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Getting my head in the right place

User
Posted 01 Oct 2019 at 11:41

Hi all. Just been diagnosed with advanced prostate cancer mid August, now I've had a biopsy, bone scan, ct scan etc. started on hormone pills and injection, and life is reverting to normal in how I feel, just waiting now for a meeting when all the tests come together and my condition and further treatment will be explained hopefully.

It's taken a few of weeks to post here as my head has been away on a roundabout with no off switch, wife, doctors and hospital staff have carried me through the last few weeks 

User
Posted 22 Oct 2019 at 08:55

Hi, 

Wishing you well for your appointment today. I know how you feel (albeit from a wive's point of view).

My husband was diagnosed with advanced PCa in July, we had the Oncology appointment for the biopsy/bone scan results mid August and he started chemo less than a week later. It has been a roller coaster and we are just coming out of shock phase.  He is also Gleason 8 and having his fourth chemo session today.

Will check in later to see how your appointment went.

Mrs MAS

Edited by member 22 Oct 2019 at 08:56  | Reason: Not specified

Mrs MAS

User
Posted 14 Feb 2021 at 11:22
Seeing our daughter didn't happen as we would have liked but the portal worked well allowing us to watch the grandson open his presents, not the same, but better than nothing. I've Just had my 24 week Hormone injection and the PSA test few days before, came back at 3.19 third rise in a row, oncology phoned to say they would put me on Enzalutimide also as bone scan also showed changes, appointment made for early March to start the treatment, hopefully my body will tolerate tabs better than the 4 minutes on Chemo. I'm beginning to find out there are a lot of treatments for us, thanks NHS

User
Posted 15 Feb 2021 at 16:31
Sorry the HT has failed but most people seem to tolerate the enzalutimide well so fingers crossed for you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 May 2021 at 12:12

Chris, have you tried Virgin travel insurance? I got a years for 2 of us just before we went to Jersey last week. We got a years as we are back out in jersey in August , plus hopefully somewhere else later on 🤷🏼‍♂️.

They added on about £60 when I put in the cancer, plus I think it’s gone up because of us leaving the EU.

Phil

User
Posted 22 May 2021 at 20:49
Hi Chris. Couple of years ago OH’s oncologist told us to get a holiday. I laughed and said no way can we get insurance. She advised us to try World First. They were brilliant and we got a holiday. Don’t know how much things have changed since Covid but it’s worth a try. All the best to you, Kate
User
Posted 01 Oct 2019 at 20:13

I am on the same train. One week of four on bicalutamide. Implant next Tuesday. I have locally advanced so no prostrate removal.  Start radiotherapy in approximately two months and additional treatment for the next two years. A long haul with many hurdles to jump. Keep your family and friends involved as they lift you up on the bad days. Keep positive and join a gym if not already. Seems exercise can help with many side effects . Good luck and keep updating as you go.  🤞👍

User
Posted 22 Oct 2019 at 08:40
Well today has arrived my visit to the oncology team is later this morning, I've been waiting for this and I'm apprehensive about the meeting, feeling teary again that side effect of hormone treatment is still in control at times, another 60 mile round trip to the hospital at Sunderland the joys of living in the sticks, I'll update later with the results from today
User
Posted 23 Oct 2019 at 09:50
The appointment went well especially when Nikola the specialist nurse also joined us, seeing a friendly face helped with the talk, basically the cancer has spread to my pelvis, ribs and shoulders and a couple of indeterminate marks to be watched during treatment, I thought it would be every week but treatment will be once every three weeks so travelling thro’ winter shouldn’t be too bad might miss the ice and snowfalls.

Came away with steroids for later and feeling a lot happier as we are going forward with a positive view on life, I thought chemo was a bad option but it was explained that they believe I’m fit enough to cope with the treatment so I’ve got to prove them correct when chemo starts in a few weeks.

User
Posted 23 Oct 2019 at 13:37

It sounds like you feel better after the appointment. Did you get a Gleason score? 

