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User
Posted 19 Feb 2022 at 17:05

Just recieved letter from consultant re his phone appt. new treatment is the remaining alternative to try to control the prostate cancer. Tony is having an early referral for a  Macmillan nurse . Tony is having an urgent scan without contrast to see if there is any areas that may benefit from radiotherapy or it might benefit from the paliative care planning he might benefit from in the near future. Not good news but hey ho.


 


regards Barbara xx

Edited by member 23 Feb 2022 at 06:42  | Reason: spelling

User
Posted 20 Feb 2022 at 00:06
Oh Barbara, I am sorry that the news wasn’t better. If they can identify any areas for palliative RT that will be something. How is Tony in himself?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Feb 2022 at 15:57
Sorry Barbara - hopefully, he will do 16+ years like his brother.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Apr 2022 at 15:00

Hi Lyn


 yes it is a lot to deal with as you say but we have macmillan nurses on board now and get a phone call every weekor so to see how things are going, Tony in himself is very weak and the dialysis 3 times a week knocks him out for the day. He has quite a lot of pain but it is now mostly under control, if he needs anythingthe macmillan nurse sorts it out with the Drs and renal Dr so we dont have to keep going round the houses to find out who we need to talk to.we also have a just in case box with all sorts of medication in for use in an emergency by marie curie nurses if during the night and comunity nurse during the day, Hopefully he will not be needing this for a long while yet.


 


regards Barbara x

User
Posted 17 May 2022 at 01:10
Hi Barbara, I am so sorry that Tony has declined again - have they managed to do the scan yet?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 May 2022 at 07:55

Hi Barbara so glad  to hear  that  Tony's pain  is  more controlled and that  his  scan  revealed no  spinal cord compression. It has  been  an  exhausting time  for  you  both  but hopefully  the Oncologst review  will  be  helpful  going  forward. Take  care.


Regards Ann

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User
Posted 20 Feb 2022 at 00:06
Oh Barbara, I am sorry that the news wasn’t better. If they can identify any areas for palliative RT that will be something. How is Tony in himself?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Feb 2022 at 04:52
Hi Lyn, Thanks for asking, Tony is quite weak but seems as if he is feeling a bit better in a way, he is trying to do more and he had his 4th jab yesterday and drove there, only a 10 minute drive but is only the 2nd time he has driven since his fall in september. I think now it gets light earlier is helping as he goes for dialysis about 20 past 7 in the morning and it was like going in the middle of the night it was so dark.


Barbara x
User
Posted 25 Feb 2022 at 07:07
Feeling quite anxious, Tony's brother was due a telephone consultation saturday but they have changed it to face to face in Lincoln, I think they have now realised it is going to be bad news but it is almost 16 years to the day when Tony was told, 1st march 2006 although he was actually diagnosed dec 2005 according to his notes just not told. I had been pestering and pestering Mark to get tested but he did when Tony was first diagnosed and then didnt again until recently.

oh well fingers crossed and what will be will be.

regards Barbara x
User
Posted 27 Feb 2022 at 14:38
Well Tonys brother does have prostate cance T3 but i do not know rest of staging, he has to have a bone scan and will find out after that if he can have removal or if it will be RT.

barbara x
User
Posted 27 Feb 2022 at 15:57
Sorry Barbara - hopefully, he will do 16+ years like his brother.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Feb 2022 at 17:04

Really hope so Lyn, Tony was only 61 when diagnosed Mark is going to br 69 in april, will just have to wait and see the treatment and staging.


 


regards Barbara x

User
Posted 05 Mar 2022 at 13:31

OK Tony's brother is gleason 9 T3a, he has seen urologist who has said he should be ok to have RP, he had a full body scan last week and according to the results will find out what he will be offered. He has an appt with Dr P (Tony's oncologist) in a couple of weeks, looks like it will be a phone appt so they are not too happy about that. I think they are set on RP but will see once he has spoken to the oncologist, think they are both in a shock at the moment.


