Hi all, I am new to this community so be patient with me. My husband started Xtandi three weeks ago and has really gone downhill. He has no energy, sleeps at least twenty hours per day and just doesn't feel good. He told me that he cannot described, it. He said it feels like feel doomsday. We met with his Oncologist two days ago and he told him to stop taking it until he gets back on his feet. He stopped it on Friday and now feels worse. He is not eating, sick to his stomach and cannot stay awake. Last night he told me that he couldn't take it anymore and wants to stop all treatments. I do believe the treatments are taking him down. Have any of you or someone you know stopped Xtandi because the side effects were too bad?
Weaning off of Xtandi: Hi all, I am new... - Advanced Prostate...
Weaning off of Xtandi
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CaregiverJane
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If you could provide a short summary of his prior history, treatments to date, and current disease load. It might help you get some better anecdotal replies here. General fatigue is one commonly reported side-effect while on Xtandi, but it for many it is tolerable over many months or even years. You might also check his recent labs for other things that can affect energy and how he feels. Perhaps red blood cell counts, hemoglobin level, etc.
Xtandi can take a while to clear the system after stopping or reducing a dose. Details in this full prescribing information which probably also came with his first bottle of capsules.
accessdata.fda.gov/drugsatf...
There may also be the possibility that the understandable stress and anxiety of being in his situation is taking its toll on him mentally/psychologically. His oncologist may be able to refer him to a psychologist or other specialist for an evaluation, some initial "talk" therapy, or perhaps some palliative mood medication.
Thank you for your reply. I wasn't sure where to enter his history, but in short, he was diagnosed in 2012 with Stage IV - Gleason 9 and it was outside the prostate and in his sacrum at diagnosis. Had many rounds of radiation, chemo, Lupron, then Casodex, then Zytiga and now Xtandi. He now has 14 tumors. Tumors have slowly grown over the years, but were managed through radiation and chemo. PSA has never been an indicator for him. Now his PSA is slowly rising. Recent scans show that the tumors are getting larger. They are currently located up and down his spine, 2 ribs, leg and neck. He also has bisphosphonate related osteonecrosis of the jaw which was caused from Zometa. He had a free-flap jaw resection a year ago due to jaw disintegration and recovery from that has been sloooow. So now, here we are 8 years later and meds are not working. Next step is chemo, but he is too weak right now to start that. It's been a long road.
CJ,
See the link below and read about this potential trial treatment. Scroll down the page for further reading.
Then ask your oncologist about it. If he/she is unfamiliar with this, look for another oncologist who specializes in genitourinary cancers. The best to you...
pubmed.ncbi.nlm.nih.gov/283...
Interesting. I just read through it. We have an appointment this Friday with the Mayo Clinic Cancer Center for a second opinion. I will discuss it with the Oncologist. Thanks so much. This Community is very helpful. It helps to have others with the same disease to discuss this.
Hello Jane, I was dx in 2011 with Gleason 9 also. I did Mayo Rochester, Dr Eugene Kwon, for 5 years. He is amazing. Now at Mayo Phx, Dr Bryce. Would you care to share the doc you will see? Prayers out to you guys. Xtandi is brutal, Ive been on it for 47 months.
His name is Doctor Joseph at the Jacksonville Mayo Clinic. I looked him up but forgot his first name. He is an Oncologist who specializes in Prostate Cancer.
My oh my, CaregiverJane. Your Dear One surely has been through a lot over the past 8 years. So sorry to hear of the recent radiographic progression.
(Anecdotally, I was on monthly Zometa for about 30 months and then every 3 months for another 3 years or so. My oncologist stopped it a little over a year ago, figuring that I had enough in my bones to last a (my) lifetime. I got lucky. Never got ONJ, which is relatively rare they say, ... until it happens to you. I knew a woman with metastatic breast cancer who developed a lesser case of ONJ. It took quite a while for a specialist to treat it successfully.)
The extent of his mets in bones and the low PSA expression are, of course, concerning.
(Again, anecdotally, I knew a man in a local cancer support group whose prostate cancer eventually spread into several of his larger bones like the hips and femurs. It was the beginning of big trouble for his normal development of key blood cell types. He went on to needing multiple blood transfusion to rescue him from time to time. Needless to say, his energy levels and Quality of Life performance levels took some very real and miserable roller coaster rides.)
If your medical oncologist is advising against starting a next Chemo due to his performance levels and/or lab results, I'd tend to believe it. I'm guessing that there might be a similar recommendation if considering something like Xofigo (Rad-223).
All of which must be so very tough for you both. Advancing disease. Increasing suffering. Treatments "on hold" as possibly being too dangerous to start right now.
Hopefully, you may able to get your oncologist/regular doctor to to bring some palliative care options to bear. There are nausea meds. There may be other "symptoms" alleviating meds that might help.
Hope things may get better relatively soon.
Hugs to you. You keep hugging and kissing on him too.
I've heard that that sort of thing also has some healing benefits.
"We may not be cured of our disease, but we can still be healed in many ways."
Our caregivers are certainly our heroes.
How sweet of you. Thanks for your kind words and support.
