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Radium 223 Progress

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User
Posted 17 Feb 2016 at 17:12

Hi, thought I would give you an update on my OHs treatment. If you refer to my profile you will see that he has recently come off Enzalutamide (not so magic beans now)! He has been waiting to be accepted for Radium 223 as his mets are in bones and nothing in soft tissue.

He was accepted and has been for his first cycle today - the appointment was a lot quicker and easier that expected, fairly straightforward process. Looks like he will not be too restricted in what he can do (unlike chemo) however been warned that pain may increase in short term. Hoping that long-term he will benefit from having a lot less pain and be able to do more walking - we are fell walkers so he really misses getting out on high level walks.

Anyway, not too much to report yet, just a bit drained from the build-up to the appointment, but I will keep a regular update going as I don't think that many have reported on this treatment with it being fairly new.

Had to go to St James, Leeds so involved train journey as not available locally, but luckily we have good transport into Leeds - certainly not worth driving it would take twice as long!

Take care everyone.

Glen

 

User
Posted 18 Feb 2016 at 22:20

I had six doses of Radium 223 (Alpharadin) with zero side effects. Hard to prove a negative but that was two years ago and I'm still here http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Nil desperandum

Allister

User
Posted 13 May 2016 at 08:27

Update following treatment 4 on 11 May.

For some reason PSA not measured by phlebotomy so guessing it's risen! Bone Markers slightly up at 128 but still within tolerance. Hb down at 9.6 - not the lowest it's been but they will keep an eye on this and maybe a transfusion on the cards.

Hubby is very tired, gets breathless easily and still has quite a bit of pain, however, he is taking no pain killers!

Had discussions what happens after the 6 treatments. Talked about a new trial which uses immunotherapy. Has to have had chemo (he has)and will need to send biopsies from original samples to see if the treatment has a chance of working for him. Will set the wheels in motion in 4 weeks time at treatment 5. Other than that it may be Cabazitaxel.

He gets very low with the treatment especially as he just cannot do the fell walking he used to do. I am in training for Wharfedale 3 Peaks, 22 miles over Birks Fell, Buckden Pike and Great Whernside from Kettlewell on 22 July and will raise money for PCUK.

Hope this post is of interest.

Regards

Glen

 

 

User
Posted 17 Feb 2016 at 22:00

Thanks for the update. I am following your progress with lots of interest. I am shortly to start enzo but it will have its day, the chemo, then I hope radium 223, so it's good to know what is happening. I do hope it begins to work well. Good luck in this journey.

User
Posted 17 Feb 2016 at 22:05
Hi Glen,

Realy interested to hear how you get on with the radium 223, I had hoped this would be an option for us but I have recently read that not so Nice has removed it for men that have not had chemo so basically no chemo then no radium. I think this will be an interesting thread for a lot of men as not many post on there experience with it.

So Thank you.

BFN Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Feb 2016 at 22:06
Hi Martin. Radium 223 is injected and is attracted to cancer cells. It then emits radium and targets cancer cells around. It's only suitable if you have bone mets. Long term it should improve bone pain and help delay any fractures etc. Ive decided to call him the ready brek man with his radioactiveness!

Glen

User
Posted 17 Feb 2016 at 23:46

Not easy to get to St James once you make it to Leeds though - sometime when you are coming through, let me know and I will try to meet you. I would make a reasonable taxi driver!

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

User
Posted 18 Feb 2016 at 09:44
Hi Glen

I am also following your thread with much interest.

Wishing your husband all the best with his treatment.

Lesley x

User
Posted 29 Feb 2016 at 18:29

Good news. 7.5 miles. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif The boy done good!

And a pint or two afterwards perhaps.

Edited by member 29 Feb 2016 at 18:30  | Reason: Not specified

User
Posted 29 Feb 2016 at 22:04
Wow Glen 7.5 miles I hope the wind was in the right direction😄Realy good to hear that the side affects are lessening. Great to get updates from you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Feb 2016 at 22:46
What a fantastic post Glen. So lovely to hear that you OH is improving

Lots of love

Devonmaid

User
Posted 01 Mar 2016 at 10:02

Great to hear that good news Glen.
Best wishes

"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 01 Mar 2016 at 11:11
Glen

that is fantastic lets hope that the improvement continues with this treatment. I am so very happy for you.

