Radium 233 after Aberarerone

User

Posted 10 Jul 2019 at 20:55

Having received aberaterone for the past year,my alk phos has now gone up for 3 consecutive months,and despite my PSA being a stable ( for me) 200 ish,my consultant has stopped it, and refused to consider enzolutomide.

I am being referred for consideration of Radium 233,which in my area(North Wales) is done at another centre.

Despite the stats,I am reasonably well for a 72 year old,and have no noticeable bone pain.

Is there anyone who has been in a similar position,who can advise me on what the major questions should be when I get my appointment,and whether there are any alternatives.

Thanks, David.

Diagnosed 2008

Radiotherapy

Cleared 2011

Back with metastases 2013

Aberaterone 2018

"Terminal " does NOT mean imminent!!

User

Posted 11 Jul 2019 at 23:52

Anyone??

Anyone out there who has had Radium 233,I really would appreciate your feedback.

"Terminal " does NOT mean imminent!!

User

Posted 12 Jul 2019 at 08:14

Radium 223 has good results and is generally tolerated well but you only get 6 cycles and I am not sure how useful it is if there isn't a lot of bone activity.

Ask the doctor what s/he hopes the benefit will be. Also perhaps ask about the possibility of older drugs such as stilboestrol (oestrogen based) or a steroid treatment?

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

User

Posted 12 Jul 2019 at 09:48

My husband had this treatment but it didn’t stop the spread of his cancer (Or maybe it slowed it, who knows?). He tolerated it very well and didn’t have any noticeable side effects. What bothered my was that during the six months his PSA continually rose but they did nothing about it on the basis that Radium 223 doesn’t affect PSA and his cancer was spreading all that time and delayed chemo because of it. Who knows if it would have been better to have had chemo first? Anyway, I’d take it if it was on offer if the older drugs (stillbestrill worked for three years with John) aren’t forthcoming.

Good luck

devonmaid xx

User

Posted 18 Jul 2020 at 11:08

I had my first injection of three so far (1 every 5 weeks, 3 more to follow) back in April. I am so far pleased with results evidenced by blood tests but suffering distinct and worrying side effects. Bone pain in the ‘saddle‘ area of my lower back and severe nerve pain especially in the right groin and down the right leg. I was told this is unusual but that I should take ibuprofen and paracetamol together 4 times a day. I’ve since had my GP suggest a switch to codeine 4 times a day and Notriptyline before bed. The codeine caused constipation with little pain relief. Sleeping now is usually interrupted by pain and severe back aches. I don’t want to stop the treatments but handling this pain issue is ruining my daily life.

User

Posted 24 Jul 2020 at 00:50

Hi There

My father had RA223 after he stopped responding to Abiraterone. I think he had 4 out of 6 injections before he became too unwell to continue with it. From what I've read, RA223 is generally well tolerated, although that wasn't our experience.

The pain your feeling I imagine will be a direct side effect of the RA223 targeting activity on your bones. Radiotherapy fundamentally burns, I can imagine there would be some pain.

A few things you should discuss with your consultant:

1. Have you had a sufficient break in time between being coming off Abiraterone and starting RA223? Given too close, the chances of bone fractures increases.

2. Keep a close eye on your Haemoglobin (HB) levels. RA223 will effect this negatively. Low HB is a lack of red blood cells. Anything below 70 is where you start becoming lethargic and anemic. It's important not only to monitor how much it goes down, but also the rate at which it goes down. If you see a big or persistent fall, you might want to consider delaying your next dose.

All the best with the treatment mate, fingers crossed your side effects are minimal.

