Xtandi severe side effects, need help

[DDen]

Hi everyone. My Dad, 84 years old, has been battling prostate cancer, and about 9 months ago his oncologist put him on xtandi. We noticed a marked drop in his psa, but now, after very little side effects noticed, in the past 10 days, he has went from fully functional and walking to unable to stand up. We discussed with his oncologist who reccomended he stop taking xtandi. it has been 4 days since he stopped, and now, he cant even stand up, let alone walk.

Can anyone offer any insight on how long do the side effects last? I asked the oncologist about something I read regarding couda equina syndrome, and he said based on his experience and my Dad that it was highly unlikely...he prescribed physical therapy, but my Dad cant even muster enough strength in his legs to go to it ( we will set up home therapy)...this is having a devestating effect on his psuche, one day walking to being bed ridden...

any insight, info, opinion will be greatly appreciated and my prayers are with all of you.

Nick in Denver

[Hidden]

I'm not a doctor, but this may not have anything to do with Xtandi side effects. While that's certainly a possibility, he should also have the typical diagnostic tests done to find out what's going on and rule out other things. It's easy to over-rely on the PSA test, but it could be metastatic cancer that doesn't produce PSA. I would be looking at that closely. There are many other things to look at: CT scan, bone scan, possibly PET scan, blood work, etc. That's my opinion.

[DDen in reply to Hidden]

thanks Gregg57, wedid the bone scan, and went to the emergency room 2 days ago where they ran a slew of blood tests, in which they didnt find anything they said and referred us back to the oncologist and sent my Dad home....I am lost...

[Hidden in reply to DDen]

Seems like they should be able to diagnose this, doesn't make sense. Maybe you should get another opinion.

[Scruffybut1 in reply to DDen]

I assume it was the nuclear bone scan. Were all bones clear? I had around 40 bone mets fortunately treatment with chemo wiped out most but before being cleared I read all I could and asked questions. Spinal cord compression is what bothered Oncos and obviously me. Nerve damage or tumour growth can affect the legs. Please check it out. Good luck.

[Hidden in reply to Scruffybut1]

I'm asking the same question about the bones, particularly the legs. I had the same symptoms before diagnosis. I could barely get up and walking was very difficult, lots of pain. I had extensive mets in my legs, especially the femurs. They did an MRI to make sure there were no small fractures.

[Groenenbach in reply to DDen]

OMG that's happened to us - we are just as lost - and my husband is in terrible pain - we will go to the Dr's next week and I will reply - good night

[DDen in reply to Hidden]

We went to the emergency room, and after 2 MRI, they found a tumor, which they operated on immediately. I am so sad, I don't know, from the neurosurgeons' prognastics whether he can walk again or not.

[Ran2599dy]

We would need more information. What other drugs is he on, how long has he has PC and have they tested his testosterone? If so what are the testosterone results. Also, what was his starting PSA and what is it now?

[joeoconnell]

i became very constipated on that product and was unable to pass urine wound up with a catheter and kidney infection and was hospitalized. after being bed ridden for several days i had a very difficult time walking just a few steps. i was transferred to a rehab facility and got physical therapy for a couple of weeks and went home with a walker

[DDen in reply to joeoconnell]

God Bless you JoeoConnell, what did the rehab consist of, if I may ask?

[joeoconnell in reply to DDen]

lots of good food and 15 to 20 minutes a day of very light exercise, i was amazed at the difference it made

[EdMiller in reply to joeoconnell]

I take Xtandi and also am very constipated.

[joeoconnell in reply to EdMiller]

take laxatives + stool softeners, prune juice ... don't let it build up

[EdMiller in reply to joeoconnell]

Thanks Joe.

[Kelly41 in reply to EdMiller]

I have been on xtandi for a yr. & 1/2 . Had constipation at first & tried several things. Good old prune juice did the trick for me.

[MelaniePaul]

Hi. I would definitely ask the oncologist for all the scans he can possibly offer to see if and where the cancer has grown or is growing. And if your dad had no symptoms from the cancer before he was put on this drug, then, seriously, I would ask myself: Is it worth treating this cancer? Or would it be more important for him to enjoy his old age wwithout any more trouble to be put through?

Mel.

[cesanon]

It would seem to me that before you start doing things you need to diagnose what is causing it.

It would seem to me that the oncologist has either diagnosed it and found a reason, or he/she should have referred it out to a gerontologist or internist for a broader look at what is causing the problem.

If the oncologist believes they have diagnosed the problem, they should tell you and you should make sure you understand it... and they should set some expectations as to what the next step(s) are.

If they have no diagnosis, they should tell you that as well. And should recommend what kind of specialist should be doing the diagnosis.

Nothing good will come out of your attempts to diagnose or posting incomplete information on the internets and hoping unqualified strangers with incomplete information will help.

Take some action that involves a doctor.

[Ran2599dy in reply to cesanon]

A little HARSH

[cesanon in reply to Ran2599dy]

I guess your right. But something serious is happening... and he needs to take effective action... now. Either there is some very poor communication going on with the oncologist which needs immediate correction, or he needs to bring someone with a wider scope to view.

The American health care system helps those who help themselves. If he waits until the next scheduled office visit with the oncologist it may be too late.

[Hidden in reply to cesanon]

Yes it's harsh, but necessary. When the cancer is this aggressive, you really have to jump on it, and do it now. The cancer doesn't rest so you neither can you. Moving too slowly was a mistake I made when I was first having symptoms. I kind of blew it off for a while, but things were getting out of control fast and I could tell. If you don't have someone who knows what's going on, you have to cut your losses and do it now. That's the reality of the situation unfortunately.

