need advice from anyone on radium223 please

User

Posted 03 Apr 2015 at 10:56

Please could anyone who has started Radium223 or xiofigo treatment please try to help me on the waiting game of actually starting it.

OH got appointment with oncologist on the 9th April after having a CT scan to hopefully start this treatment.

what i want to know is, Will he get it the same day if she approves it or will it be ANOTHER APPOINTMENT.

I feel I can't wait any longer as (here comes the rant n rave n upset) his treatment on XTANDI has not been working really since last January, his PSA went up from 54 to 80. The oncologist requested OH restart Zometa as that may help lower his PSA and help pain.

I feel she was correct to try this first but by early March his PSA had jumped to 188, so on our next appointment which was on 19th March, she (oncologist) informed us obviously the Xtandi had stopped working and that he was to have a CT scan and on getting the results, see her again on the 9th April either start a course of xiofigo or something else (forgot what the alternative was).

After hearing nothing by Friday 27th March we phoned to be told by the scan dept " Oh have you been booked in", then "Oh sorry I see your details now". Please can you call Monday at 7.30 am for scan.

We know all NHS medical staff are overworked and things get lost or mislaid due to the this and they are wonderful when you actually arrive for your appointment.

What we didn't realise was that with the clocks going forward on Sunday, OH already having a pain level of 5 out of 10, having to get up after a rough night anyway for 5.15am, having the scan, then driving home which luckily is only a 20 minute drive, it had thoroughly wiped him out, and has spent the rest of the week more or less in bed, pain level 6 to 8 on occasions.

But my/our worst fear now is waiting another 6 days for appointment only to be told we will have to wait longer while another appointment is booked should OH be approved for the radium223 injections.

He has really deteriorated with not being on treatment that works since January and apart from taking more medication there is nothing we can do for now, but I am willing the days past, and i don't know if I could cope with the stress although hiding this from him, or he with pain, not eating much and that he's confined to bed all day to be waiting any longer even though I do know, we may have to, but it will be such a relief to see and get treatment started on the same day. Please God hear my plea.

i would like to thank all in advance for taking the time to read and reply if possible as it has helped to put my thoughts into words and my anxiety has been replaced with tears at the moment. good job OH in bed

June (partner of Patrick)

User

Posted 04 Apr 2015 at 00:21

Hello June

I'm really sorry but I am not able to answer your questions on Radium 223, as far as I know only Allister (Allahayes) has had that treatment but I could be wrong. I just wanted you to know I had read your story and felt your worry and concern come over very strongly and that's not surprising give me what you have said. Have you tried ringing the nurses on this site (though they may be away from the Easter holidays) or your oncology specialist nurse for advice on this?

I hope this gets sorted for you very soon, I believe Radium 223 is an exciting new treatment.

Lots of love

Allison

User

Posted 04 Apr 2015 at 02:49

Thanks for your reply. Only 5 more days now to go until appointment with oncologist so it's probably best not to phone.
Pat's oncologist does listen and always explains his options so I don't want to be phoning with questions when all her medical team are so busy and it's only a few days off now.
As you will know only too well, when we are not in control, which is where we are at this time, All frustrations, anger and sadness takes over.
And getting past the Demon of a Secretary is enough to make me want to commit murder, so that was another reason not to phone.
Also as i stated before, it is sometimes a huge relief just to put it all in words and get it out of my system and even though i am still very concerned, Pat has been more his old self today and dare i say, not in much pain. Hope he can stay this way till Thursday.
If you are having a down day on Thursday I hope I can lift your spirits and maybe a chuckle thinking of me gritting my teeth, going the scenic route to try my best to avoid the Demon of a secretary. I will probably end up with a slight grin now, remembering what I've wrote to you.
anyway once again thank you,
June

User

Posted 04 Apr 2015 at 08:03

Hi June. I also have no clue about this treatment for your OH . However, just want to say that it must be hard supporting a partner who is ill and in pain. It does help sometimes to get frustrations off our chests and writing your post may have helped. Good to hear he is back to his old self today. I am inspired by many on here like yourself who stay strong for their OH. Cheers. Georgina

User

Posted 04 Apr 2015 at 09:00

Good morning June,

Sorry I can't answer your question either but I just wanted you to know that people are reading your post and that we understand your panic.

