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User
Posted 11 Jun 2017 at 19:58
Hi all

I haven't felt able to post for quite some time due to feeling very fragile. For those who don't know us, hubby diagnosed six and a half years ago, PSA 25, spread to spine, hips and head of femur, lymph involvement, Gleason 10

Treatment history, zoladex, brief flirtation with bicalutimde (disasterous) and then nearly four years on dyethylstillbestrill. Lots of operations due to bladder damage, kidney damage and retention. Now has a supra pubic catheter permanantly. No chemo or any newer drugs, but radiation to specific tumours and prostate last year due to blocking the urethra.

So, it's been a tough ride but with plenty of lovely moments, two weddings and a baby granddaughter made life better than we could have imagined.

Fast forward to now, PSA is on a fast rise again and new lesions in the hip and pubic symphysis found so a new treatment is being considered, initially the oncologist suggested Radium 223 or Chemo but as both have an impact on the immune system and hubby has ongoing and recurrent infections due to the SPC, neither look like good options, though we are waiting to hear (and waiting and waiting, you know how it is). We suspect abiraterone will be the next treatment.

I have always tried to be positive and to be honest, having a Gleason score of 10 we did not think that survival of over six years would be possible. We have an appointment for the 19th with the oncologist so I assume the new treatment will be started then. We have the oedema nurse coming tomorrow since hubby is having a lot of trouble with swelling of the legs, ankles and and feet, presumably due to lymph or possibly kidney disease or heart failure, who knows? We are lucky that we have the support of a hospice nurse to help us with managing pain and other matters.

Anyway, just wanted to document the current situation, I do tend to use this site to document our experiences rather than expect replies. I could go into a lot of detail over the last couple of years and the many lows, but I prefer to leave all that in the past now.

Lovely to see some familiar names here and rather sad to see the numerous new ones.

Devonmaid

User
Posted 23 Jun 2017 at 23:53

Hi Devonmaid,
well what a difference and haven't we said this lots of times in the past but sometimes there really is some better news just around the corner.

I changed my view about private v NHS when I was visiting dad in hospital. There was a youngish man in the opposite bed - he had 3 young children and needed a triple heart bypass. They said the wait on the NHS was about 12 months but he was unlikely to survive that long do he remortgaged his house and paid £32000 for the op. He said the debt would be worth seeing his children grow up. I have never forgotten him and often wonder if those children still have their dad

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

User
Posted 04 Jul 2017 at 20:13
Hi everyone

We are back from our visit to Oxford Churchill with good news on Radium 223. They are willing to go ahead as they feel that we are able to react quickly to signs of infection and they will monitor. We will go up twice a month, once for bloods and an oncology visit and the following week for treatment. I had resigned myself to this being ruled out on the basis of infection risk but am delighted that they are going to go ahead. The doctor was simply fantastic, she read John the riot act about taking painkillers (he avoids like the plague) as she said it would improve his quality of life. I once again had to contradict him on how he is. Oh he said I've been fine for the last two weeks (he was better yesterday, he's been very poorly for weeks). He also said that he never rests in the day, whereas he's hardly been out of bed in the last few weeks! I think the doctor realised that his memory isn't the best, but mine is ok. Phew. On the journey home I mentioned about the painkillers and he said yes I shall take paracetamol twice a day - argh!!

Good job I love this lovely man, but I do wish I could make him understand that life has been utterly miserable recently and if painkillers can contribute to a better quality of life, he must take them. I will chat to our hospice nurse about this aspect as it's a real worry.

He has to stop taking the diethylstillbestroll, aspirin, ranatadine and calceos, so that's four drugs less anyway.

Doctor also said that Radium 223 does not necessarily reduce the PSA, so that's good to know.

I think we will start the new regime in about four weeks time.

Cheers all

Devonmaid

User
Posted 11 Jun 2017 at 22:35
Devon maid

So sorry to read how tough things have been. By way of thanks, though, your post actually helped me. I'm 46 and diagnosed with T3b and Gleason 9. So to hear your hubby is still around 6.5 years later is encouraging to me as I don't really know what to expect.

I hope things improve with whatever treatment is decided upon.

Ulsterman

User
Posted 11 Jun 2017 at 22:51
I certainly didn't expect to see you here tonight DM I would like to say welcome back but probably more than most I understand your reasons for posting .

This roller coaster doesn't get any easier and for some of us old timers I think it gets harder because we get worn out with the lows and not enough highs.

If you are offered Abbi I would grab it with both hands even though it has never reduced Trevor's PSA to the level we had hoped for I do believe it has kept things on an even keel for what will be 2 years in Sept.

