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Tony starting on Diethylstilbestrol

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User
Posted 13 Mar 2021 at 06:58

Tony is starting his new treatment on Monday, he is cutting down on his prednisolone and will have stopped that by the end of next week, hopefully will have some good results when he gets his first check up from it in may. The Abiriterone worked from march 2019 until nov/dec 2020 so lets hope the new drug works for as long. Tony had a chat with his GP yesterday as they wanted to do a medicine review and he went through the side effects of all his tablets including the new one, apparently it will give him lovely soft skin but also hot flushes, had to laugh at that , he has been on HT for long enough so that is nothing new. 

 

regards Barbara x

User
Posted 27 Jul 2021 at 10:29

So frustrating isn’t it Barbara, as I posted on my own thread. I’ve been messed about Soooo much over the last months with zero commitment to appointments when it’s a serious disease. At one point I actually said to the receptionist ‘ is this conversation being recorded ‘ and she said yes. “ In that case be fully aware I’ll be asking my wife to prepare and inject me with my hormone therapy if you can’t give me an appointment with 3 weeks notice “.
And they called with an appt next morning. Covid is a serious case indeed but it’s becoming a reason for sloppy service in my opinion!
Good luck and wishes

Edited by member 27 Jul 2021 at 10:30  | Reason: Not specified

User
Posted 12 May 2021 at 16:13
Tony had a telephone consultation today, Dr p asked Tony how he was and he gave his usual response of OK, Dr then said well i don't know how but the new tablets seem to be working, your PSA has gone from 22 at the end of January to 7 so I will get you to carry on with the tablets, we where absolutely amazed as was Dr P so next appt in 3 months. He is going to get in touch with Tony's renal consultant about his swollen feet and to let him no that he is quite happy for him to go on water tablets to see if that helps and also to recommend more frequent blood transfusions for his anaemia. What can i say but over the moon at the moment.

regards Barbara x

User
Posted 25 Aug 2021 at 18:36

Tony's appt went well, his psa had gone down very slightly to 7.2 from 7.7 not much change but still down so will carry on with the treatment he is on, big sigh of relief.

 

regards Barbara x

Edited by member 25 Aug 2021 at 18:37  | Reason: Not specified

User
Posted 13 Mar 2021 at 06:58

Tony is starting his new treatment on Monday, he is cutting down on his prednisolone and will have stopped that by the end of next week, hopefully will have some good results when he gets his first check up from it in may. The Abiriterone worked from march 2019 until nov/dec 2020 so lets hope the new drug works for as long. Tony had a chat with his GP yesterday as they wanted to do a medicine review and he went through the side effects of all his tablets including the new one, apparently it will give him lovely soft skin but also hot flushes, had to laugh at that , he has been on HT for long enough so that is nothing new. 

 

regards Barbara x

User
Posted 13 Mar 2021 at 10:16

The hormone therapy he's been on causes hot flushes in around 80% of patients.

Diethylstibestrol doesn't cause hot flushes though - that's one of the advantages of the estrogenic hormone therapy drugs. Indeed, they're used by women on hormone replacement therapy to prevent hot flushes (although Diethylstibestrol wouldn't be used just for this purpose).

Wishing you all the best on the new treatment.

Edited by member 13 Mar 2021 at 10:17  | Reason: Not specified

User
Posted 13 Mar 2021 at 19:21
Well, the NHS budget will be pleased, as Abiraterone costs ninety quid a day and Stilbestrol about a penny a day!

If they both work, who cares about the cost?

Good luck.

Cheers, John.

User
Posted 13 Mar 2021 at 23:01

Originally Posted by: Online Community Member
Tony is still on Hormone injections 3 monthly, they are carrying on.

In that case, I still suspect the Diethylstilbestrol will stop the hot flushes. Interesting to see.

User
Posted 14 Mar 2021 at 01:39
My mate was on Stilbestrol for two years before it stopped working, with no side-effects whatever.

Cheers, John.

User
Posted 29 Mar 2021 at 06:36

so far Tony has had no side effects from the new tablets but i think no longer taking steroids has caused a loss of energy, he had an iron infusion on thursday (due to his CKD) and will have another one this Thursday and the Thursday after and hopefully this will improve his energy levels. We will not find out if the new treatment is working at all until early may so have got my fingers crossed.

 

regards Barbara x

User
Posted 29 Mar 2021 at 09:44

I hope Tony’s energy levels improve as more infusions are given. Keeping everything crossed for a good result in May.

Ido4

User
Posted 12 May 2021 at 17:34
That is so lovely to read Barbara - what a star your Tony is turning out to be!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 May 2021 at 18:32
Thanks Lyn I am still in a state of shock. xxx

User
Posted 13 May 2021 at 10:21

Brilliant news Barbara, so pleased for you both.

