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Radium 223 - the highs and the lows

User
Posted 31 Oct 2017 at 10:12

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

User
Posted 31 Oct 2017 at 17:11

David, I do hope your bloods recover well and hence no more expelling the stuff from your lungs. It sounds like the side effect one sometimes gets from blood thinning medication, which is reversible. Hope yours is too. Regarding the kidney cyst, benign interlopers like this are not uncommon at our age. I have one myself, which has never changed size in well spaced scans, so I just live with the blighter.

Keep your pecker up mate ( perhaps a different phrase might have been apposite)......

AC

User
Posted 31 Oct 2017 at 18:55
So sorry for not replying earlier I have been so wrapped up in my own Woes.

I am thinking of you and keeping everything crossed that the results will be favourable , Trevor had the kidney scan a few weeks ago and it was benign just a simple cyst.

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 31 Oct 2017 at 19:57
Sorry to hear your news from latest update David. Hoping things improve for you over the next few days and weeks. Best wishes, Ian.

Ido4

User
Posted 01 Nov 2017 at 14:58

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.

User
Posted 01 Nov 2017 at 15:25
Bloody hell Dai boy sorry to hear your current news, you’ve been a source of inspiration and information for me since I joined in Feb 2017– long may it reign??
Valleyboy.
User
Posted 01 Nov 2017 at 15:55

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

User
Posted 01 Nov 2017 at 16:18
Hi David, a rough meeting indeed and understand your emotions.
I know you can't "think yourself" better and I have no idea how your current situation incapacitates you but hope that there is something that stimulates you so that you can find some enjoyment in every day.
Sending you positive thoughts
Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 01 Nov 2017 at 16:51

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.

User
Posted 01 Nov 2017 at 16:58
Hi David
Sorry to hear you’re not too well at the moment,my dad had a really rough patch pain wise in May and was prescribed longtec and shortec,these have managed the pain really well. He now has the longtec 12 hours apart and it helps him through the day and to have a comfortable night. For him the paracetamol ibuprofen nor cocodamol were touching it. Hope you see some improvement in pain management soon.
Viv




Look for something positive in each day even if some days you have to look a little harder
User
Posted 01 Nov 2017 at 17:18

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.

Ido4

User
Posted 01 Nov 2017 at 18:04

Hi David,


sorry to see the latest news ,


Just a thought is there a reason you never got Abby Tabs


Barry

User
Posted 01 Nov 2017 at 18:19

Barry, yes, I had Enzo. It did well by me.

User
Posted 01 Nov 2017 at 18:23
Hi David ,
Slow release morphine really helped Trevor at XMas last year .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Nov 2017 at 22:08

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

User
Posted 03 Nov 2017 at 20:48

Zomorph (10mg) prescribed by GP yesterday, to be taken twice a day, and Oramorph (5ml) prescribed by GP yesterday, all of which resulted in a decent night's sleep. Hospicecare pain control nurse visited today, provided loads of really useful information and left Mrs_C and I with the assurance that we will receive support during what is to come. The visit established the support network and I would recommend anybody approaching the final stages of the disease to also do the same.

User
Posted 03 Nov 2017 at 22:26

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

User
Posted 03 Nov 2017 at 23:44

So pleased that your GP is sorting out the pain David, and that you are linked up to the palliative care team. Hope they continue to take good care of you and Mrs C. - it is a comfort to know that they are there with all their experience and understanding. Sweet dreams tonight... hope that sleep and less pain will help you recover some of your joie de vivre - and maybe even your taste for good beer.


May your nostril hairs grow ever longer.


Hugs


Ruth x


 

User
Posted 04 Nov 2017 at 07:45

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

User
Posted 05 Nov 2017 at 01:32
Graham had short tech and long tech and so long as it was administered on time (I.e, if he was at home and not in the hospital) it worked really well. We had the full support of our hospice at home team and our community nurse and they were absolutely wonderful - a complete contrast to the care graham received in hospital. I do hope your team can get your pain controlled soon and we see you back on form.
Sending hugs to you and Mrs C xx
User
Posted 06 Nov 2017 at 18:13

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

User
Posted 06 Nov 2017 at 19:00

Oh Linda, I am sorry to see this. I think I would want to know absolutely that the ward staff are liaising with the oncologist. Any sign of lymphodema? Have they done an ECG? My father-in-law ended up with heart damage caused by his chemo although it was a different type to Col's.

I hope they get to the bottom of it quickly for you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Nov 2017 at 20:03

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.

User
Posted 06 Nov 2017 at 21:19

I am thinking of you - give him my love x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Nov 2017 at 22:05

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

User
Posted 06 Nov 2017 at 23:05

Thinking of you both. I hope they get David better and home soon


Rosy x


 

User
Posted 07 Nov 2017 at 00:01

So sorry to hear this.

