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Next Treatment Please

User
Posted 16 Jan 2019 at 14:27

.


Thanks Steve


bone scan results are in, hospital called to say extensive further spread in hips and pelvis,  multiple new mets in ribs, some in neck (though those are not new). Kind of them to call quickly as the scan was only done yesterday afternoon. Now offering lots of support, so obviously feeling they were a little mean to us! anyway none of that matter now as we are getting the help we need now. We were advised to stop taking John’s pantaprazole (stomach protector) but i cannot find anything on this in the literature, anyone know anything about this? Ive asked the question to the specialist nurse of course too.


devonmaid.

User
Posted 21 Jan 2019 at 21:56

I picked up the Enzalutimide today, what a pain as the pharmacy denied all knowledge and i had to go back after calling around. It had been there all the time so just the usual bodge. I hope future collections go more smoothly, its a pain finding a parking space. Anyway John decided it was too late to start today but will begin tomorrow. Not a day too soon I’d say.


Devonmaid 

User
Posted 22 Jan 2019 at 00:48
Aaaaaaarrrrrggggghhh!

Hopefully tomorrow is a better day x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jan 2019 at 01:13
I'm with Lyn, Devonmaid. So frustrating for you, at a time when you least need it. I don't have a clue about how your prescription system works, but reading this makes me thank my lucky stars that our consultant or GP just writes them, and I just take them to our pharmacy and have them filled.

I do so hope that you see some effects from the Enzo quite quickly. We did with Abi last year, so I am crossing my fingers that it is the same for you.
User
Posted 27 Jan 2019 at 10:29

Well of course i sorted it all out and John started taking enza last tuesday. I’d say no change yet but its early days. We see the oncologist on Feb 4th for a review so next week i guess. on the plus side Indiana (Indy) John was born Friday lunchtime with me in attendance along with his  daddy. Can’t write much of a catch up due to the word processing issues on this site driving me nuts. Safe to say its a joyous weekend here though.


love Devonmaid 

User
Posted 28 Jan 2019 at 03:45

Wonderful news of the arrival of Indy, Devonmaid.  You must be exhausted, but so happy.  I hope John can meet the new addition (and namesake - is he chuffed at that?) very soon.  The grandchildren bring such joy, and are very effective at taking your mind of things, aren't they.


I hope things pickup a little for John before you see the oncologist next.  Will he have any blood tests before you go to that appointment?  If so, I'll be interested to hear how his LDH is going, as well as everything else of course.  I feel very in the dark about some of those blood tests - H's LDH was up from 272 to 688 on the last test, and we got the impression that it could have been due to a few different causes (none of which we can do anything about).

User
Posted 28 Jan 2019 at 21:39

Hi Teacups


Yes bloods this friday and LDH will be measured 644 last time so will be interested in that this time too. 


will let you know, we did go out today which was lovely, so nice to go out for a change.


Love Devonmaid xxxx

User
Posted 27 Apr 2019 at 09:21

Hello friends


i haven’t updated for a while as I’ve tended to tell our story on Kentish’s post but probably need to update this thread now. So John has been doing well on Enzalutimide, PSA now 12 and the LDH and ALP in normal range though red cells HB low and blood volume low as are white cells. John is extremely tired but we will take that thank you. 


However, he is currently languishing in hospital with sepsis. He is doing ok at the moment, so out of immediate danger. What happened was that I was away for work in Bradford and was stuck on the motorway but received a call from my daughter to say that she hadn’t had a responding text from her dad and had gone round to find him on the floor, having fallen four hours previously. He’d hit his head in the bathroom on falling, crawled out (unable to get up), eventually tried to pull himself up on the bed and had fallen backwards and hit his head on the wardrobe and just couldn’t get up again. She found him rather confused, got him into bed, gave him tea and some weetabix and called me. I called the GP who asked me to get someone to get him over there as we suspected a UTI. My other daughter did manage that and he was seen at around 6pm and given antibiotics for a UTI, he was still a bit confused at this point and obviously unwell. My daughter stayed until I got back at 10pm, and at this point he was still speaking to me, but I put the bins out and came back and he was shaking like a leaf, when that stopped I took his temp and it was 39.8, he was grimacing and unresponsive except for muttering along to five men apparently in the bedroom with us. I then called 111 who were amazing and sent a paramedic, who diagnosed sepsis after a few tests, bloods, BP etc, temp now over 40. Ambulance blue lights off to A&E and we spend the night and next day in there. He is now finally on a ward and much better, although he is still poorly. The UTI was so bad his blood was full of bacteria and frankly, I could smell it when I got back into the room after I put the bins out. I can only thank the much maligned 111 call operators and paramedics. And also I must admit that the horrendous delay on the M42 that kept me from home until 10pm probably saved his life as otherwise I’d have been asleep in the other room by then after a long day. He would not have been able to call me. What a day. Thank god for the current focus on sepsis too as the paramedic over ruled the call centre who tried to downgrade his priority 1 call. 


