My cousin's husband stopped Xtandi after having so many side effects. He was on 4 pills day. His doctor said to stop. Now, a week later, he is throwing up and definitely showing weakness in his legs. Has anyone experienced worsening side effects while the drug is wearing off. Is there a weaning process to this drug?
thanks very much...genie
Yes Genie. Elgie became worse for almost 2 months after stopping the Xtandi. He is finally starting to recover.
Thank you so much.. My cousin is so worried. He is throwing up... exhausted.. his legs feel weak..
Also, it didn't work, he was on it for 4 months. It really disturbed his appetite.. he has lost weight. Also, his psa jumped from 72 to 130..
So, he stopped last week. Also, cognitive difficulties.. This site and ALL are a God Send... Thank you .. many blessings...
My husband had similar side effects plus others and found it not to work as well. His side effects lessened within a month or so if I remember correctly.
Charlean
Thank you Charlean.. you like Jackie are two of the many 'gems'.. here..
This will be helpful to her. First, he has to get hydrated. Thank YOU so much... what this type of sharing does is so much more than sharing..it is healing, creating information, peace and calm to many who are in such deep pain... thank you again.. Blessings.. Genie
My husband was on so many drugs .xtandi was the one that did him in he would say this was the worst drug ever ...My husband passed a few weeks ago. Stay well .pray for a cure
Cancer09.....So so sorry to hear you are now part of the club no one wants to be in. I know how difficult this is for you but thank you for sharing your experiences. I find myself getting more bitter these days( I am so trying not to be) and having great difficulty reading about the drugs, the treatments, the side effects, and not just saying be careful of the treatment..its worse than the disease. I feel its important though for those who are still dealing with this to understand that these drugs are not always a good choice. And so it's important for people like you to share the problems as well.
I know everyone wants to stay positive and it is very important. I also know everyone wants to do everything they can to beat this cancer but this is an advanced prostate cancer site and many will not. I am also very sorry that we lost all those past messages on the yahoo group that I had originally joined. I found tremendous information sharing and saw similar situations, similar treatments, the progression of patients going through many of the same stages and ideas that helped make many of our decisions. This group is rather new but still has a lot of good posts..but the older site had years to read up on. I really do wish it had stayed up just for reference.
Charlean
I suspect these symptoms Might be due to disease progression rather than to the withdrawal of Xtandi.
Vomiting & muscle weakness can be caused by raised serum calcium levels due to calcium being dissolved from bones by cancer.
Weak legs can be the start of Cauda Equina Syndrome. This is a potentially serious condition which requires Same Day treatment.
He needs an urgent medical opinion & blood test.
I hope I am wrong about Cause Equina Syndrome.
I will look up Cauda Equina Syndrome. Thank you for your reply.
As of right now he is hospitalized, with normal blood work. His symptoms still are there.
From further talk with other wives, who are telling me the exact symptoms, long after xtandi has been stopped, I'm going to right now think, it has more to do with Xtandi. The company is checking on these symptoms of other patients.
It's a tough drug. Those taking it with little side effects, that's wonderful.
The loss of appetite along with the fatigue alone, with muscle weakness in the legs and being disoriented is being reported quite a bit apparently.
The appetite was a direct side effect almost immediately. This does linger after the drug is stopped.
I will look up the Cauda Equina though.. it's always good to be aware.
I appreciate this group.
I learn a lot from this community. Thank you..
Hi, I looked up Cauda Equina Syndrome which reminds me of compression of the spinal nerves possibly causing bring paralyzed. My cousins symptoms don't include back pain.
His symptoms are nausea, vomiting, loss of appetite, fatigue, confusion, weakness of legs- and a few more.
We know anything is possible always- though, they may find progression of the disease, this drug Xtandi is at least all or most of the cause at this point. Can't be proven because, that's just the way it is. But, people's stories help to zero in on Xtandi. thanks.. I never knew the term Cauda Equina ... I just hear of compression fracture of the spine. Yes, very serious.
A few of the symptoms besides back pain, sciatica pain, loss of control of bowel, and/or bladder, also a tight band around the mid-section. Any more?? I'd like to know since, we all need to stay educated...thanks once again.. strong health to you...
I loved the other group. There was no effort connecting. With my busy schedule I had the emails coming into my mail and so I did read more and follow people more. We followers so many people who became heroes and friends. There was a special person John, I cant recall his last name right at this moment. He ran a food bank in the Midwest. He put everything out there for us. Similar to Eric. John would discuss, in depth, the mess, chemo, not holding back. He was loved. I agree the reference would have been good. Yahoo groups are still thriving, they haven't been shut down.
Thanks once again. Genie
Sorry for the typos. This happen when I use my phone to type. Meds instead of mess.
We followed.
I can't find the edit button.
the edit button, when its there, is to the right of the "like", part of the menu of the down-arrow button
John Arnold. He was so very helpful .
Yes, thanks, John Arnold. Anytime we still here can offer thanks and remember someone that has passed is a good thing. He gave a lot. Remember, he felt so good about his food pantry that he created out of nothing. Yes, John Arnold.. Thank you..
