Radium 223 - the highs and the lows - - Page 2Advanced or metastatic cancer

User

Posted 11 Oct 2017 at 07:49

It was a normal office, no lead on the walls and the Doc and his techie were dressed normally.

The first question I asked them, having read of Trevor's experiences, was "are you going to wave a Geiger counter over me?". They seemed amused by this and said any use of a Geiger counter would be for their protection rather than mine.

Mrs_C and I found the whole process of the infusion and the willingness of them to deal with all our questions made the appointment a simple and non-traumatic experience.

User

Posted 11 Oct 2017 at 07:59

I hope the whole experience goes well for you and that you get a good outcome.

Kind regards

Kevan

User

Posted 11 Oct 2017 at 11:46

Sounds like you’re off to a good start David.

Long may it continue.

Arthur

User

Posted 12 Oct 2017 at 22:58

WHAT NO GEIGER COUNTER ! I can’t beleve it 😱
Was it even Raduim ?

That’s like the Enterprise withought it’s Force Field 😄

Spock would be horrified.

BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Oct 2017 at 10:05

Update time.

The most common side effects of Radium 223 are diarrhoea, nausea and increased pain.

I've had no problem with diarrhoea or nausea.

I think I've had increased pain yesterday and today. This seems silly. How can I think I have increased pain? The problem is it's marginal. It's difficult to judge whether I'm feeling the same or worse. I also recognise that I want to feel worse so there is the psychosomatic effect to consider. That seems silly as well but I'm aware that increased pain is normal and often indicates that the treatment is working.

So it's down to patience and waiting and seeing. One things for certain, I don't think I'll have any problem recognising a reduction in pain.

User

Posted 14 Oct 2017 at 11:38

Well I guess that it must be quite a relief not having suffered two of the possible common side effects and if I read you right you won't be too upset with the increased pain if it indicates the treatment could be working.
I understand your thinking which, having read many of your posts, I find quite disturbing.
As you say, you can only wait and see what happens.

Do you glow green in the dark ? That would be pretty cool with Halloween approaching😱

User

Posted 14 Oct 2017 at 12:24

Originally Posted by: Online Community Member

if I read you right you won't be too upset with the increased pain if it indicates the treatment could be working.

Correct.

Originally Posted by: Online Community Member

I understand your thinking which, having read many of your posts, I find quite disturbing.

I'm sorry about that, maybe I'm just too open about my feelings. We Vulcans are like that. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Originally Posted by: Online Community Member

Do you glow green in the dark ? That would be pretty cool with Halloween approaching😱

LOL. Nice one.

User

Posted 16 Oct 2017 at 09:10

You sound just like John, He thinks he has more pain but he hasn’t increased his painkillers. He does have hideous bladder spasms that take over his life so maybe in relation to that it is hard to judge.

We are going for the third one tomorrow after seeing the consultant last week. We don’t know the latest PSA (which we will find out tomorrow) but the last two have shot up to 42, so expecting an increase and further treatment as doc said she didn’t want it shooting up. John is talking about refusing chemo but has promised to speak to the consultant before he makes that decision.

Good luck

Devonmaid

User

Posted 16 Oct 2017 at 11:24

DM,

I'm pretty certain now the pain has increased, I had a poor night last night and took Ibuprofen followed by Paracetamol a couple of hours later after which I managed to get some sleep.

I'm a wimp. I will be keeping on top of the pain in the next few days with regular Ibuprofen and Paracetamol whilst I wait in hope for the benefits of Radium 223 to cut in.

I am of the same mind as John regarding further chemo. I hope your Onco has another solution to the rising PSA. How are John's ALPs? It's the ALPs that determine how well or not the Radium 223 is working I believe.

User

Posted 16 Oct 2017 at 14:06

No way a wimp regarding pain. If you take relief in good time the pain is evened out instead of the peaks you get if you only take pain relief when in severe pain. I know this but was slow to implement this a couple of weeks ago when I had some severe pain before I got a pain regime going. Thankfully it has receded now, not sure it’s origins though. Interesting thoughts too about chemo from Devenmaid and yourself. It still in my box of tricks after enzalutimide but can’t help thinking getting it when I feel weaker, with uncertainty of success may just bring me months of feeling below par with little protective benefit. I will watch this discussion with added personal interest.

Hope you get positive news on the RADIUM 223 soon, it will give you a great boost.

User

Posted 17 Oct 2017 at 05:09

Originally Posted by: Online Community Member

DM,

I'm pretty certain now the pain has increased, I had a poor night last night and took Ibuprofen followed by Paracetamol a couple of hours later after which I managed to get some sleep.

I'm a wimp. I will be keeping on top of the pain in the next few days with regular Ibuprofen and Paracetamol whilst I wait in hope for the benefits of Radium 223 to cut in.

David,

As you are aware I am on my 2nd session of Chemo, completing infusion 10 today which is the 2nd cycle of this current session. Bone pain all gone and hopefully PSA coming down, with very few side effects this time. I really do not have any issues with recommending Chemo.

Hope the Radium 223 does it's job, but maybe a further session of Chemo will be good for you, what do you think?

Best wishes to you David

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 17 Oct 2017 at 07:32

Originally Posted by: Online Community Member

maybe a further session of Chemo will be good for you, what do you think?

Dave,

Whether or not I would have further chemo will be solely determined by what my Quality of Life (QOL) was like at the time it was recommended by my Onco. If my QOL is good, I'd have further chemo without a quarm. If my QOL is poor, I would have serious doubts and would need convincing that there was more to be gained than lost. As I've said before, QOL is everything, extending existence for no other reason than putting off the evil day is of no interest to me.

