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User
Posted 19 Aug 2020 at 17:58
🤞🤞for both

Good luck

Cheers
Bill
User
Posted 19 Aug 2020 at 21:55
Hi Barbara ,
Good luck for Tony ,
not sure if my posts are going up ok
but thinking of you both

Barry
User
Posted 20 Aug 2020 at 02:08

Hi Barbara, 


Good Luck to both of them.


You are all in my prayers. 


Steve x 

User
Posted 21 Aug 2020 at 07:02
Tony went for his scan and they let me go in the hospital with him, as he has CKD5 he cannot have scan with contrast so o wanted to let them know as he gets a bit confused what treatments he has had and what he is having, the nurse came from the waiting room to get him and said i could go to the other waiting room with him as they where doing the scans in a mobile unit, I said that i was with him as he gets a bit confused with the questions , she said it is just questions about covid which he can answer so i told her that i just wanted to let them know about the contrast ( i had already explained this when they phoned to make the appt) she said yes they would need to know when he was having his next dialysis? i then had to go through that he is not on dialysis yet even though his kidney function is on 7% and if they use the die he would crash straight on to it. When he went in for the actual scan he said they still had to contact someone to make sure he could have the scan without contrast. what a palava , you would think they would have a record of this as he has had so many scans and has not been able to have the contrast ones for many years but this happens every time. now just under a week to get the results and find out if the abbi is still working.

regards Barbara
User
Posted 21 Aug 2020 at 07:07
The NHS is a minefield of incompetence and lack of ownership of patient outcomes. Had to instruct my mother's GP today on how to effectively manage a difficult infection, his defense was he hadn't seen her before, actually had had 2 weeks previously just hadn't bothered recording the consultation or its outcome.
User
Posted 21 Aug 2020 at 10:09

It’s sad when you have to keep reminding professionals about their patient’s situation and needs. No joined up thinking unfortunately. Hope scan shows Abiraterone is working.

Ido4

User
Posted 21 Aug 2020 at 12:20
Fingers crossed for good results Essexbabe x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Aug 2020 at 13:24

Hi Barbara,


You can do without all that added stress.  Hope all goes well with Tony’s results.


Angex

User
Posted 26 Aug 2020 at 13:43
tonys psa has now gone up to over 7 so not good news, he is to carry on with the abiriterone for now, Dr had not got all of the results from the scan but he could see that the lympth nodes are growing again so not good, no chance of any more RT so the only other thing available would be more chemo but Dr thinks that would put him at a lot of risk of infections etc because of his kidney problems, did tell Dr we was going on holiday and he aske where so i said do you want the truth so i told him majorca and he said good for you, he had just been in quarantine himself as had jus come back from there. Had a bit of good news Tony is getting his cataracts done next month.

regards Barbara x
User
Posted 26 Aug 2020 at 16:06
Enjoy your holiday!
User
Posted 28 Aug 2020 at 09:09

We’ve just got back from Southern Spain and had a wonderful time! It’s all about making good memories isn’t it? Quarantine now but nearly finished X

User
Posted 12 Sep 2020 at 07:32

Just received the letter from last appt and does not make good reading when seen in black and white, Tonys PSA has gone from 0.5 in feb to 1.1 in may, 3.8 in june,5.8 in july to 6.4 in aug so going up fast. it then says treatment options left unfortunatley are quite limited. Cabazitaxel would be the next line but I have strong reservations about such an aproach in the absence of symptoms considering his known renal impairment and the fact that chemo would have very limited effect controlling his disease and,  therefore, I cannot see the benefits outweighing the possible side effects. results of scan are progression to lymph nodes only.


On the plus side we had a lovely holiday in Mallorca and Tony is getting the first of his cataracts done next week as long as his covid test comes back negative.


 


regards Barbara


 


 

User
Posted 12 Sep 2020 at 15:54

Sorry to read about the PSA rises. Mallorca sounds amazing to me at the minute, sounds like you had a nice time there.


