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Radium 223 & spinal cord compression

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User
Posted 07 Jan 2020 at 00:33

Hello 

My dad had his 5th radium 223 injection and he presented a few days later with symptoms of spinal cord compression. 

 

He lost the ability to walk in the last few days.  He has to walk aided, or his legs give way.  He reports they feel numb but he can raise them and wiggle his toes. 
The hospital wanted an MRI scan but he struggles with those type of scans being claustrophobic, so we settled for CT scan instead to rule out spinal cord compression.  Although he may still have to have open Mri scan if he can get to a facility that does have an open mri. 

The doctors cannot decide what has made his legs go like this suddenly.  It could be metastatic deposits pushing on spinal cord, or effect of radium 223, or progression of his cancer.  He also has a urinary tract infection currently.  Could this be the cause?

We are concerned he may have ingested the radium 223, as he was not strict enough with the hand hygiene required after having this treatment. 

So is it possible ingested Radium 223 has caused his legs to give way, he has lost ability for them to take any weight. 

I am saddened to be told should he go into cardiac arrest at any point he will not be resuscitated and this is a medical decision  based on how weak his body is.  But he has a Strong will, and I want him to live as he is fine otherwise.  He even has a holiday booked in 6 weeks!!  He wants to go. 

Has anyone else had their legs give way suddenly and these types of symptoms.   Is it radium 223 ingested?, could it be spinal cord compression... the doctors don’t seem 100% sure this is causing it.   We get results of scan tomorrow. 

I am hoping he makes a miraculous recovery and walks out of hospital tomorrow.   He was walking fine 3 days ago. 

The Doctor also told me they would not expect him to live more than a year.  But then said he is not god so difficult to say.   

I read of a case where PSA was over 7000, the patent presented with spinal cord compression with paralysis of arms and legs but the sensation came back with treatment and he lived for 7 years.   

Any advice welcome and thanking everyone who does reply. 

 

 

User
Posted 07 Jan 2020 at 06:56
Best to wait for the scans rather than guessing about the cause of the leg weakness. But an isolated case where someone did well is not really indicative of your dad's outlook; that man may have been newly diagnosed and hormone naive whereas your dad has had all treatments available to him. The priority is to keep him as mobile and pain free as possible and to reduce the risk of any infection.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jan 2020 at 07:00
PS a serious UTI could make his legs weak but if he is DNR a serious UTI could also kill him.

I think that if there is anything you want to tell him, or conversations you need to have about his wishes and feelings it is better to do it now and then not have needed to rather than delay and live to regret it.

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

User
Posted 08 Jan 2020 at 22:24

I don't think your dad is being fobbed off. It seems that you are having some difficulty accepting how seriously ill your dad is, which is understandable but will not be good for either of you in the end. Your dad has lymphodema (fluid retention) which is an indicator of heart failure or organ failure. There is no treatment for it. The low albumin is probably due to liver failure, there is no treatment. The lymphodema and constipation are both indicators of advanced cancer progression. He can no longer empty his bladder naturally. The treatments that he has had have stopped working and there has been an agreement at the hospital that there will be no more treatment. The 'do not resuscitate' decision was probably discussed with him before it was made but perhaps he didn't want to talk to you about it.

Some men become very disabled by prostate cancer, bed ridden for months or long drawn out months and years of terrible pain, others need such a strong cocktail of drugs that they just sleep more and more and eventually slip away. But some men seem quite well and the end comes quite suddenly - my father in law's legs swelled up on the Thursday, they diagnosed lymphodema and organ failure on the Friday and he died on the Saturday afternoon. He had just bought a new tent and been camping in France for a month.

This is an awful situation for you and your family but please don't waste the coming weeks and months denying what is happening when you could be making memories and telling him all the things that are in your heart instead.

Edited by member 08 Jan 2020 at 22:27  | Reason: Not specified

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

User
Posted 09 Jan 2020 at 00:51
Aw MBS - if it is just the UTI then he may rally quickly and have his holiday. But low albumin isn't really about not having enough albumin so let's inject some into him; it is a sign that his body is failing (such as his liver and / or possibly his kidneys) and injecting him with more albumin won't make his liver or his legs work. It is a symptom rather than the cause. Does that make sense?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 07 Jan 2020 at 06:56
Best to wait for the scans rather than guessing about the cause of the leg weakness. But an isolated case where someone did well is not really indicative of your dad's outlook; that man may have been newly diagnosed and hormone naive whereas your dad has had all treatments available to him. The priority is to keep him as mobile and pain free as possible and to reduce the risk of any infection.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jan 2020 at 07:00
PS a serious UTI could make his legs weak but if he is DNR a serious UTI could also kill him.

