Lobular breast cancer just diagnosed

Hi arpie,

 Thank you for your input.

My surgeon is also my oncologist, and he did prescribe the hormone blockers.

I'm on Exemestane, for the last 5 days.

Before the cancer diagnosis I was on HRT, so I've really only been off them a couple of months as I'm in my late 60's, unfortunately my doc never warned me not to be on it :(

The magnesium isn't helping sadly, although in hospital I had a night of restless legs and the nurse gave me some and it helped then.

It wasn't the pain it was the feeling of needing to constantly move my whole body, legs AND arms, a truly horrible feeling. VERY restless all over.

My GP didn't want to give me sleeping pills, she gave me script for melatonin, so I'll give it a try.

Maybe my body got too used to the pain killers, perhaps I need to wean myself off them instead of just stopping completely? who knows.
But thanks I'll have a listen to that online thing about menapause,

x

That's a bummer, @Cindi .... I get restless legs now & then, but not with associated pain :(   It can keep you awake, which can be debilitating in itself, as you feel knackered the next day. :(  You'd mentioned restless legs a couple of times before you started the AIs .... so it may just be a coincidence :( 

I just did a 'search' on it on BCNA - and here are the results - you may find some nuggets of information that may help xx

Magnesium is supposed to help with muscle twitching etc .... maybe try that (but put it past your Onc first tho.)

How old are you?  Had you already gone thru menopause before your surgery?  or is it the AIs that are putting you into an early menopause? Cos the sweats & other stuff is pretty well common for going thru menopause :(  

Maybe watch the Menopause Webcast on Dec 6th ..... (I just put up a doc about Menopause on the thread to read ...)  
https://onlinenetwork.bcna.org.au/discussion/26010/menopause-its-more-than-a-hot-flush-webcast-on-6-december-2023#latest

Start writing down in a diary, what happens, when and for how long ..... so you can show it to your Onc on your next visit.  When do you see them again?  Usually it is the Onc that prescribes the AIs, not the surgeon.  You could try ringing them too - just try & get it all sorted in the next couple of weeks, cos as of Xmas - they are all 'on leave' til the middle of January!! 

You are on Exemestane/Arimidex?  From memory you've only been on it a for a week or so & that would be VERY quick acting if it was the meds!

I hope it lessens & good luck this arvo at the GP xx

Hi,
 I've been going a lot better, just some pain in night along scar and chest, but getting less and less, but last night was horrible.

I've been cutting down pain meds but last night I had such bad night sweats and restless legs AND a sort of restless leg syndrome throughout my WHOLE  ENTIRE body!!

I don't know if it's a side of the Hormone Blocker ? but it's almost unbearable.

I had to end up having a pain killer to calm my body as I was so uncomfortable, does anybody at all have any idea how to help this situation? has anyone else had this weird sensation?
Any input would be greatly appreciated as I have an appointment with my GP this afternoon and I can get a script for anything anyone can suggest?

x

@HelenlovesSnoopy, thanks so much , you're such a caring soul. xx

@arpie, thanks for that, I'm sure it'll heal soon, I've just got to not do so much, which is hard for me :(
and I'm also taking the pills at night, a bit tired today. Thanks for the advise xx

@Afraser, that's interesting about getting checked regularly, your surgeon sounds good, mine is a bit too laid back about everything I think.
I'm going to see my GP next week and I'll talk to her about it, because I definitely would feel happier having checks like you did. At least for peace of mind. Thanks for your input xx

I had six monthly checks at first with my oncologist and surgeon, staggered so I saw one of them every three months. Then after a couple of years, yearly (so one every six months). Practices vary but it seems reasonable to ask about follow up checks. Best wishes. 

Gosh, I hope your pain along that scar line stops soon, @Cindi xx

I take my AIs at night too and it works better for me, than in the morning - I reckon it 'does its stuff' whilst we are asleep .....  Keep as active as you can once you start it xx  and just keep a note of anything that may seem 'odd' ... hopefully none!  Some fly thru the AIs!

take care

Hi Cindi!  I think I have 'chemo brain' and I was already struggling to remember how I felt 3 weeks post op!  But I looked up my little book and remember that I had my post op appointment 2 weeks after and was considered to be going pretty well then.  That's about all I can tell you!  It did take me a while to be able to sleep on my side.

I saw my surgeon a few days ago, & he took more blood from where it's swollen, then gave me a script for Exemestane ( Aromasin)
 
I asked again how he's going to check that I stay cancer free but he seemed very blasé about it now, saying he didn't think it'd be necessary ?!
 I thought before he had mentioned CT scans and ultra sounds, but now maybe nothing, I would feel happier knowing I could have yearly checks somehow.

I'm going to start the hormone blocker tonight with dinner. Hope it agrees with me. At least that helps to stop the cancer coming back.

The pain along the scar line of my double mastectomy is still getting quite sore in the night, & under my arms, so I take a pain killer at night, even though it's been three weeks now, so surely it should be better by now?
Anyway, hope everyone's going as well as they can,

Take care x

Thanks Arpie, very helpful :)

SO glad you saw your nurse ..... and hopefully the problem is solved ..... just keep in mind, IF IN DOUBT, GET CHECKED!!  Don't put off seeing someone (or at least asking someone) .... 

Restless legs are a pain!  They wake me up sometimes!  Magnesium is supposed to work ..... I find it is worse if I am too hot too! So right now, we are fluctuating with cooler days & hot days & I have a rug on the bed as I'd swapped to a lighter quilt cover & it is happening again  ..... grrrr   

Remember .... gentle walking!  ;) 

Check out this post re hot flushes ....
https://onlinenetwork.bcna.org.au/discussion/comment/217534#Comment_217534

take care xx