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Bazza Update - The road of certain uncertainty

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User
Posted 20 May 2017 at 06:24

Nice to read some good news Bazza


enjoy the weekend


 


Barry

User
Posted 20 May 2017 at 09:38

Chuffed for you Bazza

Kind regards
Ray

User
Posted 24 May 2017 at 06:13
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 06:56
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 07:12

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 07:30

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 12:03
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 13:23

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


If life gives you lemons , then make lemonade
User
Posted 13 Jun 2017 at 16:27

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 18:21
No gin. Not in France. Masses of vineyards near though.
User
Posted 13 Jun 2017 at 20:37

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 10:19
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 10:45

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 13:14
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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