Your OH is one of a very few people I know of on this treatment, so your updates are really important for those who only have this left in the current options.

All my best wishes

xx

Mo

User
Posted 06 Apr 2016 at 20:56

Some good news there, sounds promising indeed. Enjoy the break too!

User
Posted 06 Apr 2016 at 22:19
Hi Glen

This is great news, very pleased for you both. Hope its sucess continues for you.

Have a lovely time in the lake district, beautiful place. Hope weather behaves for you.

Lesley xx

User
Posted 07 Apr 2016 at 16:50

I've got fingers and toes crossed that Phil gets a substantial period of remission from Radium 223. Enjoy the Lakes.

User
Posted 09 Apr 2016 at 20:51
Hi Glen,

Because this is maybe a next step for us I have been trying to read as much as possible, two things that I had read about was initial PSA flare and according to some findings this initial flare gave a better long term response the PSA flare also was in conjunction with increased pain which would make sense.

I have fingers crossed that the PSA starts tumbling soon . Enjoy you trip.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Apr 2016 at 08:28

Hi Glen, best of luck with the treatment and things start to improve. Also have a wonderful break in the lakes, fabulous break..

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 10 Apr 2016 at 19:50

Thanks for the update, Glen. We are still a bit behind you on this path, partly because another avenue is being explored (more about that in a week or two when we know more) but your OH's blood results sound like what might be expected - we were told that the Radium would have more effect on the ALPS than on the PSA. Have a lovely holiday, I know how precious these things are at this stage. And keep in touch.

User
Posted 13 May 2016 at 09:06

Hi Glen good that things are ticking along steadily and there is a plan for next lot of treatment.

It is a bummer when this treatment puts a hold on the things that are enjoyed and absolutely wonderful that you are raising money for PCUK is there a just giving page or some other online page to donate to?

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 13 May 2016 at 09:56

Great to hear from you Glen and the progress under radium 223. It is great he is holding his own and that there may be more plans further down the road. You are a trailblazer for this drug and I always watch with interest as may get there at some point. Hope it can begin to feel better in himself as time goes on! Thinking of you both.

User
Posted 13 May 2016 at 09:57
Thank you for the update Glen,

I have been keeping an eye out for your post sorry to hear about the pain . Good news though that there are new plans being talked about.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 May 2016 at 13:50

Originally Posted by: Online Community Member

Hope this post is of interest.

Of course it is for at least two reasons:

1. Lots of us are headed in the direction of Radium 223.

2. Far more importantly we care about how you and Phil are getting on.

Fingers and toes remain permanently crossed for you.

Has your Onco ruled out giving Stilboestrol a try? How about asking about Hsp90 inhibitors?

http://community.prostatecanceruk.org/posts/t11706-New-drugs-for-aggressive-prostate-cancer--promising#post145585

It's got to be worth trying to get the pain under control isn't it? Everything I've read about PCa pain indicates it's easier to sort it the sooner you jump on it.

User
Posted 13 May 2016 at 20:15
Hi Glen

Sorry to hear that pain is an issue. Like many others I am very interested to read about how things are going for you both. Quality of life is so important, I hope that things improve so that you can continue to enjoy life.

Lots of love

Devonmaid xxx

User
Posted 01 Jun 2016 at 13:07

So sorry to hear that. I know exactly how you feel as my husband is at a similar stage to yours. Just come off enzalutamide as it had stopped working and now metastasised to chest lymphs. Had extensive skeletal mets on diagnosis in Dec 2012. He is due to start maintenance of weekly low dose docetaxel for five weeks with a view to going onto Cabazitaxel when it is available to us in August. He has previously had 10 cycles of docetaxel prior to the enzo. Not suitable for radium 223 due to chest lymph and stillboestrol ruled out by onco. It feels like a real roller coaster ride and far too real. Best wishes to your and your husband.

Max

"You can only play the hand you're dealt"

User
Posted 01 Jun 2016 at 16:41
So sorry to hear this, you are all so brave.

Love

Devonmaid xxxx

User
Posted 01 Jun 2016 at 22:03
Oh Sugar Glen we are not far behind you on the path, small steps I suppose that is all we can hope for small steps , the Raduim is probably our next and probably only option.

Is chemo a next option for you ? I know you have already been there and got the T Shirt but just thinking a second round might be beneficial.

