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Radium 223 - the highs and the lows

User
Posted 03 October 2017 10:15:14(UTC)

This thread follows on from my previous threads:

http://community.prostatecanceruk.org/posts/t12197-Docetaxel-Chemo---the-highs-and-the-lows#post152202 

and

http://community.prostatecanceruk.org/posts/t12891-From-docetaxel-to-------the-interregnum#post159593

On 10/10/17 I will be starting up to 6 x 28 day cycles of Radium 223. I am going to keep a log of my experiences. For brief details of the treatments I've had to date, click on my name. Whilst I'm not yet quite supping at the Last Chance saloon, Radium 223 is the last of the major conventional treatments available for my advanced prostate cancer.

I start Radium 223 in poorer physical condition than was the case just 6 months ago. Then I was going to the gym 3 times a week; now that is no more. I was playing croquet and was able to play for many hours per day; again that is no more. The major reason for this degredation in quality of life has been the development of bone pain in my back over the last month or so. I have constant bone pain in my right hip, lower back, middle back and left shoulder. This is related to the bone mets I have in these areas. I am keeping reasonable control of this pain through the use of Paracetamol, Ibuprofen and Naproxen plus a placebo known as Real Beer. The pain in the left shoulder has been partially relieved by a recent session of RT.

So this is the baseline I start from and against which I will judge the success or otherwise of Radium 223 treatment.

 

 

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User
Posted 07 December 2017 18:27:11(UTC)

The emotional roller coaster goes on - sometimes fairly upbeat, often anxious, jittery and tearful, but I'll get there. As you say Julie - normal changes from day to day. Everyday things such as cooking for one rather than two take some getting used to.

The various authorities are being very helpful. As no doctor in our practice had seen David in the period before his death, our GP had to get agreement from the Coroner's Office before he could issue the Certificate of Cause of Death. The Coroner's Office not only agreed without delay (so I now have the Certificate) they called me to let me know and also must have notified the Registrar. I didn't have to call to get an appointment, the Registrar called me to arrange it for next Monday. So sometimes the system works!

I have received loads and loads of cards and letters from neighbours and friends, especially from the croquet club and, of course all your lovely posts on the forum. Many lovely words of sympathy and support. The same words about David have cropped up time and again - kind, generous, encouraging, welcoming, helpful, lovely man, patient, enthusiastic. I think he might have blushed a bit! But they are all true.

The funeral/cremation is arranged for the week after next - that will be small and private. But I plan to organise a get together for friends and family towards the end of January to celebrate David's life, not mourn his death.

This will probably be my last post on this thread. Thanks to you all again for all the support and encouragement you have given me. It is much appreciated.
Love to you all
Linda

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User
Posted 01 December 2017 16:40:18(UTC)

Although David found the journey very tiring he is now in his room in the nursing home. I visited just for a few minutes to make sure he was alright. He was very sleepy so I left him to rest quietly.

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User
Posted 06 October 2017 18:59:22(UTC)

Don't worry Julie, I'm not giving up. I remain in good spirits and intend to stay that way.

For me quality of life is everything, quantity of life is unimportant. I want to live and enjoy what remains of my life as well as I can. I love living with and loving Mrs_ColU but when quality of life becomes really compromised then I see little point in continued existence.

I've said it before, Mr Spock is my hero. I have his logical, green, vulcan blood in my veins. He'd understand where I'm coming from.

All that said, this old dog is still barking, wagging his tail and drinking his beer. And he'll drink a few more yet.

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User
Posted 03 October 2017 16:40:52(UTC)

Will be thinking of you. Take care.

Rxxx

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User
Posted 03 October 2017 18:32:26(UTC)

I wish you all the best for this treatment and look forward to hearing your progress. Thank you so much for your previous 2 threads which have been very helpful.

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User
Posted 03 October 2017 19:49:38(UTC)

All the very best wishes to you David in the next part of your journey

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
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User
Posted 03 October 2017 19:50:29(UTC)
Hi
John is going to have his third injection in two weeks. His ALP has dropped to 48 but his PSA has gone up to 42. He finds he feels exhausted for a week after his jab and often looks an awful colour. He has to rest, there is no way round it and sometimes he has to have a day of total bed rest. He suffers from constipation (mainly from a previous round of RT). This is a common finding, some times it’s the runs, but hey ho. I wouldn’t say that he feels any better overall but we will see what the bloods say next week

The jab itself is fine, and the protocol in Oxford is to attend a clinic the week before for a review and to review the whole process after three months.