Ange x

User
Posted 13 May 2021 at 12:55

Fantastic news. Go Tony. 

Ido4

User
Posted 13 May 2021 at 12:58

Such good news. 

 

User
Posted 14 May 2021 at 14:53
Great news.

Mrs MAS

User
Posted 14 May 2021 at 18:54
Great news for yourselves and us all. Best wishes to you
User
Posted 30 May 2021 at 07:21
not such good news for Tony's Kidneys, now down to 5% and he is starting on dialysis tomorrow, to say he is nervous is an understatement, hopefully it will help with his energy levels but he will have to be on it 3 times a week so will be a big change for him.

regards barbara

User
Posted 31 May 2021 at 00:16

Sorry to hear this Barbara. However, I hope the dialysis makes Tony feel better.

User
Posted 31 May 2021 at 12:05

Hi Barbara,

I hope all goes well with the dialysis for Tony today and that this helps to boost his energy levels. Thinking of you both.

Ange x

User
Posted 08 Jun 2021 at 19:15
Great news 👍🙏
User
Posted 08 Jun 2021 at 20:04

Fantastic news for you both.

Ange x

User
Posted 08 Jun 2021 at 20:17
Barbara, such good news! Love to you both x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Jun 2021 at 09:47

Fabulous news. 

Ido4

User
Posted 09 Jun 2021 at 16:33

That’s great , life can be such a rollercoaster sometimes 🤦‍♀️

User
Posted 22 Aug 2021 at 07:28

Good luck with the appt hope it's good news.

User
Posted 22 Aug 2021 at 14:31

Hope all goes well for Tony on Wednesday and that he receives good news.

 

Ange x

User
Posted 22 Aug 2021 at 22:04
Fingers crossed for you xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Aug 2021 at 23:03

Good news Barbara. 

Dave

User
Posted 26 Aug 2021 at 10:19

That’s good news. Best wishes to you both.

Ido4

User
Posted 10 Sep 2021 at 21:11

Gosh Barbara, what a terrible mess. I hope things get better soon. 

Dave

User
Posted 10 Sep 2021 at 22:42
OMG. Hope things look up for you both soon.
User
Posted 13 Sep 2021 at 12:56

Just catching up with posts. So sorry to read this Barbara. Falling downstairs is hellish, I’ve been there.  Hope Tony gets dialysis today.

Ido4

User
Posted 13 Sep 2021 at 13:25

Hope Tony  gets his treatment. The journey sounds quite hard going. Take care of yourself too. 
leila x 

User
Posted 13 Sep 2021 at 15:59

Hi Barbara, I just looked on travelodge hotels Nottingham. Some nights are £41 others are more expensive, I know it's not great, but if you are seeing him on consecutive days it may ease some of the travelling. 

Dave

User
Posted 25 Sep 2021 at 12:32

Sorry to read about the broken bones and pain. Sending love and best wishes to you both. 

Ido4

User
Posted 25 Sep 2021 at 13:51

Sorry to read this news about your husband. Sending very best wishes for a speedy recovery for him and hope he gets transferred and all of his treatment soon 

User
Posted 02 Oct 2021 at 11:52
I am so sorry Barbara, I hope you get some progress soon x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Oct 2021 at 00:42
Lovely news Barbara - I hope he is back home with you soon x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Oct 2021 at 10:37

So pleased to hear Tony is up on his feet again and close to home.  All the best going forward and hope he’ll be back home with you soon.

Ange x

User
Posted 18 Oct 2021 at 08:59

Fingers crossed here too for you . Hope all goes well and Tony gets home, and feels better.

Phil

User
Posted 18 Oct 2021 at 10:26

Hope he gets home today.

Ido4

User
Posted 19 Oct 2021 at 09:21

Tony is home, hard work and shattered but home.

 

regards Barbara xx

User
Posted 19 Oct 2021 at 10:49
That's wonderful news - what a relief. Don't forget to take care of yourself while you are taking care of Tony - who nurtures the nurturer?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Oct 2021 at 11:06

Fabulous news. Take care.

Ido4

User
Posted 19 Oct 2021 at 14:26

Great news Barbara.  All the very best to you both and a “Happy Anniversary” for tomorrow!

Ange x

User
Posted 20 Oct 2021 at 23:02

I just read your profile.  Pleased to read he's home.
Best Wishes
Peter

User
Posted 01 Nov 2021 at 09:18

Barbara, I really feel for you and Tony.

