My Dad's health has taken a serious turn and I'm wondering if anyone can offer up help.
My Dad has been doing fine (other than a rapidly rising PSA) however in the past week he has gotten extremely exhausted and his speech was slightly slurred. Once the latter happened we took him to get bloodwork. The doctor said his levels were all off (calcium high, potassium low, magnesium low, PSA doubled again in a month) and we needed to get him to an emergency room.
In the three days he has been in there although his numbers are coming back to normal cognitively he is still unbelievably off. To the point where the nurse said it seemed like he didn't know how to bend his knees to sit down. However when I just talked with him now he was much better.
They are taking him to get a head CT soon to check for metastases to the brain.
Does anyone have any ideas what this could be?
Backstory: diagnosed in sept 2019 PSA 182 (was 3 in dec 2018). Zytiga got PSA to 7. Stopped working in March PSA 30, started xtandi. PSA 70 just three days ago and blood work is all over the place.
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j5000
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Sad to hear your dad is in this condition, but glad to hear they're scanning his brain. It's an awful possibility that you want to diagnose as soon as possible, so that radiation or whatever can be started as soon as possible. And if that's ruled out, then maybe it's a side effect of Xtandi? Just guessing here.
You and your dad will be in my thoughts in what must be an unbelievably stressful time.
Thank you so much Tom. He was only on Xtandi for a short time and stopped taking it about 6 days ago. The brain CT scan was clear and fine. I talked to my Dad at one point and he was fine and a few hours later he seemed to not even know who I was. And the doctors don't seem to know what to do either. I hope you are doing well. I haven't had a chance to catch up on your blog but I love reading your writing. Thank you for sharing, commenting and showing your support.
The immediate cause of his altered mental status is most likely the electrolyte imbalance which Doctors are going to correct . Then comes the more important issue, why his electrolytes are so OFF and what can be done about his rising PSA.
I'm going to ask them if there is anything they can do to try and combat the PSA. It feel like a runaway train right now. I am ok if it is the end, I just wish they could get him cognitively consistent.
I will ask about the carotids. The scan came up clear but as OK as he was a few hours ago, when I talked to him now he was in a completely different, bad state. The doctors don't seem to know what to do either which is scary and frustrating.
Well now I guess I'll have to destroy my medical license....Go back to being a plumber.... they make more money anyway....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 05/04/2020 8:15 PM DST
Hope you get some answers soon. My father in law had a bladder infection and he was so disoriented and confused. It was scary After antibiotics and hydration he returned to normal.
He was confused more as the infection progressed. Finally the doctors did more tests and it was a simple bladder infection. After 36 hrs he was back to normal- grouchy and bossy 🤭😆
My 89 year old aunt had a UTI or possibly bladder/kidney: she was extremely confused and her speech was affected. My cousin said they took her to a doctor who ran tests and prescribed antibiotics in a hospital. She returned to normal behavior and cognition. I saw her about 6 months later and she was normal again.
She was treated for breast cancer and survived. The oncologist was called in who chased several leads. As in your case, 5to0, it was the simple diagnosis that was affecting her confusion and not other things.
I hate to bring sad news but at some point, there is an end to what can be done. The drug treatments ALL have serious side effects, and for an older person, this simply overloads the body's ability to handle these additional stresses on it.
I think at some point, the reality of his serious health has to be talked about and his final days made as comfortable as possible. to drag someone to the end by bombing them endlessly is cruel and fruitless, as there is NO ability to give him back 20 or 30 years, nor undo the damage he faces daily.
Please consider whether more treatments should be done. It is on easy task to have to deal with, and I am glad that you are there for him.
I had that happened to me, I had just gotten my Lupron shot and like 3 days later. Bam.......completey out of it, do not remember a thing.
I had a UTI and was very dehydrated now I carry around a big ole gulp cup. And I mix it with 50/50 of zero gator aid and a orange soda water... I drink that stuff all day now...hasn’t happened since then.
I will say a rosary for YOU and your father..may god hold you both in his almighty arm..at this time
My husband woke up one morning and I thought he was having a stroke. Couldn’t see out of one eye, speech slurred and words were not real words. They did an MRI which led them to believe that bone metastasis in the skull were growing and applying pressure to the brain. Unfortunately, even after 10 whole brain radiation treatments his bone marrow never recovered from the previous Radium 223 treatments or the cancer had invaded the bone marrow and he passed away in March. I am hoping for the best for your dad.
Its very nice to hear from you . In end stage we all will succumb to gods mercy ... I’m soon to be 59? My wife two years my junior . My wish for you and she is a happy healthy life lived with joy . Grieve and grieve some more . All the time knowing that there is no more suffering after leaving this planet . I believe this .. No matter what our beliefs are ,I pray for mercy on us all . Please stay healthy and love life . You are hear for a reason .. . Take care .... Scott
Oh that was so sweet, thank you so much! My husband was in denial until the end so we were never able to talk about what he wanted for me . Then there is the survivor’s guilt. Thank you for telling me what I think my husband would have liked to say but was unable. You and your wife live each day to its fullest and appreciate each other. She sounds like a very lucky lady to have you - the best to you both!
