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Metastasis prostate cancer

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User
Posted 28 Feb 2019 at 15:52

Hi I was diagnosed in January 2018 with stage 4 metastatic prostate cancer and it had spread to my spine lymph nodes, seamal vasacles,hips and sacram i am on zoladex injections and densoumab injection every 28 days ,although i am feeling ok just tired and lack of get up and go and weight gain and man boobs, I Cannot have chemotherapy as I have leukaemia and also had a heart attack in 2016 ,and osteoporosis in my spine as well other than that i im in good health lol ,my PSA is now down to .0.5 from 62 not that high , i also recived 6 rounds of radiotherapy as the oncologist has said that's all i can have as  is incurable, My question is as my PSA staying stable at the moment does it mean the cancer will not spread as long as the hormone injection are working . Just looking for advice ,as I have started to get a lot of pain in my legs now I have an oncologists appointment  on Monday  4th march ,I have  a few questions ready and hopefully get some answers then 

User
Posted 28 Feb 2019 at 22:00
First, it is really important to change your name - using your email address opens you up to all sorts of spam and unwanted attention. If you are not sure how to change it, message the moderators who will help you.

While ever your PSA stays low and stable, the cancer cannot spread. The hormones are starving it. If you have had full scans (as it seems you have, to know where all your mets are) then the pains in your legs are unlikely to be directly caused by the cancer but hormone treatment can cause a lot of leg pain, and the mets in your spine & hips could lead to some transferred pain.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Feb 2019 at 22:12

You could ask if you can have Tomoxifen for the manboobs. Might be contraindicated by other health issues though.

User
Posted 17 Jun 2022 at 16:23

You can request a copy of your hospital records. It varies exactly how you do this, but often through PALS, or at least they will know.

Your new hospital should have requested them from your previous hospital. It may be that everyone's too busy to read them anyway, particularly given you are stable. Might be different if you weren't.

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User
Posted 28 Feb 2019 at 22:00
First, it is really important to change your name - using your email address opens you up to all sorts of spam and unwanted attention. If you are not sure how to change it, message the moderators who will help you.

While ever your PSA stays low and stable, the cancer cannot spread. The hormones are starving it. If you have had full scans (as it seems you have, to know where all your mets are) then the pains in your legs are unlikely to be directly caused by the cancer but hormone treatment can cause a lot of leg pain, and the mets in your spine & hips could lead to some transferred pain.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Feb 2019 at 22:12

You could ask if you can have Tomoxifen for the manboobs. Might be contraindicated by other health issues though.

User
Posted 28 Feb 2019 at 22:16

Thank you Lyn for all your help, and I have changed my information and thank you for the advice. I have read a lot of stories and information on this forum. And find it very helpful I had my Zoladex 10.8 mg last week so you are probably right Tommy 12

Edited by member 28 Feb 2019 at 22:24  | Reason: Not specified

User
Posted 28 Feb 2019 at 22:18

Thank you Andy  will talk to my oncologist on Monday take care Tommy 

User
Posted 08 Mar 2019 at 12:40
Hi to all just an update so far have been to see my oncologist this week my PSA is still at 0.5 so happy with how every think is going at the moment ,my oncologist has said that all that has gone on regarding the Mets i look so well which is very reasuraing ,yes I do get tired most of the time but do what I can when I can ,my oncologist has said if the treatment there are other treatments available, but chemotherapy is not one of them as it may set off the leukaemia, when i think back to January 2018 and was told i have 8 months to 2 years left i think we have come a long way since then.myself and my wife live for every day at the end of the day we must always remain positive, I also asked my oncologist about my man boobs and has offered radiotherapy but not sure what that will do as she does not want to give me any other medication with all the other health issues i have

