Lobular breast cancer just diagnosed

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  • arpie
    arpie Member Posts: 7,801
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    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


  • Cindi
    Cindi Member Posts: 137
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    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
  • arpie
    arpie Member Posts: 7,801
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    Sorry - forgot to add the link re the 'restless legs' to see if anyone else has some tips ...
    https://onlinenetwork.bcna.org.au/search?domain=all_content&query=restless leg&scope=site&source=community

    Talk to your Surgeon/Onc about the issues you are having .... there ARE options.  There is also medicinal cannabis oil - which can take the edge off aches & pains & help with getting quality sleep.  You usually have to have tried 2-3 different meds to control the issue .... but you need to find a medico who is prepared to give you the script, if you want to try it.  I've been using it for a few years now - and it really does help.

    take care & all the best x
  • iserbrown
    iserbrown Member Posts: 5,604
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    @Cindi
    Reading back through your posts here it would seem you perhaps have upset the healing process by vaccuming, housework too soon.  You mentioned restless legs prior to starting Armidex.  

    Give the body time to heal

    If needed there's such a thing as Pain Management clinics 
    Take care
  • Cindi
    Cindi Member Posts: 137
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    Hi  @arpie & @iserbrown,  thank you both.

    I want to let you know that last night  I noticed after about an hour after taking the Als I could feel the strange sensation through my arms & body, almost maybe a nerve thing, anyway , I took the melatonin I was prescribed by my GP one and half hours before bed and I actually slept!! NO RESTLESS legs or body!! :)
    NO PAIN KILLERS!
     This melatonin is perscription only and it's called MELATONIN ARX 2mg and I had 2  one to two hours before bed. It actually works  :):)

    Also yesterday I went back to my gym and did walking and some light weight resistant stuff, listening to my body all the time so I wouldn't over do it, I'm sure that helped me last night, so will continue each day.

    Arpie, I would really like to get on that medicinal cannabis oil but have tried with my doctors ( all against it) and another one suggested by a naturopath ( also refused) and the others suggested were all a very long waiting list or not taking on new patients, it's very frustrating, as there's so much evidence that it helps people with all sorts of health issues and depression, as I have.
     I will keep trying.

    Can you tell me please, so it doesn't interfere with the Als  ?

    And iserbrown, yes the restless legs started soon after I stopped the HRT I was on, I stopped that when I got diagnosed with the cancer . :(

     Thank you both for your help xx



  • arpie
    arpie Member Posts: 7,801
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    I don't believe it interferes with my AIs @Cindi - and my Onc is aware I am on it - and she has given me a letter that I carry with me in the car, in case of a road side test .....

    If you put Medicinal Cannabis Oil in the 'search' area - a lot of conversations about it will pop up ;) 

  • Cindi
    Cindi Member Posts: 137
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    Thanks arpie  :)
  • Cindi
    Cindi Member Posts: 137
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    I was just wondering something.

    Now that I'm off treatment except for the Hormone blockers, I was thinking, wouldn't it be nice to have a glass of wine again sometime, or do you think this is forbidden now.

    Does anyone know if this is allowed?
     I guess I could ring my breast nurse, but she's hard to get onto.........& she'd probably say.... no :(

    Does anyone know?

    I know it's just a little thing , but I did used to enjoy a glass ( one) before this whole nightmare begun.

    x
  • Afraser
    Afraser Member Posts: 4,392
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    Most medical practitioners are hesitant to
    recommend alcohol at all. Which is fair enough. The main thing is how great a risk is occasional alcohol. If it’s a habit, and worse if it’s an increasing habit, then it’s not good for your overall health and most studies suggest it may be linked to cancer. There is of course a difference between links, triggers and inevitable causes! I do have a glass of wine but I try and use non alcoholic wine (or beer) as much as I can. It’s not the same but it helps! I don’t drink sugary soft drinks or fruit juices, and relaxing with a nice glass of water doesn’t quite cut it! I actually find non- alcoholic beer perfectly acceptable. Good luck! 
  • HelenlovesSnoopy
    HelenlovesSnoopy Member Posts: 94
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    I have been having the occasional mini-bottle (basically a glassful but may be slightly over a standard drink) on non-chemo weeks. I think it’s a matter of balance as Afraser says. I’m not tempted often because my taste buds are a bit iffy anyway. But I’m of the opinion occasional is fine so long as it doesn’t creep up. 
  • arpie
    arpie Member Posts: 7,801
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    Good on you @HelenlovesSnoopy ..... you deserve your glass of wine xxx. You've earned it. 

    Definitely a balancing act, @Cindi .... but I also don't deny myself one of my few pleasures these days - which is a glass (or 2) of wine at the end of the day with my dinner! .... I even have a Rum & Coke now & then too!  ;)  (Yeah, WICKED, I know!) 

    Same with Meat and anything else you eat - eat in moderation, not to excess.  Same with exercise!!! 

    Everything, in moderation - nothing to excess. ;) 
  • Cindi
    Cindi Member Posts: 137
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    Thank you @Afraser, you are probably right, but I'd like an occasional one maybe? @Helenloves Snoopy, I agree with @arpie, you deserve it,, and Arpie, I actually like your post ( hehe!!) sounds more fun!
    But I'm being very strict with myself, and had a blood test to check my liver function and am happy to say it's back to normal, but still, if I have a glass it'll only be one.
    I'm taking it easy back at the gym too, but so happy to be back, it's one of my happy places.
    I eat healthy ( fish, vegies) but I do like something sweet  :| not too much.

    Also wanted to say I've found a doctor who has prescribed me medicinal cannabis oil ( without the THC in it) but she thinks it'll help me with my anxiety, worry, aches & pains and sleep  :)

    I'll be picking it up on Monday from a compounding chemist, and starting off on a tiny dose in morning and afternoon, so I'll see if that helps & let you know.

    Boiling hot here today, it's now 44 degrees, not very nice, really feel for those in this heat on chemo. :(

    x
  • cactusk
    cactusk Member Posts: 60
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    Hi @Cindi
    i too am being treated out of Mater hospital and had overnight lumpectomy.
    i meet my med onc and rad onc this week - I am still taking it all a day at a time, the waiting is really challenging.
    i went in to see the staff at The Kay Van Norton centre - a separate building but on-site at Mater.
    it has a bunch of support services - may be helpful for you?
    happy to chat more given we’re both at the same hospital.
    kelly ( cactusk)
  • RedRose77
    RedRose77 Member Posts: 15
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    Hi Cindi, I have just been discharged from hospital after having a mastectomy and reconstruction (DIEP flap) after being diagnosed with lobular back in October. Happy to pass on any information you might like. 
    Take care xx
  • Cindi
    Cindi Member Posts: 137
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    Hi @cactusk,
    That's helpful, thank you. Yes we should chat.
    I'll send you a message if you like.