Mrs MAS

User
Posted 23 Oct 2019 at 19:16
Most men seem to cope with chemo pretty well. The chemo used for PCa has far less severe side-effects than that used for some other types of cancer.

Very best of luck for your treatment,

Chris

User
Posted 05 Nov 2019 at 15:23
Just got the call to start my chemo Thursday morning, now is the time for me fight back against this cancer knocking it back a bit aswell as removing tostesterone, hoping I can cope with whatever Chemo throws at me.
User
Posted 06 Nov 2019 at 09:59

I finished my 6 x cycles of chemo just over 3 weeks ago. Nothing to worry about, I used to go on my own because most couples there run out of things to talk about and it gets to awkward small talk. I felt fine all the way through and drove myself back and forth however I do understand everyone is different. Go in positive with a fully charged phone to scroll the internet because it is soooo boring. Good luck tomorrow 😂 

 

User
Posted 05 Dec 2019 at 21:34

After my body rejecting chemo we had a meeting with the oncology consultant to say I was to a high a risk to try any other Chemo

Just been sent an appointment from the oncology (radiothraphy team) for New Years Eve,(Rum an Ginger for afters although no late nite boozing for me} we did talk about bone pain just in passing relative with the oncology consultant, if the area was localised radio theraphy might help, anyone with experience of this procedure, what questions to ask, what are posible side effects, etc

Edited by member 05 Dec 2019 at 21:38  | Reason: missed a few words

User
Posted 26 Jan 2020 at 13:48
Well this will be my last post for awhile; my head has come to terms with my condition, the appointment with the radiotherapy team should have been cancelled when the Chemo failed, being emotional and hot flushes are now just a part of me.

Now Christmas with its chasing is over life is returning to a nice steady tempo, only check up appointments with Urology and repeating 24 week hormone injection. Time to plan a holiday somewhere warm, as Boots will insure me at a reasonable price.

See you for now

User
Posted 26 Jan 2020 at 23:25

Good luck, mate. We might all get this illness wrong wrong from time to time, but your attitude seems to be spot on.

User
Posted 28 Aug 2020 at 12:34
Possibly - a 6 month cycle is a long time. Did they measure your testosterone at the same time? If not, perhaps ask whether you can have a T test now to check the Deca is working?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Feb 2021 at 13:07
Thank you for your post and the timeline updates have helped me. Keep us posted and I will post something today about my own journey....
User
Posted 30 Mar 2021 at 09:39

Great news. 

Ido4

User
Posted 31 Mar 2021 at 11:42

Good news on the PSA results and good to read you are still keeping positive.

I have been bald for a while - Dad was and so was Grandad so I stood no chance - but even I had to dig out the fly-mo and give the head as hoover 😊

 

User
Posted 27 Apr 2021 at 10:14

That’s really good on the pain front. I understand your wobble about the blue badge/attendance allowance side but they must be necessary. Take care.

Ido4

User
Posted 30 Apr 2021 at 18:17

AIRYARRIS - Good news on the PSA and I am sure you'll cope with the hot flushes :-). No aches and no pain so that is great and focus on that.  so you have a blue badge and attendance.... yes it is a reality check but focus on the positive :-)

Be strong and chin up.....

Have you had that hair cut yet ? 

 

Edited by member 16 May 2021 at 06:42  | Reason: Not specified

User
Posted 04 Jun 2021 at 15:58
Thank you Kate. All booked up for a staycation cruise with my boy late August thanks to World First insurance. I’ve always used Boots but they sacked me off this time for some reason ?