Loads of love as always A

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 Jun 2017 at 20:07
Hi all

Just an update prior to our consultant's visit tomorrow. We saw the GP on Friday as John has had a really bad infection and needed different antibiotics, he gave us a copy of a letter referring him to the Radium 223 team. It rather oddly says that John has few infections and rarely needs antibiotics. Considering that he is on long term antibiotics and has had many infections from his SPC, I'll have to take issue with that. Still, we will see what they say tomorrow and what the PSA is doing, assuming John is well enough to attend.

Cheers

Devonmaid

User
Posted 25 Jun 2017 at 01:04
Thanks Julie

It's not something I know a huge amount about, but I've read up. It's the infection that's causing me concern, we need to clear this up and get him well enough for new treatment. Still waiting to get the call from the oncologist for a private consultation. I've never thought of doing that before as the NHS has been great for that so far. Thank goodness for my company refusing to let me go (though that may well change in the very near future). Thinking of you and Trevor.

Love DM xxxx

User
Posted 04 Jul 2017 at 21:03

So please you got the result you wanted DM.

Honestly, our men, what are they like.

We can't control the winds - but we can adjust our sails
User
Posted 04 Jul 2017 at 22:17
Dm ,

Had to laugh at Johns response to your conversation. What is it with our men I have had very similar conversations with Trevor he is refusing the palliative care team but have to admit maybe it is there stubbornness that keeps them going !

If you need advice on the Raduim we have just been through Six months of it.

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Jul 2017 at 22:18

Phew - I am going away tomorrow for three weeks so very happy to see good news - I will worry about you all less :-/

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

User
Posted 22 Aug 2017 at 21:24
Evening all,

Well John finally had his first Radium 223 injection today, thank heavens as I was starting to feel frantic as it's been ages since he stopped his stillbestrill. It was a breeze as noted by others who have gone before on this. The PSA has gone up to 27 which was a bit of a shock, but they don't seem to bother and said that they will record it going forward but not really worry about it. We will try to do the same!

So, they will do three injections over three months then review the situation.

Onwards and upwards

Devonmaid

Show Most Thanked Posts
User
Posted 11 Jun 2017 at 22:35
Devon maid

So sorry to read how tough things have been. By way of thanks, though, your post actually helped me. I'm 46 and diagnosed with T3b and Gleason 9. So to hear your hubby is still around 6.5 years later is encouraging to me as I don't really know what to expect.

I hope things improve with whatever treatment is decided upon.

Ulsterman

User
Posted 11 Jun 2017 at 22:51
I certainly didn't expect to see you here tonight DM I would like to say welcome back but probably more than most I understand your reasons for posting .

This roller coaster doesn't get any easier and for some of us old timers I think it gets harder because we get worn out with the lows and not enough highs.

If you are offered Abbi I would grab it with both hands even though it has never reduced Trevor's PSA to the level we had hoped for I do believe it has kept things on an even keel for what will be 2 years in Sept.

Loads of love as always A

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Jun 2017 at 21:34

The nurse that gives me the Prostap hormone, said they just lost a gentleman, whose first PSA score was 13000 and he survived for 13 years. You just never know how its going to go.

User
Posted 12 Jun 2017 at 23:40

Ah love, I can feel your worries. You have both had such an awful time and J has suffered horribly so it is no wonder you are feeling worn out and anxious for him. I hope the new treatment stabilises him for a while and ideally the lymphodema can be improved as it makes it so difficult to get around and do things like keep up with your little blessing. But every day and week is creating more memories and happy moments to treasure so I hope you manage to have a lovely summer without any more infections.

Love always,
Lyn xxx

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

User
Posted 18 Jun 2017 at 20:07
Hi all

Just an update prior to our consultant's visit tomorrow. We saw the GP on Friday as John has had a really bad infection and needed different antibiotics, he gave us a copy of a letter referring him to the Radium 223 team. It rather oddly says that John has few infections and rarely needs antibiotics. Considering that he is on long term antibiotics and has had many infections from his SPC, I'll have to take issue with that. Still, we will see what they say tomorrow and what the PSA is doing, assuming John is well enough to attend.

Cheers

Devonmaid

User
Posted 19 Jun 2017 at 00:09

Fingers crossed - lots of love xxx

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

User
Posted 19 Jun 2017 at 08:18

Good luck from me too

We can't control the winds - but we can adjust our sails
User
Posted 19 Jun 2017 at 11:18

Wish you well going forward Devonmaid Good luck.

John.

User
Posted 19 Jun 2017 at 20:50
Oh DM ,

It's all such a muddle the left hand doesn't know what the right hand is doing . I am sure on the day you will put everything straight.

