now. I am handling the reactions to it but it's a little difficult. That is why I am asking about where you started from with your PSA and testosterone and where you are now with the Xtandi.

PSA 2400* Lupron/Xtandi since the start , month 4 PSA 0.06. Fluctuations between .13 and 0.09 past 6 months. Year 2 coming up same meds Testosterone <10 . Hope this helps (PS Xtandi is still rough on some days)

PSA of 2400? WOW that is the highest PSA that I recall seeing. That sure encourages me to talk to my doctor abou going to 80 mg on my next visit. Thank you so much.

Is Xtandi the only treatment you have had? You seem to be doing very well on it. The Xtandi is most likely the last treatment available to my husband as he had chemo last year and did not do well on it. Thanks for your advice!! Much appreciated!

Lupron/Xtandi combo since November 2019 other than a single treatment of Zometa these are the only medicines I've had to take so far. Battle with the Xtandi on and off since day 1, now even at 80mg it gets rough as it builds up in my system each month. Had to move things around to find what works best i.e., Time of Day, with or without food , etc. For example, like others have mentioned, I've found that taking Xtandi about an hour before bedtime has allowed me to "sleep off" the worst of it. Little things like taking it with some ice cold water or gatorade from the freezer and a very small meal or snack have also helped. We're all so different either your oncologist or the Astellas (Xtandi) pharmacy may have other tips to help mitigate some of the issues. (Hint: read up on steady state, half life, and ask your oncologist if taking an occasional day off is of the Xtandi feasible) . Hope you find this somewhat helpful.... keep us posted. (no matter what always share your tips etc with your oncologist)

j-o-h-n profile image
j-o-h-n in reply to Fiddler2004

Greetings Mr. Fiddler, would you please be kind enough to get off the roof and tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/13/2021 6:14 PM DST

Fiddler2004 profile image
Fiddler2004 in reply to j-o-h-n

Hello Mr J o h n ,some of the information you seek is in my bio. So far same meds since initial diagnosis in July 2019 (thanks God) Lupron Monthly / Xtandi 80mg Daily / Cancer Center , until name change, MD Anderson... same doctors. Hope this helps

j-o-h-n profile image
j-o-h-n in reply to Fiddler2004

Thank you!!! It sure does...... Ever hear of Mischa Elman?

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/13/2021 6:58 PM DST

Fiddler2004 profile image
Fiddler2004 in reply to j-o-h-n

Yes indeed, although classically trained in my 4th year I became obsessed with Scots / Irish Fiddle and its history and introduction here in the states. Long story but I learned the violin as a returning music student in my 40's. My teacher, from Albania, played with the Greek symphony before immigrating to the states in the 1990's .

How about you J o h n .... Good Luck, Good Health and Good Humor.

j-o-h-n profile image
j-o-h-n in reply to Fiddler2004

As a kid I used to deliver groceries to him and used to hear him practicing and all the while I thought it was a young kid practicing. He lived on Central Park West and 70th Street in a duplex penthouse apartment (NYC). BTW I am an American Greek and both of my parents were born and raised in Albania. I can't even play the radio....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/13/2021 7:44 PM DST

MateoBeach profile image
MateoBeach in reply to j-o-h-n

If I were a rich man . . . I could fly to space with Mr Branson, and check that off my bucket list. 🚀😆

j-o-h-n profile image
j-o-h-n in reply to MateoBeach

Just tell Branson that you're a

** JUST CLICK ON WATCH ON YOUTUBE **

youtube.com/watch?v=DtVBCG6...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/13/2021 7:11 PM DST

I have been on Xtandi 6 months and have no serious side effects. My PSA is down to 0.04 from an initial 64 and 6*6 gys radiation starts next week. Once that is complete I will ask about reducing dose.

Wow, I’ve been on it now for 4 1/2 years and my worst part was the neuropathy when I get the wrong pain meds , or such. I learned early that I had to take it early evening so I could sleep through some of the effects. I take Effexor to help with the depression and have a couple of nausea meds that I had to take early on. Don’t be afraid to call the pharmacy at Xtandi direct they will be glad to try to help you. Never give in warrior 🙏🙏🙏

My husband also had extreme fatigue, gi issues, neuropathy and general malaise while on Xtandi which he took for 12 months. Taking it before bedtime helped him. He was still sleeping 12-16 hours a day. When it stopped working in July he changed to Lynparza ( deemed likely to be effective on tumor mutations after genetic testing). Within a week of stopping Xtandi he felt much better and had less fatigue.

j-o-h-n profile image
j-o-h-n in reply to Yank66

Do we have to Yank this out of you?Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/13/2021 6:18 PM DST