Thinking of you .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Jun 2016 at 08:08

I'm really sorry to read this and very much hope there may be other treatment options for you. Most of all I hope Phil's morale improves for the sake of both of you.

David

User
Posted 04 Jun 2016 at 22:45
Hi Glen

I'm very sorry to read your latest post. Sending you a big hugg. I do so hope it doesn't take too long for phil to get onto a new more effective plan of care so that you can both start taking some small positive steps forward.

Take care

Lesley x

User
Posted 06 Jun 2016 at 19:26
Hi Glen my name is Debbie a relitivley new member. Wanted to send our best wishes to you both and hope they can find something that works for your OH. We are just starting out on our journey so not sure where it is going to go and to be honest it terrifys me. Just thinking about it. My husband Steve has just started on HT and chemo to follow shortly. I will follow your post with interest and wish you both well in your battle.

Don't count the days , make each day count

Debbie xx

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User
Posted 17 Feb 2016 at 21:54

Hi Glen, Best wishes to Phil with his treatment. 

I was curious about the Radium 223 treatment, are they treating all of the bone cancer or is it more a spot treatment for the worst areas? I don't know much about this and thank you for sharing your experiences.

 

"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 17 Feb 2016 at 22:00

Thanks for the update. I am following your progress with lots of interest. I am shortly to start enzo but it will have its day, the chemo, then I hope radium 223, so it's good to know what is happening. I do hope it begins to work well. Good luck in this journey.

User
Posted 17 Feb 2016 at 22:05
Hi Glen,

Realy interested to hear how you get on with the radium 223, I had hoped this would be an option for us but I have recently read that not so Nice has removed it for men that have not had chemo so basically no chemo then no radium. I think this will be an interesting thread for a lot of men as not many post on there experience with it.

So Thank you.

BFN Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Feb 2016 at 22:06
Hi Martin. Radium 223 is injected and is attracted to cancer cells. It then emits radium and targets cancer cells around. It's only suitable if you have bone mets. Long term it should improve bone pain and help delay any fractures etc. Ive decided to call him the ready brek man with his radioactiveness!

Glen

User
Posted 17 Feb 2016 at 23:46

Not easy to get to St James once you make it to Leeds though - sometime when you are coming through, let me know and I will try to meet you. I would make a reasonable taxi driver!

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

User
Posted 18 Feb 2016 at 09:44
Hi Glen

I am also following your thread with much interest.

Wishing your husband all the best with his treatment.

Lesley x

User
Posted 18 Feb 2016 at 15:33

You're right Lynne, easy to get to Leeds but then a bus out! It's not too bad as stops near the station and I work in Leeds, not the nicest of areas to ride through though, being used to living in the sticks with lots of green around. Cutting edge technology at Leeds, though.

Day 1 following the Radium, hubby in quite a lot of pain, but this is expected and indicates the Radium doing it's job! Blast those bone cancer cells! Looking forward to a nice meal out with friends on Friday.

Glen

 

User
Posted 18 Feb 2016 at 22:20

I had six doses of Radium 223 (Alpharadin) with zero side effects. Hard to prove a negative but that was two years ago and I'm still here http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Nil desperandum

Allister

User
Posted 29 Feb 2016 at 16:56

Almost at the end of week 2 since the first dose of Radium 223. OH suffered quite badly the first week with a lot of pain in hip and spine, nausea and constipation caused by pain killers.

However, the weekend saw a turnaround - we had a day out around Settle and Ribblehead in the car on Saturday and then Sunday managed the 7.5 mile ridge walk over from Silsden to Ilkley - amazing and really cheered him up!

Blood test due this week to check everything and next dose of Radium due 16/3. Here's hoping he continues to improve and gets better after each one, and side effects lessen!

 

 

User
Posted 29 Feb 2016 at 18:29

Good news. 7.5 miles. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif The boy done good!

And a pint or two afterwards perhaps.

Edited by member 29 Feb 2016 at 18:30  | Reason: Not specified

User
Posted 29 Feb 2016 at 22:04
Wow Glen 7.5 miles I hope the wind was in the right direction😄Realy good to hear that the side affects are lessening. Great to get updates from you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Feb 2016 at 22:46
What a fantastic post Glen. So lovely to hear that you OH is improving

Lots of love

Devonmaid

User
Posted 01 Mar 2016 at 10:02

Great to hear that good news Glen.
Best wishes

"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 01 Mar 2016 at 11:11
Glen

that is fantastic lets hope that the improvement continues with this treatment. I am so very happy for you.