I hope he feels a bit better soon and can get back up the stairs. 
Fingers crossed your appointment goes as well as it can 🤞 

Goid luck, thinking of you both x

Phil

User
Posted 01 Nov 2021 at 14:06

Thinking of you both Barbara and keeping my fingers crossed for Tony’s next meeting with his Oncologist.

With very best wishes,

Ange xx

User
Posted 30 Dec 2021 at 08:56

Tony had another fall yesterday. not a bad one but i heard a loud bang and when i went up he had fallen on the floor in the bedroom while getting dressed. it was dialysis day and he always has a sleep after so this was late afternoon, when i went in there he started crying and said he was useless and cannot get anything right, so we where both in tears. It took about half hour to get him up and he said about his life revolving round dialysis and not being able to do anything. Tony was sick on christmas eve and didnt have any dinner christmas day, sat in the front room while the family where round eating dinner in the back room. My daughter who lives in Kent was up and she kept getting tearful, i dont think she realised how downhill he had gone since she last saw him, he did rally round a bit later on. When he agreed to go on dialysis as his function had gone to 5% he thought it would give him a bit more energy but think it has made him worse. sorry for the long post just needed to get it out of my head.

 

regards Barbara x

 

ps Happy new year all xx

User
Posted 30 Dec 2021 at 13:57

Oh bless you Barbara.  It’s good to be able to let it all out on a forum such as this one, where everyone is there for you!  I’ve followed Tony’s journey and what a warrior he is.

Wishing you both all the very best going forward.

Ange x

User
Posted 30 Dec 2021 at 16:40
I am so sad to see this Barbara; it must have been very upsetting for all of you and a shock for your daughter particularly. You have been amazing throughout Tony's illness but especially this last few months - do remember while you are being strong for everyone else that you also need someone to be strong for you sometimes. We used to have a wives' / partners' mantra on the forum ... who cares for the carer? Sometimes, we can be that support but you also need something real and tangible; a short break to get your hair done or walk in the rain or to just be Tony's wife and not his nurse. I hope that you have that support around you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Jan 2022 at 12:13

So sad to read your post Barbara. Really hope Tony is feeling a bit better.

Hope you shake off the covid too and not too poorly with it.

Take care

Elaine

User
Posted 08 Feb 2022 at 16:44
Good luck both , fingers crossed 🤞
User
Posted 09 Feb 2022 at 10:43

Good luck for this afternoon Barbara, thinking of you both.

Ange x

User
Posted 09 Feb 2022 at 13:39

Best of luck for today 🤞🏼 

User
Posted 09 Feb 2022 at 18:46

Thinking of you both.

Ido4

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User
Posted 13 Mar 2021 at 10:16

The hormone therapy he's been on causes hot flushes in around 80% of patients.

Diethylstibestrol doesn't cause hot flushes though - that's one of the advantages of the estrogenic hormone therapy drugs. Indeed, they're used by women on hormone replacement therapy to prevent hot flushes (although Diethylstibestrol wouldn't be used just for this purpose).

Wishing you all the best on the new treatment.

Edited by member 13 Mar 2021 at 10:17  | Reason: Not specified

User
Posted 13 Mar 2021 at 12:56
Thanks for the good wishes, Tony is still on Hormone injections 3 monthly, they are carrying on.

barbara x

User
Posted 13 Mar 2021 at 19:21
Well, the NHS budget will be pleased, as Abiraterone costs ninety quid a day and Stilbestrol about a penny a day!

If they both work, who cares about the cost?

Good luck.

Cheers, John.

User
Posted 13 Mar 2021 at 23:01

Originally Posted by: Online Community Member
Tony is still on Hormone injections 3 monthly, they are carrying on.

In that case, I still suspect the Diethylstilbestrol will stop the hot flushes. Interesting to see.

User
Posted 14 Mar 2021 at 01:39
My mate was on Stilbestrol for two years before it stopped working, with no side-effects whatever.

Cheers, John.

User
Posted 29 Mar 2021 at 06:36

so far Tony has had no side effects from the new tablets but i think no longer taking steroids has caused a loss of energy, he had an iron infusion on thursday (due to his CKD) and will have another one this Thursday and the Thursday after and hopefully this will improve his energy levels. We will not find out if the new treatment is working at all until early may so have got my fingers crossed.

 

regards Barbara x

User
Posted 29 Mar 2021 at 09:44

I hope Tony’s energy levels improve as more infusions are given. Keeping everything crossed for a good result in May.