Fatigue is the #1 side effect of Xtandi, unfortunately. There is a new hormonal therapy (Nubeqa) that may be less fatiguing. It is so far only approved for non-metastatic patients, but your oncologist may be able to make a case for it, given his reaction to Xtandi. Other options are:(1) Xofigo + Provenge, like in this trial:
ascopubs.org/doi/abs/10.120...
or
(2) Jevtana
Thank you Allen.
How old is he and secondly since he stopped xtandi has his PSA been tested?
He is 66 and he just stopped taking it after his appointment on Friday. Don't know the exact PSA level, but on Friday, his PSA was rising and he had been on it for three weeks.
He is very young my dad is 82 and he was on it and he was miserable he was tired, he has Mets to his bones but his back was killing him he had no appetite and could barely walk I asked the doctor if he could stop them even though it did bring his PSA down the side effects were worse than any of his other treatments so now PSA still is low we r taking a break and once he came off of them within 3 weeks he had more energy less pain and more importantly could walk he was almost paralyzed so I feel for your husband and everyone experiences with this medicine are differently.
I hope something can help him. Prayers
Thank you Olivia.
Dear Caregiver Jane, I was taking Xtandi starting beginning of December within 3 weeks I became a “walking zombie”. My Wife and Son thought I wouldn’t make Christmas. Not eating lost a stone in weight. I guess it only the last couple of weeks that I am getting back to anything near “normal” - whatever normal is with this disease. Fingers crossed for you both.
That is exactly how my husband is. Did you stop taking it completely?
Yes stopped completely Onc is trying to get me to start it again at a reduced dose but I’m resisting.
I DON'T blame you! I'm not sure if he would ever get used to it, even in small doses. He has so much back and knee pain now and it exaggerates too many things!
Hi CaregiverJane,
If your husband is thinking of stopping all treatments then he might wish to consider some complementary supplements that are relatively inexpensive and non toxic.
If you click on my avatar picture you’ll be able to read my bio and some posts I started about those supplements and my own cancer journey.
I'm the first to admit that there's no peer reviewed scientific evidence to show that Essiac is effective, but I've been taking Essiac tincture together with CBD oil for 4 years and am very happy with my results so far.
When I stopped conventional treatment in early 2017 due to severe side effects my oncologist assured me that my PSA would keep continually rising and my mets would spread further.
However, 4 years later my PSA is virtually the same as when I was first diagnosed December 2016.
My 2020 PSMA PET scan was better than my 2016 PSMA PET scan with distant metastases either resolved or smaller.
I still see my oncologist every 3 months so he can keep a track of my progress.
He is amazed by how well I'm doing as it's over 4 years since I was first diagnosed. He can't explain it, but tells me to just keep doing what I've been doing because it seems to be working for me.
Here's a link to the post I started on this forum about my own cancer journey.
healthunlocked.com/advanced....
Best wishes to you both.
Dave
CaregiverJane in reply to
Thanks Dave. I will go back and read. That sounds like a better plan to tell you the truth. I will read your journey and see what all you have done.
He has one big thing in his favor....YOU!! Some men are not so lucky....imagine.
We just take it one day at a time and cross each hurdle when it comes our way. As one of our second opinion Oncologist from Moffitt put it "you just wait until the next shoe drops".
Hi CaregiverJaneI can totally understand how you feel. My husband has been treated for Prostate Cancer for the past 9 years, with Hormone Therapy (by injection every 6 months). It was thought initially that this had metastised to his hip, but was always a question Mark. So last year, my husbands PSA doubled and he was put on Xtandi. For the first 6 weeks all was well. Then it hit. Just like your husband, he slept most of the day, did not eat as everything tasted odd. Had ended up not being able to get off the toilet ash3 did not have the energy. He could not hold a conversation and I felt like I had lost him.
Our Consultant was on holiday, so I researched a lot, and found that if side effects are bad, the drug company suggest cutting the daily dose. So I did this, but no improvement. As my husband was loosing it, we cut another one a week later. So we saw the Consultant who stopped them immediately. By this time we were down to 1 a day. It still took about 6 weeks to completely leave his system. I would add his PSA had gone down to immeasurable.
We have to go back to see the Consultant in March, and we are praying that another treatment can be given, if needed, as I know he will refuse Xtandi.
Please make an appointment to see your Consultant and discuss the side effects and stopping the drug.
Good luck.
I have just finished my first 30 days on Xtandi. I am 3 months on Firmagon. My previous PSA, 1 month ago was 4.7 and Testoserone was 0.0%. Godd as most PCa feeds on T. This most recent only dropped PSA to 4.2 and T up to 17%. Was surprised so little on PSA and did not expect rise in T. These 2nd gen ADT receptor blockers should improve stats more dramatically. Had some swelling of tongue and salivary gland swelling first 2 weeks, plus more time on the couch, but sleeping still about 7 hrs per night. Not 20 like your husband. Each Man will have their own journey, and it seems key to listen to your body talk. There are other alternatives, thank goodness. Remind him he is in the fight of his life. Watch the Netflix program “HEAL”. There is a segment on 1500 terminal Ca patients now in Remission and 9 steps they all had in common. I wrote them down. Best of luck🍀
In Heal, the 9 steps came from the book Radical Remission. In the follow-up book called Radical Hope, they have added a 10th step: exercise.
