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Getting my head in the right place

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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 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 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 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 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 30 Mar 2021 at 09:39

Great news. 

Ido4

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 24 Jun 2023 at 17:32
We all worry , naturally , but that’s a gnats f**t tbh. Probably a machine blip or the tester had eaten salt or vinegar crisps. All epic mate and keep up the wine. It’s working for me
User
Posted 24 Jun 2023 at 23:00

Red wine works for us too….. every day is a good one 

Leila 

User
Posted 11 Sep 2023 at 19:25
Hey Airy , I’m now past 8 yrs of a T4 diagnosis after surgery. I picked my own path of treatment. Maybe naively but it has worked so far touch wood. My Onco grits his teeth when he sees me as I turn his advice upside down. I kind of expect to croak it in the next 2 yrs as reaching the 10 yr club is kind of difficult. I’m just 56 yrs old. I too get told each day I look so well and tanned and healthy. I make people happy and smile and laugh but inside I’m crumbling tbh. My saving grace has been learning to fly model planes and go fishing. New hobbies mean the world and stop that horrible nagging noise in my head of doom and gloom. Yes it’s going to happen but I’m too busy to be worrying about it if I’m honest. It’s easy to be lazy and not get moving , but try to find something you like and push yourself ok. You won’t regret it 👍
User
Posted 11 Sep 2023 at 19:36
Great post, Chris.

I love and will steal that line: 'Yes, its going to happen, but I'm too busy to be worrying about it'.

I think I am through the current version of my PCa, but I have just lost my son at the unreasonable age of 38. It's ever so easy to give in, but : Live it or lose it....

User
Posted 12 Sep 2023 at 12:58

Airy Harris,

people are very good at saying how well you look. I had a former nurse tell me I didn’t look like a cancer victim and a month later I had a high grade recurrence going on!

I agree with Chris, find things you enjoy doing and “lose yourself “ in them.

It calms the noise down for a lot of the time.

All the best,

 

Ido4

User
Posted 03 Oct 2023 at 13:56
Here we are again back home from sunny Sunderland weight, BP fine, bloods okay but PSA still going up at present but still nothing to worry about but 0.067 yesterday, (Chris hope that techie finishes his salt and vinegar crisps soon)
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 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 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 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 ?
User
Posted 09 Oct 2021 at 19:37

Great news, always good to see positive posts on here. Sounds like things are going really well and gives us all hope. Enjoy your holidays 😊

User
Posted 09 Oct 2021 at 20:07
Excellent new mate and I am so glad for you. How have you found the hot flushes in Tenerife as I am due to go to St Lucia on business to visit our plantation and then over to Singapore to see my brother and the hot flushes are bad enough in this country so Lordy knows what they are going to be like in a hot country :-)

So pleased for you and may the numbers keep falling in your favour :-)

User
Posted 09 Oct 2021 at 21:34

Great news. 

Ido4

User
Posted 10 Oct 2021 at 18:26

It’s great to hear how enzalutamide is helping control your PCa.

I've been following your post with interest. I too am on enzalutamide albeit with prostap since I was diagnosed with spread to my hip in January 2015. It’s still working for me and I hope you have the same long term success.

User
Posted 10 Feb 2022 at 19:01
Good news I hope airy !! Glad you making the most of it like I am. Not on Enza yet psa 2.2 but still dropping on 3 monthly HT.

Seems people on here using insurewith successfully for advanced PCa for not too much money , yet I called them again today and got a FLAT refusal. Like you I end up sat on the phone all day with gritted teeth trying to understand it all. I’m fit , a good weight , mobile , working , generally very healthy , but Cannot for the life of me even get insurance for a 2 week cruise :-(

User
Posted 14 Feb 2022 at 14:37
Hi all, the highs and lows of prostate cancer came back today. staysure who insured our last trip said no this time whilst all clear who are having a 20% reduction on annual policies said yes to an annual policy!!!! which for a couple of years has not been available through any company.

I give up trying to understand insurance companies at all, but really happy to have a year to enjoy holidays for the next year

Totally confused but very happy and let's get that passport dusted off

User
Posted 14 Feb 2022 at 17:18

That’s great. Enjoy your holidays!

