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Enzalutamide advice

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User
Posted 08 May 2017 at 11:49
My dad was diagnosed just over a year ago with stage 4 m1b. Started with 3 monthly prostap injections,then 6 sessions of chemo,unfortunately within three months of finishing he's gone rapidly downhill,occupational health have brought mobility items in as he struggles to climb the stairs and walking is really hard now. After more scans and oncology appts we've now been told it's more aggressive than first thought and he has months left. However they are going to try enzalutamide as a last treatment due to start next week. He was told as it's an expensive drug they'll want to do bloods every 4 weeks to check if it's working,How quick should we expect it to work if it's going to?

Viv

Look for something positive in each day even if some days you have to look a little harder

User
Posted 11 May 2017 at 13:52

Hi Viv

It worked very quickly for me PSA of over 100 down to 3 and a bit within a month. Alk Phos also dramatically down. 6 months later still seems to be helping a lot.

Best wishes 

Martin

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
User
Posted 11 May 2017 at 14:04

I start enzo in two weeks and I have been told we would know within four weeks if it is likely to have an impact, as the entries above suggest. It looks like your Dad has a very agreesive cancer as the main treatments have had little impact. Have they talked about radium 223 which I understand, though I am no medic, works best when the cancer is active. Might be worth an ask.

If he is reaching end of life stage as the onco is suggesting, you will need to ensure he gets all the care he needs to help you and your family care for him. So think about Macmillan nurses or equivalent and hospice care. It is important to be prepared. Keep in touch with us on here many have been through this difficult time and are very supportive.

Fingers crossed for enzo.

User
Posted 12 May 2017 at 16:41

Hi Viv
By the time I started HT my psa was 235.
Two weeks later I started Enzalutamide as well. The psa (due to HT) was by now 40
After another 4-6 weeks my psa had dropped to below 0.1 and has stayed there for the last 26 months.
It could be either the Ht or the Enzalutamide or the combination that is controlling the cancer.
I like to think it's mainly the enzo

Good luck

Paul

User
Posted 12 May 2017 at 22:18
Hi Beebee its so hard to watch someone you love struggling isn't it! Hope Macmillan are involved with managing your dads pain as ours are really good,and have managed to get it just about right for him! You can see some days are hard when he sits quiet in a world of his own,

Viv x

Look for something positive in each day even if some days you have to look a little harder

Show Most Thanked Posts
User
Posted 08 May 2017 at 12:46

Viv,

Check my profile to see how quickly it worked for me.

David

User
Posted 08 May 2017 at 13:04
Thank you David,it worked well for you! Just really hoping this makes some difference as he's really struggling and the weight is dropping off him.
User
Posted 11 May 2017 at 13:52

Hi Viv

It worked very quickly for me PSA of over 100 down to 3 and a bit within a month. Alk Phos also dramatically down. 6 months later still seems to be helping a lot.

Best wishes 

Martin

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
User
Posted 11 May 2017 at 14:04

I start enzo in two weeks and I have been told we would know within four weeks if it is likely to have an impact, as the entries above suggest. It looks like your Dad has a very agreesive cancer as the main treatments have had little impact. Have they talked about radium 223 which I understand, though I am no medic, works best when the cancer is active. Might be worth an ask.

If he is reaching end of life stage as the onco is suggesting, you will need to ensure he gets all the care he needs to help you and your family care for him. So think about Macmillan nurses or equivalent and hospice care. It is important to be prepared. Keep in touch with us on here many have been through this difficult time and are very supportive.

Fingers crossed for enzo.

User
Posted 11 May 2017 at 17:46
Thank you yorkhull I really appreciate your reply. The one thing we forgot to ask was how quick it would impact. Macmillan are already involved and have been fantastic up to now,attendance allowance has also been rushed through for them! It certainly is very aggressive although it was definitely adenocarcinoma he was diagnosed with,I am going to the appointments too but this is definitely the last treatment as he's become too frail for anymore.

Kind regards viv

Look for something positive in each day even if some days you have to look a little harder

User
Posted 12 May 2017 at 16:41

Hi Viv
By the time I started HT my psa was 235.
Two weeks later I started Enzalutamide as well. The psa (due to HT) was by now 40
After another 4-6 weeks my psa had dropped to below 0.1 and has stayed there for the last 26 months.
It could be either the Ht or the Enzalutamide or the combination that is controlling the cancer.
I like to think it's mainly the enzo

Good luck

Paul

User
Posted 12 May 2017 at 19:02
That's great Paul! I'm hoping this will at least buy some time,as things not looking great psa is tripling every fortnight,and he's losing a lot of weight even though his appetite is good!

Viv

Look for something positive in each day even though some days you have to look a little harder

User
Posted 12 May 2017 at 21:02
My dad in similar position where he's on his 4th round of abbi but his PSA is rising slightly. The lowest it's been is 19 but he has castrative resistant cancer so I'm worried about our next appointment on 30th may as I'm thinking they may not give him anymore of his PSA has risen again. He is crippled with pain, has no appetite and we have just bought him an orthopaedic rise and recline chair to help him. I feel sick with worry!
User
Posted 12 May 2017 at 22:18
Hi Beebee its so hard to watch someone you love struggling isn't it! Hope Macmillan are involved with managing your dads pain as ours are really good,and have managed to get it just about right for him! You can see some days are hard when he sits quiet in a world of his own,

Viv x

Look for something positive in each day even if some days you have to look a little harder

User
Posted 06 Jun 2017 at 16:53
Hi all,just an update dad is now four weeks into taking enzalutamide. Had to have a week off it as it caused some problems with massive fatigue and cognitive issues,has now been back on a week at a lower dose and seems to be tolerating it much better,pain has decreased and psa has dropped down quite significantly however the alp has risen massively over the past three months and now stands at just below 2000!

Viv

Look for something positive in each day even if some days you have to look a little harder

 
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