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Dad - advanced prostrate cancer. Drug question

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User
Posted 03 Feb 2017 at 14:43
Hi,

My dad was diagnosed with metastatic prostrate cancer last August and was offered hormone therapy as it had spread everywhere and it was about "control not cure". He had been great until December - he's retired and was playing golf a few times a week but then was admitted into hospital over Xmas with spinal cord compression. Since then he has been in a lot of pain, is on morphine and has limited mobility in his left hand. He's still mobile but his appetite has gone after finishing course of steroids. We had a meeting on tues with his oncologist who advised his PSA had risen and that meant the hormone treatments were not working anymore. He offered chemo but my dad said he doesn't want to be sick and not see his grandkids for fear of infections etc. They then offered abiraterone zytiga and my question is, have any of you used this and what were the side effects like? And most importantly, did it work?

Thanks

Bee

User
Posted 03 Feb 2017 at 20:09
Hi

I was diagnosed 4 years ago with considerable spread to the bones like Kev I went straight on to chemo 9 cycles and found it very doable

I then had two years of Abbi and my PSA remained at undetectable with no side effects to mention

What ever you dad chooses I wish him the best of luck

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 03 Feb 2017 at 21:40

Hi my OH had 6 sessions of chemo with very few side effects ,a few muscle aches and tiredness but managed to carry on working through out ,he's PSA came down to 0.001 quite quickly .hes now on abi and Enzo on the stampede trial and again muscle aches and tired ness is the main side effects .we still manage holidays. And a good social life and Gary has continued to work throughout all treatments .as others have said maybe give the chemo a try and if the side effects are hard to take then stop. Good luck in which ever your dad chooses
Debby

User
Posted 03 Feb 2017 at 21:54

Originally Posted by: Online Community Member
I am running a 66 mile race this weekend so these things can work!.

Bee - don't worry, Dad doesn't have to run 66 miles, that's our Kev, he's unique, totally barking! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

You, me and Dad can have a pint down the Pub and Kev will join us after his run.

Seriously, anything you can do to encourage your Dad to increase his mobility is so worth while doing. Slowly, slowly, catchy monkey. There's lots of exercises that can be done just sitting in a chair. Little by little his range will hopefully extend and his morale with it.

Give him all your loving encouragement and hopefully his morale will improve.

Best wishes.

David

PS. I'm buying when we meet in the Pub.

User
Posted 03 Feb 2017 at 22:08
Hi Bee Bee,

Trevor has been on Abbiraterone for over a year know we have just added Raduim 223 as well he had a real downturn over Xmas but is well and truly back with a bang .

To check out everyone's profile just click on there avatar and you can read our individual journeys.

Trevor was diagnosed in May 2013 with a PSA of 13000 , multiple bone mets over his whole torso , asthma , previous heart attacks he has had since his pca diagnosis pneumonia and a stroke ! and yet yesterday he was carrying in a new door from B&Q .

My advise is never ever give up hope .

This is such an unpredictable disease no two men are the same , if your dad will read some of these posts then show him because it is not over until the fat lady sings.

Trevor's energy levels have been up and down but at the moment he is on an up and tomorrow well we will worry about tomorrow when it comes.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Feb 2017 at 22:27

Excellent advice from Rosy.

If you want a little more information on what chemo can be like have a look here:

http://community.prostatecanceruk.org/posts/t12197-Docetaxel-Chemo---the-highs-and-the-lows#post152202

Show Most Thanked Posts
User
Posted 03 Feb 2017 at 15:50
Hi , I am sorry to hear about your Dads current situation.

Whilst we are all different I hope to reassure you in two counts. My cancer has spread to my lymphs around my body but not to my bones.t4n1m1a PSA on diagnosis 342.

I had docetaxl chemo and had few real side effects , I was never sick and only felt ill for a couple of day so over the whole 18 week cycle. I still ran and got out so please don't dismiss it as something that will spoil your dads quality of life as it may not.

I am currently on abirarterone, and have been on it for 12 months, it reduced my PSA to 0.17 and has stayed there for the last two tests. I have had little side effects from this too, perhaps slightly achey muscles/joints but I say perhaps as it may be the running I am still doing ( I am running a 66 mile race this weekend so these things can work!).

As I said at the start everyone is different, I do not see a downside of having a go with docetaxl as if your dad tolerates it like I did it will not affect him much and extend his time, he can always stop after the first cycle. After that go for Abirateone if that's what the docs are offering as again it may work well.

Hope this helps.

Kev

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 03 Feb 2017 at 16:31

Hello Beebee and welcome to the site.