He literally saved my sanity when my husband was diagnosed. John Arnold was an Agent Orange exposed Vietnam veteran, as is my husband, also a John. He helped me navigate the VA in numerous helpful ways, often personally emailing me with instructions and patient encouragement. He was my guardian angel in a very dark time. He was so helpful to everyone and always of good cheer. I was heartbroken when I learned he passed away. I selfishly wish he was here now as it appears my husband is closing in on his available treatment options.
thanks for the caution on xtandi/enzalutimide. i had not heard that before
Hi Genie-Paul was wondering if your cousin's husband got better after a month or so? My father stopped Xtandi a week ago and has weakness and nausea, loss of appetite
How long do the side effects last? My Dad was taking xtandi, and now can barely stand up, let alone walk....very tough....he has been off it a week now, i am praying that these side effects subside, can anyone give me any insight? Much appreciated, this is so tough..
I tried to stop for awhile. I had withdrawals. I went back on it. I think you need to get weined off it slowly. I'm sorry some have had bad reactions to it.
My husband stopped taking 4 Xtandi per day last week per doctors orders. So far no withdrawal issues.
Xtandi was slightly lowering his PSA after using it four months. However, he began having unexplained cognitive issues and urinary incontinence. When we mentioned these issues to the MO he said to stop Xtandi.
This MO prefers Zytiga with Prednisone anyway and was willing for my husband to try that. We are waiting until the next visit to decide whether to do anymore treatments at his age and stage.
hi mjbach
Please could you let me know what happened after going off Xtandi?
we get nausea right after taking the four tablets.
His PSA actually went down more after abruptly stopping Xtandi that time last year.
I have been taking Xtandi since April 2019, and just after 3rd Lu177 dose. A research doc said Xtandi would boost PsMa expression at my countless mets and thus improve action of the 4th Lu177 dose in May 2019. Before Lu177, Psa was 25 in Nov 2018, and Psa went down to 0.32 one year later which I think was mainly caused by action of Xtandi, and with it my Psa would not have reduced so much. Psa bounced right back up to 30 by July this year 2020 and I had more 5th and 6th dose of Lu177 in July and October. Psa went down to 8, and is now 7.6, so virtually a flat response and recent PsMa scan showed only bone mets with varying SUV for PsMa and I think new mets are making increased Psa and old mets that are dying are making less Psa, giving a flat line result.But docs have told me to keep taking Xtandi and I think it has failed to work at all now because it is 20 months since I began taking it.
I've just been diagnosed with high blood pressure despite healthy diet, and being very fit cycling 220km a week, BMI < 23, resting HR < 50, and after using a borrowed BP gadget that measures BP, I have average Systemic BP = 180, Diastolic average BP about 80, and average HR 50.
If I stopped taking Xtandi now I expect Psa to be unaffected, because my Pca and my body has worked out how to block Xtandi from doing anything, except perhaps antagonizing my vascular system and causing high BP. I have not had any seizures or any or other side effects from Lu177 or known to be likely with Xtandi.
All my blood tests look good, and I have recently cycled up to 93km in a single ride with no ill effects and indeed I felt better after such rides that are hard work for 4 hours.
But the problem of high BP remains. The doctors at hospital where I see my oncologist saw no BP rise, but I'd cycled 20km to hospital, then rested while waiting to be checked out by nurses. BP was OK. I could replicate that response here at home with BP gadget, but at most other times of day BP was 190/85 and considered too high, and my smart local doc saw the high BP when I got monthly Lucrin ADT injection. I looked up effects of low testosterone and nothing said BP would rise while chemically castrated, but then the Xtandi and / or Lucrin may have effect on BP regardless of what the effect they have on testosterone production. The ADT has stopped working about 4 years ago, and its another thing which I wonder why is being continued because my testicles have atrophied they are unlikely to ever make Testosterone again, and just what the adrenal glands are doing is unknown, and I don't know if Pca in my bones is making its own dy-hydro-testosterone thus allowing Pca to grow.
But today, after 60km on bike yesterday, I was able to cycle 6km into town and 6km home to get to my dentist, a very delightful Viet lady with excellent skills and highly perceptive nature, and another2 young ladies cleaned my teeth so this beautiful team have prevented loss of any more teeth over last 10 years. I lost one molar at 19, after a shonky dentist did a real bad job filling, and another at 55, when another old male dentist did a bad job and was then de-registered. Women seem to be far better than the males at dentistry.
Women often did the most intricate work building a Spitfire to out perform the German planes. I raise a CHRISTMAS TOAST TO THE GOOD WOMEN in this world 
Patrick Turner.
I have recorded my BP pretty consistently this year and mine stays low during high mileage periods and comes up during lower mileage periods. The overall trend also appears to be up. I started low so it isn't terrible yet but I am concerned and will discuss with my doc on 12/23 next week.
This posting gives me some relief. My legs feel as if they're going to collapse under me and I'm having strange shooting sensations in my legs as well as in my back. In addition I feel lousy all over and tired and lacking in energy. I just want to sleep and even that's difficult. I've been off Xtandi for a few weeks now. I was diagnosed with advanced metastatic cancer a year and a half ago and today, for the first time, speaking to my son I cried - not heaving, sobbing crying but crying nevertheless. I feel badly for him.
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