Your OH is one of a very few people I know of on this treatment, so your updates are really important for those who only have this left in the current options.

All my best wishes

xx

Mo

User
Posted 06 Apr 2016 at 20:49
Just a quick update. Latest bloods after 2nd cycle. PSA 285 (not good), bone markers 107 (good as 170 last time).

OH still had quite a bit of pain but less than with first cycle. Just taking high dose paracetamol now though as had too many side effects with other pain killers.

Saw oncologist today who said treatment working and targetting cancer in bone well and should give better quality of life. We also still have cabazitaxel in bag.

Cycle 3 is on 13 April then looking forward to a 10 day lake district break on 21st. It may just be me doing the high level walking though!

I will keep posting progress...hoping to report even more improvement in pain.

Take care all.

Glen

User
Posted 06 Apr 2016 at 20:56

Some good news there, sounds promising indeed. Enjoy the break too!

User
Posted 06 Apr 2016 at 22:19
Hi Glen

This is great news, very pleased for you both. Hope its sucess continues for you.

Have a lovely time in the lake district, beautiful place. Hope weather behaves for you.

Lesley xx

User
Posted 07 Apr 2016 at 16:50

I've got fingers and toes crossed that Phil gets a substantial period of remission from Radium 223. Enjoy the Lakes.

User
Posted 09 Apr 2016 at 20:51
Hi Glen,

Because this is maybe a next step for us I have been trying to read as much as possible, two things that I had read about was initial PSA flare and according to some findings this initial flare gave a better long term response the PSA flare also was in conjunction with increased pain which would make sense.

I have fingers crossed that the PSA starts tumbling soon . Enjoy you trip.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Apr 2016 at 08:28

Hi Glen, best of luck with the treatment and things start to improve. Also have a wonderful break in the lakes, fabulous break..

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 10 Apr 2016 at 19:50

Thanks for the update, Glen. We are still a bit behind you on this path, partly because another avenue is being explored (more about that in a week or two when we know more) but your OH's blood results sound like what might be expected - we were told that the Radium would have more effect on the ALPS than on the PSA. Have a lovely holiday, I know how precious these things are at this stage. And keep in touch.

User
Posted 04 May 2016 at 12:28
Radium treatmen 4 due on 11 May. Nurse just phoned with preliminery bloods done yesterday. Didnt have all results as done at a different hospital but it is looking like Bone Markers have increased this time which is not good

Still looks like they will go ahead with treatment but I will update full results after 11th.

The treatment is taking its toll. OH not able to do much walking unless on flat so he is quite down. He's taken himself out on motorbike today so hopefully that will cheer him up.

I managed to do Skiddaw on my own in the Lakes so took plenty of photos.

Glen

User
Posted 13 May 2016 at 08:27

Update following treatment 4 on 11 May.

For some reason PSA not measured by phlebotomy so guessing it's risen! Bone Markers slightly up at 128 but still within tolerance. Hb down at 9.6 - not the lowest it's been but they will keep an eye on this and maybe a transfusion on the cards.

Hubby is very tired, gets breathless easily and still has quite a bit of pain, however, he is taking no pain killers!

Had discussions what happens after the 6 treatments. Talked about a new trial which uses immunotherapy. Has to have had chemo (he has)and will need to send biopsies from original samples to see if the treatment has a chance of working for him. Will set the wheels in motion in 4 weeks time at treatment 5. Other than that it may be Cabazitaxel.

He gets very low with the treatment especially as he just cannot do the fell walking he used to do. I am in training for Wharfedale 3 Peaks, 22 miles over Birks Fell, Buckden Pike and Great Whernside from Kettlewell on 22 July and will raise money for PCUK.

Hope this post is of interest.

Regards

Glen

 

 

User
Posted 13 May 2016 at 09:06

Hi Glen good that things are ticking along steadily and there is a plan for next lot of treatment.

It is a bummer when this treatment puts a hold on the things that are enjoyed and absolutely wonderful that you are raising money for PCUK is there a just giving page or some other online page to donate to?

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 13 May 2016 at 09:56

Great to hear from you Glen and the progress under radium 223. It is great he is holding his own and that there may be more plans further down the road. You are a trailblazer for this drug and I always watch with interest as may get there at some point. Hope it can begin to feel better in himself as time goes on! Thinking of you both.