Yank66 profile image
Yank66 in reply to j-o-h-n

Ha ha- no yanking necessary. I updated the profile. Hubby is now 73, fighting this stuff for 8 1/2 years. G9, mets to spine and one rib. The Xtandi was hard on him and didn’t stop progression. He used it for a year, but PSA started climbing after 6 months or so. Other treatments are in the profile. Starting Ritalin for focus/ brain fog and increased energy ( we hope).

j-o-h-n profile image
j-o-h-n in reply to Yank66

Thank you for your reply and thank you for being a dear devoted caretaker. Keep fighting the good fight. Bless you both.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/13/2021 9:42 PM DST

My husband has been on Xtandi for 4 months now. PSA was 48 and last month it was 22. Oncologist appointment today so fingers crossed PSA is still dropping. Side effects have been extreme fatigue and lately he has complained about back ache. Could have been from stacking firewood. He is 75 and has to realize he is not getting any younger and with the Prostate cancer moved to the bones it isn't wise to do those chores anymore Best of luck for your husband and prayers it continues to help both our husband's.

j-o-h-n profile image
j-o-h-n in reply to Docker53

Another one, Greetings Docker,

Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/13/2021 6:21 PM DST

Ive been on Xtandi/Lupron solid for 56 months. At some point a few years ago I dropped from 4 a day to 3 a day. That helped a bit. Also, it has helped me to exercise frequently. It seems counterintuitive but It helps.

As you see there are many great suggestions about dose reduction, time of day it’s ingested, switching meds, resources for side effect info etc.

I consistently hear about successful dose reduction on Xtandi. I haven’t taken Xtandi but I’ve taken a good deal of everything else.

Since it’s often not mentioned, I always ask the same question about side effects, regardless of whether it’s Lupron, a second line anti androgen, chemo, any of it…

How much does he exercise and what kind?

That was the last med they tried on slowing down the cancer in his bones but the reactions with the meds & not slowing the pace made he make the decision to go on hospice. Praying for both of you

My OC doc moved me from Zytiga to Xtandi. After two weeks, I called him and said I want off Xtandi because I feel terrible. He said okay and put me back on Zytiga. He has now started me on Nubeqa 4 per with one Zytiga. No band side effects except extremely tired/no energy. But Lupron makes me tired too. My attitude is that if I'm going to die, I want to die from my disease not from the treatments. Good Luck

I started off with Xtandi four months ago. My psa suddenly jumped to 8 from 1.5 after 3 years sitting at 1.5. Along with that I am taking Zolidex every 3 months. It was a little bit tough in the beginning, and I did get a lot of back pain which affected the nerve pain in one leg. So my MO put me on Gabapentin 200mg and it has knocked out 95% of the pain to my back and leg. As well I take 1000 mg calcium per day to conserve my bones and 2000mg & Vitamin D3. I also take Crestor & a blood thinner for my heart & most importantly I do a vigorous work out every morning with 10 lb weights and walk a couple of miles 3 times a week. My diet has changed significantly but I still have a burger once a week, chicken a couple of times a week lots of salads sardines, canned salmon tuna, stay away from those egg yolks, they are poison. My psa is 0.01 non detectable and I have overcome most of the side effects of Xtandi. I can live like this a long time if nothing changes. A lot of it is mind over matter with determination. Best of luck to your husband.

j-o-h-n profile image
j-o-h-n in reply to Jaguarxj

More bio please..... all voluntary... (age, location, etc)

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/14/2021 7:52 PM DST

Jaguarxj profile image
Jaguarxj in reply to j-o-h-n

Hi John I'm a 75 year old male living in Toronto as stated I have had a radical prostectomy in 2004. 5 years later I had to have radiation upon its return and once more it's back. My surgical oncologist said there is no possible way to operate my radiation oncologist has said there is no possible way to to do more radiation. My cancer has spread to my lymph nodes but all is being controlled well with Zolidex & Xtandi.i am looking into a doctor who lives in Israel who has had some success at killing off the tumor with a new application of putting a needle into the tumor and freezing it until it kills the cancer. His name is Professor Dr. David Margel. Sort of works the opposite of HiFu. Any more questions feel free to ask

j-o-h-n profile image
j-o-h-n in reply to Jaguarxj

Thank you for your quick reply. You may want to copy your response into your logon page for others to view. I do hope that Dr. Margel's freezing of your lymph node tumors is successful. It would be a valuable tool for our members.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/14/2021 10:26 PM DST

As mentioned above, we all tolerate medicine differently. I've been on Xtandi as a mono-therapy for over seven years. Never had serious side effects. PSA undetectable.

Maybe the Poppies have something to offer for the pain. 😆Seriously though, it has been shown in clinical trials of treatment sequencing that it appears better to use abiraterone first until it fails then switch to enzalutamide (perhaps with chemo in between to help reset) rather than the reverse of enzalutamide first. This is worth discussing with his MO.

You may also like...