Radium 223 - the highs and the lows

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.

I hope you get on top of things soon David. Sadly too many of us have had meetings like the one you describe where the doctor isn't up to speed. I realise they are very busy but it doesn't half knock you when you feel they haven't read your notes thoroughly and had a proper think about what to do next. Hope all of this sorted soon. As others have said you have been an inspiration and posting your experiences of the various treatments to help others has been very useful I'm sure. Best wishes, Ian.

Hi David

Tony was prescribed Longtec (3 per day) which was excellent. He also had slow-release morphine in the house which the district nurses would pop round to give him if there was a spike in pain - invariably at 3.00am on a Saturday night! That combination of a regular dose plus an emergency option kept the pain under control and lessened anxiety levels too. The palliative care team sorted it all out for us. So glad that you are connected up to them, they really seem to know their stuff.

Rx

Pleased to hear that support is there for your pain and hope it really helps. Best wishes.

Good luck David with continued pain relief. Not looking forward to that stage at all. Ask for some Zopicline too. Not a sedative but helps get off to sleep

As always, it's one step forward (pain under control) then one step back (system lockdown despite Laxido etc). So we went to see the GP (not David's usual GP at such short notice) to see what could be done to deal with the constipation. We agreed a way forward with that (up the Laxido doses) but he then took some obs (temp, BP, Sats, etc) and found that the Sats were very low - mid 80s. So he consulted with David's usual GP and they decided that this was sufficiently concerning to warrant investigation in hospital.

So we pack a bag and drive over to Exeter to the AMU (Ambulatory Medical Unit). And that's where he is at the moment. He may be out tomorrow. Or he may not.

I've been worried for some days that, despite completing the course of antibiotics he was given for the pneumonia, the weakness and breathlessness after any effort at all was getting no better - in fact it seemed to me to be getting worse. But various medicos have listened to his chest and heard nothing untoward apart from the slight pneumonia crackle. And various medicos have looked at scans and x-rays and can't see any clots or lesions. So I can only hope that they find a cause that can be dealt with.

Fingers and toes crossed.
Linda

Hi Lyn

David was supposed to be having a telephone conversation with his onco today, but then ended up in the AMU which is less than 100 yards from the Oncology department. I went round there to talk to the onco's secretary and explain the situation. I'll update her tomorrow. Knowing David, he won't let them forget about that side of things. I don't know about lymphodema - no-one's mentioned it. But they have done an ECG and blood tests. The hospital rang to tell me he's been moved from the AMU to a ward. Hopefully I'll find out more tomorrow.

So sorry to hear this Linda. Will be thinking of you and keeping all my bits crossed that they find out what's wrong and get it sorted. Please send David a hug, and one for you too!

Rxxx

So sorry to hear this.

Please send on my warmest regards and best wishes to David.

Dave

Horrible to have the worry that being in the hospital could make him more poorly! Let us know what the onco says tomorrow - we are thinking about you x

Thinking of you both.

I don’t know where I am at the moment. Sometimes crying, sometimes near to tears, mostly trying to carry on as normal – going to the gym, shopping, getting out for a game of croquet, for example. People up at the croquet club and here where we live were asking after him and I told them the truth (which probably didn’t make their day).

Yesterday David was the worst I’ve ever seen – confused, semi-conscious, eating very little and then only if spoon fed. Sats very low and the nurses were concerned – got the doctors to see him and switched from the nasal tubes to a mask. I honestly feared that he might be near the end and got little sleep. This morning I called the Hospicecare support line and asking when and if they might get involved. The nurse I spoke to advised asking about getting the Enhanced Palliative Care Team from the hospice (based at RD&E) involved if I thought it was needed.

But today when I went in he was brighter and sitting in a chair – not massively brighter but definitely more compos mentis although still very weak. Conversation is an effort. The mask was gone and he was back on the nasal tubes. And he was eating more – he ate half the lunch that they brought and unaided. The nurses had given him a shower, which made him feel better. He had been seen by the consultant yesterday. The upshot is that he has been switched to stronger antibiotics to combat the pneumonia and has had 3 IV doses so far. If these work, they expect to see results by tomorrow. If they don’t, I fear there’s not a lot left in the medical box of tricks – David did say that he suspected some of what they said was what they thought he wanted to hear, not necessarily the absolute reality of the situation. They’ve also upped the pain control medication – increasing the Zomorph and supplementing with Oromoph and paracetomol as and when needed. His BP was low and they may stop the Amlodipine. When I left today (at about 1.00pm) he was back in bed, comfortable and ready for a nap. I’m going see him tomorrow – hopefully the medical team will have assessed the situation and we’ll have a better idea of where we are.

Edited by member 12 Nov 2017 at 17:42  | Reason: Not specified

I thought David was a little better today until I saw him try to move. Even the getting to the side of the bed to transfer to the chair was not possible without help. Sats are still only maintained while on oxygen and they prefer him to use the commode (which he does not like) rather than try to get to the toilet. But mentally it’s all still there. The doctors arrived on their rounds while I was there and he had a list of written questions for them. He was really trying to find out where we are in the treatment process and when will it be palliative care only. There were, unsurprisingly, no definitive answers but my summary is:

The bloods don’t yet indicate that the new Auntie B’s are having any effect but they say the bloods can lag behind what’s really happening and he does seem more mentally alert and able to converse.

They want to give the stronger Auntie B’s a couple more days. After that they say the microbiologists may be able to come up with something, but to me it sounds as if straws are being clutched at.

He doesn’t seem to be having any undue pain – so the meds seem to be effective there. But he's clearly feeling some discomfort in the back and the nights are worse with no distractions to take the mind off what’s going on.

And the immobility is taking it’s toll – whether it’s lying in bed or sitting in a chair, after a while he needs to change position and relieve the pressure, although there is no sign of pressure sores. Also worse at night I would guess.

He is eating – usually a third or a half of what’s put in front of him. And the
plumbing, with the help of Laxido, seems to be OK, although reflecting the reduced input.

I’m feeling a bit helpless. I go in every day. A gentle back rub or back scratch seems to be really comforting.