Trevor isn't in as much pain as he was when we started this journey around 1-2 know but in the begining it was around 8-9 and I can remember so vividly those awful feelings of despair coupled with panic and desperation for some one to help us. The frustration of how so very slowly the wheels of the NHS grind.

I have heard really exciting reports about the Radium 223 and I hope that this can be started soon for Pat.

Keep your chin up , I know how hard it is.

I will be thinking of you on Thur.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Apr 2015 at 11:17

June

I had the maximum six doses of Radium 223. It's an absolute doddle to get - a simple injection in the arm lasting a few seconds. The staff wear protective clothing but it's no more than paper aprons as Alpha particles cannot travel very far. They were quite strict about the appointments (although I was technically on a trial). One injection every 4 weeks up to a max of 6 (this is being reviewed in the light of ongoing trials). I had zero side effects and the vast majority of people who have received radium are the same. The worst thing was having to change my underpants every day as I only had 12 pairs with the month neatly stitched inside http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

It's important to know that Radium 223 tends to have no effect on PSA. The important thing is the DNA damage it does to the PCa cells in the bone but don't rely on PSA as an indicator of success. I was asymptomatic going into treatment but some of the other guys were in a lot of pain and got great relief from the injections. Another point to bear in mind is that the effects of the treatment continue long after the course is finished - six months at least they reckon.

Good luck, keep us posted and ask me anything you like http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Edited by member 04 Apr 2015 at 11:18 | Reason: Not specified

Nil desperandum

Allister

User

Posted 04 Apr 2015 at 15:03

Edited by member 08 Apr 2015 at 10:57 | Reason: Not specified

User

Posted 06 Apr 2015 at 10:19

Hi, June,

I've just read your posts and haven't an answer to your question but just wanted to say I totally understand the panic and the pain you are going through for your OH. I'm thinking of you and wishing you measure of peace and pain-free'ness, for both you and your OH as you wait for what will P.G. be a wonderful, relieving and long-term remission-inducing treatment.

Steph.

User

Posted 06 Apr 2015 at 15:50

Hi, I'm on RA223, more information in my profile.

I've had 4 of the 6 monthly treatments. I was on enzalutamide but as PSA was rising and bone pain increasing I had two external beam radiation treatments on the hips and pelvis and then started on RA 223.

I have continued with Zometa each month and expect to restart enzalutamide when RA 223 finishes. I also have 3 monthly LHRH injections.

My start on RA223 was delayed a couple of months by the worldwide shortage caused by a manufacturing glitch. The main side effect is fatigue. You have to be very careful for first 7 days. We were stopped at channel tunnel due to high level of radiation in the car, so carry the letter they give you when travelling which explains your treatment.

The RA 223 has to be carefully drawn up based on weight. And seems to require a small team to deliver it and handle the syringes etc which all have to be kept securely until the radiation has decayed over about 6 months. You'll need a blood test just before it is delivered to check for any abnormalities. So I wouldn't expect to have it on the day of your next appointment. But once agreed it should be given within a week or two I would hope. There are a limited number of places approved to give it so some people have to travel long distances for each treatment.

It has a cumulative effect so benefit may not be immediate and probably won't cause drop in PSA. My PSA has dropped slightly between 3rd and 4th treatment. But more importantly the alkaline Phosphatase level in my blood dropped to within the normal range after the second treatment. This is a measure of cancer activity in the bones and is the measure my consultant is most concerned about.

I would speak to the team you are due to see and ask them what the next appointment is for. Do you need a blood test first and when will the first RA 223 injection be given. Tell them what you expect and they will tell you what they can provide. Be direct and demanding if you are not satisfied. You may be able to find the email address for your consultant on line, they may be prepared to email you. Although don't expect an instant reply and it may get intercepted by a secretary. My experience is that the medical staff are prepared and keen to help if they can. Maybe I've just been lucky.

Best of luck, hope the treatment gets going soon and the results are positive.

Let us know how you,get on.

All the best

Martin

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