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User
Posted 30 Apr 2022 at 12:37

Hello everyone,

Wishing you all the best whatever your state and the reason you are here.

Having been diagnosed just over 12 months ago I have learned a lot and mainly been following comments by everyone else. I have had a very good year on the treatment prescribed (Prostap+enza). However, my experience appears far removed from most on this site. I was wondering if anyone else has experience or knowledge of starting with a higher PSA than many at diagnosis which has reduced gradually (apart from 1 early increase) and has last week reduced to as low as 43? I know most members relate to PSA's getting down to less than single figures but I have never been in that position (and think it now unlikely) although I appear to have had a better year than many and better than originally expected, for which I am very thankful. Are many members also members of other relevant websites (Macmillans, Cancer UK or whatever) and if so how do you manage cross referencing all the different sources of information/help and member conversations?

Kind regards,

Bernard

Hope for the best but expect the worst.

Edited by member 30 Apr 2022 at 18:48  | Reason: Not specified

Bernard

Hope for the best but expect the worst.

User
Posted 01 May 2022 at 13:04

Hi Bernard,

Can thoroughly recommend the you tube channel recommended by Peter above for a periodic look.

It's a charity so they are only providing good information on latest United States best. practice and not pushing particular treatments.

Regards

Norm

User
Posted 01 May 2022 at 21:35
Awhile back there was a highly regarded American doctor who was well recommended on this forum. He did a series of talks on various aspects of PCa delivered in his easily understood and laid back way. Sadly, he has now passed away but his talks are still worth listening too. There is quite a lot on the net if you google Charles 'Snuffy' Myres.
Barry
User
Posted 18 Aug 2023 at 20:35

Perhaps members would like to know I had a second good year on Xtandi. My PSA increased slightly in June 2023 (see my profile).

Had a very eventful August which you can see in my profile. Despite hoping it was not the case I ended up in A&E and was diagnosed with Metastatic Spinal Cord Compression (MSCC). Was diagnosed, treated with radiotherapy and checked over by physio all in 3 day period. Went in to A&E on Monday and got home, still mobile, on the Saturday evening so very lucky. Excellent treatment from all medics. Will now hopefully have a further good few months.

Edited by member 18 Aug 2023 at 20:39  | Reason: Not specified

Bernard

Hope for the best but expect the worst.

Show Most Thanked Posts
User
Posted 30 Apr 2022 at 16:37

Hello Bernard,

Welcome on your first post after a year of following comments.  I read your profile, it's nicely written describing a difficult path.   I can't comment on your treatment except that Christie's is one of the top cancer hospitals so you must be in good hands.  Also different people react differently to different drugs and there are a number of combinations.

I joined the Macmillan forum but found joining more than one to be more reading than I wanted and if you want to join in even a short reply can take more time than you think.   Macmillan tend to send a lot of emails, very few of them about Prostate Cancer and they often reminded me when I didn't want reminding.  So I decided to focus on this one who very rarely send emails and specialise in Prostate Cancer.   Although I have had a couple of Macmillan nurses who do a great job, so support the charity.

I store interesting points in Microsoft Notes although I find if I want something it's better to search again in case there is new information.

I also watch a YouTube channel called Prostate Cancer Research Institute with a Dr Mark Sholz.  Although YouTube can also nag you with suggested videos so you need to give topics a rest every now and then.

I hope to read more about your progress and wish you all the best.

Peter

User
Posted 30 Apr 2022 at 16:42

Hi Bernard,

Unfortunately, you were not diagnosed with PCa until it had become more advanced so you were beyond the stage where you could have benefitted from Prostatectomy or Radiotherapy, although you might be offered the later to relieve pain in a few hot spots in bones. So the treatment you are having is systemic and I note from your Profile/Bio is gradually reducing your PSA and has helped improve your situation somewhat. It is likely that you will be kept on your present medication for as long as this works and if/when needed other down the line systemic treatment may be given to augment or replace failing medication. Good that you are trying to keep mobile and interested in life. Hopefully, you are being monitored and will inform your GP of further changes. Spinal Cord Compression if this is indicated should be reported immediately.

