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Bazza Update - The road of certain uncertainty

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User
Posted 18 May 2017 at 22:27

I think orchiectomy causes hot flushes as well Stuc :-(

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

User
Posted 18 May 2017 at 22:46
Fantastic news so happy for you Bazza this is what you call a good news Thurs and that's only ever preceded by a good news Fri .

Of course the toss up between the Balls and the wine debate is something i Should stay out of (😄 just thinking of Lyn and her Keyboard) .

So of course I am going to say enjoy the wine first celebrate and put the balls on hold 😉

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 May 2017 at 23:04

I don't think he should put his balls anywhere just in case someone comes along with a big pair of pliers. Best keep them tucked away Bazza

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

User
Posted 19 May 2017 at 08:38

Just caught up Bazza and very pleased for you

Hope the wine and the meal were spectacular

We can't control the winds - but we can adjust our sails
User
Posted 19 May 2017 at 14:01

Great news Barry.

Keep kicking it's ass

Bri

User
Posted 19 May 2017 at 19:58

Hi Lyn, sorry to impose on Barry's thread, but I had assumed that without my shrivelled peas I would not need such drugs as Prostap, being the cause of the hot flushes. But if you're saying chopping off them still produces hot flushes then I'll keep a hold on them. Barry keep them intact sounds the best advice.

Cheers

Stu

User
Posted 19 May 2017 at 20:37

Hi Stuc, they are caused by the lack of testosterone not the HT

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

User
Posted 19 May 2017 at 20:59
Fantastic news Bazza, so pleased for you.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 19 May 2017 at 21:15

Blimey Lyn, why couldn't my Urologist tell me this, my testosterone has been below 0.2 ng/ml for more than a year. Thanks for this valuable peice of information, it will change my whole ideas on this bloody PCa and stop me chasing my tale. Also I'll stop complaining about the hot flushes.

Thanks,
Stu

User
Posted 20 May 2017 at 01:51
Good news, Bazza. Enjoy your weekend.

Steve

User
Posted 20 May 2017 at 07:24

Nice to read some good news Bazza

enjoy the weekend

 

Barry

User
Posted 20 May 2017 at 10:38

Chuffed for you Bazza

Kind regards
Ray

User
Posted 24 May 2017 at 07:13
Since the half positive news of last week, I need advice on what's been happening.

Given that my bone scan was clear (yippee), since stopping Enzalutamide, I have been wracked in pain, most lower back, front pubic area and left hip. Not only that, I've had shivers and flu like symptoms which is mos unlike me as I never usually suffer from these.

Does anybody think there might be a causal relationship between coming off Enza and my symptoms?

The feeling of deep, gnawing lower back pain and flu has been debilitating and nothing up to dihydrocodeine has fond anything to address it.

Thanks

Bazza

User
Posted 24 May 2017 at 07:56
Hi Bazza,

Sorry to hear that you're having these symptoms and can't really help with any expertise but it does sound like it could be an effect of coming off the enzalutamide.

Hopefully, someone will be able to help more.

Fingers crossed that you will feel better soon.

Steve

User
Posted 24 May 2017 at 08:12

I can't help either Bazza but sorry that the positives have been negated a bit.

Could you perhaps ask your consultant or at least your GP (although I suppose he/she might not have the expertise to advise you either)

Hope you feel better soon

We can't control the winds - but we can adjust our sails
User
Posted 24 May 2017 at 08:30

Bazza, this may be a spot of tumour flare which can be very painful though won't last. When I came off bicultimide I woke up with terrible pains wherever I had spread. I was given iramorph and trsmodol which were not pleasant but eased the pain until it subsided. Given that enzalutimide is a strong drug there may be similar withdrawals. Talk to onco or GP.

I start enzo later today always nerve racking when you start a new drug.

User
Posted 13 Jun 2017 at 13:03
Well, this road is certainly an uncertain one. Yesterday, I went in to see my onco after my big rise in T and PSA last month. She had a smile on her face which was a bit unnerving. Having taken me off Enza and gone back on the Prostap only, PSA fell 35% and my T 50%. She expects a further fall.

I asked if it could be an AAWR but seems to think no, not on Enza. Could it be to do with the 7kg I've recently lost as part of a real eat much less, get fit campaign? Possibly. Anyway, for the first time in a year, I walked out of Guys with a smile on my face and celebrated with a slap up meal of mint and pea purée washed down with a bloody large G&T (well some old habits will die with me, not before me!)

Oh, I also forgot to mention that I've been getting into Shaman drum music recently (Native American) drum rhythms and note that many are cycled at a certain Megahertz to supposedly aid healing of all kinds of diseases. It could all be Gobbledegook. I'm not so sure. I'm off to France in August to live with a family in a small house in the middle of nowhere north of Toulouse and do this drumming thing, walks in forest, talking over fires at night.....deep stuff

Wishing all my brothers and their marvellous wives strength, happy memories and problem free days.

Bazza

User
Posted 13 Jun 2017 at 14:23

That meal seemed to be missing a Ginsters pasty mate. Schoolboy error !
LOVING the sound of France 🇫🇷
Jealous ! Live strong

User
Posted 13 Jun 2017 at 17:27

Sounds good to me Bazza. I love the drumming bit and i wouldn't dismiss the healing power of nature and/or the drumming.

Whatever it is, I hope it continues.

(Will you be taking sneaky G & T with you to the forest?)

We can't control the winds - but we can adjust our sails
User
Posted 13 Jun 2017 at 19:21
No gin. Not in France. Masses of vineyards near though.
User
Posted 13 Jun 2017 at 21:37

Sounds wonderful Bazza - can you take John & ChrisJ with you?

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

User
Posted 14 Jun 2017 at 11:19
I need the solitude Lyn. No phones, no hospitals, no thoughts except focus on slowing the beast down. I will bang a drum for them though!

Bazza

X

User
Posted 14 Jun 2017 at 11:45

I am banging a drum for you too x

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

User
Posted 17 Jun 2017 at 14:14
Great news Bazza, hope the drums do their stuff however just enjoy life any way you can mate.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

 
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