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Next Treatment Please

User
Posted 17 Dec 2018 at 22:22

Hi all


its been a while since i posted an update on John’s progress. A quick saunter through the last eight years, PSA 25 on diagnosis, gleason 10, spread to lymph and bones. Usual treatments for the times, however, the addition of Stillbestrill halted the progress of the cancer for more than three years and we've had Radium 223 (didn't help) and now chemo (hmmm, not sure whether it helped but ended up with PSA slightly lower than we started but with disease progression we think, but with ten chemos under the belt still here, so yay). But, health not good, pain not good, now on fentanyl patches and morphine, collapsing hips, now waiting for a new bone scan before decision to be made about abiraterone or enzalutimide, hoping this decision is made quicker than the currently scheduled two months. Hospice has stepped in to order blood tests tomorrow due to severe itching (thank heavens for wonderful hospice nurses). 


As a summary, we have been incredibly lucky to date, i have a feeling our luck is running out but maybe we still have a way to go as we still have options (i hope).


I would have gladly taken this eight years ago, i remember begging the heavens for four years and I have had double that so far. I am grateful for every day I get to spend with this wonderful man. Wish us luck for the coming bone scan and potential liver troubles.


love to all here, so happy to see so many familiar names still here and fighting on 


Devonmaid xxxx 

User
Posted 29 Dec 2018 at 22:36

Saying a quiet little prayer to both devonmaid and kentish , tough times for you . Your posts have inspired guys like myself who are new to this disease


 Where there is life there is hope. Good luck and much love sent.


Chris.

Edited by member 29 Dec 2018 at 22:51  | Reason: Not specified

User
Posted 11 Jan 2019 at 16:38

Just an update, a good one. hospital rang this afternoon asking me to bring John in Monday afternoon to see the head man. What a relief! 


 


Devonmaid

User
Posted 18 Dec 2018 at 00:56
Hi Devonmaid

Hope John is able to get on another treatment and hope they get the itching sorted (poorly kidneys can cause this sort of itching) I am the same as you Tony is gleason 9 and I was pleased to get to 5 years and now its 12 years on. Tony is on his 3rd of 10 chemo now 4th one 28th dec. Hope John gets his pain sorted out and hopefully more options there seems to be so many more than when Tony was first diagnosed. good luck



love barbara xx
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User
Posted 18 Dec 2018 at 00:56
Hi Devonmaid

Hope John is able to get on another treatment and hope they get the itching sorted (poorly kidneys can cause this sort of itching) I am the same as you Tony is gleason 9 and I was pleased to get to 5 years and now its 12 years on. Tony is on his 3rd of 10 chemo now 4th one 28th dec. Hope John gets his pain sorted out and hopefully more options there seems to be so many more than when Tony was first diagnosed. good luck



love barbara xx
User
Posted 18 Dec 2018 at 08:01
Your men may be suffering with PC but they have certainly been blessed with their women!!
User
Posted 18 Dec 2018 at 08:49

Hi Allison


 


Good luck with John's bone scan and ongoing treatment. How old was he on original diagnosis?

User
Posted 18 Dec 2018 at 09:04

HI Devonmaid 


I wish you and John all the luck in the world with the bone scan and whatever further treatment you embark on.


It was good to see an update from you.


Kind regards


Kevan 

User
Posted 18 Dec 2018 at 13:49

DM


Sorry I don't know the answer to your question, but love and hugs to both of you.Take care.


Thanks Chris

User
Posted 18 Dec 2018 at 15:46

Hi JasperM


John was 61 on diagnosis and swore he’d make 70, guess what, he’s going to do it. 


 


Love


Devonmaid xx

User
Posted 18 Dec 2018 at 16:16

Hi Devonmaid,
How strange Tony was 61 as well and didn't think he would make 70 and he did  and now hoping for another few years at least hopefully .


 


Love barbara x

Edited by member 18 Dec 2018 at 22:08  | Reason: Not specified

User
Posted 18 Dec 2018 at 18:55
Hi DM

Sorry to hear John is in pain and hope they can get this under control

The itching could be non liver related. Hasn’t he had this in the past?