 

Ido4

User
Posted 12 Sep 2020 at 17:04
It was lovely there, we where in a private villa and when we ventured out every one had masks on and social distancing was in place every where, felt much safer than in sunny skegness. x
User
Posted 12 Sep 2020 at 22:41
So pleased that you managed to get to Mallorca- fingers crossed that the progression stays slow x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Sep 2020 at 08:43
Bit of good news here, Tony has had the first one of his cataracts done and he can watch tv clearly already, booked in to get the other one done on 14th october.

regards Barbara x
User
Posted 18 Sep 2020 at 09:16
How lovely that must be for him !!
Best wishes x
User
Posted 18 Sep 2020 at 18:53
Thanks Chris, he should have been having them done in march but then lockdown came along.

regards Barbarax
User
Posted 18 Sep 2020 at 21:26

Cataract operations are amazing! 

User
Posted 29 Sep 2020 at 10:22

Saw Tony's renal specialist yesterday and he has confirmed that dialysis will be needed soon, the predicament is I showed him the last letter from Tony's oncologist and Tony will have to make a decision on what he wants to do, he is seeing renal Dr again in 3 weeks after he has had his other eye done, Dr is going to arrange for Tony to have a blood transfusion as his hb is down to 80. Seeing the oncologist is November about next steps as the treatment at moment is not working. The renal dr has said it is up to Tony about dialysis and how much it will impact his life and also how long he is likely to have left due to the cancer, if he is told 2 to 3 years dialysis is probably worth it but if it is 6 months could be a different matter. I have told Dr M (renal) that i will try to get Tony to talk about it and see what he wants to do, I have also said to Tony to maybe talk to our daughter about it, it is so hard to get him to open up because he really does not want to know about his illnesses, he tends to bury his head in the sand and just do what the doctor advises but now he really does have to make a choice.


 


regards Barbara

User
Posted 29 Sep 2020 at 11:53
Tough decisions, thoughts are with you..
User
Posted 23 Oct 2020 at 08:09
Tony spoke to his renal specialist on monday of this week and the Dr is waiting to hear back from Tony's Oncologist about what is happening with the Cancer before he speaks to Tony again on the 9th November, so another waiting game, but at least the renal dr will maybe be able to give Tony a bit more advice on weather or not to have the Dialysis. His bloods had improved a little bit so a few more weeks will not make a lot of difference. Tony has now had both cataracts done so that is good.

regards Barbara x
User
Posted 23 Oct 2020 at 09:55

Thinking of you both.
sounds like you are nearer a dialysis decision. 

Ido4

User
Posted 24 Nov 2020 at 09:46

Tony has an appt tomorrow with his oncologist, we spoke to the renal specialist about 3 weeks ago and he had heard back from the oncoligist who confirmed that treatment is no longer working and he would not recommend any more chemo, he did say that there may be another tablet he may be able to try but is not sure if it would work or not so we will find out at the appt, we will then be speaking to renal Dr on monday to find out if it will be worthwhile for Tony to go on dialysis or not due to how it will affect his QOL. Feeling very nervous at the moment.


 


regards barbara x

User
Posted 24 Nov 2020 at 10:32

Thinking of you both. It is a very frightening time for you X

User
Posted 24 Nov 2020 at 14:10
Wishing the best news possible for you both.

As always thinking of you

Ray x
User
Posted 24 Nov 2020 at 17:24
Thinking of you both.
User
Posted 24 Nov 2020 at 23:04

Thoughts are with you both.


 

Ido4

User
Posted 25 Nov 2020 at 01:27

A big virtual (((hug)))  from me Barbara - we haven't had many of those on here recently.

Edited by member 25 Nov 2020 at 11:02  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Nov 2020 at 01:33

Tony & Barbara,


I hope they are able to help and are able to sort out some suitable treatment at this difficult time. 


You are in my thoughts and prayers. 


Steve x 

User
Posted 25 Nov 2020 at 13:31
we got all the way to the hospital and it turned out they had sent the wrong letter and it was a telephone consultation, Tonys PSA had not gone up quite as fast as it had been and the next treatment would be coming off the Abi and taking dexamethasone so the recommendation was to stay on the Abi till February unless there is any more developments and then coming off that and trying the dexamethasone. Have a phone consultation with renal consultant on monday hopefully he will have got consultation notes from today by then but nt sure if he will have.

thanks all for you good wishes.

regards Barbara x
User
Posted 25 Nov 2020 at 16:23

How frustrating Barbara. Good to hear PSA rise has slowed and time on abiraterone is extended. Best wishes for Monday’s telephone appointment.

