Hope this helps some people.
Bit of history.
Diagnosed 2012 Gleason 9 Extensive mets throughout the skeleton PSA 3.6
9 cycles Docataxel, Abiraterone, Zoladex, Denosumab, Cabazitaxel re try Abiraterone, Hormone resistant PSA rising
I did not want to do Chemo again and neither 20 cycles of RT to the prostate (Jamie did his best to sell me this one)
So last night i had 400mg injection in the bottom of testosterone this will be repeated every 28 days, as all testosterone carries i warning not to give to patients with PC it made things a bit difficult, the injection i had to pay for this was £82.25
So as things progress i will keep this updated, my start point was PSA 5 and i was at castrate level
The link below is a PDF about the thinking behind it
http://www.pccncalgary.org/n_bipolar.pdf
Don't deny the diagnosis; try to defy the verdict |
User
Hope this helps some people.
Bit of history.
Diagnosed 2012 Gleason 9 Extensive mets throughout the skeleton PSA 3.6
9 cycles Docataxel, Abiraterone, Zoladex, Denosumab, Cabazitaxel re try Abiraterone, Hormone resistant PSA rising
I did not want to do Chemo again and neither 20 cycles of RT to the prostate (Jamie did his best to sell me this one)
So last night i had 400mg injection in the bottom of testosterone this will be repeated every 28 days, as all testosterone carries i warning not to give to patients with PC it made things a bit difficult, the injection i had to pay for this was £82.25
So as things progress i will keep this updated, my start point was PSA 5 and i was at castrate level
The link below is a PDF about the thinking behind it
http://www.pccncalgary.org/n_bipolar.pdf
Don't deny the diagnosis; try to defy the verdict |
User
Such a loss, Ness is a real star, looking after and comforting their lovely twin girls during this long period (not just the last three weeks) of illness. Si battled his own way and beat the odds for years, no wonder he won the title Si Si superman from many here. Ness and I have been in touch during our journeys, mine is nearly over so I can say with truth I know something of what’s she’s going through. Sending love to Ness and the girls during this sad time.
RIP Si.
love Allison and John xxx
User
So here are the figures for my first month on BAT therapy
DAY 1 PSA 5 testosterone castrate level
DAY 5 PSA 9.9 Testosterone 38.9
DAY 13 PSA 19.9 Testosterone 11.8, interestingly ALP dropped to 56
DAY 22 PSA 19.7 Testosterone 5.4
I should have been castrate by now but at least PSA has started to drop, my PSA at diagnosis was 3.6 and the highest it has been prior to starting BAT was 7.2
So on Thursday i am meant to be getting my second testosterone injection, need to have a good think about this
SI xx
Don't deny the diagnosis; try to defy the verdict |
User
Sorry to hear that Si.
Ian
|
User
Thank you for documenting. Much appreciated and sorry it dodn’t Getvto play out in full.
User
Thank you all so much for your comments on my other thread really does mean a lot, i will now post on here now.
So i am having testosterone and PSA done on Monday to see how high it has gone, my main reason for doing this is there really was nothing nice left and i want a great spring and summer with my girls.
One things i forgot to mention is you MUST be pain free this will make pain a lot worse.
I am awaiting a call back from prostate cancer UK what i find really annoying is once you get in my position you have had some pretty sh*t treatments and probably crap side effects, America is now recruiting for phase 3 the actual injection costs £10 the other costs i paid was admin etc due to having to get it privately.
Why is there no trials starting here, yes its a bit Russian roulette but when you get hormone resistant it really is a pretty nice treatment i really fill good
So do we only run trials for drugs that cost thousands, i have already been asked for details of how others can do this.
Rant over i am off to wrestle a bear
Don't deny the diagnosis; try to defy the verdict |
User
I have read a lot about this recently and some very exciting outcomes ( although for other types of cancer so far)
Have you seen anything Chris about prostate cancer outcomes. I do think this may be the way to go in the future especially if tailored to the individual.
Good luck Si with your BAT. I feel so humbled by your bravery. What a star you are.