Fingers crossed there is nothing untoward with his bloods and hope he gets his bone scan soon so his next line of treatment can begin. Hopefully still happy years ahead

Hope you can both have a lovely Christmas

Bri xx
User
Posted 18 Dec 2018 at 20:08

Hi Allison


I hope John gets sorted quickly


70 was always my aim DX Feb 2011 


70 in Jan


Merrry Xmas to you both xx

User
Posted 18 Dec 2018 at 21:43

I expect you didnt think i would pop up but yes i am your secret stalker 🤗 very silently watching behind the scenes .


i think what i would like to add is the obvious really , enjoy every day , enjoy every hour , enjoy every moment and especially enjoy xmas 


much love to all of you xxx


Juliexxx

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Dec 2018 at 04:18

Awake at 3.30, a dose of morphine, not for me, i had tea. popped in here and saw our lovely Julie has been here, Merry Christmas xxxx

User
Posted 21 Dec 2018 at 18:19
Sadly it's not true in every case but it seems to me that an increasing number of men these days are living well beyond the predicted time given by their oncologists. Perhaps this is largely due to the benefits of new treatments and protocols not taken fully into account because oncologists understandably base their predictions on past experience.
Barry
User
Posted 21 Dec 2018 at 18:30

We have been on the roller coaster ride since 2010 too with various treatments along the way. We are thankful for all these years too and feel blessed each day we share together. Thankfully my oh has done well and hopefully the arbiraterone/steroid/zoladex combination will continue to work for him.  We bit the bullet this year and took a long motorhome trip. We do whatever we can while we can.☺ Have a great Christmas and I wish you all the best in 2019.


 


 

Edited by member 05 Jan 2019 at 08:38  | Reason: Too personal

User
Posted 23 Dec 2018 at 20:02

Hi A, so good to hear your news. I will have done 7 years come January and though the last year has been challenging in many ways enzalutimide is still holding back progress (17 mths now) so hopefully that or Abby will bring some respite, maybe even pain relief. Hope you and John enjoy Xmas and we continue to keep going as long as we can thinking of you both.

Edited by member 23 Dec 2018 at 20:03  | Reason: Not specified

User
Posted 23 Dec 2018 at 23:42

The most amazing thing is that John is still abi / enzo naive. It doesn't matter so much that the PSA didn't drop much; all the indicators are that the chemo will make the abi or enzo more efficient. I hope you can get the onco appointment brought forward though; he has already had more pain than anyone should have to endure.


I remember you first joining, and Barry & Yorkhull. Amazeballs that you are still here on the platform with your sandwiches, as Julie would say.


Lots of Christmas love to you and all the family xxx


 

Edited by member 23 Dec 2018 at 23:43  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Dec 2018 at 21:08

Hi lovelies


well we did get through Xmas and enjoyed it, just SIL’s birthday party to host on NYE to get through now, with a sickly daughter (hideous chest infection at 37 weeks pregnant, similarly a sickly four year old to boot) and then there is John. still heard not a thing from the specialist nurse or the hospice nurse about bringing the bone scan forward. meanwhile John continues to become weaker overall, his legs are weaker and his sensation of collapsing is now daily. i am beyond frustrated. So much for symptoms of SCC being considered a emergency. He doesn't have pins and needles and he has an SPC so no idea about bladder weakness of course. bowels are loose as opposed to the usual constipation. am i worried, you bet.


i am going to ask for a private consultation on Jan 2nd, i think its all i can do apart from calling an ambulance, which i don't feel comfortable  doing.    


sorry for the typos. the ipad and this site are not friendly and i don't have the energy to correct them anymore, despite being a paid up member of the grammar police.