I can't help with your question but others, like Irun, can so hang in there until they come along.

The nurses on here are very helpful too, should you want information more quickly than us lot can supply.

Take care

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 03 Feb 2017 at 20:01
ThNks for your reply Kev! 66 miles? That's amazing - I'm over the moon because I've ran 10 so far this month!
User
Posted 03 Feb 2017 at 20:02
Thanks Sandra xx
User
Posted 03 Feb 2017 at 20:09
Hi

I was diagnosed 4 years ago with considerable spread to the bones like Kev I went straight on to chemo 9 cycles and found it very doable

I then had two years of Abbi and my PSA remained at undetectable with no side effects to mention

What ever you dad chooses I wish him the best of luck

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 03 Feb 2017 at 20:28

Hi BeeBee

So sorry about your dad - must be a frightening time for all of you.

My OH has castrate resistant PCa with multiple bone mets so is in a similar situation. He had 6 cycles of chemo and didn't find it particularly problematic. There were just a few days in each 3-week cycle when he just didn't want to do anything because he felt so tired and ill but other than that he kept cycling, socialising, seeing the grandchildren and working throughout (self-employed so that made it easier).

His onco has now suggested that he tries Radium 223 to attack the bone mets and, hopefully, minimise pain, plus he's on dexamethasone to treat the cancer in general. Abi and Enzo might be used further down the line - either sequence is an option apparently.

Good luck. Let us know how you get on.

Cheers

Eleanor

User
Posted 03 Feb 2017 at 20:28
Thanks for your reply and am glad you are doing so well 💪💪
User
Posted 03 Feb 2017 at 20:33
Thanks Eleanor - that's reassuring to hear. My dad has turned into a recluse and is exhausted by even hospital visits. After the spinal cord compression, although thankfully mobile, it's completely changed him. I think he feels he's already exhausted and doesn't want to make it worse xx
User
Posted 03 Feb 2017 at 21:30

Sounds as if, understandably, depression is adding to the stress in your dad's case. Must be so tough to feel ill and exhausted all the time, and to feel that there's no other option. Is he eating well or is that part of the problem too? 

Would be worth talking all this through with one of the specialist nurses on this site to find out the pros and cons of chemo / no chemo, abi or enzo, or Radium 223 in your dad's case. Outcomes can't be predicted of course but it might help if your dad knew what all the options were, and, as importantly, that he has options. There are people posting on this site who have been in a similar situation to your dad and then been helped to find a treatment that works for them.

Do hope that's the case with your dad.

Take care.

Eleanor

x

User
Posted 03 Feb 2017 at 21:38
His appetite was waning before the spinal cord compression then he was on steroids during radiotherapy which of course boosted it up again but he's lost 10 pounds. He only has a small breakfast and dinner and this was a man with a HUGE appetite. He's in a lot of denial and keeps saying how great he feels but he's in so much pain, is really pale and is reluctant to leave the house. He seems to have March in mind to feel better, be back playing golf and getting back into the swing of things. Xx
User
Posted 03 Feb 2017 at 21:40

Hi my OH had 6 sessions of chemo with very few side effects ,a few muscle aches and tiredness but managed to carry on working through out ,he's PSA came down to 0.001 quite quickly .hes now on abi and Enzo on the stampede trial and again muscle aches and tired ness is the main side effects .we still manage holidays. And a good social life and Gary has continued to work throughout all treatments .as others have said maybe give the chemo a try and if the side effects are hard to take then stop. Good luck in which ever your dad chooses
Debby

User
Posted 03 Feb 2017 at 21:43
Thanks Debby! That's good news! I've told my dad that not everybody reacts badly to chemo but he's been adamant from the beginning. I'm definitely going to push for the abbi xx
User
Posted 03 Feb 2017 at 21:46

Maybe ask the GP for some drink supplements - my OH has a permanent supply of Ensure strawberry flavour in the fridge and has developed quite a taste for them. Even if he doesn't feel like eating much, one or two of those helps to keep him on an even keel. He had lost around a stone (and he started off slim so it really noticed) but has got back to more or less his usual weight since having the supplement as a back up.

Cheers

Eleanor

x

User
Posted 03 Feb 2017 at 21:50
Thank you Eleanor - that's a great idea. We've all been left adrift a little since diagnosis. We're waiting for a palliative nurse to be assigned to us and info like yours really helps xx
User
Posted 03 Feb 2017 at 21:54

Originally Posted by: Online Community Member
I am running a 66 mile race this weekend so these things can work!.

Bee - don't worry, Dad doesn't have to run 66 miles, that's our Kev, he's unique, totally barking! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

You, me and Dad can have a pint down the Pub and Kev will join us after his run.