I think that if there is anything you want to tell him, or conversations you need to have about his wishes and feelings it is better to do it now and then not have needed to rather than delay and live to regret it.

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

User
Posted 08 Jan 2020 at 12:37

Thank you for all the replies 

 

Sorry I have been in the hospital and lost track of all time and now In panic mode as his consultant told me my dad has 3-6 months at the most.  But they did not tell him that, just me as I wanted to ask. 


I don’t believe their prediction of 3 months is correct.  My dad has a strong will and he wants to live and feels fine apart from being unable to walk which is not due to spinal cord compression. Just lots of fluid in both legs and cannot open his bowels fully.  


I’m angry I asked for suppository 3 times and then had to watch my dad try to remove his own faeces with his fingers to open his bowels.  Still waiting for suppository I asked for 3 days ago.  They plan to give it today!

I have been offered no explanation as to why he can’t walk but he was fine a week ago.   They said it’s to do with general weakness of the legs due to all his treatments and steroids.  That’s  load of rubbish as he could ride a stationery bike even with his current legs. 

It’s not spinal cord compression according to CT scan.   But they said low albumin levels and enlarged lymph nodes in pelvic region and legs.  Excess fluid in the legs also.    But they can’t treat him?

He is being discharged today with bag attached for urine and nurse support at home.  

I’m confused why can’t he walk, I don’t understand why can’t his albumin levels be increased?  

I feel my dad is being fobbed off.  I’m not going to allow that to happen!!! 


I have looked into open mri scan of legs funded privately,  this might provide more details of why my dad can’t walk.  

Any advice welcome. 

 

 

 

User
Posted 08 Jan 2020 at 22:24

I don't think your dad is being fobbed off. It seems that you are having some difficulty accepting how seriously ill your dad is, which is understandable but will not be good for either of you in the end. Your dad has lymphodema (fluid retention) which is an indicator of heart failure or organ failure. There is no treatment for it. The low albumin is probably due to liver failure, there is no treatment. The lymphodema and constipation are both indicators of advanced cancer progression. He can no longer empty his bladder naturally. The treatments that he has had have stopped working and there has been an agreement at the hospital that there will be no more treatment. The 'do not resuscitate' decision was probably discussed with him before it was made but perhaps he didn't want to talk to you about it.

Some men become very disabled by prostate cancer, bed ridden for months or long drawn out months and years of terrible pain, others need such a strong cocktail of drugs that they just sleep more and more and eventually slip away. But some men seem quite well and the end comes quite suddenly - my father in law's legs swelled up on the Thursday, they diagnosed lymphodema and organ failure on the Friday and he died on the Saturday afternoon. He had just bought a new tent and been camping in France for a month.

This is an awful situation for you and your family but please don't waste the coming weeks and months denying what is happening when you could be making memories and telling him all the things that are in your heart instead.

Edited by member 08 Jan 2020 at 22:27  | Reason: Not specified

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

User
Posted 08 Jan 2020 at 23:53

Thank you for your reply.  They did not explain it like that to me or the family.

They have not mentioned organ failure at all, and we thought and still think why can't he have albumin infusion to make things better for his legs, there has to be something surely this is not how he will remain.

 

He only wants another 6 months of being able bodied to sort things out and go on one more last Holiday.  This has all happened so suddenly and the family are finding it hard to see him like this.  I will pray and hold onto hope that he gets just a little more time of good quality of life.

He still has that holiday booked ready to go.

 

 

User
Posted 09 Jan 2020 at 00:51
Aw MBS - if it is just the UTI then he may rally quickly and have his holiday. But low albumin isn't really about not having enough albumin so let's inject some into him; it is a sign that his body is failing (such as his liver and / or possibly his kidneys) and injecting him with more albumin won't make his liver or his legs work. It is a symptom rather than the cause. Does that make sense?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Jan 2020 at 06:29

Thank you for your reply I am so grateful. 

I just wish the doctors had explained it like that.  I have got more information from this forum than from his Doctors. 

I now finally understand, and can accept how bad things are.  

Thank you so much for your support 

 
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