Sorry for the miserable update, I'm rather at my wits end and fresh out of faith in the NHS.


love Devonmaid xxx


 

User
Posted 29 Dec 2018 at 22:01
Sending you hugs. Sorry John is having all those problems and hope he gets some help very soon.
User
Posted 29 Dec 2018 at 22:18
Sending you the comfort blanket, I've had it for a while and it sounds like you could do with it right now.
I've always felt a bit of a fraud each time I've taken oh to a&e or had the emergency Doctor out but in reality, every time it was the right place for him in that moment.
There is never a good time to make the call and I feel weekends in a&e are the worst (except for Mondays, everybody waits until Monday ), do you have an emergency Doctor on call system where you are?
I have a palliative care team number which prioritises oh for the doctors to come and see him. They then make the executive decision about whether to go to a&e or not. Do you have anything like this? If you are already in contact with your local hospice, they may have details of who to call to help you decide what to do.
Wishing you all the best.
Katie xx
User
Posted 29 Dec 2018 at 22:36

Saying a quiet little prayer to both devonmaid and kentish , tough times for you . Your posts have inspired guys like myself who are new to this disease


 Where there is life there is hope. Good luck and much love sent.


Chris.

Edited by member 29 Dec 2018 at 22:51  | Reason: Not specified

User
Posted 29 Dec 2018 at 22:58

DM


Hugs to you all, not much I can offer in the way of practical advice but hopefully knowing we are here for you might help.


Thanks Chris


 

User
Posted 30 Dec 2018 at 01:47
Oh love, I don't know what to say except if you are worried then A&E is the right thing to do. Not everyone has pins and needles.

Sending you lots of spirit xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Dec 2018 at 03:26

Just wanting to send my love and say that you are in my prayers.


Steve x

User
Posted 30 Dec 2018 at 08:36
Big hugs and hope you manage to get things sorted.

barbara xxx
User
Posted 30 Dec 2018 at 18:35
Sending hugs and love to you all DM. Hoping things can be sorted so that John feels a bit better soon.
Ian
User
Posted 30 Dec 2018 at 18:41
Thinking of you and John
private consultation on Jan 2nd a very good idea
Barry
User
Posted 30 Dec 2018 at 22:21

Thanks my lovelies


just had a really bad day, the comfort blanket has been received and is being snuggled as i sit here. Things are much the same, John says that he feels the same as he did a few NYEs ago when things went badly wrong (twice now, this is the third awful NYE). we have our SIL's party to get through tomorrow somehow and then i don't know, into battle i think. Katie, i don't have access to palliative care doctors yet but that may change as of next week when i start to kick off at being left unsupported. 


spirit is back, Devonmaid is back fighting for her man.


xxxxx

User
Posted 31 Dec 2018 at 00:27
Love you loads xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Dec 2018 at 11:33

DM, well done for regrouping and finding the energy to keep going. Sometimes it's all just too exhausting and the energy goes into battling doctors/secretaries/nurses when what you really want to do is enjoy what you can. Hope you enjoy SIL's party, have a vino collapso for us.xx

User
Posted 01 Jan 2019 at 21:14

Well the party went well, though John spent all but ten minutes of it in bed. i did manage to speak to the specialist nursing team (well one person was manning the phones) and it turns out that they haven’t actually ordered the bone scan. shortly afterwards the hospice nurse rang (mid celebrations) and i had a few tears down the phone to her. hopefully we will now get the bone scan sorted. John has rather worryingly lost his apetite and all things considered i need them to move him onto new treatment ASAP. you only need to look at him to know what's happening.  So, thank goodness the world returns to normal tomorrow so i am hoping for something to happen quickly now. we have also been put on the list for the hospice doctors so can now call them for help if needed.


Devonmaid xxxx 

User
Posted 02 Jan 2019 at 18:53

So finally got called back and the bone scan is on the 15th, I'm not ecstatic as that’s hardly closer than it would have been anyway. If anything hapoens to my man as a result of their incompetence they’d better watch out.


 


devonmaid  

User
Posted 08 Jan 2019 at 00:00

Oh DM ,


i dont know why as i haven’t looked in on here for such a long time but felt the  need to check on you and John .


im so glad the comfort blanket i started is still doing the rounds , but i can feel your despair at not  being  heard  i can so remeber the frustration of not being listened to when you are at desperation level .


i think of you both often and am sending love and hugs and thensome .


and what the **** is happening with the forum typing situation its like being stuck in a wind tunnel 😫


 


BFN


Julie X

Edited by moderator 08 Jan 2019 at 00:35  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Jan 2019 at 07:27
Devonmaid, sorry that you now have more delays. Fingers crossed that the scans lead to some new plan.