Ido4

User
Posted 12 May 2021 at 16:13
Tony had a telephone consultation today, Dr p asked Tony how he was and he gave his usual response of OK, Dr then said well i don't know how but the new tablets seem to be working, your PSA has gone from 22 at the end of January to 7 so I will get you to carry on with the tablets, we where absolutely amazed as was Dr P so next appt in 3 months. He is going to get in touch with Tony's renal consultant about his swollen feet and to let him no that he is quite happy for him to go on water tablets to see if that helps and also to recommend more frequent blood transfusions for his anaemia. What can i say but over the moon at the moment.

regards Barbara x

User
Posted 12 May 2021 at 17:34
That is so lovely to read Barbara - what a star your Tony is turning out to be!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 May 2021 at 18:32
Thanks Lyn I am still in a state of shock. xxx

User
Posted 13 May 2021 at 10:21

Brilliant news Barbara, so pleased for you both.

Ange x

User
Posted 13 May 2021 at 12:55

Fantastic news. Go Tony. 

Ido4

User
Posted 13 May 2021 at 12:58

Such good news. 

 

User
Posted 14 May 2021 at 14:53
Great news.

Mrs MAS

User
Posted 14 May 2021 at 18:54
Great news for yourselves and us all. Best wishes to you
User
Posted 30 May 2021 at 07:21
not such good news for Tony's Kidneys, now down to 5% and he is starting on dialysis tomorrow, to say he is nervous is an understatement, hopefully it will help with his energy levels but he will have to be on it 3 times a week so will be a big change for him.

regards barbara

User
Posted 31 May 2021 at 00:16

Sorry to hear this Barbara. However, I hope the dialysis makes Tony feel better.

User
Posted 31 May 2021 at 12:05

Hi Barbara,

I hope all goes well with the dialysis for Tony today and that this helps to boost his energy levels. Thinking of you both.

Ange x

User
Posted 03 Jun 2021 at 07:56
Well, day before Tony started on dialysis hi informed me that he was swolllen down below when i asked him where he said "feels like i have an extra testicle" so phoned surgery on tuesday and he is now going for an emergency ultrasound next tuesday, I am really hoping it is just a cyst, The Dr he spoke to actually said to him at least you PSA is normal its 7% , do they not read a patients notes before they talk to them.

fingers crossed

Barbara

User
Posted 08 Jun 2021 at 18:44
Tony had an ultra sound scan today and nothing untoward was found and he was told nothing to worry about.

big sigh of relief.

barbara

User
Posted 08 Jun 2021 at 19:15
Great news 👍🙏
User
Posted 08 Jun 2021 at 20:04

Fantastic news for you both.

Ange x

User
Posted 08 Jun 2021 at 20:17
Barbara, such good news! Love to you both x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jun 2021 at 21:26
Thanks all, i was so relieved. xx
User
Posted 09 Jun 2021 at 09:47

Fabulous news. 

Ido4

User
Posted 09 Jun 2021 at 16:33

That’s great , life can be such a rollercoaster sometimes 🤦‍♀️

User
Posted 27 Jul 2021 at 09:18
Well Had bloods booked for thursday as thought he had an appt start of august but had had no notification of it, Phoned Dr Ps secratary start of last week who said it was on the 4th aug so next week, still no notification in writing or text so yesterday decided to phone out patient dept, no record of appt so over an hour later and speaking to 3 different departments got through to secretary again, she said yes its on the 4th i said ok just wanted to make sure as i know he goes on holiday start of august every year (have been seeing him for over 15 years an he goes to mallorca to see his family then cause that is where he is from) she checked and said yes he is not there on 4thbut Tony could see someone else, said he would rather not and now he will see Dr P on the 25th august, much longer wait but would rather speak to someone who knows his complete history and Tony rather than someone who would likely skim through it.

sorry for long post.

barbara

User
Posted 27 Jul 2021 at 10:29

So frustrating isn’t it Barbara, as I posted on my own thread. I’ve been messed about Soooo much over the last months with zero commitment to appointments when it’s a serious disease. At one point I actually said to the receptionist ‘ is this conversation being recorded ‘ and she said yes. “ In that case be fully aware I’ll be asking my wife to prepare and inject me with my hormone therapy if you can’t give me an appointment with 3 weeks notice “.
And they called with an appt next morning. Covid is a serious case indeed but it’s becoming a reason for sloppy service in my opinion!
Good luck and wishes

Edited by member 27 Jul 2021 at 10:30  | Reason: Not specified

User
Posted 28 Jul 2021 at 08:03

It is really annoying, more so because if i know that Dr has the same 2 weeks holiday every year surely they must know as well, still we would rather wait the extra weeks than speak to a Dr that does not know Tony and his history.

 

regards Barbara

User
Posted 22 Aug 2021 at 07:00

Tony has his appt on Wednesday, really nervous as usual, he seems to have a lot more aches and pains since the last appt but we will wait to see what his results are, Tony as usual just takes it all in his stride. Hopefully the tablets are still working, I have everything crossed.