Seriously, anything you can do to encourage your Dad to increase his mobility is so worth while doing. Slowly, slowly, catchy monkey. There's lots of exercises that can be done just sitting in a chair. Little by little his range will hopefully extend and his morale with it.

Give him all your loving encouragement and hopefully his morale will improve.

Best wishes.

David

PS. I'm buying when we meet in the Pub.

User
Posted 03 Feb 2017 at 21:58
Haha I'll hold you to that 😂

Dad has been trying to do chair exercises nd I told that every Monday on my day off, we are going to stretch his legs with short walks. Drive to a nice park and get some winter sun on his face. He's reluctant but I think it's important too! X

User
Posted 03 Feb 2017 at 21:59
Haha I'll hold you to that 😂

Dad has been trying to do chair exercises nd I told that every Monday on my day off, we are going to stretch his legs with short walks. Drive to a nice park and get some winter sun on his face. He's reluctant but I think it's important too! X

User
Posted 03 Feb 2017 at 22:08
Hi Bee Bee,

Trevor has been on Abbiraterone for over a year know we have just added Raduim 223 as well he had a real downturn over Xmas but is well and truly back with a bang .

To check out everyone's profile just click on there avatar and you can read our individual journeys.

Trevor was diagnosed in May 2013 with a PSA of 13000 , multiple bone mets over his whole torso , asthma , previous heart attacks he has had since his pca diagnosis pneumonia and a stroke ! and yet yesterday he was carrying in a new door from B&Q .

My advise is never ever give up hope .

This is such an unpredictable disease no two men are the same , if your dad will read some of these posts then show him because it is not over until the fat lady sings.

Trevor's energy levels have been up and down but at the moment he is on an up and tomorrow well we will worry about tomorrow when it comes.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Feb 2017 at 22:11
Hi Bee Bee,

Trevor has been on Abbiraterone for over a year know we have just added Raduim 223 as well he had a real downturn over Xmas but is well and truly back with a bang .

To check out everyone's profile just click on there avatar and you can read our individual journeys.

Trevor was diagnosed in May 2013 with a PSA of 13000 , multiple bone mets over his whole torso , asthma , previous heart attacks he has had since his pca diagnosis pneumonia and a stroke ! and yet yesterday he was carrying in a new door from B&Q .

My advise is never ever give up hope .

This is such an unpredictable disease no two men are the same , if your dad will read some of these posts then show him because it is not over until the fat lady sings.

Trevor's energy levels have been up and down but at the moment he is on an up and tomorrow well we will worry about tomorrow when it comes.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Feb 2017 at 22:16

Hi Beebee.

My husband was absolutely adamant that he was never going to have chemo, from the moment he was diagnosed with advanced PCa. Unfortunately he was one of the unlucky ones and did not respond for long to any treatment. But when it came to the point when chemo was the next option he very reluctantly agreed (with tears in his eyes). I know everyone responds differently to different treatments but the chemo amazed us. He changed from lying in bed all day and barely eating, to going on 2 breaks to the New Forest where he was striding off into the forest with me trying to keep up! I clearly remember a picnic we had and he just kept eating and eating and eating! He went back to his part time job as a room guide in a stately home - so amongst large numbers of the public. Yes he had some days when he felt less well, but they were only a couple of days each cycle. He didn't even lose his hair (well not on his head anyway).

He had Abiraterone after the chemo which unfortunately did not work for him. But I am so grateful now for those few months of chemo which bought us some normality and some happy memories. So I guess all I'm saying is not to dismiss any treatment out of hand....

Wishing you and dad all the best whichever route you choose

Rosy

User
Posted 03 Feb 2017 at 22:20
Julie that's brilliant 👏👏👏 I will definitely be keeping Trevor in mind carrying that door! What a fighter xx
User
Posted 03 Feb 2017 at 22:21
Julie that's brilliant 👏👏👏 I will definitely be keeping Trevor in mind carrying that door! What a fighter xx
User
Posted 03 Feb 2017 at 22:27

Excellent advice from Rosy.

If you want a little more information on what chemo can be like have a look here:

http://community.prostatecanceruk.org/posts/t12197-Docetaxel-Chemo---the-highs-and-the-lows#post152202

User
Posted 03 Feb 2017 at 22:28
Rosy that is so inspiring! Thank you! I will show this to my dad and see what he thinks. Love and best wishes to you xxx
User
Posted 03 Feb 2017 at 22:30
Rosy that is so inspiring! Thank you! I will show this to my dad and see what he thinks. Love and best wishes to you xxx
 
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