If life gives you lemons , then make lemonade

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User
Posted 01 Oct 2019 at 20:13

I am on the same train. One week of four on bicalutamide. Implant next Tuesday. I have locally advanced so no prostrate removal.  Start radiotherapy in approximately two months and additional treatment for the next two years. A long haul with many hurdles to jump. Keep your family and friends involved as they lift you up on the bad days. Keep positive and join a gym if not already. Seems exercise can help with many side effects . Good luck and keep updating as you go.  🤞👍

User
Posted 02 Oct 2019 at 11:48
Thanks Pete, yes I will keep updating, and as for exercise we have a seven year old samoyed to keep exercised also
User
Posted 22 Oct 2019 at 08:40
Well today has arrived my visit to the oncology team is later this morning, I've been waiting for this and I'm apprehensive about the meeting, feeling teary again that side effect of hormone treatment is still in control at times, another 60 mile round trip to the hospital at Sunderland the joys of living in the sticks, I'll update later with the results from today
User
Posted 22 Oct 2019 at 08:55

Hi, 

Wishing you well for your appointment today. I know how you feel (albeit from a wive's point of view).

My husband was diagnosed with advanced PCa in July, we had the Oncology appointment for the biopsy/bone scan results mid August and he started chemo less than a week later. It has been a roller coaster and we are just coming out of shock phase.  He is also Gleason 8 and having his fourth chemo session today.

Will check in later to see how your appointment went.

Mrs MAS

Edited by member 22 Oct 2019 at 08:56  | Reason: Not specified

Mrs MAS

User
Posted 23 Oct 2019 at 09:50
The appointment went well especially when Nikola the specialist nurse also joined us, seeing a friendly face helped with the talk, basically the cancer has spread to my pelvis, ribs and shoulders and a couple of indeterminate marks to be watched during treatment, I thought it would be every week but treatment will be once every three weeks so travelling thro’ winter shouldn’t be too bad might miss the ice and snowfalls.

Came away with steroids for later and feeling a lot happier as we are going forward with a positive view on life, I thought chemo was a bad option but it was explained that they believe I’m fit enough to cope with the treatment so I’ve got to prove them correct when chemo starts in a few weeks.

User
Posted 23 Oct 2019 at 13:37

It sounds like you feel better after the appointment. Did you get a Gleason score? 

Mrs MAS

User
Posted 23 Oct 2019 at 19:16
Most men seem to cope with chemo pretty well. The chemo used for PCa has far less severe side-effects than that used for some other types of cancer.

Very best of luck for your treatment,

Chris

User
Posted 23 Oct 2019 at 19:23

I got a gleason score of 8 in early October,  which was given again in the meeting yesterday but going thro’ all the results all at once did help.

User
Posted 05 Nov 2019 at 15:23
Just got the call to start my chemo Thursday morning, now is the time for me fight back against this cancer knocking it back a bit aswell as removing tostesterone, hoping I can cope with whatever Chemo throws at me.
User
Posted 06 Nov 2019 at 09:59

I finished my 6 x cycles of chemo just over 3 weeks ago. Nothing to worry about, I used to go on my own because most couples there run out of things to talk about and it gets to awkward small talk. I felt fine all the way through and drove myself back and forth however I do understand everyone is different. Go in positive with a fully charged phone to scroll the internet because it is soooo boring. Good luck tomorrow 😂 

 

User
Posted 14 Nov 2019 at 12:21

We had the prelim talk etc then started with the saline drip then the chemo, about 3 minutes later Itchy hands and a hot flush from Hell, anti histamine and petherdrine I think, back on the Saline, tried chemo feed at half speed, about an hour an half later again itchy and stained hands very quickly, no chemo for me, now waiting to see if any other treatment will be offerered or just left on hormone treatment which I believe will happen cause the chemo was only offered as an extra as I was so called fit enough.

Edited by member 14 Nov 2019 at 20:29  | Reason: missed a few words

User
Posted 05 Dec 2019 at 21:34

After my body rejecting chemo we had a meeting with the oncology consultant to say I was to a high a risk to try any other Chemo

Just been sent an appointment from the oncology (radiothraphy team) for New Years Eve,(Rum an Ginger for afters although no late nite boozing for me} we did talk about bone pain just in passing relative with the oncology consultant, if the area was localised radio theraphy might help, anyone with experience of this procedure, what questions to ask, what are posible side effects, etc

Edited by member 05 Dec 2019 at 21:38  | Reason: missed a few words

User
Posted 26 Jan 2020 at 13:48
Well this will be my last post for awhile; my head has come to terms with my condition, the appointment with the radiotherapy team should have been cancelled when the Chemo failed, being emotional and hot flushes are now just a part of me.