User
Posted 13 May 2016 at 09:57
Thank you for the update Glen,

I have been keeping an eye out for your post sorry to hear about the pain . Good news though that there are new plans being talked about.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 May 2016 at 13:50

Originally Posted by: Online Community Member

Hope this post is of interest.

Of course it is for at least two reasons:

1. Lots of us are headed in the direction of Radium 223.

2. Far more importantly we care about how you and Phil are getting on.

Fingers and toes remain permanently crossed for you.

Has your Onco ruled out giving Stilboestrol a try? How about asking about Hsp90 inhibitors?

http://community.prostatecanceruk.org/posts/t11706-New-drugs-for-aggressive-prostate-cancer--promising#post145585

It's got to be worth trying to get the pain under control isn't it? Everything I've read about PCa pain indicates it's easier to sort it the sooner you jump on it.

User
Posted 13 May 2016 at 16:53

Thanks everyone for your replies. Not talked about those other treatments but will make a note of them, thanks.

 

I will be setting up a Just Giving page for my trek and will put on once I have done...off to do Whernside tomorrow as part of my training...weather looking good too!

 

Glen

User
Posted 13 May 2016 at 20:15
Hi Glen

Sorry to hear that pain is an issue. Like many others I am very interested to read about how things are going for you both. Quality of life is so important, I hope that things improve so that you can continue to enjoy life.

Lots of love

Devonmaid xxx

User
Posted 01 Jun 2016 at 12:34
Bad news today. Oncologist phoned OH following blood test. PSA rocketed to over 2000 and indications radium 223 no longer working. Bone scan booked for Friday, CT and MRI to be booked then appt with oncologist to decide next treatment plan.

Further update after scans and appointment.

Happy days....not

Glen

User
Posted 01 Jun 2016 at 13:07

So sorry to hear that. I know exactly how you feel as my husband is at a similar stage to yours. Just come off enzalutamide as it had stopped working and now metastasised to chest lymphs. Had extensive skeletal mets on diagnosis in Dec 2012. He is due to start maintenance of weekly low dose docetaxel for five weeks with a view to going onto Cabazitaxel when it is available to us in August. He has previously had 10 cycles of docetaxel prior to the enzo. Not suitable for radium 223 due to chest lymph and stillboestrol ruled out by onco. It feels like a real roller coaster ride and far too real. Best wishes to your and your husband.

Max

"You can only play the hand you're dealt"

User
Posted 01 Jun 2016 at 15:49
Best wishes to you too. It sounds a very similar path. It really is a roller coaster...think doing ok for a bit then wham! Worry worry worry.

Glen

User
Posted 01 Jun 2016 at 16:41
So sorry to hear this, you are all so brave.

Love

Devonmaid xxxx

User
Posted 01 Jun 2016 at 22:03
Oh Sugar Glen we are not far behind you on the path, small steps I suppose that is all we can hope for small steps , the Raduim is probably our next and probably only option.

Is chemo a next option for you ? I know you have already been there and got the T Shirt but just thinking a second round might be beneficial.

Thinking of you .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 Jun 2016 at 06:01
Yes Julie. Still have cabazataxel; and also looking at TOPARP trial with Olaparib. Dealing with a very depressed OH at moment. I think original biopsies have to be assessed for this trial and get scan results. Bone scan booked for friday.

Glen

User
Posted 03 Jun 2016 at 08:08

I'm really sorry to read this and very much hope there may be other treatment options for you. Most of all I hope Phil's morale improves for the sake of both of you.

David

User
Posted 04 Jun 2016 at 22:45
Hi Glen

I'm very sorry to read your latest post. Sending you a big hugg. I do so hope it doesn't take too long for phil to get onto a new more effective plan of care so that you can both start taking some small positive steps forward.

Take care

Lesley x

User
Posted 06 Jun 2016 at 19:26
Hi Glen my name is Debbie a relitivley new member. Wanted to send our best wishes to you both and hope they can find something that works for your OH. We are just starting out on our journey so not sure where it is going to go and to be honest it terrifys me. Just thinking about it. My husband Steve has just started on HT and chemo to follow shortly. I will follow your post with interest and wish you both well in your battle.

Don't count the days , make each day count

Debbie xx

 
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