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The dreaded,...BICALUTAMIDE

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User
Posted 26 Oct 2022 at 16:22

Hi all,

As my PSA is on the up (1.9) I have been put on Bicalutamide with an additional injection every three months.

My question is;

I have started having hot flushes, around 15 a day, has anyone found a way to handle these? My Consultant has told me there are tablets to help but I would rather wait until I have another 20 days Radiotherapy in December.

I drink tea and that tends to kick off a flush,.... I can hear you say,... " Then don't drink tea then! ' Ha! Ha!

Any ideas would be appreciated.

Thanks.

 

Sid.

What matters is not the years in your life, but the life in your years!
User
Posted 28 Oct 2022 at 07:17
Give up alcohol helps I believe, no idea how!
User
Posted 28 Oct 2022 at 09:13

Hi Sid

Can't really help in a solution to your hot flushes I mainly get them at night I also get the sweats as well,but my thoughts on this is as long as a keep having these flushes/sweats I know the tablets are working so bring them on.

Stay strong 💪  everyone 

User
Posted 28 Oct 2022 at 11:04
Try sage tablets - works for a lot if menopausal women. Try to avoid clothing and bedding made of man-made fibres - pure cotton, linen or wool are better. Also, wear layers that can be removed and replaced easily.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Oct 2022 at 11:50

Just a heads-up that sage is not a good idea with Enzalutamide.

User
Posted 28 Oct 2022 at 13:11

Where is that from Andy? Based on one report involving one patient in Canada? He was taking in over 100 different chemicals in his homeopathic remedies. They also identified garlic as an enza inhibitor but loads of men will be eating garlic while on enza - it must surely be about taking these things in very large quantities? 

Edited by member 28 Oct 2022 at 13:14  | Reason: Not specified

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

User
Posted 28 Oct 2022 at 17:26
What do you dread about bicalutimide, Sid? I had bicalutimide as a primary HT and found it all pretty tolerable.

Best wishes,

Chris

User
Posted 28 Oct 2022 at 20:50

Originally Posted by: Online Community Member

Where is that from Andy? Based on one report involving one patient in Canada? He was taking in over 100 different chemicals in his homeopathic remedies. They also identified garlic as an enza inhibitor but loads of men will be eating garlic while on enza - it must surely be about taking these things in very large quantities? 

It's from his pharmacist who identified that sage inhibits one of the pathways which Enzalutamide needs to work, if you read the paper.

User
Posted 28 Oct 2022 at 22:41
I got bored halfway through the report. There doesn't seem to be anything else out there suggesting that sage or garlic should be avoided while on enza.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Oct 2022 at 22:45

Thanks for your thoughts,... first of all, give up alcohol!!!!!!???? No sorry, not an option, I have already given up sex, you can't take all my pleasures away! I must admit, after having above average Testosterone, my sex drive has literally gone! and with all the flushes and sweats I'm too tired anyway.

Thank you Lyn, I think you're right, layers of clothing and cotton sheets is the way to go.

Don't really want to take tablets though, as all tablets have side effects, thought there may be some foods out there that counteract the drug. Never mind, it's all part of the journey,....

p.s.  Sorry Chris, I don't dread the Bicalutamide it was just I had to add something to the title as there is a thread called Bicalutamide! Dread was inappropriate, as I don't want others to think it is a dreadful drug. Actually I am glad they are available, also this will be my second lot of Radiotherapy, when I was diagnosed I was told I could only have one session of it. So we are learning all the time about this beast.

Take care all.

Sid.

What matters is not the years in your life, but the life in your years!
User
Posted 29 Oct 2022 at 16:08

There you go Lyn,.... My Onco Nurse has suggested, wait for it,....

MEDROXYPROGESTERONE !!!