Phew!

User
Posted 27 Apr 2019 at 11:35
Oh Devonmaid

Don't know what to say but he is in the right place for now and hope it clears up quickly. I had wondered how you were doing so pleased to hear an update. My husband continues on Enzalutamide which has now been working for 5 months, longest anything has worked for so we keep hoping and only appointments every 2 months.
User
Posted 27 Apr 2019 at 13:38

DM


Sorry to hear of the situation but hopefully the best place to be at the moment. No doubt the SPC isn't helping. Big hugs to you both.


Thanks Chris

User
Posted 27 Apr 2019 at 15:07
All my wishes to you both x

If life gives you lemons , then make lemonade
User
Posted 27 Apr 2019 at 15:33

Sending best wishes DM.

Ido4

User
Posted 27 Apr 2019 at 16:00

Thank you


The oncology team has stopped the Enzalutimide, subject to a review on Monday. We were warned about the dangers of falls and enhanced infection risk but frankly I’d rather take that than abandon treatment, but I doubt my voice will count. I’ve activated a scheme to get an alert necklace put in place for when he comes home. Currently he is on a ward where he is comfortable enough but seriously, the lack of staff at the weekends is very concerning. I no longer fear for his immediate safety though, just worried about whether they will allow him to continue the Enzalutimide and if not, we only have steroids and or trials left as our fall back.


Trying not to anticipate the worst, but you guys know how it is.


lots of love


Devonmaid 

User
Posted 27 Apr 2019 at 17:58
I Hope everything goes ok and he can get back on he Enzalutimide, thank goodness for the paramedics.

regards Barbara. x
User
Posted 27 Apr 2019 at 18:18

Sending Hugs XX

User
Posted 27 Apr 2019 at 18:51

Devonmaid,


I am so sorry to hear about your husband. A very worrying time for you all. I'm sure that he will soon start to feel a little better with the wonderful support that he is getting. 


I know a little of how you must be feeling as my husband was also blue lighted to A & E with suspected sepsis earlier this week (luckily it wasn't sepsis!).  He was taken straight into resus and I must say that the staff at the hospital and the paramedics were amazing. He is in the middle of chemo at the moment and had so far coped well with it along with daily steroids and 3 monthly hormone injections. We had just got our heads around the diagnosis and we were getting along quite nicely with our new 'normal'. However, this has put us back and we feel as though we are back at the beginning with it all again emotionally. ☹️. Chemo hopefully finishes at the end of May and then they are giving him a month's break before radiotherapy starts. I'm sure that we will get back on track again soon.


I send my best wishes to you all and I thank you for the positivity that the likes of you and Kentish have provided in these forums. 


Take care x


 

User
Posted 27 Apr 2019 at 20:46
How frightening for all of you, especially your daughter. I hope he is home soon x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Apr 2019 at 22:02
So sorry to hear. Your are amazing at supporting all and I hope your voice gets heard. Cx
User
Posted 27 Apr 2019 at 23:07
Dear Devonmaid ,sending best wishes .
Debby x
User
Posted 28 Apr 2019 at 08:58

Dear Devonmaid,  so sorry to read this update.  So frightening for you all.  I'm glad that the sepsis was recognised and acted upon.  And I do hope you get the outcome of the enza continuing on Monday.  I know they said there was an increased risk of UTIs on Abbi too, and H had an SPC that heightened that risk too.  He did have a couple of UTIs, but thankfully it didn't go to Sepsis. 


I have been thinking of you often, and wondering how you were getting on.  And yes, we do know how worriesome the waiting for the decisions is.  Will be thinking of you.

