Radium 223 - the highs and the lows

Admitted to hospital from 24/10/17 to 28/10/17 with further bleeding from the lungs. IV antibiotics followed by oral. Meeting with Onco tomorrow. Further Radium 223 treatments now suspended pending platelets recovering and a general improvement in health. GP concerned by lung bleeds and is talking bronchoscopy if bleed doesn't cease in next 7 days. What with a suspect cyst on a kidney which the Onco thinks may be kidney cancer but is asymptomatic and a rising PSA and bone pain, I'm starting to doubt whether further treatment is worthwhile.

That's a blow - fingers crossed the onco has a brilliant plan C in mind.

David,

I am very sorry to hear your latest news, but looking forward to you telling us of an improvement in your situation in the next few days.

Chin up

Dave

So sorry to hear this. Sending my best wishes and hope they can come up with a plan that works for you,

David,

Just saw your updates. That's a bit of a bugger. Wish you all the luck with the treatment and try not to stop the craft beer!

Steven

Oh David
I haven’t been around for a few weeks as John has been really quite well on the Radium since the third one and we’ve been making the most of some returning energy. His ALP was 68 at the last count but PSA continues to rise, though this time only from 42 to 44 so that’s a turn up after the last few largish jumps.

I wish there was a magic wand to help you, kidneys have been more of a problem for John than anything else, so I hope the cyst is benign. This such a difficult time, I am hoping the oncologist has a plan for you, but it does sound like you need to recover from the low platelets.

Thinking of you my friend
Devonmaid

Edited by member 31 Oct 2017 at 17:26  | Reason: Not specified

Thanks for all the good wishes. Sad to say, my taste for real beer and indeed any alcoholic drink has disappeared.

We saw the Onco yesterday, it was a disappointing meeting, we saw her assistant who seemed totally unaware of what had happened to me over the past week or so despite having letters from the different doctors I'd seen recently whilst I was admitted.

Upshot of meeting was more bloods in a week, X-Ray of chest and then she hoped she would be able to instruct the second dose of Radium 223 be given.

I'm as weak as a feather, using pain killers, still coughing up blood and to cap it all my PSA has risen from 20.94 on 5/9/17 to 99.18 on 27/10/17. One minor success, ALPs down from 169 on 5/9/17 to 116 on 27/10/17.

Things are not looking good.

It's a bugger this disease - comes at you from all directions doesn't it? Sorry that you are feeling so rough David, and sorry that the onco meeting wasn't more helpful. We rely on the professionals so much, not just to give us information but to give us a sense of control, of being active participants in our health rather than feeling like passive bystanders. You've been so amazing in that regard and, as ValleyBoy says, a huge help and inspiration to others. Do hope you are soon back in the driving seat and, most importantly, that they sort out your tastebuds. Thinking of you.

Hugs

Ruth x

Hopefully, we can get on top of the pain. I have asked my GP to refer me to the Hospice pain management team and I think I will be progressing this with them pretty soon, like tomorrow. Pain killers used so far. Paracetamol, good. Ibuprofen, good but I've been told to stop taking that due to the coughing up blood issue. Codeine, doesn't touch the pain, heaven knows why not. Amitriptyline made things worse, I couldn't sleep.

I have pain in my lower back, hips and buttocks. I think the pain is both from within the bones and neuralgia. Does anyone else have pain in these areas and if so what have you found has helped?

Thanks.