Loads of love

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Jun 2017 at 22:53
Just wanted to say that our oncology visit was as expected, although she said there would be a wait of six weeks for the initial appointment to see if he's suitable for Radium 223. She did mention an issue with the kidneys, so we saw our urologist last night (private medical care through work) who was truly wonderful, he explained that the kidneys are fine, they were swollen during the awful time up until September last year before John had a major op and they will always be swollen, the ureters were fine though. He also referred us to the oncologist privately so that we can hopefully jump up the list to see the radium guy at Oxford. The socialist in me feels bad about it, but the wife is hopeful especially as the urologist said it's not safe to wait.. Our urologist changed the antibiotics and put John on a 28 day course, and will do gentamicin bladder washouts for six weeks to reduce the risk of further infection if needed. What a difference! I now feel that we can cope with radium 223 and or chemo as we have a fantastic urologist who is doing everything possible to minimise the infection risk. The infection risk is great because John has a supra pubic catheter, effectively and open wound on his body. Pain is still an issue, 20 odd bladder spasms a day and a horrible pain from his pubic bone and hip but radium 223 should help that. Let's hope that he can have it now!

Feeling relieved here.

Devonmaid

User
Posted 23 Jun 2017 at 11:04
Hi d

Just caught up with your thread,you are often in my thoughts as are many others. Glad I've made the effort to look in on all.

So glad you have a positive plan, it must be such an upliftment for you both along side the hard times and pain.

You are trully doing a magnificent role supporting John.

Take care,

Lesley xx

User
Posted 23 Jun 2017 at 12:26

Glad the appointments have gone well :-) x

User
Posted 23 Jun 2017 at 13:57

Pleased for you that the appointments were so positive.

I'm not a socialist, neither would we have the cash to go private on anything major but I have used my Simply Health membership to consult a doctor privately.

My view is that the private sector is there whether you use it or not. If we use it because we have medical cover or the funds then our places in the NHS queue are released for somebody who isn't as fortunate as us.

We aren't talking toothache here that could wait a while,so go for it and worry ye not !! I would.

Edited by member 23 Jun 2017 at 14:29  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 23 Jun 2017 at 23:53

Hi Devonmaid,
well what a difference and haven't we said this lots of times in the past but sometimes there really is some better news just around the corner.

I changed my view about private v NHS when I was visiting dad in hospital. There was a youngish man in the opposite bed - he had 3 young children and needed a triple heart bypass. They said the wait on the NHS was about 12 months but he was unlikely to survive that long do he remortgaged his house and paid £32000 for the op. He said the debt would be worth seeing his children grow up. I have never forgotten him and often wonder if those children still have their dad

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

User
Posted 24 Jun 2017 at 00:22
DM

Loverly to see you posting again, I hope your proposed treatments have the desired effects. Use whatever resources you have to hand to get the best treatment.

I had a SPC Catheter fitted in March, it will be in for at least six months, changed at three month intervals of course.I have a flip flo valve between the Catheter and bag, the idea is to try and keep the bladder active. Had the obligatory infections and Like John I have been having spasms 20 to 40 times a day, but the pain is more in the end of the penis than the bladder. I can still urinate but only 50 ml at a time, quite painful and quite frequently. Oxybutynin or solifenacin are having a limited effect. At night I open the valve to allow free drainage and sleep through the night.

I had the SPC changed last week, I am not a wimp but that was painful.

Look after each other.

Thanks Chris

User
Posted 24 Jun 2017 at 14:24
I hear you Chris,

John has his done at least every six weeks, it's variable as to how painful it is, depends on the doctor or nurse doing it. He used to have a valve but it was blocked so often that the district nurses became our best friends, at least with a leg bag that is not such a regular occurrence. That causes it own problems, leg ulcers where the various straps chafe and the change to the body's centre of gravity, especially with active hip mets, hasn't been a joy ride. I think it was ok with a valve in terms of everything but the blockages and wish we could go back there but we can't. He's still really poorly with this infection, it's hanging around as I think he's quite weak.

I'm not looking forward to the bladder wash outs as it's basically pouring in water with gentamicin directly into the bladder, it's excruciating but may be necessary.

Glad to see you are coping, I feel for you though.

Love

DM

User
Posted 24 Jun 2017 at 16:48
DM

I now use a urisleeve to hold the leg bag in place, I pull the urisleeve up just above the knee and use one bag strap at the top of the bag so the leg bag strap is also holding the Uri sleeve secure. You will need short pipe on the lag bag. The thigh strap has given me some grief in the hot weather and I woke this morning with a bite under the thigh strap. So today I have a Urisleeve on my thigh which has so far worked out quite well. To prevent accidental opening the bag tap I have a urilock clip on the tap, I was using elastic bands then moved on to using a cut down bag strap wrapped round the tap. Cutting the corners off the Velcro fastening makes threading it through the bag slightly easier. I also swap legs every day.

Hope things start to improve soon.