Ido4

User
Posted 28 Nov 2020 at 15:44
update on Tony's PSA 6.9 in august, 14.4 sept 15.4 Oct, Tonys oncologist has also put in letter he would be surprise if it was 3-6months unless there was some sort of emergency but on the phone he did mention 12 months . I think this will probably rule out Tony going on dialysis but will find out on monday what renal dr has to say.

regards barbara.
User
Posted 29 Nov 2020 at 18:21

All the best for Monday Barbara. Thinking of you both.

Ido4

User
Posted 30 Nov 2020 at 16:51
Tony spoke to his renal specialist today, he agreed he did not need to go on dialysis just yet and confirmed he had heard from Oncologist, he asked Tony if something happened and it was an emergency and he was rushed into hospital would would he want them to dialysis him if needed and Tony has said yes he would. His next appt with renal is in 2 weeks so appts are getting closer together and that is quite scary, makes things all too real, I dont think Tony realises quite how serious things are getting or if he does he is just shutting it out.

regards Barbara
User
Posted 30 Nov 2020 at 17:28
I am not sure what to say Barbara except that I am thinking of you xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Dec 2020 at 05:46
Thanks Lyn, the silly thing is he is not ill as such, he has no symptoms as such, he is jus more fatigued than he used to be but he does not feel ill and never really has only when he was on chemo but other than that nothing. This is a good thing really but makes it harder to take things on board.

regards Barbara x
User
Posted 17 Dec 2020 at 09:20
Tony had a phone consultation with his Kidney Dr on Tuesday and his PSA has now gone up to 21, that is an increase of almost 5 since 16th October. Oh well lets see what 2021 brings. Merry Christmas everyone and a Happy and safe new year.

regards Barbara x
User
Posted 21 Dec 2020 at 08:18

I’m sorry to hear this Barbara. Stay safe and take care x

User
Posted 21 Dec 2020 at 10:23

Sorry to read this Barbara. Take care.

Ido4

User
Posted 22 Jan 2021 at 07:03

Hi


well Tony has now been taken of the Abiriterone, waiting for his next appt on 3rd of Feb when he will most probably be put on Dexamethasone , will start a new thread when he speaks to his consultant.


 


regards Barbara x

User
Posted 04 Feb 2021 at 06:15
Tony spoke to his consultant yesterday and his PSA has gone down from 21 in december to 17 in January, His consultant has put him back on abbi for a month and is organising a scan and will speak to him in a months time after the scan to see what is going on, Tony is going for a blood transfusion today as his blood count was very low, hopefully that will give him a bit more energy.

regards Barbara
User
Posted 04 Feb 2021 at 08:42

Good luck Barbara

User
Posted 04 Feb 2021 at 14:59

Hi Barbara,


Good news that Tony’s PSA has gone down. Hopefully Tony’s energy levels will pick up following the transfusion today.


Thinking you both.


Ange x

User
Posted 04 Feb 2021 at 20:27

Good to see a PSA fall Barbara. I hope Tony feels the benefit of the blood transfusion.

Ido4

User
Posted 27 Feb 2021 at 06:09

Hi


Tonys PSA has gone up to 22.5, had his scan 2 weeks ago and will be speaking to his oncologist on wednesday to see what next steps will be . He finally got his blood transfusion and his blood count has gone up from 69 in january to 85 in feb so he has a lot more energy so that is good.


 


regards barbara

User
Posted 27 Feb 2021 at 07:28

Hi Barbara,


let us know how you get on at the appointment on Wednesday. 
xxx

User
Posted 27 Feb 2021 at 10:48
Pleased to read that the new blood gave him a boost. The PSA rise isn't too steep so hopeful that the onco conversation will be positive x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Mar 2021 at 18:58

Tony spoke to his oncologist today, the lympth nodes that he had RT on have increased in size but not a huge amount but something showed up on on his ribs near the shoulder blade, His oncologist thinks it maybe osteoartheritus due to how long he has been on HT, he has told Tony to get in touch with him if he starts to get pain near there and he will then probably sort out an MRI scan. He is to come off the abbi once he gets the new tablets, he is to start cutting down on the prednisalone now, 1 a day for a week then one every other day for a week and then stop. His next appt with the oncologist will be about 10 weeks time so hopefully these new tablets will do something for Tony.


regards Barbara

Edited by member 03 Mar 2021 at 19:05  | Reason: Not specified

User
Posted 03 Mar 2021 at 19:07
What are the new tablets Barbara?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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