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Getting my head in the right place

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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 Ā£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. Iā€™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
šŸ‘
"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 šŸ¤£ 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

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 šŸ‘šŸ‘
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 10:32

Hi Liela, Best of Luck with Apalutamide hope David gets on with it, with my change onto Enza it took a couple of months to settle with the side side effects, but feeling a more comfortable now

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 12:09

Well just back from the July Enza clinic, my PSA has dropped again down to 0.051 so I'm a happy chappie, also I've been asked to drop down to 3 tablets a day instead of the current 4 (but if anything changes I can go back to four) and it should help with the tiredness a little, hopefully it stays stable for a while!

Edited by member 07 Jul 2022 at 14:12  | Reason: wrong month

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 šŸ‘

User
Posted 07 Jul 2022 at 14:04
Great news šŸ‘šŸ‘ŒšŸ’Ŗ
 
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