best wishes to you all

User
Posted 09 Mar 2020 at 21:54

Hi to you all its been a year since I put anything on this site but over all it has been a good year apart from having shingles which knocked me for 6 all is still stable PSA at 04 had an appointment with the oncologist on 6/03/2020 and said to me concidering how I was 2years age I am doing remarkable which was good to hear I'm a very positive person and you must carry on although some days can be hard but I only do what I can and stay strong, I have still got to have hormone injection every 3 months and Densoumab once a month, I have also put on 2 stone in weight although I do walk a bit more on good days oncologist said that hormone can do that and also have a nice pair of man boobs with I find hard to deal with but it is what it is I know my prostate cancer in incurable but it does not stop me I have a wonderful wife and family so we all just carry on and enjoy life the best we can best wishes to you all and never give up 

User
Posted 09 Mar 2020 at 22:17
Tommy, what a fantastic update - apart from the shingles and the moobs, obviously. Whatever you are doing, it seems to be working!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Mar 2020 at 22:23

Thank you Lyn hope you and your family are well as I said I have not been on the forum for a while but I stay positive most of the time which I think also helps 

User
Posted 10 Mar 2020 at 07:24

Hi Tommy

 

It was so nice to read your positive posts a year apart. We are relatively new here, husband diagnosed July 2019 incurable with spread to distant and pelvic lymph nodes. Hes been on prostap since then, he has had chemo and about to start radiotherapy. He still works full time and we both try to  be positive about it all and try not to let it get us down.

Best wishes 

 

Mrs MAS

User
Posted 10 Mar 2020 at 10:37

Hi there I find being on this Forum helps us you will find a lot of support hear I have always said to family and friends you can only worry about the things you can control and don't worry about the things you can't if it's not to personal how is you husband doing it's good that you are staying positive take care 

User
Posted 10 Mar 2020 at 10:47

Hi Tommy,

He is doing amazing, had chemo which finished at Christmas. HIs post chemo scan showed things stable and lymph nodes shrunk. Obviously he is on lifelong HT, not doing badly with flushes so far, has some bone type aches, we are not sure if that's related to the Prostap or not. His oncologist has started him on calcium tablets.

He is starting radiotherapy on 26 March 2020- having 37 sessions. After that we are going to try and get a well deserved holiday!

Best wishes to yourself also and hope your situation remains good for a long time to come.

Mrs MAS

User
Posted 10 Mar 2020 at 10:54

That's good news I could not have chemotherapy as I have other health issues and could only have 6 rounds of radiotherapy and like your husband I'm on hormone treatment life long  but as ever think is staying stable I happy with that you all take care and enjoy your holiday x

User
Posted 17 Jun 2022 at 16:14

Hi everyone 

Just an update its been a while but so far everything is still staying stable now as I had a blip in July 2020 as PSA started to go up slightly so my oncologist has put me on casadex as well as Zoladex and PSA  is now 0.06 we have now moved by the seaside and bought a mobility scooter to get out more as the bone pain is getting worse but we must carry on , I have a new oncologist now I had some scans after I was not doing so well at the time the scan showed that the cancer is still there so not surprisingly as I know it's incurable but at least it's staying stable I did find it odd that the new hospital said thay had no records to compare to ??I have all the letters for my last oncologist, so surly the new oncologist should have copys of everything can any Iet me know please  how I can  get a copy of my hospital records, you all stay safe 

User
Posted 17 Jun 2022 at 16:23

You can request a copy of your hospital records. It varies exactly how you do this, but often through PALS, or at least they will know.

Your new hospital should have requested them from your previous hospital. It may be that everyone's too busy to read them anyway, particularly given you are stable. Might be different if you weren't.

User
Posted 17 Jun 2022 at 22:54
Well done Tommy, you're an inspiration to us all.👍
User
Posted 18 Jun 2022 at 08:32

Thank you buddy take care 

User
Posted 18 Jun 2022 at 08:34

Thank you  stay safe and take care xx

User
Posted 20 Jun 2022 at 18:52

Stay strong buddy 

 
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