Ido4

User
Posted 14 Feb 2022 at 17:31
👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Mar 2022 at 20:02
Your GP is out of touch - get the 4th injection if offered. Enzalutimide us a form of chemotherapy and reduces your ability to fight off infection.

I think the acid will be a big disappointment to you, no spiders this time 🤣 It is called Zometa or zoledronic acid and helps your bones but one if the potential side effects is necrosis or overgrowth of bones so your teeth need to be in good shape before you start.

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

User
Posted 09 May 2022 at 17:33

Back home from holidays again and on the trip to Sunderland for the Enza clinic, got my January results down 0.2 ish down to 0.106 in March followed by todays result of 0.069, talk about being over the moon, letter being sent to doctors to prescribe zoledronic acid and vitamin D and something else by this time I was on cloud nine and not taking much in

Now a discussion starts about should we reduce the dose down from 4 tablets to 3 or stay as is, I honestly couldn't give an opinion, I'll be guided by people who know better than me so far Doc Pearson has been spot on.

User
Posted 09 May 2022 at 18:55
EPIC news 👍👍
User
Posted 09 May 2022 at 19:04

Excellent news, David starts Apalutamide next week, he is concerned about the side effects, his PSA has already dropped to 0.3 on the prostrap, so he is hopeful of a further drop.
David feels well and he’s very active, and hopes this continues.

Leila  

User
Posted 10 May 2022 at 10:52

Thank you, both medications seem to have a good report. 

User
Posted 11 May 2022 at 17:09

Great news. Very happy for you.

Ido4

User
Posted 07 Jul 2022 at 12:46

That’s great news , and hope the 3 tablets carry on doing the job . 
Phil

User
Posted 07 Jul 2022 at 12:55

Great news hopefully it will help with the tiredness 👍

User
Posted 07 Jul 2022 at 14:04
Great news 👍👌💪
User
Posted 07 Jul 2022 at 15:00

Great news 👍

User
Posted 08 Jul 2022 at 19:19

That’s fantastic news. Thanks for update.

Ido4

User
Posted 09 Jul 2022 at 02:11
🎉🎉🎉
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jul 2022 at 18:48
Doesn’t bode well for me in the future sadly. I love a drink or three of wine and once that’s taken away as well 🥲

Keep well and strong 💪

User
Posted 18 Jul 2022 at 14:45
Hi Chris just to put your mind at rest i would have been bad even without PC the glasses seemed to get smaller and smaller as the time went by, must admit to having a wobble walking home.

Cheers

User
Posted 28 Jul 2022 at 21:39

Hi airyarris

Read your profile it fills me with joy for you and hope for me that your doing so  well I have recently started my journey and my condition is similar to yours and reading your story has given me hope.

Thankyou 

User
Posted 29 Jul 2022 at 19:23

Hi Chris

Also read your story..wow and what a story it is,you've had a roller coaster of a ride 👏 bravo and keep the faith and I'll join you with a glass of vino this evening.

 

User
Posted 29 Jul 2022 at 19:48
Lets all have a drink to each other tonight just 'cause we deserve one, whether its a cup of tea, beer, wine or even water.

Cheers to all and our suffering partners

User
Posted 22 Aug 2022 at 21:15

Great news on PSA. Hope bone scan provides reassurance alongside low PSA.

Ido4

User
Posted 28 Aug 2022 at 09:11
Hi SCM, Elaine has summed it up very very well.. Gently suggest you start your own thread and give some details of your diagnosis etc.. Tx number, PSA etc etc
User
Posted 28 Aug 2022 at 14:13
Thanks mate; I read your message but cannot work out how to reply.

You are very kind and understanding.

I am just so utterly depressed and terrified of the future.

User
Posted 29 Aug 2022 at 09:03

Hi SCM

I am 53 diagnosed with advanced prostate cancer with a PSA of over 2000!and kidney failure at 19%.

I was exactly the same as you my world had fallen apart and I thought I wouldn't be around in a year or so.