Regards
Ann
User
Hi Si
Pleased you and Jamie are on the same page and I hope you get a positive outcome. I wil be following your journey with interest as I feel I may be looking to persuade my Onco to think outside the box next week ( chemo sucks doesn't it). Enjoy the boost mate.
All the best
Roy
User
So quick update
Started on the 15th March PSA 5 testosterone castrate level
19th March PSA 9.9 Testosterone 38.9
Today PSA 19.9 Testosterone 11.8, interestingly ALP dropped to 56
Just need to get to castrate pretty soon next testosterone injection due on 12th April
Si
Don't deny the diagnosis; try to defy the verdict |
User
Hi AC
Yes the ALP is right at the bottom of the range, i think i was expecting a big rise.
Here is a nice video i found that really explains the use of Testosterone really well compassionateoncology.org/v...
I think my biggest problem at the moment is when i had problems on any other treatment either my nurses or someone on here would have the answer, as things are now no one has the answer.
I did get in contact with a guy in the U.S doing BAT but he wanted to skype me so that we could pray together https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif so i will just continue to be in the dark
Hope all is going well for you, i am trying to get Jamie to join me at the meet up at the Mill to do a talk if he is up for it i will contact Prostate cancer UK to see if they want him to come
All the best mate
Si
Don't deny the diagnosis; try to defy the verdict |
User
Sure you guys and gals have seen this site https://healthunlocked.com/advanced-prostate-cancer/posts/135715505/high-dose-testosterone
It's a bit technical for me to folliwing but I post it anyway as it may help if you haven't seen it.
Good luck with your cutting edge therapy...
User
User
Hi Lyn
Ness is behind me 100%, once the HT stops working treatment options become quite limiting, and anything that can keep me away from Chemo and thats all that is really left is worth a shot.
I am lucky to have an Onco that lets me have such an input into my treatment, even tho we have many heated arguments he still sticks with me and i am sure over these last 5 years he has learnt a lot.
Ian
A typical month is first week lots of muscle ache, reduced urine flow and thats about it, the next two weeks or so everything is back to normal and then the last week as i head back to castrate level my love of handbags and makeup returns https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif
I have put on about 10lb in weight in the last 7 weeks but perhaps thats just fattening me up ready for Chemo.
Si
Don't deny the diagnosis; try to defy the verdict |
User
So just had for me the most important PSA test since diagnosis.
Jamie wanted to stop the BAT therapy after my last PSA increase but has agreed if my PSA drops with today's blood test then i can continue.
As he is on Holiday next week he has left a script with the Chemo nurses to administer it next Thursday on me producing the PSA results.
I am convinced it will work and just need one more injection https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif for two weeks each month i feel just like i did before i was diagnosed and the option of Chemo again for the third time is not appealing and i will be declining it.
So watch this space, due to the bank holiday i will not get the result till Tuesday but i know it will be a big drop https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif hopefully
Hope everyone has a great Bank Holiday and enjoy the lovely weather the twins are away camping with scouts so its just me and Ness and a few nice pubs
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Enjoy your weekend Si. Hope the result on Tuesday allows you to continue on BAT.
Ian
|
User
Si, fingers and everything else crossed for you on Tuesday. My own experience is no correlation between how well I feel and that damned PSA reading. My PCa treatment is now parked until we know what is going on in my liver, following my biopsy, supposedly urgent, on 15th. If you meet with success, I may well follow your lead, so for both our sakes I hope all goes well!
AC
User
All my digits are crossed for you as well!
Have a good weekend.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Good luck for Tuesday. I totally understand the reluctance for more chemo. Enjoy your time together without the kids.
All the best
Roy
User
Gutted for you, my friend, but no-one will ever say you were timid xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Sorry to read this Simon.
dave
User
So gutted for you, I know how much you wanted it to continue, let's hope it's had some effect.
All the best
Roy
User
So sorry Si. Our wishes are with you.
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User
How often is your PSA and T going to be measured?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thank you all so much for your comments on my other thread really does mean a lot, i will now post on here now.
So i am having testosterone and PSA done on Monday to see how high it has gone, my main reason for doing this is there really was nothing nice left and i want a great spring and summer with my girls.