User

Posted 24 Jul 2020 at 08:23

Thank you for your input. I had a blood test on Monday and spoke to the specialist nurse on Wednesday. Diplomacy is not my best suit, it seems, as my tale of excruciating pain before the weekend ( happily eased by Monday) provided the least welcome response. The next injection is due next Friday 31st but she decided to speak to the consultant. I’ve never met him having been referred from Shrewsbury but on hearing my symptoms told the nurse to tell me he had decided to pause the treatment. That is the last thing I want and I begged to speak to him. I also explained why I guess the treatment causes pain: I am a rock climber and have a crack in one of my vertebrae that I think attracts the radium. I’ve also suffered sciatica from that so the nerve endings must be raw. I was offered an appointment with him on 19th August but was advised ( wink wink) to phone the nurse next Wednesday complaining of pain and get myself admitted as a day patient. The consultant is on call that day so I should get to see him at last. I’m 73 and have had a great life. If this stuff works on the bone mets, I want it so long as the pain gets controlled. It seems to me that the medics tend to over react and stop treatment rather than seek to find a way the treatment can be administered that doesn’t cause pain.

The lack of local support is another concern. Referred to Wolverhampton I was discharged by Shrewsbury. If I call the latter, I’m told that I’m not their patient. My GP admits to not being a cancer expert so just comes up with ideas on pain control. Where is my ‘local support group’? I feel stranded in medical limbo.

Thanks for all your input. It is really helpful and gives me at least the chance to ‘sound off’.

User

Posted 24 Jul 2020 at 11:28

Glad I can help.

I empathise with your frustrations of being stuck in medical limbo, I'm all too familiar with it and appreciate how frustrating (infuriating) it can be.

You were referred to Wolverhampton - funnily enough this is where my father was treated. Do you know the consultants name by any chance?

I think your suspiscions on why the Radium may be causing pain could be correct. Chemo can't distinguish between good and bad rapidly dividing cells, I think Radium is similar in that it can't distinguish between "good" and bad bone activity.

The problem when it comes to Radium I think is a lack of knowledge. I don't think the consultants can definitively say if it'll help or cause more pain, I think that is contingent on too many factors i.e. spread/density of mets, are those mets currently causing pain, other non malignant bone activity etc. It'll probably help knock your ALP level down which, in medical terms I suppose suggests your fighting the cancer, the question is do the benefits outweigh the cons? Excruciating pain doesn't sound pleasant but if it's eased off, maybe the next round won't cause the same pain? Similarly, it might cause even more pain - I don't think you're going to get a yes/no answer to that from anyone. I'm unsure if the treatment can be administered any differently, I suppose you could enquire about a lower dose perhaps?

If OTC painkillers don't ease the pain enough then you'll just get given opiates which might well help with pain but have all sorts of other potential unwanted side effects attached to them. Don't get me wrong, if they work and you can manage the side effects, then brilliant! If only there was something natural with the potential to ease pain without causing terrible side effects.... A guy I knew mentioned something about treating his arthritic pain with something natural, he lives in Amsterdam.

User

Posted 24 Jul 2020 at 12:37

My oh takes naproxen twice a day which controls the pain with paracetamol through the day as needed but less than 8 a day. Cocodamol works but side effects were too much for him .

User

Posted 26 Jul 2020 at 09:20

Again my thanks for all of your support and input. I don’t think I should name doctors or nurses for very obvious reasons. Nor do I believe they or any health worker would dream of giving anything less than the best care possible. I do however believe that Prostate Cancer care has become something of an industry. From my first referral to the hospital I found myself on a sort of conveyor belt that occasionally paused at this test, biopsy and Scan then focussed biopsy ( with the regular words “well the result is clear but your PSA is rising so we’d better do this’). When the focussed biopsy came back with a Gleason Score of 7 (4:3) I was offered surgery to remove the gland with the strong likelihood that the cancer would go with it. Returning after the surgery and the weeks of catheterisation for an appointment with the surgeon, I had a bad feeling that I was going to hear bad news. It was. After 10 minutes of questions regarding bladder control and return of sexual activity (??) he said “ I expect you want to hear the results of the pathology? Well it’s bad news: the Gleason score is actually 9. I’ll refer you to the Oncologist”. I referred myself privately. On a later appointment with the surgeon’s houseman, I had to control my anger when he blandly declared “ We never trust the scans and biopsies as they are frequently wrong”. If I’d heard that three months before I might have at least considered other options.