It's good to hear you are going well.

David

User

Posted 18 Oct 2017 at 08:26

Pain management

I love my GP. If he wasn't the same sex as me I'd want him to have my babies.

Sunday and Monday nights were bad, little sleep due to low level pain breaking through the Ibuprofen and Paracetamol.

So yesterday I rang the doctor that administered the Radium 223. He questioned me about the pain and satisfied himself that it was nothing to do with spinal cord compression. He thinks the pain increase, although arriving a little earlier than expected, may be tumour flare (hooray). He hopes that it will start to ease after one week following which he hopes the benefits of the Radium 223 will start to kick in and that I'll start to see a reduction in pain. He said "we can't have you in pain and without sleep for the next week or so, therefore we should increase your pain medication, perhaps Codeine or Tramadol, pop along and see your GP".

So I book an appointment for yesterday afternoon. Now I've never taken anything stronger than Naproxen so I look up Codeine and Tramadol on drugs.com. Eeeeekkkkk! Don't like the sound of these babies!

GP appointment. Explain the build up in pain, how I've been treating it, what my radium doc has said, lack of sleep and what I've learnt about Codeine and Tramadol.

GP says "we don't like using Tramadol unless we have to, Codeine is good because we can titrate it, but hey you're not using the maximum daily dosage of Ibuprofen and Paracetamol as yet, until you are we don't need to consider Codeine, but you need a good night's sleep, I've got just thing for you my son, get some Nytol".

So I did so. The result, I slept like a baby last night.

I love simple solutions.

Edited by member 18 Oct 2017 at 15:52 | Reason: Not specified

User

Posted 18 Oct 2017 at 11:10

My onco does not like tramadol. I used it for tumour flare and it put me into a strange state, pain relief but felt spaced out all Day and strong dreams at night. My recent pain episode I had oxynorm and longtec, variations on the same drug, one 12 hour delayed release, the other oxynorm, taken inbetween as immediate acting. They worked well. Codeine has constipation as a major side effect. Difficult choices as ever. Good luck.

User

Posted 22 Oct 2017 at 10:04

Bad news

Got up Friday morning, off to wash, coughed, spat into basin, foook me that's blood! Also found that after a couple of very minor collisions where items of furniture had leapt out and tried to assault me, that I'd developed severe bruising of a colour that any Roman Emperor would be proud of (dramatic looking but not painful). Get on phone to radium doc, explain what's happened, he thinks this isn't caused by the radium but says go see your GP. See GP (not my usual one) she listens to my chest and is reasonably happy but says we're taking bloods. We will contact you if anything is wrong.

Got up Saturday morning, off to wash, coughed, spat into basin, foook foook foook, that's more blood than yesterday! Rang 111, they put me onto Devon Doctors (the out of hours GP service), the doc asks lots of questions and says she is concerned it could be a blood clot(s) in the lungs, get your sorry arse down to us at the RD&E. Do so, lots of questions, more bloods taken and referred on to the Ambulatory Medical Unit. See doc after a couple of hours, lots of questions, she says the bloods are OK apart from the platelets which are down to 95. The low platelets explain the extreme bruising. She also fears a blood clot and sends me for an CT scan with contrast. Canula fitted. Scan done at 3.30pm. Wait for results. Doc comes back at 6.30pm and says "good news, no blood clot". She believes the combination of the PCa, the pneumonia I had this summer, the chemo and the RT has damaged the lungs. She advises that I am very cautious during periods when my platelets are low. She believes the oral blood will correct itself once the platelets rise again. I will quiz my radium doc on typically when in the 28 days radium cycle that the platelets are low. I am equating this with the neutropenic period one has each cycle when on chemo.

Good news

I'm pretty confident now that my bone pain is reducing. The radium may well be working. I have reduced the pain killers and hope to trial with no pain killers in the next few days.

Lessons for those that follow me

Make sure you understand when your platelets may be low in each cycle and take extreme care of yourself.

Trust that the radium will reduce your pain.

User

Posted 22 Oct 2017 at 11:44

Oh dear - did they also look at why you might be coughing in the mornings? Fluid collecting on the lungs while you are laid down?

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

User

Posted 22 Oct 2017 at 12:10

They didn't. I have had a minor crackle in the lungs when lying down since about half way through chemo. There is a small amount of, mostly white, phlegm that I sometimes expel. I have mentioned the crackle to a couple of my docs and they have never seemed concerned by it. BTW I'm a non-smoker, I packed up in May 2005.

User

Posted 22 Oct 2017 at 15:08

It's good that the blood your coughing up isn't caused by a clot, hope your platelet count recovers soon.

Ian.

Ido4

User

Posted 22 Oct 2017 at 20:01

Oh David ,
This is such a rocky road isn’t it , some one once wrote on hear about the rocky toad and the boulders that we have to face Lyn will know who I am referring too .

I don’t make this common knowledge but my elder brother moved to Wales many years ago and has raised his children and know grandchildren in
Pembrokeshire so I have a whole army of family waiving you on from the Valleys .

BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Oct 2017 at 06:51

Originally Posted by: Online Community Member

some one once wrote on hear about the rocky toad and the boulders that we have to face Lyn will know who I am referring too .

I'm guessing that will be spursspark.

Edited by member 23 Oct 2017 at 07:46 | Reason: Not specified

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Radium 223 - the highs and the lows

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