One things i forgot to mention is you MUST be pain free this will make pain a lot worse.
I am awaiting a call back from prostate cancer UK what i find really annoying is once you get in my position you have had some pretty sh*t treatments and probably crap side effects, America is now recruiting for phase 3 the actual injection costs £10 the other costs i paid was admin etc due to having to get it privately.
Why is there no trials starting here, yes its a bit Russian roulette but when you get hormone resistant it really is a pretty nice treatment i really fill good
So do we only run trials for drugs that cost thousands, i have already been asked for details of how others can do this.
Rant over i am off to wrestle a bear
Don't deny the diagnosis; try to defy the verdict |
User
Which injection is it Si? I was on Nebido 4mg for over a year which was injected into the buttocks. Probably nowhere near the dose you are getting though !! But it was on prescription
User
Hi Chris it was 400 mg the problem is Testosterone will need to be reclassified as they all say do not give to people with prostate cancer
Jamie really has put his neck on the line as he said if i die there are two approved treatments that i have not had yet, that old Chemo mixo something or other and Rad 223 and questions will be asked why he did not give me them first.
i owe this guy a lot
Si
Don't deny the diagnosis; try to defy the verdict |
User
Good luck si, and not forgetting your family who are no doubt behind you on this new journey, it means so much to men like my OH who are relatively new to this awful disease who have so many uncertain paths to god down, so for you to be trailblazing this and bringing it to the forefront and sharing it with us is truly amazing..
Good luck..
Jo
User
Well they were giving it to me having missed the fact I had prostate cancer. Can’t be bothered suing. When I rejected RT for the third time they had a specialist nurse come into the room to witness it. They knew it wasn’t there but were simply following protocol. I’m secretly hoping my prof will offer immuno when I’m classically diagnosed as advanced
User
Thank you for sharing your journey and this thread. I will be following your story and all fingers crossed for the ‘injection in the bum’ solution.. go batman!
Regards
Clare
User
I have read a lot about this recently and some very exciting outcomes ( although for other types of cancer so far)
Have you seen anything Chris about prostate cancer outcomes. I do think this may be the way to go in the future especially if tailored to the individual.
Good luck Si with your BAT. I feel so humbled by your bravery. What a star you are.
Regards
Ann
User
Hi Si
Pleased you and Jamie are on the same page and I hope you get a positive outcome. I wil be following your journey with interest as I feel I may be looking to persuade my Onco to think outside the box next week ( chemo sucks doesn't it). Enjoy the boost mate.
All the best
Roy
User
Thanks for posting this Si. I will be following with interest but also very much wishing you a good outcome from this “trial”.
Ian
|
User
Best wishes and thoughts to you all with this Simon,
It may be a bold move for Jamie, well done to him for that.
But, it's an incredibly courageous decision by you.
Trusting that you will continue to surprise us all and push boundaries.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
So Had bloods done after 4 days on BAT
PSA has gone from 5 to 9.9
Testosterone has gone from castrate to 38.9 nmol or 1121 ng the target they would like is 800 - 1200 god knows what is was 4 days ago
Now just need to ride out the storm https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Don't deny the diagnosis; try to defy the verdict |
User
Si,. Looks to be as expected. Hope all goes well through the first month.
AC
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Good luck Si, I hope it all goes as hoped in the next few weeks.
Thanks Chris
User
How do you feel Simon? What does all that testosterone do to you? Hope you are well during this. Thinking of you and Ness
User
Hi Paul,
Well now things have settled down this is what happened
one hour after the injection i felt like i had drunk 8 pints of beer
Friday felt absolutely great
then it went down hill, every muscle in my body ached, urine flow for a couple of days dropped dramatically, felt totally washed out and it all came to a head yesterday when it felt just like i was on chemo all i needed was the metallic taste and it would have been there.
Today things are much better and hopefully that,s it till the next injection
Not quite what i expected but i suppose when your body has had no testosterone for over 5 years something was bound to happen
Bloods again Wednesday when hopefully i am at castrate level
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
I do hope it works out, please make sure you get checked out if things get difficult. Your body must be doing somersaults. Stay safe mate.
