Psa and abiraterone

How much longer will they let him take the abi before they decide to stop or change it? Surely his psa shouldn't be rising so quickly whilst on it? Hes got mets on his ribs which are causing pain although he cant pinpoint an exact area. His pain isn't managed very well at the minute either with nothing really easing it. Hes been sore ever since being hospitalised with pneumonia and hasn't really got any ease since. Numerous calls have been made to gp, Macmillan, cancer unit in hospital where he gets the abi from but theres no clarity as to where we are going from here. 

He hasnt got one yet although I'm assuming it'll be when hes due his next lot of abi. With the bank holiday the earliest we can ring is Tuesday so mum is going to phone then. 

Hi Kate, 

No he is still on the abiraterone. We aren't exactly sure what is going to happen. He's been on it from Jan and last we heard his psa was still rising. He has had psa tests done since then but we don't know the outcome as I don't think he wants to know himself. He is in a lot of pain at the minute with no amount of morphine helping. He got a call to say he could go into a hospice to give the medication a review and try to get something better suited for him as he is finding it difficult to move. So that's the next thing. But with regards to the abiraterone we don't know, he hasn't seen his oncologist in months she just keeps sending him for the tablets. Keep us posted about your dads experience on the tablets. 

Yes Kate it's very hard not knowing what the plan is. If there even is one. That's the way dad is too although this past few weeks he hasn't been able to be out of bed for long. Hes a very young 66 year old and was always used to being active and out and about. Makes things all the more difficult.

Best wishes for your dad.

Hi Kate,

He got the radiotherapy on the day the MRI showed the compression which was a week ago on Saturday past. He is still in so much pain, practically bed bound. Can only hope this is a flare after the treatment but it is severe. He's still in hospital waiting on a place in the hospice. He's getting oxycodone in the syringe driver and shortec every 4 hours. Neither seem to be touching the pain as he struggles to get out of bed just to go to the bathroom. 

With regards to the abiraterone they have ran out now he's in hospital so the oncology nurse was round to say don't worry about them, a break won't change anything and he's due an appointment with the oncologist on 3rd June when he may find out whether they want him kept on them or not. We dont know any recent psa results, not sure if any of us want to either. 

58 is so young for your dad to be suffering with all of this. I wish I could tell you that the hospice will be able to help a lot more but we haven't managed to get daddy in yet. The hospital keeps saying theres not much more they can do and that the hospice is really the right place for him for pain management but we are now into the 3rd week and still no sign of a place for him. Hopefully things move quicker for your dad. 

Take care. 

Hi, he is currently in Marie curie. Two weeks he has been there but they have been fantastic. He's still sore when moving so in bed most of the time. They fitted a catheter to save him having to make painful trips to the toilet which has been a relief for him. Their aim is to get him more mobile before getting him home. Five weeks in total now he's been away from home. His appetite is much better now though and the pain relief seems to be helping when he's at rest. 

They have been using ketamine in the driver and recently started dynastat a few days ago which seems to be helping. He also gets abstral before movement.

His pain is at its worst when he goes to the loo, we don't know why. It's in a bad area, lower back/sacrum so its proving hard to manage but they have made an improvement and seem to be doing so day by day. Abiraterone is still on hold until he's able to see the oncologist. 

Hi,

Dad is still in Marie curie with the aim of increasing mobility to get home. Pain is being managed quite well while he's in bed so they're working on trying to improve it when hes moving. Physio are trying to get him up and walking but its proving difficult. It's now been 6 weeks he's been in bed so I'm sure that doesnt help. He is really trying though and just wants to get home. X

Hope your Dad feel better soon.

Good wishes from me ....

Regards,

Bose

Sorry to hear that Miffy. My condolences to you and your family.

I am so sorry for your loss xxxx

So Sorry for your loss, thinking of you and your family x

Very sorry you have lost your Dad to this rotten disease. His journey, particularly towards the end was a trial for him and you will have have felt for him and indeed it will take time to come to terms with your loss. My condolences to family and friends.

Hi middy devastated to hear your update. My own dad was diagnosed at same time and isn’t doing well either . Thinking of you