[Albionmoonlight in reply to cesanon]

You should be ashamed of yourself. People come here to share their stories, to exchange information and ideas, and to get help and support. I think everyone here understands that they won't get expert medical advice. Why you would post such a diatribe is beyond me. If that's the way you feel about people who come to this site for help, why are you even here?

[cesanon in reply to Albionmoonlight]

This is a life and death issue. It required immediate action.

With respect to the results of emotion dominated healthcare decision making see generally:

quackwatch.org/

The problem in the question needed prompt and immediate reaching out to qualified medical personnel.... not the "internets" or feckless advice by well meaning onlookers.

If somehow I prompted that call a few days or weeks earlier than otherwise I did well. What did you do?

[cesanon in reply to Albionmoonlight]

Oh look "Update....We went to the emergency room, and after 2 MRI, they found a tumor, which they operated on immediately. "

Maybe it was my comment that prompted this action earlier than it otherwise would have happened? In any event it was certainly spot on. Wasn't it?

Go back and read my polite but firm comment. Then compare it with yours starting with "You should be ashamed of yourself...".

Which of these constitutes an emotional diatribe?

Don't fall over yourself apologizing.

[Dan59]

I am hoping he gets some relief from whatever it is causing this problem, others have mentioned scans and this is a likely next step to find out what the problem is. I wish you the best

sincerely , Dan

[Magnus1964]

Did his doctor prescribe prednisone along with the xtandi? If not that could be the cause of your father's problem.

[DDen in reply to Magnus1964]

Hi Magnus1964, I just checked and no, he has not and never has taken prednisone....I dont want to question the oncologist but I will try to ask him regarding this.

[Magnus1964 in reply to DDen]

Don't be afraid to talk to the doctor. Be the advocate for your father. Doctors are not gods. I have fired a couple of doctors while traveling this journey. Xtandi takes a lot out of you and if you don't take prednisone to replaces natural elements your going to have a problem.

[rococo in reply to Magnus1964]

Are you sure. I though prednisone was taken with zytiga and not extandi.

[Magnus1964 in reply to rococo]

It is prescribed for both. I have been on trials for both and giving prednisone in both studies.

[pmichael in reply to Magnus1964]

Magnus 1964, Prednisone is prescribed along with Zytiga not with Xtandi. pmichael

[Magnus1964 in reply to pmichael]

I stand corrected. Prednisone is NOT prescribed with xtandi.

[Hidden]

Sounds like a reaction to Statins. When they gave me a Statin my legs gave out the next day.

[Pennysue1]

My husband quit taking xtandi after 2 months-after he got dizzy & fell-stayed Constipated-wasn't working anyway

Maybe after xtandi gets out of your father's system he will be better

Prayers- drink plenty of liquids

[Slmhc in reply to Pennysue1]

how long did it take for your husband dizziness to resolve, my dad had a fall, dizziness and hallucinations, has been like this now for 9 weeks, despite stopping enzalutamide

[rococo]

We are all taken abacked by this. Sometimes these things that aren't progressive and come out of nowhere resolve themselves just as fast. Please keep us informed. Rocco

[Kostast]

DDen My father 88 died 2 weeks after stopping Xtandi. Xtandi made him weak and then stopped working after 6 or 7 months. When he stopped he went downhill and died.

[DDen]

Update....We went to the emergency room, and after 2 MRI, they found a tumor, which they operated on immediately. I am so sad, I don't know, from the neurosurgeons' prognastics whether he can walk again or not.

[ctarleton in reply to DDen]

Thanks for the update, DDen. Sorry it took so long before they found something. Sorry he had to go through the additional trauma of the surgery. It is so very sad. And very stressful still, as things go on from here.

Remember, you have every right to have your own copy of the MRI Reports and a copy of the scans if you need them. Same goes for the Surgical Report, and the Pathology Report of all tissues surgically removed. Folks here can help if you have any top level questions about reading them, and/or can point you in directions to have professional Second Opinions about the findings in greater detail, and their recommendations, if needed.

The hospital should have more resources available for you to engage with now, whether he stays there for a while longer, or moves toward a discharge to a recovery facility & physical/occupational therapy, etc. This is a good time to engage with them, build an even larger care team, and strengthen the support framework, whatever the next steps in his/your journey will be.

Charles

[DDen in reply to ctarleton]

I am really worried and concerned. The neurosurgeon said he didnt biopsy because he 'knew' it was from his prostate cancer metastisizing...is this even logical?

[ctarleton in reply to DDen]

Whether any of the resected tissue went to a pathologist for analysis, or all of it perhaps went to medical waste disposal, it may not make much difference in systemic prostate cancer treatment plan, or the recovery and rehabilitation outlook. Do get a copy of the Surgical Report, to back-up what anybody thought was said by somebody else after the surgery. The details in there can apply to the prognosis for future improvements to mobility, and nerve involvements. Do press for some formal planning of the recovery stage, a possible discharge to a skilled nursing care facility or home, and any prescribed physical/occupational therapy. A Hospitalist, the attending Physician and/or a Discharge staff person are the people to be engaging with now, in addition to the day & night floor nursing staff.

[Kostast in reply to DDen]

Where was the tumor at?

[DDen in reply to Kostast]

they said T11....I dont understand MRI, why they didnt see it before...they say they saw it when they did a thoractic mri, but isnt that higher? his incisions are mid back...I am so confused and leery and worried....

[YOUYOURHEALTHBOSS in reply to DDen]

So sorry, DDen. Would you please share a n update on your daddy's stats & what meds helped or did not help him? Thank you

[Olivia007]

How is your father? My dad 82 has been on xtandi for 3 months and he has the same exacts issues as your dad? I told him to stop xtandi and we are waiting to see if his if he will be better. His doctor thought it was orthostatic hypertension which is mind boggling and ridiculous. How is your dad today?