We will definitely watch it. Thanks for the information. Best of Luck to you!
There is a great documentary on Netflix called “Heal” that looks closely at the body’s ability to heal, and the power of the mind to heal. Ties it all in with Quantum physics (energy), or body-mind-spirit.
Looked at 1500 people in Remission from terminal diagnosis’, and found that all shared these 9 common beliefs ! (Note, only 2 are physical. 7 are spiritual):
1)Radically changing your diet. ✔️
2)Taking control of your healthcare (Western Medicine).✔️
3)Following your intuition. ✔️
4)Using herbs and supplements. ✔️
5)Releasing suppressed emotions✔️
6)Increasing positive emotions. ✔️
7)Embracing social support. ✔️
8)Deepening your spiritual connection✔️
9)Have a strong reason for living.✔️✔️✔️
Similar to the 7 steps I created. I have always said #9 to Barbara and our children❤️
Hi CaregiverJane,What you are describing is similar to what I've experienced myself when I tried Casodex 150mg. I too slept all the time and was losing weight. The thing is that the half-life of some of those drugs is quite long and they can stay in your system for weeks after you've stopped taking them. I wish you and your husband the best of luck in hope that he won't have to wait too long before feeling more like himself.
Thank you.
Hello CaregiverJane. I began Xtandi in October 2020, after having been on Zytega (with Lupron/Eligard) for the past two and a half years from diagnosis. By early December, I developed diarrhea, fatigue, nausea, loss of appetite, and weight loss. New labs this month will show whether the Xtandi is going to work against my cancer, but in the meantime I am trying to address the side effects. I am working with a nutritionist to address the digestive concerns and my energy levels. My diarrhea seems to have abated. I still have fatigue, but not as serious as your husband's. I also suffer from osteoarthritis which seems to have be exacerbated by the Xtandi, so I am trying to see if pain medicines will help.
Good luck. My husband is on a generous dose of pain meds as well, but he complains about having excruciating pain in his ankle that the meds don't touch.
Did they start him on a lower dose? My husband took 2 pills for two weeks and didn't have any added side effects. He is also on Lupron. Now he is 2 weeks into full dose of 4 pills. Now he is more tired and said he feels like he isn't thinking as clearly. Oncologist said if he can't handle side effects to call and they would try something else. So far he isn't at that point! I would see if lower dose at first would help your husband or ask Dr for something else! Good luck! Hug!
No lower dose. He feels so bad that he just wants it OUT of his system as of right now. That could change, but we will wait and see what the new Oncologist says.
Several of the members of my support group report this with hormonal therapy. Some more affected thatn others; some for longer times than others. Weakness and fatigue are the first-listed in the Adverse Reactions listing. An analogy might be having an automobile with the fuel hose 90% pinched off. Car would not go well. A man's body without testosterone is similar. For most, this subsides; for some it never doesn. Only your husband can decided whether he will tolerate it. Good luck, fair winds.
Greetings CaregiverJane.I read that you've answered some of the questions below, so ignore those and if you wish answer the rest. Thank you.....
Please tell us his 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 him/you and helps us too. When you respond, copy and paste it in his/your home page for his/your use and for other members’ reference.
THANK YOU AND KEEP POSTING!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 01/25/2021 5:56 PM EST
I wil keep posting. I have to figure all of this out though. Everyone has been so helpful and kind!
To CJ,
Yes it is overwhelming..... But keep your cool.... there are many people here to help you.. Take one day at a time.... but try to get the best doctors than you can..... I understand your concern about your husband's pain.... but a good M.O. should be able to help him.... Take care and give your husband my regards.... and tell him that he will do just fine.....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 01/26/2021 1:05 PM EST
Yes, I have known a couple of men that could not tolerate Xtandi. They also rejected other treatment. Sadly, neither are with us any longer.I truly hope your husband has a better outcome.
I do too. I can see why men give up at some point. It wears you out and sucks the life out of you. I remember him asking one of his Oncologist how you actually die from cancer and she said that it is like a parasite that enters your body and just going and going until it absolutely wears you out!
Hi CaregiverJane...my dad was diagnosed with metastatic stage 4 cancer in September 2019. He started on zytiga, which was ok. Some fatigue and it did work for about a year. Once his psa started rising, they switched him to xtandi in November 2020. Within a few days he lost his appetite. Extreme fatigue, dry skin. He then started to noticeably lose cognitive ability. He had a uti around Christmas which exacerbated his decline. Once that was treated, he improved some, but then began to decline again. His doctor took him off the xtandi about two weeks ago. He is still very weak, but has improved cognitively and has started eating some solids. It is hard to tell if the symptoms he is experiencing are due to the cancer, meds, or all his other underlying health conditions, but it did seem pretty coincidental that it all started once he started on xtandi. Right now he is doing pt to get some strength back because of course, the less you move, the less you eat, the weaker you become. I did call the company to report the side effects.
Wishing you and your husband strength.
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