User
Posted 28 Apr 2019 at 09:00

Just thinking of you all and sending my best wishes, x

User
Posted 30 Apr 2019 at 09:24
Dear DM,

Sending best wishes for a speedy recovery from the infection. Xx
User
Posted 02 May 2019 at 10:12

Thanks everyone 


John is home, he’s very tired and sleepy. But he’s home. Happy Devonmaid.


 

User
Posted 02 May 2019 at 11:35
Pleased to hear this and hope things continue to improve.
User
Posted 02 May 2019 at 12:14

Great news! Glad John is back at home with you. 


X

User
Posted 02 May 2019 at 14:37

That's good news DM.


 

Ido4

User
Posted 02 May 2019 at 16:35

So happy to hear he is home. Take care and hopefully all will be well. 


 😸

Edited by member 02 May 2019 at 16:36  | Reason: Not specified

User
Posted 03 May 2019 at 05:56
So pleased for you both that John is home. xxx
User
Posted 03 May 2019 at 07:23

DM


Good to hear is is home.


Thanks Chris

User
Posted 21 Jun 2019 at 09:29

Hi everyone


A little update from me, John has been suffering pretty severe pain down his right side this last week or so, given that he is already on a Fentanyl patch (25ml), it must be pretty bad. It has led us to believe that his main tumour in his right hip is growing again and that the Enzalutimide is now failing after five months. We are up in front of the oncologist on Monday so will discuss with them but in the meantime I will be talking to the hospice nurse today about whether it’s better to increase the patch dose rather than take morphine due to severe constipation issues (resulting from RT to the prostate a couple of years ago) and the ongoing impact on his supra pubic catheter (the pressure makes him more prone to infections). 


We were told that this is the last treatment bar steroids so are trying to face up to that but also trying not to jump the gun. Frankly, we’ve been around this disease long enough to know that symptoms are everything though.


Wish us luck.


love Devonmaid xxx

User
Posted 21 Jun 2019 at 09:40

Hello Devonmaid,  I am wishing you all the luck in the world.  I think of you often, and had noted a few things you said recently on other threads.  I was hoping you would post on your thread so that I could drop in with a reply.   I wish there was something else I could do except send much love.  Crossing fingers and toes for your appointment on Monday.  And also for some more pain relief without added side effects.

User
Posted 21 Jun 2019 at 18:44
Thinking of you both and hoping that it turns out to be nothing to do with the cancer xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jun 2019 at 17:31

DM


Good luck for Monday, lots of hugs to you both.


Thanks Chris

User
Posted 22 Jun 2019 at 17:52
Thinking of u both xx

If life gives you lemons , then make lemonade
User
Posted 22 Jun 2019 at 19:52

Thanks for the kind thoughts my friends,


we’ve upgraded the patches to 37.5 mls of Fentanyl as of today, the additional patch takes 18 hours to work properly so still on the morphine and it’s not quite hitting the spot. There is a nasty smell at the site of the SPC but I’ve had a district nurse check it and she says it doesn’t look infected. Catheter change is Tuesday and in future they will do it more often and at home. Of course I’m worried about another dose of sepsis especially as I’m off to Bradford for work for a couple of days next week. The pain is in the hip, leg and knee, both sides now. I suspect some is the cancer spread and some is because of walking differently with the pain so putting pressure on joints. We’ve had yet another chat about me getting a Zimmer frame for him as his legs keep collapsing under him, it would be safer. Then he backtracks and says it’s probably his muscles and he will be ok. 


I think I need to make an executive decision on that one.


love Devonmaid xxxx


 


 

User
Posted 22 Jun 2019 at 20:27
What a shame you are coming up here just when I am going away - you could have stayed :-(

Next time maybe?

Hope the fentanyl kicks in soon. I hardly dare ask but has John had an assessment recently from palliative care physiotherapist and / or occupational therapy team? This is the sort of thing Suzanne does for a living in Newcastle but other Trusts don't seem to offer the same service?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jun 2019 at 22:52

I’ll be up there again Lyn, I’m going to be working at the Council Offices for a couple of days and will be up again a couple more times during the summer.