Sid. 😳

What matters is not the years in your life, but the life in your years!
User
Posted 29 Oct 2022 at 20:25
About the hot flushes- if you have any cancer treatment "charity" type places close (ask at a Maggie's or Macmillan?)they may offer acupuncture. I had plenty of hot flushes, was able to have acupuncture and it really seemed to help, they did not disappear but we're greatly reduced. I'd certainly have acupuncture again if needed.

Peter

User
Posted 30 Oct 2022 at 11:13

Thanks Pete, that is worth asking about, I'm a volunteer with Macmillan.

They do treatments like massage and reflexology which I have booked before my Radiation treatment, I have a CT scan soon for the tattoo"s, then hopefully soon after 20 or so days of RT. The last time, I finished treatment on Christmas Eve!  I'm going for the double,... 😎

Sid. 

What matters is not the years in your life, but the life in your years!
User
Posted 19 Nov 2022 at 07:32
Hi Sid

On the flushes, I have an air cooling tower that oscillates in my bedroom which has a remote control. When I wake up with a flush, I find the combination of chucking off the duvet and switching that on helps. (It was my wife’s - she had Spino Cerebellar Ataxia Type 1 and couldn’t control her body temperature so we had a variety of things to help, the tower, hand held fans, cool blocks from the freezer etc). Sadly she died in May at age 60.

Good luck.

User
Posted 19 Nov 2022 at 09:12

Hi DB,

Firstly, I am so sorry for the loss of your wife, it must be very difficult for you and on top of that to be diagnosed with PC, but I am glad you have a close family and some good friends who can positively support you.

I know this has probably changed your whole outlook on life, as it did with me, I now value every day come rain or shine. Thank you for posting, my heading the dreaded Bical is not appropriate but there are a few posts about Bical so I was asked to change the title. It is only a tablet after all and if it helps keep the beast under control for however long then good ho! Mind set and good support is the most valuable. 

Lyne Eyre is very good on here and knows an awful lot, in fact I might try the Sage tablets she suggested.

Your advice is sound and appreciated, I hope the Radiotherapy helps in January, I start mine on 21st December.

On a final note, I have been accepted onto the STAMINA Trial (for those who have started Hormone Treatment)

I now have a personal trainer!!!!!   😀

Take care.

Sid.

What matters is not the years in your life, but the life in your years!
User
Posted 19 Nov 2022 at 11:54

Thanks Sid. Good luck with the STAMINA trial (sounds interesting I must look it up). And with the personal fitness trainer!

My wife had a personal trainer for 15 years and he’s become part of our family. He’s moved seamlessly from training her to me. What we did learn from that experience was how important it was for her. Because of having a super strong core and arms/legs she was still capable of standing on a turner for transitioning from bed or loo to wheelchair etc and vv which most people in her condition would not be able to.

I have other members of my family who have inherited her disease so we’re already very much on the page of living for today & making the most of every opportunity. I did the sensible thing with my critical illness payout and bought a 46 year old 5.9 ltr V8!

Good luck

User
Posted 19 Nov 2022 at 20:14

Originally Posted by: Online Community Member

I did the sensible thing with my critical illness payout and bought a 46 year old 5.9 ltr V8!

Of course, wonder if it's a common response. I bought a well traveled twin turbo 4.5 litre V8, though in my case it's a diesel Landcruiser. Excellent therapy!!!

Jules

Edited by member 19 Nov 2022 at 20:29  | Reason: Not specified

User
Posted 19 Nov 2022 at 22:18

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

I did the sensible thing with my critical illness payout and bought a 46 year old 5.9 ltr V8!

Of course, wonder if it's a common response. I bought a well traveled twin turbo 4.5 litre V8, though in my case it's a diesel Landcruiser. Excellent therapy!!!

Jules

Enjoy but still continue with physical exercise to the extent that you are reasonably able!

As regards taking vitamin tablets above those prescribed, herbal preparations or remedies, I feel it sensible to run any such proposed changes past the oncologist, just incase this conflicts with treatment to some extent. 

Barry
 
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