6 months on I am responding well to treatment PSA 1.9 and kidneys back to 70%,feeling better about life and feeling more positive,there is hope 🙏 be strong 

All the best phil

 

User
Posted 09 Nov 2022 at 15:59
Get well soon Airy
User
Posted 09 Nov 2022 at 18:38

Great news Phil and airy news like this lifts everyone 👍

User
Posted 28 Feb 2023 at 13:17
Just had a phone call from urology my Feb PSA result is no change really 0.044 so I'm a happy chappie still, that cough is still being an irritation two more lots of penicillin booked in for an X ray at weekend, hopefully getting to the bottom of the problem
User
Posted 01 Mar 2023 at 15:48

Great PSA result, hope you get the cough resolved soon.

Ido4

User
Posted 01 Mar 2023 at 16:09

Great news 👍 but hope they can get your cough sorted out x

User
Posted 01 Mar 2023 at 16:44

Great result, keep it up 👍

Phil

User
Posted 24 Jun 2023 at 17:11
This week has been a week in two halves Monday bloods etc at Sunderland last appointment two months ago, PSA result was 0.032 the lowest ever for me, over the moon, Friday 24 week Decapeptyl injection and PSA results from last Mondays blood test 0.052, that came as a shock! Okay my glass is still half full it’s still low and it cannot keep going down, also it was the last 1/3 of the 24 week Decapeptyl injection cycle so some tail could be the cause, but the main bit I’m still feeling well able to go for a red wine or two etc, so forget about PSA till next appointment. Honest
User
Posted 24 Jun 2023 at 17:39
Thanks Chris for the humour the thought ot lab techies eating salt and vinegar crisps has tickled me
User
Posted 13 Jan 2024 at 17:13
Another rise in PSA now up to 0.084 so still nothing to worry about the worst news was still to come, my Kidney function had dropped due to a new prescription of blood pressure tablets which had to be stopped right away, and get another kidney function test before I restart my meds again anyway result was back to normal so our break in the sun was back on, Thanks to the Enza clinic at Sunderland
User
Posted 13 Jan 2024 at 23:43
Great news Airy - have a great holiday!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Feb 2024 at 17:46

PSA still rising very slowly now 0.108 apparently whilst it’s moving slowly it doesn’t give ‘cause for worry

Fingers crossed for you it’s stays like it has and you’ll have loads of years before there’s any concern. Keep it up buddy 👍

Phil

 

User
Posted 21 May 2024 at 13:06
It’s been a while since I came on the page so a couple of results, even though the PSA is still rising slowly, apparently still no need to be concerned it has risen to 0.16 in May and 0.185 yesterday, also had a bone scan which confirmed the cancer is behaving itself, Just showed arthritis and old age so relax again and enjoy life Red wine plus water must be good for me?
User
Posted 21 May 2024 at 14:33
Well done Airy keep it up!
User
Posted 12 Sep 2024 at 20:16

Hi Dave, thanks for your update. I hadn't heard of adding a steroid alongside enza like I had with abiraterone. It's good that there's that option for you to think about. 

Best of wishes

Loz

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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 ?
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 ?
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

User
Posted 09 Oct 2021 at 14:23
Good news from the oncology whilst we were on holiday we had a telephone meeting, (good job it was a telephone call as we were in Tenerife), my PSA had dropped to 0.6 and my bloods are all stable in the correct ranges whilst on Enzalutamide, so I've now been referred back to urology again and hopes it will be at least 2 years before we talk again. It’s surprising how a few words can give you a massive lift, given that 2 years ago we heard I had a 40% chance of surviving 4 years.

Also our day 2 Randox came back negative today so we’re happy bunnies again

This illness is certainly a rollercoaster, now to look for a new insurance company before next holiday as this holiday used my Boots one, thanks again to the people giving me alternative names to try

User
Posted 09 Oct 2021 at 19:37

Great news, always good to see positive posts on here. Sounds like things are going really well and gives us all hope. Enjoy your holidays 😊

User
Posted 09 Oct 2021 at 20:07
Excellent new mate and I am so glad for you. How have you found the hot flushes in Tenerife as I am due to go to St Lucia on business to visit our plantation and then over to Singapore to see my brother and the hot flushes are bad enough in this country so Lordy knows what they are going to be like in a hot country :-)

So pleased for you and may the numbers keep falling in your favour :-)

User
Posted 09 Oct 2021 at 21:34

Great news. 