I hadn’t heard of that option but I did speak to the hospice nurse on Friday and explained how things are but that was in relation to that patches so I will speak to her again next week in case there is an option there. I’ve offered to make a bedroom in the dining room but John has refused that, which is a shame because the stairs and falling down them are my greatest concern. Luckily we have two bannisters so he can hold both sides.I’d prefer to be on one floor though, shame we didn’t move to a bungalow years ago but we do love our house.


lots of love


Devonmaid xxx

User
Posted 23 Jun 2019 at 07:12
Good luck for Monday and hope the patches work.

love barbara xx
User
Posted 23 Jun 2019 at 08:49
Always thinking of you two , hope you get the pain under control
Hugs Barry
User
Posted 23 Jun 2019 at 09:22

Hello Alison,


Obviously hoping you get the pain under control but just wanted to say Mike refused a downstairs bed, wanting to keep everything as normal as possible. Double bannisters are good and were especially helpful for Mike’s mobility so fingers crossed it’s the right answer for John.


Janet, xx

User
Posted 23 Jun 2019 at 10:47

Since you've mentioned it, it's worth pointing out that things like extra banister rails, grab handles, and other mobility aids can be fitted by Social Services in many cases where there's a need, in order to be able to stay living at home. These can make an enormous difference to the persons confidence (and safety). They can also fit an external keysafe so that emergency workers and health visitors/carers can gain entry, and the firebrigade will keep a record that the house has a restricted mobility person living there, and where in the house they are likely to be in the event that emergency evacuation is required.

User
Posted 23 Jun 2019 at 21:24

Thanks Andy


Good points, we had a keysafe installed when John got sepsis and we are attached to Home Line so he can call them using his necklace. We have most of the usual aids now, am planning to get a zimmer and maybe a wheelchair as his knee is very painful now. I don’t know what’s causing that, maybe just knock on from the hip and leg issues. The double bannisters were installed a few years ago to help get upstairs and they are brilliant. New patch has kicked in so it’s helped a bit but we are not free of the hip pain yet, I will be speaking to the hospice tomorrow for further advice after oncology.


i heard today that one of our longtime forum members has passed away last Friday. I wish I could remember his forum name. I shall look at the old posts and find it. Broke my heart, we began our journeys around the same time, so so sad.


love Devonmaid 

User
Posted 24 Jun 2019 at 08:00

Hi, 


Hope today goes well for you both. 


Steve x

User
Posted 27 Jun 2019 at 13:45

Hi all


well the PSA has risen as expected, not massive but enough along with the serious increase in pain to warrant scans. CT today and bone scan next week then back on 22nd to oncology for an update. Patches have been increased again to 50ml and still needing morphine so it’s not great.


I’ve never been quite sure if John should walk with this pain or not, given that it’s inside his hip and pelvis, that’s something I still don’t really know but I do know that he can walk a little before it gets too intense. 


So, once again we wait for the dreaded scans and results. Always keeping cheerful (hubby that is) he is so brave, I’m proud of his lovely temperament and the way he has dealt with this to date.


lots of love


Devonmaid xxxx


 

User
Posted 27 Jun 2019 at 17:56

good luck with the scans and next next oncology appt, tony is having a scan on Monday and oncology on 24th. Hope the extra patches help the pain. all the best


 


barbara x

User
Posted 02 Jul 2019 at 19:33

Thanks Barbara and good luck to you too.


I’ve just experienced an episode of crying from John, my heart is breaking seeing him laid so low, he seems at the end of his tether. Thank goodness our hospice nurse is back at work tomorrow, I really need her right now. Emotional support for my love, so strong and now so weak, is much needed. 


Love Devonmaid xxxx


 

User
Posted 02 Jul 2019 at 19:55
Sending wishes and thinking of you both x

If life gives you lemons , then make lemonade
User
Posted 02 Jul 2019 at 20:22
Thinking of you both - it breaks my heart to read of some of the hard times all our men have to go through. Tears are never far away but it hurts I know. Sending prayers.
User
Posted 02 Jul 2019 at 20:59
Thoughts are with you both, it is so hard to stay strong and hold it all together when all you want to do is break down and cry with them, I hope you get the emotional help that is so needed from the hospice nurse.


Big hugs to you

love Barbara xx
User
Posted 02 Jul 2019 at 22:18
Virtual (((((((((HUGS)))))))))) sent to both of you

Bri xx
 
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