Now Christmas with its chasing is over life is returning to a nice steady tempo, only check up appointments with Urology and repeating 24 week hormone injection. Time to plan a holiday somewhere warm, as Boots will insure me at a reasonable price.

See you for now

User
Posted 26 Jan 2020 at 23:25

Good luck, mate. We might all get this illness wrong wrong from time to time, but your attitude seems to be spot on.

User
Posted 28 Aug 2020 at 12:02

Well Lock down over with now getting out and about more even got a haircut, hormone injection due beginning of September so had PSA checked a couple of days ago came back as 1.15 compared to 0.5 last time. My feelings are mixed up as this is first time it has risen since my diagnosis a year ago, waiting for a call back from urology, my own thoughts are that because I'm at the end of the hormone injection cycle it will rise before the next injection?

Has this happened to anyone else? or is my logic slightly biased.

User
Posted 28 Aug 2020 at 12:34
Possibly - a 6 month cycle is a long time. Did they measure your testosterone at the same time? If not, perhaps ask whether you can have a T test now to check the Deca is working?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Aug 2020 at 16:24
Thanks LynErye, my bloods were done at the urology dept so I'll ask for the testosterone results, one day I might learn to ask the right question, again thanks DaveH
User
Posted 16 Dec 2020 at 11:58
Just had my telephone appointment with the Urology team, my PSA has risen again this time to 2.1, testosterone not checked again but not to worry my PSA is within normal limits, but I will be fitted in for a bone scan to see if anything is moving. So do as I'm told enjoy Christmas and see our daughter if we are allowed (hope) This tier 3 lockdown is getting to be a pain now

DaveH

User
Posted 14 Feb 2021 at 11:22
Seeing our daughter didn't happen as we would have liked but the portal worked well allowing us to watch the grandson open his presents, not the same, but better than nothing. I've Just had my 24 week Hormone injection and the PSA test few days before, came back at 3.19 third rise in a row, oncology phoned to say they would put me on Enzalutimide also as bone scan also showed changes, appointment made for early March to start the treatment, hopefully my body will tolerate tabs better than the 4 minutes on Chemo. I'm beginning to find out there are a lot of treatments for us, thanks NHS

User
Posted 15 Feb 2021 at 13:07
Thank you for your post and the timeline updates have helped me. Keep us posted and I will post something today about my own journey....
User
Posted 15 Feb 2021 at 16:31
Sorry the HT has failed but most people seem to tolerate the enzalutimide well so fingers crossed for you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Mar 2021 at 20:35
Well since the last post in February, and 30 days of Bicalutamide tablets, and a month on Enzalutamide without any side effects to speak of. best bit now PSA down to 2.41 and not taking any pain killers. So I'm a happy Airyarris all I need now is a barber open because my hair is meeting up with my mask.

Not Airyarris for username for nothing

Stay safe

User
Posted 29 Mar 2021 at 20:37
Great news, Hairy
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Mar 2021 at 09:39

Great news. 

Ido4

User
Posted 31 Mar 2021 at 11:42

Good news on the PSA results and good to read you are still keeping positive.

I have been bald for a while - Dad was and so was Grandad so I stood no chance - but even I had to dig out the fly-mo and give the head as hoover 😊

 

User
Posted 26 Apr 2021 at 16:18
After 28 days of Bicalutamide I think? and eight weeks on Enzalutamide without any real side effects to worry about yes a few more hot flushes, although it’s hard to say for definite, one thing for certain I’m drinking an extra litre a day, which can’t be bad anyway, the good news is my PSA has dropped back down to 1.48. Now I am ache and pain free also. Coming out of lockdown life just gets better. I only had one stumble the Macmillan team had me apply for a blue card and attendance both of which we now have, which left me both happy and depressed for a couple days as I am beginning to realised the cancer had progressed a little.
User
Posted 27 Apr 2021 at 10:14

That’s really good on the pain front. I understand your wobble about the blue badge/attendance allowance side but they must be necessary. Take care.