User
How will you get back to castrate level so quickly?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Lyn
I am still on HT in the trial most got back to castrate level around 7-10 days
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Oh okay - squeaky bum time then x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Nah Long past that, if things like that worried me this treatment if you can call it that would be the last thing I would do
Don't deny the diagnosis; try to defy the verdict |
User
You might be okay with it but I will worry on your behalf
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
So quick update
Started on the 15th March PSA 5 testosterone castrate level
19th March PSA 9.9 Testosterone 38.9
Today PSA 19.9 Testosterone 11.8, interestingly ALP dropped to 56
Just need to get to castrate pretty soon next testosterone injection due on 12th April
Si
Don't deny the diagnosis; try to defy the verdict |
User
Si, Isn't that ALP still within the normal range, but possibly not your normal? Don't you have to tough it through the first cycle in the hope that thereafter, PSA drops as in the US trial?
Thinking of you and hoping all goes well.
AC
User
Hi AC
Yes the ALP is right at the bottom of the range, i think i was expecting a big rise.
Here is a nice video i found that really explains the use of Testosterone really well compassionateoncology.org/v...
I think my biggest problem at the moment is when i had problems on any other treatment either my nurses or someone on here would have the answer, as things are now no one has the answer.
I did get in contact with a guy in the U.S doing BAT but he wanted to skype me so that we could pray together https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif so i will just continue to be in the dark
Hope all is going well for you, i am trying to get Jamie to join me at the meet up at the Mill to do a talk if he is up for it i will contact Prostate cancer UK to see if they want him to come
All the best mate
Si
Don't deny the diagnosis; try to defy the verdict |
User
Sure you guys and gals have seen this site https://healthunlocked.com/advanced-prostate-cancer/posts/135715505/high-dose-testosterone
It's a bit technical for me to folliwing but I post it anyway as it may help if you haven't seen it.
Good luck with your cutting edge therapy...
User
Francij4, a fascinating look at actual cases. Thank you.
Si, a brilliant idea to get Jamie there. My oncologist was quizzing me about him, but of course I know nothing, like Manuel. I imagine he would be absolutely fascinating to meet. It seems to me that your bloke in the US is the one in the dark, whereas you are very much in the limelight!
AC
User
So here are the figures for my first month on BAT therapy
DAY 1 PSA 5 testosterone castrate level
DAY 5 PSA 9.9 Testosterone 38.9
DAY 13 PSA 19.9 Testosterone 11.8, interestingly ALP dropped to 56
DAY 22 PSA 19.7 Testosterone 5.4
I should have been castrate by now but at least PSA has started to drop, my PSA at diagnosis was 3.6 and the highest it has been prior to starting BAT was 7.2
So on Thursday i am meant to be getting my second testosterone injection, need to have a good think about this
SI xx
Don't deny the diagnosis; try to defy the verdict |
User
any other symptoms / benefits??
User
Si, early days still. Do you stick or twist? So difficult when you are pursuing an experimental course of treatment. Perhaps give it another go, if Jamie has other options available to retrieve the situation if the second round shows no improvement? But as we both know, we are running out of options..
I'll be watching closely and hoping for progress whatever you decide.
AC
User
Hi Si
Thanks for the update. It's hard decision to make and only you can decide the way forward. What you have to ask yourself is has the PSA peaked and on a downward trend, which is hard to tell this early on. Am I right in thinking Jamie is offering chemo alongside BAT, if so would it be something you would be open to, hitting it hard from all directions. We are all behind you so choose wisely and keep us updated.
All the best
Roy
User
Thanks Guys
AC stick or twist that is the question
Roy, i have been sending my PSA through to Jamie each week and it was something thrown in for discussion on Thursday
Interestingly a post i did in October 2015
"But i am a great believer in playing around with treatments and not letting the cancer get to familiar with them. After looking around the internet for studies on my sort of cancer a friend found one and it made interesting reading.
Records of 3800 men was checked to find men diagnosed with PSA <10 and more than 5 areas of spread, 44 was found, the average response to HT was 7 months, 5 had early chemo 3 responded well but two weeks after finishing the cancer progressed. 30% went to soft tissue and they all died within two years.