Julie, I am not having any typing problems or forum glitches????
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Jan 2019 at 21:22

Well


i spoke to the specialist nurse yesterday and today and she told me that John may not get any further treatment due to his current condition. The appointment isn't being brought forward from 18th Feb either. scan is next week so all i can do at the moment is to try to feed him up, get him moving and after the results come in, get a private appointment and hope for the best.


i could say more, but typing this has taken ages due to whatever glitch affects the i pad and t his site a nd i give up!


 


Devonmaid 

User
Posted 10 Jan 2019 at 21:43

DM


That's not great news, thinking of you both.


Not having any issues with typing on an android phone, I do sometimes type my replies in Gmail then cut and paste the text into the reply on here.


Thanks Chris

User
Posted 10 Jan 2019 at 22:31
Well let's hope that the CNS is an idiot or a newbie. I don't understand why s/he says they wouldn't try abi or enza - his response to the Stilboestrol was really good and I think he is still LH / GnRH naive .... surely it would be worth a shot.

I take it you are going to try for a private appointment before the 18th rather than after?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Jan 2019 at 07:06
So sorry about what is going on, I hope the scan is ok and second what Lyn says about the abi or enza.

kind regards barbara
User
Posted 11 Jan 2019 at 07:45

Yes Lyn


will wait for the scan results and see what happens from that. I’m utterly disillusioned and shocked at the moment. If there is nothing more to be done then i can accept that but not like this . the typing of this has been painful.

User
Posted 11 Jan 2019 at 16:38

Just an update, a good one. hospital rang this afternoon asking me to bring John in Monday afternoon to see the head man. What a relief! 


 


Devonmaid

User
Posted 12 Jan 2019 at 14:13

That’s a good turnaround. Hope you get a positive outcome treatment wise.

User
Posted 14 Jan 2019 at 20:08

Well folks good news, John starts Enzalutimide on Monday. His PSA was 99, ALP and various other blood markers were elevated but onco was pleased that he was just about well enough to be given the drug. What a day, massively relieved though we have been given loads of warnings about blood pressure, infections and it not working but he is getting it. He said he thought that he had been suffering after effects of chemo and disease progression and now was the right time to start a new treatment. He did say that he will need careful monitoring and three months will be enough to know if its working. Failing that its a low dose steroid and entry on to a trial.


a relieved wife today! 


We live to fight another day.


Devonmaid

User
Posted 14 Jan 2019 at 21:37
Yaaaaaay ❤️❤️❤️❤️
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jan 2019 at 21:44

DM


Great news, lots of love and hugs.


Thanks Chris

User
Posted 14 Jan 2019 at 22:04
great news xxx
User
Posted 14 Jan 2019 at 22:26
Good news.xx
User
Posted 14 Jan 2019 at 22:37
Good news. My husband started it just before Christmas and so far so good. Hope it works for your husband.
User
Posted 15 Jan 2019 at 09:59

Hi, just picked up on this thread today. Id like to wish you best of luck with enzalutamide. my husband is just completing his first month of it. so far so good.


Susie

User
Posted 15 Jan 2019 at 22:41
Great news. Still on enzalutimide after 21 months so hope you get that return and more. Thinking of you both.
User
Posted 16 Jan 2019 at 06:53
Great news and fingers crossed

Bri xx
User
Posted 16 Jan 2019 at 08:17

Just wanted to mention a blood marker i hadn’t heard of before we started chemo called LDH (lactase dehydrogenase i think), a measure of tissue and muscle damage and this was particularly high. ALP had raised to 123 from 68 in five weeks and blood volume decreased again. I just hadnt seen mentione of LDH before on here (may have missed it).


I feel much better and am sleeping at last, full body bone scan yesterday, so we will have the full picture soon.


Thank you all for your support.


love Devonmaid xxx

 
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