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Bipolar Androgen Therapy (BAT)

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User
Posted 22 Mar 2018 at 21:32
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
Posted 22 Mar 2018 at 22:10

Oh okay - squeaky bum time then x

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

User
Posted 22 Mar 2018 at 22:17
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
Posted 23 Mar 2018 at 00:11

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
Posted 28 Mar 2018 at 17:03

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
Posted 28 Mar 2018 at 17:17

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
Posted 28 Mar 2018 at 17:42

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
Posted 29 Mar 2018 at 08:44
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
Posted 29 Mar 2018 at 17:29

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
Posted 09 Apr 2018 at 08:42

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
Posted 09 Apr 2018 at 11:41
any other symptoms / benefits??
User
Posted 09 Apr 2018 at 17:18

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
Posted 09 Apr 2018 at 19:27
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
Posted 09 Apr 2018 at 21:34

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
Posted 09 Apr 2018 at 23:10

I am pondering your news x

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

User
Posted 13 Apr 2018 at 08:01
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
Posted 13 Apr 2018 at 08:25

Good luck x

User
Posted 13 Apr 2018 at 10:04
Hope PSA doesn’t rise as much again Si. Everything crossed for you.

Ian

Ido4

User
Posted 25 Apr 2018 at 18:27

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
Posted 26 Apr 2018 at 12:04
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

Ido4

 
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