As regards the current situation with Wolverhampton and poor local support, I have decided that I will not ‘cheat the system’ and not sneak in on Wednesday in the hope of getting to see the consultant under false pretences. I will attend the consultation on 19th August but between times get a referral to the local hospice, where I know a number of the staff, and gain the best advice on pain control. I will ask the nurse to provide a blood test form and to suggest to the consultant that I have a CT scan before seeing him.

My present pain control consists of Ibuprofen with Nortriptyline at bedtime. For the past two days I have been close to collapse with pain and aches around the hips and had to take codeine to ease it. I’m whacked.

Bless you all.

Edited by member 26 Jul 2020 at 09:38 | Reason: Not specified

User

Posted 27 Jul 2020 at 11:19

Hi Mate

You're more mature and and inclined to see the better in people than I am. My experience has left me quite bitter, not to the extent that I particularly blame those in charge of my Father's care for his suffering and passing, but there was a real lack of attention to detail, the feeling that he was just a number to them and at times, they were downright neglectful.

I understand your comment about feeling as though your on some kind of conveyor belt. You'd think there'd be some better communication between departments/hospitals/professionals etc. which might ensure a better flow of information and a more united approach to how all the different practioners etc. receive and progress you as a patient. As you say, why were you offered curative surgery when in fact, it seems you were beyond that to begin with? Surgery is very invasive, had you known it wasn't going to cure it, you may have reconsidered. Why has the Gleason changed from biopsy to surgery? What's the point in a biopsy if they never trust it? They're dangerous, why is just standard protocol to have one if they're not deemed accurate? I digress, my cyncacism often comes out....

With regards to your current pain, did you ever have a bone imaging scan? It's common for prostate cancer to spread to the pelvis and spine, if this is new pain then I'd guess the Radium is tageting the activity on these areas? Is the pain exacertabed then you move? My dad suffered a fractured femur and his hip had essentially caved in which caused him a lot of pain, perhaps you've got a fracture somewhere? Hopefully you'll get some more informed answers at your next consulation. It might be a good idea to have an xray on your pelvis.

I think the hospice may advise you to take stronger opiates than Codeine. You then question the benefits/cons of opiates vs the pain your currently experencing. Are there any other medications you can take to limit the negative side effects of opiates e.g. anti sickness to combat nausea, dare I mention Dexamethasone so combat fatigue etc... These will all come their own side effects as you're probably aware, you'll have to decide which route is most comfortable for you.

I'm a complete stranger to you, but I'm rooting for you here. If there's anything you think I might be able to help you with, feel free to ask, I'll help however I can.

Edited by member 27 Jul 2020 at 11:30 | Reason: Not specified

User

Posted 03 Sep 2020 at 12:04

My adventure or should I say, ordeal at the hands of the radium 223 clinic at Wolverhampton ended three weeks ago after 3 of the prescribed injections of 6. This abandonment was a direct result of the excruciating pain that seemed to be triggered by the treatment. Assessments had seemed to rely on ‘tick lists’ followed by glowing accounts of the great results in controlling ALP. Trying to communicate the agony I had suffered post injections fell on deaf ears until my partner seized the telephone and explained it in no uncertain terms. The treatment was ‘paused’. I did get to see the Registrar who thought I had SCC and who wanted to admit me. As I had other important calls on my time I refused and went home. Another appointment the following week when I had hoped to see the consultant was a re-run of the first. Two 100 mile round trips for no result.

I am now Safely back under the care of the wonderful oncology clinic at Royal Shrewsbury Hospital having asked to be discharged by Wolverhampton. I’ve had an MRI scan that shows that the cancer has spread to almost all the main vertebrae in the back. Other areas such as the pelvis also show a spread. The radium appeared to have done little or nothing to hold the disease at bay. Within the next two weeks I will have a CT scan followed by focussed Radiotherapy followed, I expect, by the Chemotherapy I had hoped to avoid.

Its been good to get this off my chest. Radium 223 is not a ‘wonder cure’ at least not for me nor for others who have written here. I strongly recommend that any man considering it demands a full explanation of the treatment and all the likely side-effects and the anticipated relief it may provide. Unless you are convinced, don’t go there. It cost me 6 months of long journeys and consequent torture with no benefit.

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