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Radium 223 Progress

User
Posted 10 Apr 2016 at 07:28

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 18:50

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 11:28
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 07:27

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 08:06

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 08:56

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 08:57
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 12:50

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 15:53

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 19:15
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 11:34
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 12:07

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 14:49
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 15:41
So sorry to hear this, you are all so brave.

Love
Devonmaid xxxx
User
Posted 01 Jun 2016 at 21:03
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 05:01
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 07:08

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 21:45
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 18:26
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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