Ido4

User
Posted 30 Apr 2021 at 18:17

AIRYARRIS - Good news on the PSA and I am sure you'll cope with the hot flushes :-). No aches and no pain so that is great and focus on that.  so you have a blue badge and attendance.... yes it is a reality check but focus on the positive :-)

Be strong and chin up.....

Have you had that hair cut yet ? 

 

Edited by member 16 May 2021 at 06:42  | Reason: Not specified

User
Posted 16 May 2021 at 22:16

Hi NobbyB haircut sorted can see my ears now. Whilst we were in lockdown travel agent came up with an offer we couldn’t refuse a month from mid September in Tenerife from a lot less than our previous holiday in February 2019, so that’s now booked giving us something to look forward to, and hopefully Corvid allowing, 28 days in the sun, to upset the hot flushes and also to top up my Vit D, the oncology team can fit meds and appointments around the holiday, they have always said they could so now’s the time to find out. We all need something to focus on, How are you going on hope you're leading with your chin?

Edited by member 16 May 2021 at 22:17  | Reason: Not specified

User
Posted 16 May 2021 at 22:28
I’m glad to hear you have holidays booked and so do I , but only in the UK ! I simply CANNOT find anyone who will insure me , even for a staycation cruise from Southampton ( where I live ) , to Cornwall and back. I’ve tried them all , phoned NcMillan , Boots , Insurewith , Saga. No-one will touch me with a barge pole and I’m 53. Any ideas please ?

If life gives you lemons , then make lemonade

User
Posted 17 May 2021 at 12:12

Chris, have you tried Virgin travel insurance? I got a years for 2 of us just before we went to Jersey last week. We got a years as we are back out in jersey in August , plus hopefully somewhere else later on 🤷🏼‍♂️.

They added on about £60 when I put in the cancer, plus I think it’s gone up because of us leaving the EU.

Phil

User
Posted 22 May 2021 at 20:49
Hi Chris. Couple of years ago OH’s oncologist told us to get a holiday. I laughed and said no way can we get insurance. She advised us to try World First. They were brilliant and we got a holiday. Don’t know how much things have changed since Covid but it’s worth a try. All the best to you, Kate
User
Posted 04 Jun 2021 at 14:50
When we booked the holiday our Idea was let the booking ride until we had to pay for the holiday, then make the decision on cancelling or not subject to corvid, or finding insurance so far Boots have been fine with me, but these alternatives are great to have in the back pocket Just in case, so Thanks for the advice
User
Posted 04 Jun 2021 at 15:58
Thank you Kate. All booked up for a staycation cruise with my boy late August thanks to World First insurance. I’ve always used Boots but they sacked me off this time for some reason ?

If life gives you lemons , then make lemonade

User
Posted 09 Jul 2021 at 12:14

My PSA is bobbling about 1.5 to 2 and the Docs seem happy with that.
I don't know if it is coming out of lockdown and/or just becoming more active or settling in with Enzalutamide, but the past few days I've been waking up with a clearer head than for a while, okay, takes time to remember odd words I want to say, but there again English has never been a strong point for me, hot flushes are just there. Also starting to get my confidence to drive more, on our local country roads, I haven't had the courage to try the drive into Sunderland for my meds yet, since last time I went for a scan when I started Enzalutamide forgot to pay the parking fee and had a stressful journey home getting in the wrong lane a few times luckily we where still in lockdown so traffic was a lot lighter than now

Edited by member 09 Jul 2021 at 13:03  | Reason: wrong words

 
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