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Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

14 REPLIES
Community Champion

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Waffles, I meant to share that when I. Had my injections in the bum, I stood up and leaned over the couch which was raised...and it barely hurt at all...the nurses did them over 2.5 minutes for me.

 

Moijanx

Community Champion

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Yes, how did you manage it? Didnโ€™t help me at all

 

Member

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

I've been on faslodex for 19 months still stable....

Community Champion

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Still here,

 

have pmd youxx

 

Moijanxx

Community Champion

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Waffles have pm d youxx

 

moijanx

Highlighted
Member

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Hi,
Got first faslodex/fulvestrant jabs today as part of plasmamatch trial. Jab in first buttock wasn't too bad but second was sorer. Bum not too sore at the moment but felt a little nauseous when I got back from hospital this afternoon and had to go to bed. Have some mild bone pain in shins now. If that's as bad as it gets I'll be happy.
All the best for new year.
Waffles xxx
Member

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Thanks Moijan I've passed on your suggestions and kind wishes to my wife.
Apparently her spine has been in a bad way for almost twenty years. She has been in and out of wheelchairs and has recently been provided with a Zimmer for use in the house.
I guess the bc treatment has just made things worse. Surprisingly her long term depression has improved recently! Her feet are puffed up with fluid and the water tablets don't help her incontinence.
She's been booked in at a local daycare hospice so maybe they will reduce her pain.
Despite all this we still manage a laugh and tell ourselves we've passed our alloted span by three years and try and enjoy life as much as poss!
Chris
Xx
Community Champion

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Hello Ladybird2

 

sorry to hear about Ladybirds leg pain. I know you've probably done all this...but I too get leg pain....rt front of leg..(shin splint).spotted,  its worse if my shoes are too tight over my top of foot....think ...(no evidence for this at all)maybe an artery which supply's that area gets pressed on? People talk on the web about these pains, if that's what Ladybird gets....lots of people get bone pains from ant oestrogen drugs, but these are often manageable.

 

My real bugbear was/is sciatica which I'm hoping I've managed to control...was getting this a lot. And it happens more when I'm stressed....anyway, I went to a really good chiropractor who apart from helping me with my poor posture, gave me the following advice - and as it really works, I have no worries about sharing it.

 

In bed sleep with a pillow between knees when on side.(under knees if on back.)

Sit on well padded seats in restaurants, other venues.

Make sure when sat down, that bottom is higher than your knees(this was purely as I also have bad knees)

Car seats...these are pretty lethal now for sciatica..they tend to be bucket seats - sit on a cushion.

 

The charity shop near my chiro tell me they do a roaring trade now in cushions for clients who come out of the chiropractors! Only ยฃ1 each. (I bought four so as to raise my btm on the sofa and keep one in each car.)

 I now conscientiously do all that(apart from the bottom height sometimes) and in church I sit on a kneeler on top of the pew. It works! But just one slip can bring on sciatica, however, I've trained myself now to do it....it's only things like unavoidable park benches etc which are a problem .  The chiro says it's the 'sitting bones'. Which set it off.     

 

Fulvestrant apparently can rarely give it to you, but fingers crossed...not so far. My theory is that the fluid obviously takes up space, the extra bulk of which which could press on the sciatic nerve, but my nurses have been pretty good..keeping to the upper outer side of the buttock and injecting it slowly over 2.5 minutes

 

sorry for the lecture....but as it really works, I'm passing it on. Sciatica became quite limiting for me...once it started in my btm, then my knee gave up too...its nasty xx. But you have to keep to the process.

 

Best wishes and love to Ladybirdxx

 

Moijan๐Ÿ’š๐Ÿ’š๐Ÿ’š

 

Member

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Hi Moijan
My wife Ladybird has been put on Fulvestrant recently. She's getting a lot of leg pain but has always had pain when on Letrozole too. Even before the bc she had leg pain probably from trapped spine nerves.
No pain no gain?
Let's hope Fulvestrant can slow these pesky blighters down.
Chris
Community Champion

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Hi Ladies, thank you.

 

bone pains kicking in now and mild headaches.

 

Mx

Member

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Hi Moijan, it did stop working but I got longer on it than I thought I would having spent years on hormonals beforehand. Hoping you enjoy a long run x

Member

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

H Moijan

Good luck on Fulvestrant, glad the injectons aren't bad.

Hugs Bon xx

Community Champion

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Thatโ€™s very kind Stillhere- did it stop working tho? Are you still on it?

Best wishes
Mx
Member

Re: Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

Hi Moijan, I'm so glad that you are having Fulvestrant now and that all is good so far. I think you know that I was on it about 18-22 months ago and it has been my best Mets treatment so far. I felt really well and went on a great holiday to India whilst on it. After the loading dose its once a month which is very doable and gives you freedom to feel normal.

Wishing you a long spell and no side effects xx

Community Champion

Fulvestrant Buddy Needed - Anyone Else in This Select Club๐Ÿ’?

 

Started on this drug today. Was pleased to find that the injections were virtually painless.๐Ÿ’‰

 

Would be lovely to share the journey with others on this drug - maybe also hear from some who have tried it before. ๐Ÿ”ฎ

 

Moijan ๐Ÿ’š๐Ÿ’š๐Ÿ’š