Thanks Chris

User
Posted 24 Jun 2017 at 22:24
Dm,,

Trevor was fine on the Raduim 223 he had hardly any side affects . They give you a sheet instructing about washing clothes and extra flushing of the loo but it is all doable.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Jun 2017 at 01:04
Thanks Julie

It's not something I know a huge amount about, but I've read up. It's the infection that's causing me concern, we need to clear this up and get him well enough for new treatment. Still waiting to get the call from the oncologist for a private consultation. I've never thought of doing that before as the NHS has been great for that so far. Thank goodness for my company refusing to let me go (though that may well change in the very near future). Thinking of you and Trevor.

Love DM xxxx

User
Posted 04 Jul 2017 at 20:13
Hi everyone

We are back from our visit to Oxford Churchill with good news on Radium 223. They are willing to go ahead as they feel that we are able to react quickly to signs of infection and they will monitor. We will go up twice a month, once for bloods and an oncology visit and the following week for treatment. I had resigned myself to this being ruled out on the basis of infection risk but am delighted that they are going to go ahead. The doctor was simply fantastic, she read John the riot act about taking painkillers (he avoids like the plague) as she said it would improve his quality of life. I once again had to contradict him on how he is. Oh he said I've been fine for the last two weeks (he was better yesterday, he's been very poorly for weeks). He also said that he never rests in the day, whereas he's hardly been out of bed in the last few weeks! I think the doctor realised that his memory isn't the best, but mine is ok. Phew. On the journey home I mentioned about the painkillers and he said yes I shall take paracetamol twice a day - argh!!

Good job I love this lovely man, but I do wish I could make him understand that life has been utterly miserable recently and if painkillers can contribute to a better quality of life, he must take them. I will chat to our hospice nurse about this aspect as it's a real worry.

He has to stop taking the diethylstillbestroll, aspirin, ranatadine and calceos, so that's four drugs less anyway.

Doctor also said that Radium 223 does not necessarily reduce the PSA, so that's good to know.

I think we will start the new regime in about four weeks time.

Cheers all

Devonmaid

User
Posted 04 Jul 2017 at 21:03

So please you got the result you wanted DM.

Honestly, our men, what are they like.

We can't control the winds - but we can adjust our sails
User
Posted 04 Jul 2017 at 22:17
Dm ,

Had to laugh at Johns response to your conversation. What is it with our men I have had very similar conversations with Trevor he is refusing the palliative care team but have to admit maybe it is there stubbornness that keeps them going !

If you need advice on the Raduim we have just been through Six months of it.

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Jul 2017 at 22:18

Phew - I am going away tomorrow for three weeks so very happy to see good news - I will worry about you all less :-/

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

User
Posted 22 Aug 2017 at 21:24
Evening all,

Well John finally had his first Radium 223 injection today, thank heavens as I was starting to feel frantic as it's been ages since he stopped his stillbestrill. It was a breeze as noted by others who have gone before on this. The PSA has gone up to 27 which was a bit of a shock, but they don't seem to bother and said that they will record it going forward but not really worry about it. We will try to do the same!

So, they will do three injections over three months then review the situation.

Onwards and upwards

Devonmaid

User
Posted 22 Aug 2017 at 21:36

Best wishes to you
Debby

User
Posted 22 Aug 2017 at 23:31

The journey continues. Hope it goes well for John and it helps to relief symptoms. My onco said something similar about my PSA preferring to considerl things by how I feel. Of course I could get radium 223 at some point so very interested in how it works. Good luck I am thinking of you both.

Edited by member 24 Aug 2017 at 17:14  | Reason: Not specified

User
Posted 23 Aug 2017 at 06:39

Hope all is well
Always thinking of you
Barry

User
Posted 23 Aug 2017 at 08:21

Glad the first on went well DM. Fingers crossed for you both for the others


****

We can't control the winds - but we can adjust our sails
User
Posted 23 Aug 2017 at 20:25
So glad the first infusion went well DM I seem to remember that Trevor felt quite sick a few days after the first round but from then on it was a breeze .

There is a fair bit of loo flushing and washing clothes separately which all seems hard going to start with but once you get your head around it it's ok.

I know they all say at this stage don't fret about the PSA 😄 If only because we all do .

Loads of love. X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Aug 2017 at 00:41

Fingers crossed that starting the Radium puts a perk in his step. If anyone deserves a bit of luck and respite it is you two xxxx

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

User
Posted 24 Aug 2017 at 07:04

Wishing you both well and hoping all goes well

Bri x

User
Posted 24 Aug 2017 at 07:35
Hi DM,

Here's hoping that everything goes well for you both. Try not to worry.

Steve x

User
Posted 24 Aug 2017 at 08:31
Really hope that all goes well for you both.

Kevan

 
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