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

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 07 Nov 2017 at 05:38
I hope David had a comfortable night in hospital and that they get to the bottom of things today, sending best wishes to you both. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 07 Nov 2017 at 18:52

Update - David is still in hospital. All they are saying is that he has pneumonia (I think we knew that) and is being treated via intravenous antibiotics. The doctor I managed to collar thought he might be out by the weekend, but to me he looks no better. But I suppose he did only go in again yesterday. A consult with the onco is planned for Thursday morning.  She wants to do this in one of her consulting rooms rather than on the ward  as there will be more privacy. I'll go to the hospital and wheel him there myself. 


I've just had a call from one of the nurses on David's ward. She says when he came into the hospital and was in the AMU, one of the people in the same part of that ward as him has tested positive for norovirus. So all the people who were in the same area are being moved from wherever they are now to another ward where they can all be monitored together. I don't like the sound of this. If he gets norovirus on top of pneumonia it would be pretty disastrous.

User
Posted 07 Nov 2017 at 19:19

I do hope he was separated quickly enough to avoid a double whammy, each one when immune system is down, is serious enough. Thinking of you both at this time. Hope there is an upturn soon.

User
Posted 07 Nov 2017 at 23:48

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Nov 2017 at 08:06
Thinking of you both x
User
Posted 08 Nov 2017 at 09:19

Thinking of you both.

Ido4

User
Posted 08 Nov 2017 at 18:54
Don’t know why but I felt a strong urge to drop in tonight I suppose old habits die hard , I am so sorry to read this Linda .
Please send my thoughts and a smiley face to David and tell him I am thinking of him.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Nov 2017 at 21:14
Oh gosh, I felt a srpteong urge to drop in tonight too. I do hope that our Col is ok Linda. You are both in my thoughts xxxx

Love Devonmaid xx
User
Posted 09 Nov 2017 at 13:23

Thanks you all for your kind words, good wishes and support. David is still in hospital. No sign of norovirus thank goodness. But no sign of much improvement either. He's still on oxygen and IV antibiotics. There's seems to be a plan to review things tomorrow and maybe let him out in the next couple of days. We'll see. I don't think there's much more they can do in the hospital. They still don't know why he's so weak and breathless as apart from the slight crackle and the shadow caused by some infection, they can't see or hear anything serious in the lungs.

We had a session with the onco and agreed that, unless and until he improves considerably, he is simply not strong enough for further radium 223. So that's suspended. The same applies to any other treatment options. The onco says that, while he's so weak, anything she might try would probably make things worse.

So we're hoping that things improve over the next few days. If they don't, we're probably looking at palliative care only and no further treatment - effectively handing over to the hospice team and the GP. I think this rocky road is getting shorter........

User
Posted 09 Nov 2017 at 15:13



Have been thinking about you this morning - so sorry that David's not feeling any better and that they aren't sure what to do to assist. It must be so hard dealing with the sudden possibility of no further treatment but I'll keep all my bits crossed that the antibiotics start to kick in and that his strength improves. Sending lots of hugs and hopes for a cheerier tomorrow.


Love


Ruth xxx


 




User
Posted 09 Nov 2017 at 15:32
Sorry to hear David isn't improving yet. Thinking about you both.

Ido4

User
Posted 09 Nov 2017 at 20:41

So sorry to hear this latest update. Just hope things improve soon. Sending best wishes and hope for the best.

User
Posted 09 Nov 2017 at 22:00
Pass on my best wishes to David.... hoping he has a good night tonight.

Kind Regards

Clare
User
Posted 11 Nov 2017 at 13:09

So gutted to read how I’ll David is at the moment. Hoping that he has improved? Holding you both in my thoughts.
Mel x

User
Posted 12 Nov 2017 at 12:48
Keeping all my fingers crossed for David and hoping he improves xxx
Debbie xxx
User
Posted 12 Nov 2017 at 16:43

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

User
Posted 12 Nov 2017 at 17:17

Linda,

I am so sorry to hear that he is so under the weather but I am so hoping and praying he comes through.

Kindest regards and very best wishes to you and David

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 12 Nov 2017 at 17:56

Sounds like your David is a very brave man ,

Barry

User
Posted 12 Nov 2017 at 19:05
Hi Linda
I hope David continues to improve please pass on my best wishes
Si
Don't deny the diagnosis; try to defy the verdict
User
Posted 12 Nov 2017 at 23:57

Hi Linda


My heart goes out to you both. Must be so difficult to carry on as normal when David is so low and things are so up in the air. But so pleased to hear that David was able to get out of bed and eat some food today. Fingers and toes crossed for a repeat performance tomorrow. And hope the hospice team get involved - they made such a difference to our stress levels, and, for a long time, to our sense of hope.


Will be thinking of you - hope you both get some sleep tonight and that tomorrow brings good news. Much love.


Ruth xxx


 


 

User
Posted 13 Nov 2017 at 08:20

Just sending love
Mx

User
Posted 13 Nov 2017 at 17:03

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.

User
Posted 13 Nov 2017 at 17:51

Sending love and hugs at what must be a very difficult time. Take care.

 
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