Good luck, I hope it helps, I’m sure it will. Looking forward to seeing your updates

DM
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User
Posted 04 October 2017 06:59:49(UTC)
Hoping this works for you David

All the best,

Arthur

To quote a phrase from a telly programme, but not quite - Keep on .........drinking (real beer that is)
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User
Posted 04 October 2017 10:32:14(UTC)
Good luck with the Radium 223. My dad has been refused it but I'd be very interested to hear how you get on with it. Thanks for your previous advice relating to my dad. It enabled me to research the options and ask the consultant about them. He refused them all but at least I tried. He has now been ejected from last chance saloon but I hope it's a long time before you get there
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User
Posted 04 October 2017 11:19:40(UTC)

Thank you Scabbycat.

I hope your Dad is starting to adjust to and accept what his Onco told him a couple of days ago. My Onco will give me the same message sometime in the future. I'm not going to pretend that I'll welcome that message when it comes but the logical part of me may just breathe a small sigh of relief when I swap:

taking bloods and the associated tests, waiting for the results, attendance at hospitals for appointments and scans of all the various types, the rigours of treatment and all the prodding and poking that will accompany the development of complications

for

we're going to keep you as comfortable as we can for as long as we can and we're going to make the process of passing on as non-traumatic as possible.

There may be a kind peace to be found in that.

User
Posted 06 October 2017 18:28:12(UTC)
Phew David ,
Your last post and words definitely struck a chord with me I know I am known as the joker of the pack but if it was for myself then I think I would feel immense calm at saying “I don’t want to play anymore “ .
I think it would for me be A taking back control moment a “ I am going home and taking my ball with me “ kind of feeling.

Of course then there are the Trevor types and trust me if anyone even tried to get him near the door of The Last Chance Saloon well then you would have a major fight on your hands.
Because he will never accept defeat.

We are all different , all unique and I just want to end on this upbeat thought.
We are 2 months away from our start of Raduim 1 year Anniversary , still going and still here ! Battered Bruised But still here. 🤗
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 06 October 2017 18:59:22(UTC)

Don't worry Julie, I'm not giving up. I remain in good spirits and intend to stay that way.

For me quality of life is everything, quantity of life is unimportant. I want to live and enjoy what remains of my life as well as I can. I love living with and loving Mrs_ColU but when quality of life becomes really compromised then I see little point in continued existence.

I've said it before, Mr Spock is my hero. I have his logical, green, vulcan blood in my veins. He'd understand where I'm coming from.

All that said, this old dog is still barking, wagging his tail and drinking his beer. And he'll drink a few more yet.

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User
Posted 06 October 2017 19:50:35(UTC)
Originally Posted by: Online Community Member

I love living with and loving Mrs_ColU



What a lovely thing to say x

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


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User
Posted 06 October 2017 20:27:36(UTC)
So another Trekkie you and Trevor would make a great team .
For me it has to be Buz Lightyear !
To Infinity and Beyond ! To Infinity and Beyond my friend.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 06 October 2017 20:54:59(UTC)

Thank you for this post and your total honesty. I believe I walk in your shoes but maybe not as far yet. I’m totally QOL based and I know that won’t change having nursed many end of life patients now in my new temporary job. Not sure I’ll even stretch to Chemo tbh. I think only pain itself will decide my treatment path , as no-one likes pain.
All the best
Chris




If life gives you lemons , then make lemonade
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User
Posted 07 October 2017 07:30:23(UTC)

Originally Posted by: Online Community Member
So another Trekkie you and Trevor would make a great team.

In that case Trevor will understand why I liken PCa to the Borg. The problem with the Borg was you'd zap one with your phaser and down he'd go and then zap another one and he'd go down as well and then they would adapt and the phaser was no good anymore so you had to find a new weapon or the Borg would get you. Just like PCa.

Live long and prosper.

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User
Posted 07 October 2017 07:40:30(UTC)

Originally Posted by: Online Community Member

I’m totally QOL based and I know that won’t change having nursed many end of life patients now in my new temporary job. Not sure I’ll even stretch to Chemo tbh. I think only pain itself will decide my treatment path , as no-one likes pain.

