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Psa and abiraterone

User
Posted 16 Mar 2019 at 14:30

Hi, dads been on abiraterone the last 7 weeks. His psa has gone up substantially from before he started them although it was already rising. It is now at 144. He is in a lot of pain. Wondering what's next?

Miffy
User
Posted 16 Mar 2019 at 20:40
They might suggest trying chemo again although they will be concerned that he didn’t tolerate it well last time. They might suggest 6 sessions of Radium 223 for the bone mets, if those are causing him any problems.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Mar 2019 at 22:13

We haven’t had Abi, John is on Enza, but we have been told that he will only get a low dose steroid or a trial if he meets the criteria at the time. At one time cabazitaxel was mentioned but after doxataxel they dropped that idea.

We did have Radium 223, PSA went up all the way through as it doesn't affect it, it was not effective for John sadly but was tolerated well.

good luck with whatever they suggest

love Devonmaid xxx 

Edited by member 28 May 2019 at 18:42  | Reason: Not specified

User
Posted 17 Mar 2019 at 20:15

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. 

Miffy
User
Posted 17 Mar 2019 at 20:45
When is his next appointment with the oncologist?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Mar 2019 at 20:53

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. 

Miffy
User
Posted 08 May 2019 at 10:52

Hi Miffy,

Did they end up changing his medication? My dad has been on abiraterone for 3 weeks and his PSA has risen from 40 to 160 since starting. Next onco appointment is in two weeks so hopefully we will have a clear idea then.

User
Posted 08 May 2019 at 11:47

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. 

Miffy
User
Posted 08 May 2019 at 12:03

Hi Miffy,

Thanks for the update. I am sorry to hear that everything is still up in the air for you. I guess that's what I struggle with the most, not being told all the information and then not knowing what to expect. Dad is also in a lot of pain and our GP is helping us with morphine dosage but some days are tolerable and others he won't get out of bed. Best of luck with Hospice and I will let you know how the next onco appointment goes.

Sending positive vibes your way!

Kate

User
Posted 08 May 2019 at 12:49

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.

Miffy
User
Posted 27 May 2019 at 20:46

Hi Miffy,

Hope you are well. I'm sorry to read about your dad's MSCC, how did the radiotherapy go? Dad saw oncologist last week. His PSA is still rising so they think the Abiraterone is not working but want to wait another 6 weeks until they rule it out. He can't go on Xtandi next because he has had a seizure before so the risks are too high but they mentioned the possibility of trying Lutetium (but aren't too hopeful on that either). His pain is worse and even the littlest of things adds to the pain and tires him out. He's only 58 and they've asked us to reach out to Hospice to get involved more. 

Best wishes to your dad.

Kate

User
Posted 27 May 2019 at 22:05

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. 

Miffy
User
Posted 11 Jun 2019 at 22:51

Hi miffy how is your dad doing now 

User
Posted 12 Jun 2019 at 17:30

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. 

 

Miffy
User
Posted 18 Jun 2019 at 21:03

Hi Miffy

is there any update on your dad? Hope he is still Ok.

lots of love 

Devonmaid xxxx

 

User
Posted 19 Jun 2019 at 10:46

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

Miffy
User
Posted 24 Jul 2019 at 21:36

Hi Miffy, how is your dad doing?

User
Posted 25 Jul 2019 at 10:55
Dear Miffy,

Hope your Dad feel better soon.

Good wishes from me ....

Regards,

Bose

User
Posted 26 Aug 2019 at 07:35

My daddy passed away on tuesday. I am broken. 

Miffy
User
Posted 26 Aug 2019 at 07:47
So sorry Miffy27 and so young. My Dad seemed to young at 69 so I can't comprehend how it must feel for you.
User
Posted 26 Aug 2019 at 08:02

I'm so sorry to hear Miffy, absolutely heartbroken for you. Condolences to you and your family xx

User
Posted 26 Aug 2019 at 08:36

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

 

Ido4

User
Posted 26 Aug 2019 at 08:38

I am so very sorry to hear your sad news. Thinking of you💔. It is so hard when you lose someone you loved so much.

User
Posted 26 Aug 2019 at 09:39
So sorry to hear this. Take care.
User
Posted 26 Aug 2019 at 16:29
Miffy, I’m so, so sorry.

Take care of your self.

Dave

User
Posted 26 Aug 2019 at 19:41

I am so sorry for your loss xxxx

User
Posted 26 Aug 2019 at 19:59

So sorry to read of your fathers passing, my thoughts are with you and your family.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 26 Aug 2019 at 22:13
So sad. Take care of yourself.
User
Posted 26 Aug 2019 at 23:02

Miffy

So sorry to hear of your loss, please accept my condolences. Thanks Chris

User
Posted 27 Aug 2019 at 10:18

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

 

User
Posted 27 Aug 2019 at 11:15

So sorry to read this Miffy.  Take care x

User
Posted 27 Aug 2019 at 16:34
Miffy,

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.

Barry
User
Posted 27 Aug 2019 at 23:28
Oh Miffy, this is so sad. Dad must have been so proud to have you on his side, loving and caring for him. I wish you just a little more of the strength you have shown so far, enough to get through the coming days and weeks.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2019 at 13:17

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

User
Posted 31 Aug 2019 at 23:10

Oh Miffy

I'm so sorry to hear this awful news. Your dad isn’t suffering any more, I hope that comes as some comfort, I think it will be for us when the time comes. My heartfelt condolences. Take care of yourself if you can, this time is so hard. 

With love

Devonmaid xxxxx

User
Posted 20 Sep 2019 at 12:55

Thank you all for your kind words. People have wished us well but it's only on a forum like this where I feel like you can all relate. it's something affecting us all here in one way or another. I wish this wasnt the case. I'm the baby of the family and my first little one is nearly 3 months. It's been so bittersweet. He is missing out on a relationship with his granda and that is something I dont think I'll ever get over. Life can be cruel. Being pregnant and having a newborn when my daddy was so ill is something I look back on and think how on earth did I get through that. But I did. People say you find a strength from somewhere and you do but i think it's because you have no other choice. You have to be strong for those around you as they are for you. Family is very important. Be there for each other. Watching my poor daddy in his last few weeks and days will never leave my thoughts. So much pain. People who think this is one of the better cancers to get obviously dont realise how debilitating it can be. It took away everything from my daddy. I hope one day this disease can be destroyed the way it destroys the people who have it. 

Take care.

Miffy
 
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