Ido4

User
Posted 10 Oct 2021 at 18:26

It’s great to hear how enzalutamide is helping control your PCa.

I've been following your post with interest. I too am on enzalutamide albeit with prostap since I was diagnosed with spread to my hip in January 2015. It’s still working for me and I hope you have the same long term success.

User
Posted 11 Oct 2021 at 16:35
Cheers that's smashing to hear Enzalutamide has long term results, that's cheered me up even further Thank you again, long may it last
User
Posted 10 Feb 2022 at 18:49
Well corvid rules are being eased, and we have just had our holiday booked before corvid kicked in properly, we honestly felt safer in Tenerife, masks worn in crowed streets, restaurants tables set out 2 metres apart, stand up mask on sit down and chill without a mask

Oncology consultant said make memories so we are back out again soon, subject to insurance hoping to find one cheaper than Staysure £900 for our last holiday, starting with staysure to give a benchmark price. search for over till I loose my mind answering the same questions over and over again, collected a long list from living with Cancer posts

Enzalutamide is still working well PSA down to 0.208 in December still no pain killers so we are going for it whilst we can, hope every

one keeps safe whilst getting out and about.

User
Posted 10 Feb 2022 at 19:01
Good news I hope airy !! Glad you making the most of it like I am. Not on Enza yet psa 2.2 but still dropping on 3 monthly HT.

Seems people on here using insurewith successfully for advanced PCa for not too much money , yet I called them again today and got a FLAT refusal. Like you I end up sat on the phone all day with gritted teeth trying to understand it all. I’m fit , a good weight , mobile , working , generally very healthy , but Cannot for the life of me even get insurance for a 2 week cruise :-(

User
Posted 14 Feb 2022 at 14:37
Hi all, the highs and lows of prostate cancer came back today. staysure who insured our last trip said no this time whilst all clear who are having a 20% reduction on annual policies said yes to an annual policy!!!! which for a couple of years has not been available through any company.

I give up trying to understand insurance companies at all, but really happy to have a year to enjoy holidays for the next year

Totally confused but very happy and let's get that passport dusted off

User
Posted 14 Feb 2022 at 17:18

That’s great. Enjoy your holidays!

Ido4

User
Posted 14 Feb 2022 at 17:31
👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Mar 2022 at 18:33
Good news after nearly a year on Enzalutimade I've been downgraded to the outpatient clinic really good to talk in the waiting room to other lads on the same journey starting to understand being tired and learning to rest the day before and after, so even though I was weary about moving to an out patient clinic I sure now its going to be good. This time I was asked to get my teeth sorted so I could go on tt something acid to protect my bones (last time on acid plus far to much alcohol was in the 60's and I was over run with Spiders) so never touched acid again.

Pca is bouncing around 0.2 and taken another holiday at the end of the month, also the local travel agent will let me know of any bargains to anywhere warm in the next few month's to use the+ 12 month policy to the most

One other thing was an invitation from Kings college and Nori to do a PCR test to check corvid and flu in the background, enza clinic said yes do it but also take up the fourth jab,

Asked our GP who said no you don't need as your chemo was before you first injection but the Enza clinic said get the extra jab so at present I am in limbo trying to sort it out.

Thanks for listening

User
Posted 15 Mar 2022 at 20:02
Your GP is out of touch - get the 4th injection if offered. Enzalutimide us a form of chemotherapy and reduces your ability to fight off infection.

I think the acid will be a big disappointment to you, no spiders this time 🤣 It is called Zometa or zoledronic acid and helps your bones but one if the potential side effects is necrosis or overgrowth of bones so your teeth need to be in good shape before you start.

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

User
Posted 16 Mar 2022 at 09:54

Thanks LynEyre, That answer has given me the confidence to go back to the Doctors and stand my ground with the correct info, if no luck then I'll ask Enza team for a letter to get 4th Jab from a walk in centre
Thanks again. PS I never touched acid or any drugs after that episode, it honestly scared me,

Edited by member 16 Mar 2022 at 09:56  | Reason: Not specified

 
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