So i know Jamie's choice is go back on Abbi, mine is stop HT for six months, my PSA has been undetectable for over two years and i fancy a break and i would like to see what happens.
Another one of Jamie's is 6 cycles of chemo, big No from me i would only do chemo again if my cancer was wide awake and bright eyed and bushy tailed, so that would mean no HT and testosterone patches prior to starting, big big NO from Jamie."
Funny how things turn out
Don't deny the diagnosis; try to defy the verdict |
User
I am pondering your news x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Well second injection had last night not reall sure if it’s working
So in for a penny in for a pound have bloods in two weeks and hopefully PSA hasn’t doubled again
Don't deny the diagnosis; try to defy the verdict |
User
User
Hope PSA doesn’t rise as much again Si. Everything crossed for you.
Ian
|
User
So an update on my testosterone treatment;
DAY 1 PSA 5 testosterone castrate level, 400mg testosterone injection
DAY 5 PSA 9.9 Testosterone 38.9
DAY 13 PSA 19.9 Testosterone 11.8, interestingly ALP dropped to 56
DAY 23 PSA 19.7 Testosterone 5.4
Day 28 400mg testosterone injection
Day 41 PSA 25.96 ALP 83
Now things become a bit more difficult, Oncologist not happy to continue if my PSA did not drop today, so i will see if my GP will do a PSA test next week and hopefully there might be a drop.
The increase was not as big after this injection so i really want to push for one more injection,
Don't deny the diagnosis; try to defy the verdict |
User
Good luck with convincing Jamie for one more testosterone injection Si.
You’ve come this far so one more for the road?!
How do you feel?
Ian
|
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Lyn
Ness is behind me 100%, once the HT stops working treatment options become quite limiting, and anything that can keep me away from Chemo and thats all that is really left is worth a shot.
I am lucky to have an Onco that lets me have such an input into my treatment, even tho we have many heated arguments he still sticks with me and i am sure over these last 5 years he has learnt a lot.
Ian
A typical month is first week lots of muscle ache, reduced urine flow and thats about it, the next two weeks or so everything is back to normal and then the last week as i head back to castrate level my love of handbags and makeup returns https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif
I have put on about 10lb in weight in the last 7 weeks but perhaps thats just fattening me up ready for Chemo.
Si
Don't deny the diagnosis; try to defy the verdict |
User
So just had for me the most important PSA test since diagnosis.
Jamie wanted to stop the BAT therapy after my last PSA increase but has agreed if my PSA drops with today's blood test then i can continue.
As he is on Holiday next week he has left a script with the Chemo nurses to administer it next Thursday on me producing the PSA results.
I am convinced it will work and just need one more injection https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif for two weeks each month i feel just like i did before i was diagnosed and the option of Chemo again for the third time is not appealing and i will be declining it.
So watch this space, due to the bank holiday i will not get the result till Tuesday but i know it will be a big drop https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif hopefully
Hope everyone has a great Bank Holiday and enjoy the lovely weather the twins are away camping with scouts so its just me and Ness and a few nice pubs
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Enjoy your weekend Si. Hope the result on Tuesday allows you to continue on BAT.
Ian
|
User
Si, fingers and everything else crossed for you on Tuesday. My own experience is no correlation between how well I feel and that damned PSA reading. My PCa treatment is now parked until we know what is going on in my liver, following my biopsy, supposedly urgent, on 15th. If you meet with success, I may well follow your lead, so for both our sakes I hope all goes well!
AC
User
All my digits are crossed for you as well!
Have a good weekend.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Good luck for Tuesday. I totally understand the reluctance for more chemo. Enjoy your time together without the kids.
All the best
Roy
User
User
I hope the girls had a great time - 5000 scouts in one place sounds like hell.
I will be thinking about you tomorrow so don't leave us hanging for too long :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Bugger Bugger Bugger
25.96 to 26.5 this will be a fun phone call i am not giving up over an increase of 0.5 and a little bit
Don't deny the diagnosis; try to defy the verdict |