I would have thought that your GP would be aware of any PCa groups in your locality. A few of our members belong to one of these any some meet in person as well as by Zoom. One of our members is very active in this.

I belong to an American based forum as there is a lot of info about various new treatments and innovations but rarely look in nowadays. My family say I spend too much time on this forum as it is, particularly as I am a full time carer for my wife. I don't get the impression that many of our members are on other forums although I know a few are and/or belong to a local support group. We also have some members who post now and again to let us know how they are doing. Then there are 'silent watchers' who don't post but may do some time if they want to offer/receive some support or have a question. Some of us use Google sites for particular reasons. There are reputable sites such as Cancer Research UK who for example list PCa and other cancer trials. Then there are various NHS sites, leading UK and American hospital sites and some from other countries but avoiding 'snake oil' peddled on the Net.

Edited by member 30 Apr 2022 at 16:46  | Reason: Not specified

Barry
User
Posted 30 Apr 2022 at 17:42
Maybe read my profile ? My psa was 45 at surgery and 1.5 after surgery. Diagnosed T4. I let it rise to above 990 before I acted as had every scan under the sun and showed nothing. Then 2 yrs ago showed spine and lymph mets. Been on HT alone for 15 months and declined Enza re quality of life. Psa has fallen to 1.3 in that time. Stay well and good luck
User
Posted 30 Apr 2022 at 19:13

Thanks Peter,

Your response is very helpful.

Bernard

Bernard

Hope for the best but expect the worst.

User
Posted 30 Apr 2022 at 19:16

Thanks Barry,

Very interesting and helpful. I had not heard of PSA but have learned a lot over the last year.

Bernard

Bernard

Hope for the best but expect the worst.

User
Posted 30 Apr 2022 at 19:19

Thanks Chris,

I have read many of your posts and they are very informative. Take care.

Bernard

Bernard

Hope for the best but expect the worst.

User
Posted 01 May 2022 at 13:04

Hi Bernard,

Can thoroughly recommend the you tube channel recommended by Peter above for a periodic look.

It's a charity so they are only providing good information on latest United States best. practice and not pushing particular treatments.

Regards

Norm

User
Posted 01 May 2022 at 21:35
Awhile back there was a highly regarded American doctor who was well recommended on this forum. He did a series of talks on various aspects of PCa delivered in his easily understood and laid back way. Sadly, he has now passed away but his talks are still worth listening too. There is quite a lot on the net if you google Charles 'Snuffy' Myres.
Barry
User
Posted 18 Aug 2023 at 20:35

Perhaps members would like to know I had a second good year on Xtandi. My PSA increased slightly in June 2023 (see my profile).

Had a very eventful August which you can see in my profile. Despite hoping it was not the case I ended up in A&E and was diagnosed with Metastatic Spinal Cord Compression (MSCC). Was diagnosed, treated with radiotherapy and checked over by physio all in 3 day period. Went in to A&E on Monday and got home, still mobile, on the Saturday evening so very lucky. Excellent treatment from all medics. Will now hopefully have a further good few months.

Edited by member 18 Aug 2023 at 20:39  | Reason: Not specified

Bernard

Hope for the best but expect the worst.

User
Posted 18 Aug 2023 at 21:05

Thanks for the update. I can see you are making the best of your life.

Dave

User
Posted 19 Aug 2023 at 20:58

Thanks for update, Bernard.  I've read your profile.  You come across as a very stoical person, but maybe that's your way of protecting others. 

I wish you all the very best going forward.

JedSee.

User
Posted 19 Aug 2023 at 22:01
Thanks for the update. Awful situation for you but brings hope to us all despite the worst news. You’re super brave and very stoic as others have said. Stay strong 💪
User
Posted 19 Aug 2023 at 23:21

Read your profile Bernard, you and your family have definitely been through it. Sorry you got the MSCC but glad they were able to sort it for you and get you mobile. Wishing you all the very best for the next year ahead and will look forward to a positive update from you 👍

 
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