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chemo,enzalutamide,radium 223

User
Posted 05 Jan 2015 at 12:37

Hello all,

 

My name is Rod, and I was first diagnosed with advanced prostate cancer in May 2012 at the age of 58, after a few months trying to figure out what was causing the various pains I was getting in my groin and buttock area. As I was a long term sufferer from back and muscle problems, after spending way too much time on the football fields and squash courts of Worcestershire and California up until the age of 50, it took a lot of failures of physios, osteopaths, chiropractors and masseurs, to convince me that something more sinister was causing the problems. I had also been suffering from discomfort when riding my bike since a cycling holiday in France in September 2011.

 

My PSA went up from 3 to 6 over a couple of months, and this triggered a biopsy which showed me to have a Gleason score of 9, and further scans showed metastases in my lungs and hip.

 

The initial treatment was a Zoladex hormone implant, which appeared to do the trick for 6 months, and even got rid of some nagging back pain that had been bothering me for a long time. However, a deterioration in my urinary situation and a rising PSA indicated that it was no longer working.

 

Next up was a schedule of 10 doses of docetaxel chemotherapy, one every 3 weeks. I tolerated the chemo fairly well, with no sickness and little nausea, but each dose did take a longer recovery period before my energy returned.

 

Initially my PSA dropped to less than 2, but after 9 doses, it began to rise again and scans showed that the chemo was no longer having the desired effect on the cancer in my hip, so the course of treatment was stopped.

 

The next treatment was daily Enzolutamide capsules. After 4 months of these, further scans showed that this new drug was actually having very little effect and the cancer had spread more into my bones. I was getting pain from my hip and was struggling to walk.

 

My consultant, Professor James at the QE hospital in Birmingham, wanted to start me on radium 223, but a call to the Bayer representative confirmed that no stocks were available, so it was back to chemotherapy, this time cabazataxel, again for 10 doses, one every 3 weeks, also with doses of Zometa every 4 weeks to keep my bones strong.

 

So far I’ve had 2 doses of the new chemo, and it has helped my hip pain, and once again I’ve had few problem with sickness or nausea, but my energy levels have been really low, and my PSA level is rising alarmingly to close to 200.

 

So that’s my story so far. I hope this info is useful to some of you, and if there are any queries I can try to answer, please let me know.          

 

User
Posted 05 Jan 2015 at 16:05

Rod

Sorry you find yourself here. I can't give any advice on your treatments, but I hope you are able to build up your energy levels and enjoy your hobbies asap..

Paul

Stay Calm And Carry On.
User
Posted 05 Jan 2015 at 18:21

Welcome aboard Rod .

You have had a rough ride & I trust you get a favourable outcome from the cabbage juice as one of our members called it.

I think the problem with the R223 was with the containers & that should be sorted;  so hopefully available to you soon as well.

 

Do keep us informed as to progress & Best wishes for that.

User
Posted 05 Jan 2015 at 18:40

Thinking of you Rod. My husband has followed a similar course of treatment to you (see profile), but fingers crossed the Enzalutamide is still working.

Hope you get the treatment you need soon and it works.

 

Glen

User
Posted 05 Jan 2015 at 23:20

Hi Rod

 

I've had 20 sessions of Chemo + 6 of Radium 223. I suggest you look at my profile http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Nil desperandum

Allister

User
Posted 06 Jan 2015 at 08:34

Hi Rod

Welcome to the forum, sorry to see you having a pretty rough time.

My Onco met the Bayer Rep on Monday, i will be meeting him Thurssday so will try and post an update as to when radium will be available again.

Are you still able to get Abbi?

Best of luck mate

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 09 Mar 2016 at 19:10

HI Rod /All

MY name is Mick I was diagnosed with prostate cancer in 2014 at the age of 58, the cancer had already spread to my bones, my Gleason score was 10, My  PSA reading was 9, I too found the cancer because I had aches and pains after doing mild exercise which i couldn't explain.

I was immediately put on monthly injections of Degarelix which lowered my PSA to around 0.2, this worked for around a year then my PSA started rising, I stared Chemo (Docetaxel) but after 4 sessions I was told it was having no effect so the treatment was stopped. I was put on Enzalutamide with monthly doses of Zometa for Bone Strengthening in October 2015, I feel reasonably well but unfortunately my PSA is steadily rising and now stands at 41.

Radium 223 has been mentioned , I see my specialist this Monday the 14th of March after a recent CT scan, to say I'm worried is an understatement to say the least.

Has anyone had good results for Radium 223?

Good luck and Best wishes to all  

User
Posted 10 Mar 2016 at 22:40
Hi. My husband has just started Radium 223 after HT, Docetaxel then Enzalutamide. Had 1st infusion 3 weeks ago. It has good reports for long term bone pain but he is currently experienced a predicted pain flare and trying to get pain killers right. My profile gives more detail.

All the best

Glen

User
Posted 11 Mar 2016 at 09:46

Thanks for the update, Glen. I have nothing useful to contribute here yet, but Tony is on a similar pathway and I do appreciate hearing others' experiences. After a good initial response to Enzalutamide, Tony's PSA has started to rise again, and we are awaiting the next blood test later this month, to see whether the trend continues. If so, Radium 223 is the most likely next step.

In the meantime, he feels fit and well. We have had a lovely holiday in the Canaries, and right now he is out in the garden, repairing storm damage to various structures. This is such a strange disease, when someone can be so seriously ill and yet, with treatment, live a normal and active life, at least for a while.

User
Posted 11 Mar 2016 at 12:09
Glenda,

I have every sympathy for your OH as I experience tumour flare recently and it was very debilitating. Once the pain relief got organised it eased and it did settle down again so hopefully the pain is short lived but definitely not nice! Hope he is feeling better soon.

 
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