 

regards Barbara x

User
Posted 22 Aug 2021 at 07:28

Good luck with the appt hope it's good news.

User
Posted 22 Aug 2021 at 14:31

Hope all goes well for Tony on Wednesday and that he receives good news.

 

Ange x

User
Posted 22 Aug 2021 at 22:04
Fingers crossed for you xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Aug 2021 at 18:36

Tony's appt went well, his psa had gone down very slightly to 7.2 from 7.7 not much change but still down so will carry on with the treatment he is on, big sigh of relief.

 

regards Barbara x

Edited by member 25 Aug 2021 at 18:37  | Reason: Not specified

User
Posted 25 Aug 2021 at 23:03

Good news Barbara. 

Dave

User
Posted 26 Aug 2021 at 10:19

That’s good news. Best wishes to you both.

Ido4

User
Posted 10 Sep 2021 at 17:05
Well after the good news Tony fell down the stairs backwards wednesday evening, waited 5 hours for ambulance as he was in so much pain he was laid on his side in the hallway all that time, he is now in queens medical centre nottingham in the trauma ward laid flat on his back with a brace on his neck, 2 or 3 fractures to the spine and broken ribs, He can have 3 visits a week by 1 person so i am seeing him tomorow and will then try to get there 3 times next week, long trip from skegness and i dont drive. They have said he will be in there at least a week Tony thinks longer. luckily he seems to have ful movement in his legs etc, he should have had dialysis today but looks like he will be getting that tomorow.

life is a b****

regards barbara x

User
Posted 10 Sep 2021 at 21:11

Gosh Barbara, what a terrible mess. I hope things get better soon. 

Dave

User
Posted 10 Sep 2021 at 22:23

Thank you but it looks like he has got to have an operation, he should have had dialysis today and it has not happened, they have said it should be tomorow or sunday so fingers crossed, i am meant to be seeing him tomorow but if he has op tomorow cant see that happening, on the plus side they have now put a morphine drip in that he can press every 5 minutes and when i spoke to him last he was much more co herant and had spoken to the dr and felt better about things. he has been nil by mouth since wednesday night as well.

 

barbara x

Edited by member 11 Sep 2021 at 05:09  | Reason: spelling

User
Posted 10 Sep 2021 at 22:42
OMG. Hope things look up for you both soon.
User
Posted 11 Sep 2021 at 08:55

So sorry to hear this news 
X Barry

User
Posted 13 Sep 2021 at 06:00

Tony is still in queens medical centre, he has broken multiple ribs both sides and damaged his spin in a couple of place. but he does not need an operation. They tried a spinal block for the pain but did not do much good and he has now had an epidural, I have only managed to see him onceas only allowed 3 visits a week by the same person and I do not drive and it is a 5 hour round trip, wm seeing him again on wednesday. Tony has still not had dialysis last one was wednesday morning laast week so I am really worried about that, just hope he manages to get it done today. He is not having to ly flat on his back now, not sure if he has had any food yet but hope so.

 

barbara

User
Posted 13 Sep 2021 at 12:56

Just catching up with posts. So sorry to read this Barbara. Falling downstairs is hellish, I’ve been there.  Hope Tony gets dialysis today.

Ido4

User
Posted 13 Sep 2021 at 13:25

Hope Tony  gets his treatment. The journey sounds quite hard going. Take care of yourself too. 
leila x 

User
Posted 13 Sep 2021 at 15:59

Hi Barbara, I just looked on travelodge hotels Nottingham. Some nights are £41 others are more expensive, I know it's not great, but if you are seeing him on consecutive days it may ease some of the travelling. 

Dave

User
Posted 13 Sep 2021 at 16:29

Hi dave

no its not consecutive days it is just 3 visits in a week , thanks for looking though.

 

regards barbara

User
Posted 23 Sep 2021 at 09:34
Tony is now in City hospital nottingham, hopefully he will be transfered to Lincoln either today or tomorow, he has 8 broken ribs and some damage to his spine, still hasn't been out of bed and in a lot of pain. Tony's oncologist is in Lincoln hospital and his renal team work from there as well so I will feel happier about that and I can get a bus there and by car it is only an hour away.
User
Posted 25 Sep 2021 at 12:32

Sorry to read about the broken bones and pain. Sending love and best wishes to you both. 

Ido4

User
Posted 25 Sep 2021 at 13:51

Sorry to read this news about your husband. Sending very best wishes for a speedy recovery for him and hope he gets transferred and all of his treatment soon 

 
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