 


regards Barbara x

User
Posted 17 Mar 2022 at 06:42
Tony hd appt with oncologist yesterday, he had not had a blood test as it was for results of scan, not too bad results, could not see any sign of it in the bones but node that Tony had had RT to had grown a bit, also quite a few nodes in chest area but on small ones but have to keep an eye in case he gets short of breath or coughing to then get in touch before his next appt in may. will have blood test start of April and another at start of may as Dr surgery only prescribed the steroid about end of feb so not enough time to see if they are helping. Tony's brother is seeing Tony's oncologist today, i told Dr P and he said he hasd seen the name and thought he must be related as an unusual surname and from same area, its a face to face appt so will find out later what his treatment will be.

regards Barbara x

User
Posted 06 Apr 2022 at 07:53

Tony's brother is going the HT and radio therapy route, if he had gone for RP he would have needed the RT as well so decided against it, the tumour is very close to the bladder but he has been told he has a good chance of a cure so fingers crossed for him.


 


regards barbara x

User
Posted 07 Apr 2022 at 06:48

hi


just seen Tony's PSA results, first one since starting dexamethasone, PSA has gone up from 21 on 2nd feb to 36.7 on 5th April, not good news, not due an appt with oncologist until sometime next month .


 


 


barbara x

User
Posted 07 Apr 2022 at 13:24
You have so much to deal with at the moment - that PSA rise must be very worrying but I think you are getting to the stage where PSA is just a number and it is how Tony is feeling that is a better indicator of what's going on.

It is good to have both brothers under the same consultant - at one point, John, his dad, his mum and my dad were all under the same urologist which meant that I only had to deal with one point of contact and the urologist got to know our family very well!

Stay strong Barbara x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Apr 2022 at 15:00

Hi Lyn


 yes it is a lot to deal with as you say but we have macmillan nurses on board now and get a phone call every weekor so to see how things are going, Tony in himself is very weak and the dialysis 3 times a week knocks him out for the day. He has quite a lot of pain but it is now mostly under control, if he needs anythingthe macmillan nurse sorts it out with the Drs and renal Dr so we dont have to keep going round the houses to find out who we need to talk to.we also have a just in case box with all sorts of medication in for use in an emergency by marie curie nurses if during the night and comunity nurse during the day, Hopefully he will not be needing this for a long while yet.


 


regards Barbara x

User
Posted 14 May 2022 at 06:14

Tony is having an urgent scan on Tuesday, earlier in the week he could hardly walk, He could not lift his feet, I had to help him down the stairs as he had to have dialysis at the unit so could not stay in bed, he was just dragging his feet along. The Macmillan nurse was coming the next day and went through all his symptons with him and she contacted the oncology dept, she was not sure if they would admit him but after they spoke to him they decided on urgent scan, as this is with contrast it can only be done on non dialysis days and when he is going to have dialysis within 24 hours. his psa has risen again from 36.7 in april to 62.7. fingers crossed for results bing not too bad.


 


 


regards barbara x

User
Posted 17 May 2022 at 01:10
Hi Barbara, I am so sorry that Tony has declined again - have they managed to do the scan yet?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 May 2022 at 02:35

Hi Lyn, 


Thank youu, Tony is having his scan today so fingers crossed for that, His walking has improved a  bit so thats something.


 


Barbara xx

User
Posted 24 May 2022 at 08:44

Hi  Barbara....just wondering  how Tony is  doing  and y ourself  as  a  very stressful  time for  you  both awaiting  scan  result. Hope  it  is  a favourable.


Regards


ANN  


USERNAME  CARA

User
Posted 25 May 2022 at 07:17

Hi Lyn and Ann, Tony is up and down really , he is good at the moment, he has had the results of the scan and no spinal chord compresion which is what we where worried about but more deteriation to the spine and a lot of inflamatione to the lower back. Tony pain is under control at the moment, they upped all of his painkillers and that seems to be working ok, He has an appointment with his oncologist next week so will know more then.


regards Barbara x

Edited by member 25 May 2022 at 07:23  | Reason: Not specified

User
Posted 25 May 2022 at 07:55

Hi Barbara so glad  to hear  that  Tony's pain  is  more controlled and that  his  scan  revealed no  spinal cord compression. It has  been  an  exhausting time  for  you  both  but hopefully  the Oncologst review  will  be  helpful  going  forward. Take  care.


Regards Ann

User
Posted 02 Jun 2022 at 08:06

hI, Tony had his appt with Dr P , he was happy to hear Tony was feeling ok ish. his PSA had gone done a very smal amount so he is keeping him on the steroids for now because he said it is very unusual for it to stabalise at his stage so he will review him again in August. He asked Tony if he wanted him to review him still every 2 months or to just be under the palliative nurse and Tony would rather talk Dr P so that is what has been decided plus the nurse phones every few weeks xx


 

 
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