She married me in terrible condition . We’ve had five years of turmoil. But the light of love shines everyday . We came to an epiphany a few days ago . Dropped a lot of the bad baggage from recent years past .. to live in appreciation of the simple life is our great lesson . Most men ,especially over a certain age were raised or taught to be tuff and stoic . My father was like this . Never saw him cry or complain . He had APC also . If we can conveniently re-write our past and drop all of the bad memories and cherish the great moments then we can move on . My mother at 93 has done so . At first I thought ,she is senile because she is . On the other hand she’s coping with a life wrought with emotional sickness and mental illness. She now says life was perfect . We don’t have to go that far . Life is suffering and joy . I hope that you have much love in your life . 🙏
j5000, I feel for you and dad. I also have experience cognitive issues the past couple of years but nothing like your dad has. I've been on Lupron since 2013, on 2015 I switched to estradiol patches and stayed on them until March 2019 when , once again I went back to Lupron. Up to tat time, I had no major cognitive issues. But the year of 2019 is pretty much a blur in my brain and much of what happened has been erased from my memory,
In December I started Zytiga and Prednisone and kept Lupron. In January of this year I went through a treatment of Provenge. and today, my memory has improved but is not back to what it should be. Brain scans and much lab work failed to reveal any obvious problem to the various neurologists and doctors.
Keeping Loving your dad and talking with him. Best Meds he could have. 3 years now on Lupron and it casues Brain Fog for me. I have had serous lapes at times. My cortisol was out of wack last August. Prednisone also causes me serious gaps in my memory.
Best Medicine is let him know you Love Him. Terrible disease to fight alone. Hugs and Love to you and your Dad.
Having Xtandi right after Zytiga stops working is never recommended here in Australia and where an RP is impossible, and there are many mets, ADT is used, maybe with Docetaxel added after Psa rises when ADT begins fail, then Zytiga *or* Xtandi added to ADT and when either of these begin to fail its time for chemo, and if that fails, a man can get Lu177.
I've been through all that, but tried to say very fit for last 10 years since diagnosis in 2009, and I cycle 200km a week at age 73.
Your dad's symptoms indicate he may have mets in his brain, but you say CT scans were clear. But CT scans may not show as much as a more sensitive PsMa Ga PET / CT scan. I have had about 6 so far, since 2016, when first mets were seen about 2 years before any mets would been seen in any CT scan. I have had no mets yet seen in any organs, but I had countless mets in lymph nodes and bones. I had 4 shots of Lu177 after chemo failed and Psa went from 25 to 0.32 nadir. Followup PsMa scan showed healing at bone mets sites and no lymph node mets, but Psa is no again rising, so I still have to fight on. Blood tests have always remained fairly normal, so I am just just lucky.
Your dad's blood tests would be difficult for doctors to find out why and figure out a diagnosis. The body is complex. Docs can only go by scans most of the time for assessing cancer status. To be frank, your dad seems to have intermittent dementia where his mental function fades and comes back, and we would all wish he has a constant clear mind function.
I had a good response with Lu177, and may need more soon.
I have remained very fit during last 10 years of survival after diagnosis by cycling about 200km a week regularly, and I am now nearly 73. If my mind suffered, much of what I do would be impossible but I just don't know if riding a bicycle a lot has stopped my Pca getting a lot worse than it may have without cycling.
Anyway, I can only suggest your dad have a PsMa scan. It may show many mets, but they may be treatable by Lu177, and if he had chemo, I think it may make his condition worse, because it can affect brain function. My chemo did not damage my brain, but other ppl have found it dulls them down. I used to cycle 17km to get my chemo each 3rd week it, and I cycled every day of the chemo 3 week time cycle, and maybe that helped me avoid brain fading. Trouble was that chemo didn't reduce Psa, and more mets were seen in PsMa scans as chemo went on.
External Beam radiation with powerful X-rays ( EBRT or IMRT ) might help, but when given to a brain the side effect results could be alarming for all. Such EBRT and IMRT did little to reduce my Pca in prostate gland when used before 2016.
Not knowing what way good treatment could proceed is a major worry.
So for now, you have to stay calm, and care for your dad the best you can, and hope for best.
Thank you for the reply. They checked bladder and are pumping him with fluids. He seems to be a bit improved now, so just hoping that it sticks and that it just took time for everything to regulate.
Been in communication with docs and nurses. Doctors are perplexed as to why. They are trying different things but came to the forum to get any more suggestions.
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