Don't discount chemo yet Chris. Read my Docetaxel highs and lows thread before making that decision. Chemo can relieve bone pain. For me, chemo wasn't a problem until I got pneumonia.

Keep an eye on my experiences with Radium 223 as well. It's also meant to be good for bone pain.

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User
Posted 07 October 2017 13:42:44(UTC)

I just understand your view absolutely. When I first read it I simply thought yes that’s my future too. You delay as long as your life is reasonable and then that point is reached. The inevitability takes away the sting. I feel lucky I have had much longer than predicted but never forget that moment will come. It’s harder to prepare family and friends.

It’s not a morbid thought, it’s simply the natural passage of time. Unless another disease or illness intervenes it keeps at least a sense of order to the future.

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User
Posted 08 October 2017 12:24:23(UTC)

Masochists do. 

Sorry, I just couldn't resist.

I'll get me coat.

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User
Posted 08 October 2017 17:52:15(UTC)
Originally Posted by: Online Community Member

Masochists do. 

Sorry, I just couldn't resist.

I'll get me coat.



Reminds of of Dave Allen I think...

A masochist asked a sadist to hurt him... the sadist said no

I’ll get my coat as well
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User
Posted 10 October 2017 18:42:36(UTC)

First Radium 223 infusion administered today.

I will report on any changes in my health, good or bad, as they occur. Therefore, no report means nothing has changed.

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User
Posted 10 October 2017 23:04:06(UTC)
I suppose my first question would be did you have the infusion in what Trevor described as a broom cupboard and did they use the Geiger counter ?
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 October 2017 07:49:10(UTC)

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.

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User
Posted 11 October 2017 07:59:11(UTC)
I hope the whole experience goes well for you and that you get a good outcome.

Kind regards

Kevan
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User
Posted 11 October 2017 11:46:37(UTC)
Sounds like you’re off to a good start David.

Long may it continue.

Arthur
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User
Posted 12 October 2017 22:58:57(UTC)
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
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User
Posted 14 October 2017 10:05:42(UTC)

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 October 2017 11:38:19(UTC)
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 October 2017 12:24:10(UTC)

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. 

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 October 2017 09:10:08(UTC)
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 October 2017 11:24:15(UTC)

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 October 2017 14:06:45(UTC)

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.

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User
Posted 17 October 2017 05:09:58(UTC)
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.

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.



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 October 2017 07:32:39(UTC)

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

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User
Posted 18 October 2017 08:26:18(UTC)

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.

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User
Posted 18 October 2017 11:10:30(UTC)

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.

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User
Posted 22 October 2017 10:04:32(UTC)

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.

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User
Posted 22 October 2017 11:44:09(UTC)

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 October 2017 12:10:30(UTC)

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 October 2017 15:08:17(UTC)

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

Ian.

User
Posted 22 October 2017 20:01:56(UTC)
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
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User
Posted 23 October 2017 06:51:36(UTC)

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.

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User
Posted 30 October 2017 19:13:31(UTC)

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.

User
Posted 30 October 2017 19:39:17(UTC)
Very sorry to hear this news as I was hoping that the bleed would have stopped. Hopefully when you have had the bronchoscopy and spoken to the oncologist the picture will become clearer and you can then review your options.
All the very best.

Kevan
User
Posted 30 October 2017 20:46:59(UTC)

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

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


User
Posted 30 October 2017 20:49:28(UTC)

Tough news David - so sorry. Must be hard to stay optimistic when you are feeling so rough. Hope that the meeting with the onco offers some clear options and gives you something positive to hold on to. Will be thinking of you as ever and sending lots of love. Maybe beer will help?

Hugs

Ruth xxx

User
Posted 31 October 2017 06:51:50(UTC)

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

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 31 October 2017 08:02:49(UTC)
You have ha d a rough time mate, really hope that some good stuff comes your way very soon
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
User
Posted 31 October 2017 08:32:02(UTC)

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

User
Posted 31 October 2017 08:59:03(UTC)

Hello Dave. Sorry to read your update. Don’t lose heart I know it’s tough to keep spirits high and upbeat at these times. We are all routing for you.
Yvonne

User
Posted 31 October 2017 09:25:24(UTC)

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

User
Posted 31 October 2017 09:25:42(UTC)

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

 
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