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First post, need guidance.

User
Posted 29 Jan 2020 at 01:49

Hello there all, 

My dad was diagnosed a few years ago with stage 4 prostate cancer G3 for the last five years he was doing really well, the cancer was located in the pelvis bone and prostate, but it didn't spread until last year 2019, he was put on Zytiga, but he didn't like the way it made him feel so he stopped taking it, started drinking and looking for a natural way to cure himself.

Seven months later he could no longer walk without being in pain, turns out the cancer had spread to his legs and spine. He was sent home and then in Jan 1 he was admitted to the hospital for pain, turns out his bones had deteriorated and were on the verge of breaking, they told him they needed to go in and put rods in his knee and along his femur so they wouldn't break, he denied it so they sent him home with pain meds. 

10 days later he had to go to the hospital again because he couldn't take the pain, and turned out his femur broke so they did an emergency surgery. Know he's home and I have no idea how to help, I don't really know what's wrong with him, i've been gone for 1year and 7 months everything I know his just bits and pieces. 

He still gets hungry but only eats a little bit. 

I also live in the U.S so I'm not to sure if things are similiar

Edited by member 21 Jul 2020 at 23:35  | Reason: Not specified

User
Posted 29 Jan 2020 at 08:41
He needs to listen to medical advice and take his medication
User
Posted 29 Jan 2020 at 08:58

Where does he live, UK or US?

If UK, it sounds like you need to contact his GP or oncology service (maybe a Clinical Nurse Specialist there) to find out his state. If they think he's near the end (reducing food intake can suggest this, but too little info - that could be loads of other things too), engage hospice care (they can probably do that for you).

User
Posted 29 Jan 2020 at 13:27

Thank you all for the replies, 

I was a bit nervous posting yesterday, but not so much today. 

A little more information I have is the following, he's 51 yrs old, stage 4 G9, it's in his bones and has spread down his legs and lower parts of his spine, all in the past 8-10 months. It's been very painful for him. Since his last hospital stay we know it's not in any of his organs, but that could change, he has a Dr. appt next Wednesday, I'll be asking for a copy of his medical records (fingers crossed they'll give them to me)  

He is a strong man and was trying to do it his way and now he's in a bad spot because of those decisions. 

He's in bed all day can get around with out help.

He still has appetite here and there, usually early in the morning and late at night but doesn't eat a whole lot. He still drinks plenty of liquid, urinates often but has to concentrate, doesn't have regular bowel movements, so my aunt gives him enemas. 

His memory isn't horrible but (and maybe it was the drugs) doesn't remember a whole lot of what the Dr. told him in the hospital. 

Pain meds are liquid morphine (which he doesn't take unless he feels he really needs to, Dr. said he was one sip away from dying at one point.) and Fentanyl patches 100mcg/hr

he's also taking Zytiga which thanks to Heenan73 I now know is a hormone therapy. 

He's also going to a clinic and getting a VitaminC IV, I'm not so sure that's a good idea, but it gets him out of the house for a good 2hrs, and i'm not going to argue with him. *hasn't told his Dr.

The leg he had surgery on is still swollen but it's only been about ten days since his surgery, today he has a physical therapist coming by. He's stubborn which is good because he had the will to walk

From the hip down his bones are eaten away, but the nurse said from the hip up he looked good. *what i know form my aunt*

 

He's been getting depressed lately and doesn't like being alone at all. I moved back to the states from South Korea a week ago to help him in whatever way, didn't realize how hard it was going to be watch the person who lives life to the fullest with no dependence on anyone be so weak and vulnerable. Also brought along my two year old. 

 

Edited by member 21 Jul 2020 at 23:38  | Reason: Not specified

User
Posted 29 Jan 2020 at 20:27

This isn't an area I know much about but from what I've read many men have had their full range of hormone treatment at your dads stage.  However as he hasn't there could be more scope than usual to try other treatments - other hormones and even a bit of radiotheraphy for pain reduction although it sounds a bit advanced for that.  He might feel better with other hormones but if he can he should try to last as long as he can with each one.

I don't know what happens if they shrink widespread mets with hormones. Does it weaken the bones more.  Also vitamin D sufficiency is sometimes said to give some small help  for bone strengthening.   Someone else might advise better on these.

I felt sorry when I read it so thought I'd see if I could offer some more thoughts.

Edited by member 29 Jan 2020 at 20:29  | Reason: Not specified

User
Posted 29 Jan 2020 at 21:31

I'll be asking for a copy of his medical records (fingers crossed they'll give them to me)

Generally speaking, they just need dad's permission - unlikely to give you copies against his wishes though.

Edited by member 29 Jan 2020 at 21:32  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jan 2020 at 22:04

You normally have to ask PALS for medical records, filling in a form they provide. They will ensure that if you are asking for records for someone else, their permission is given.

The consultants and other clinicians are not normally able to do this (except perhaps anything related to that one consultation, such as a blood test result).

User
Posted 29 Jan 2020 at 22:10

Received hard copies of all medical records from 2013 to now. What should i look for?

User
Posted 30 Jan 2020 at 15:28

I'd be looking through his appointments and when he first saw anyone related to the prostate although people often go for another reason then the GP decides it might be prostate related.

PSA tests, their dates and level of psa at each one.

Biopsy and Gleason Score  e.g. 4+4 Gleason 8, dates.

Scans and results, dates.

Treatment related to prostate and any comments about recommendations and the patients replies.  Dates.

 

You can also ring the nurses on Prostate Cancer UK for advice.

 
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