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Gail_Austen's avatar
Gail_Austen
Member
13 years ago

Femara the terrible necessity

At first bone pain, in the extremities, hot flushes that frightened others , certainly added to all the side effects of chemo then radiation and all that goes with it .....this adds to the mix........does it work well yes I can feel the drug working ......is it doing what it's supposed to do who knows ......my surgeon says if you can feel those side effects it is doing its job . Basically it seems if you exercise in moderation which I do it seems to really help .......getting oxygen pumping through your body pushes the limits and makes you feel better all round.......I am 69 and never stopped except when radium burns got me exercising.....nothing like I used to though.... Trained in paddling marathons surfing etc Now I ride my bike three times a week just slow fun trips for an hour then inrideto hospital for lymphodaema treatment in boobs arms and hands that works in a compression suit and also wearing sleeves and boob foam Great results on lymphodaema and also on femara reactions ......after three months plus on femara I would say pumping oxygen through system helps it's not easy to differentiate from all the effects of everything but femara is a standout for sure It's been 0ne year two operations double vision and infection from those lymphodaema from 23 nodes gon urns from radium and now side effects from femara All in all I do find the one positive is exercise low level or otherwise it gets the body working in better form this helps deal with all poisons good or bad which drugs are So the small gym circuit I have at home even a minute on each mode is good it definitely helps....it's oxygenating the body that provides better feelings without femara and it does that with it My feelings on stop r go are in the absence of better information I will stick it out....as I feel I have made improvements Ido work 6 days a week keeps my mind busy care for a two year old Weimaraner and manage the incredible load of appointments tat tag breast cancer patients So final answer for me hard as it is a ten minute minimum. Small gym circuit once a day , ride for a minimum of half hour three times a week, plus one trip minimum many times twice to hospital weekly about ten minutes either way. Oxygen into bloodstream keeps the good things happening I find...... I also take femara at night as I am tired from all my chores I do manage a business and my household as mentioned ......so tired bodies sleep most times

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  • Gail_Austen's avatar
    Gail_Austen
    Member
    12 years ago
    Made a comment and it disappeared So here's another go.......these jackets and indeed pants are available in hospitals everywhere in the OT dept Until I met the jacket my left boob in particular was so heavy it caused shoulder pain and headaches......apart from the pressure suit I have also bought from berlie in no the greatest bra......they are called the ultimate sports bra tested by the Australian Institute of sport unreal is all I can say they are designed to reduce bounce well in my case they hold my boobs firm and with the inserts provided by OT my boobs get shall we say massaged and softened simply by me wearing the bra with the inserts in ...so I do the exercises only once a day I have so many things to do that's all it gets the suit and the bra and inserts do the rest cccccit works because it's bloody hard to remove fluid fom boobs I hope this helps you cause it can the cream I use morning and night on boobs arms etc is aqueous cream BP made by AFT chemicals in Ireland it's about 500mg tub I have been using that cream since radiation So far I have had only four goes at pressure suit I had bad ashma which mrrant I missed a bit ...... I know a patient who had never heard of this had a seriously swollen limb .....has done a couple of treatments like me and arm is almost normal it works alright Hope that helps I am on the dreaded Femara but once again all I can say is by maintaining a simple short exercise routine either bike riding with my dog. A shorts circuit round my gym working in retail .......I do rest thanks for reminding me
  • Mich_x's avatar
    Mich_x
    Member
    12 years ago

    Hey Gail

    That suit looks amazing.  I don't think we are lucky enough to have any such wonder here in Perth though.  I was given a lil pillow made up by the lymph physio and was getting lymph drainage done plus massage plus I was doing lymph massage a couple of times a day. No change just worsening.  When the breast started to go all funny colours and harden even more that was when they decided to do all the testing of fine needle, core biopsies, skin punches and MRI's which have come back all saying no cancer and no IBC so I am very over the moon about this.  BUT there is a lot of scar tissue and scarring along with necrosis, haemorrhaging, fibrosis, and so it goes on and on listing all these things which I gather is making it hard for the fluid build up to escape. 

    I am now seeing plastic/breast surgeon at the hospital once I recieve contact of an appointment but it is not looking good for the poor breast.  Between radical surgery due to lump being so deep and on the chest wall and radiotherapy changes I will have to see what can be done. So still waiting.

    This has been going on since Xmas so I am getting a bit over it now.  BUT they have finally done all that they can to rule out cancer recurrence which was of course my biggest fear and everyone elses including the medical staff.

    I will continue with all the lymph drainage, my lil sponge parcel and physio treatment and hope that we can get somewhere with this until I discuss things further with different surgeon. 

    wishing you full recovery from your lymphodeama in the not too distant future.

    Lots of love, Mich xoxoxoxo

  • Gail_Austen's avatar
    Gail_Austen
    Member
    12 years ago

    Dear Mitch,

    The treatment at the Mater wellness centre is amazing.....thats where I have learned all the tricks got all the tools and got the show on the road.....its all about get that part right then you follow through and it works......

    Where thre boobs are concerned they supply for the boobs a very light foam padding made to suit your problem...in other words thefingers of foam are designed to massage the boob under the bra as you walk round al day and it works......it U guess like the effect of a pump when you take you bra off you have some finger marks i call which shows you how it works..it is so simple it not funny ......

    Then of course once a day I always fo my own lumphodaema exeercies on my body takes about ten minutes pretty easy .....to do nothing major just simple process they teahc that there too.......

    Then the latest thing is the ocmpression suit that i wear at the moment once a week when i can...t takes 20 mins or so air fills the suit and it i guess folllows the lynphatice system so that the fluid i moving towards the exit point and thenof course you wee which says goodbye to the fluid.......

    This is not forever its all about gettign it under control....i ooufnd the weight of one boob was really givinh mu shoudler hassles and headaches......

    So I added the Berlie Ultimat sports Bra as well the best they make incredible when you wear one of these it slike wearing nothing and I just wish I ha done of threse all my life as I havebog boobs anyway......

    Hope this helps  I have photos of of all this in action here it is....it is a great feeling the air pressure moves up the arms etc folows the lympatic systen through tot he exit point its works and I feellighter every time i do this and also the swelling goed down

    ..

  • Mich_x's avatar
    Mich_x
    Member
    13 years ago

    Hey Gail

    Certainly sounds like you have been through the wringer you poor luv.  But what a very busy lady.  Some mild exercise definitely does help though.

    I did pick up where you mentioned boob foam.  Can you tell me more about that please as I have breast lymphodeama and need to try all avenues to get rid of it.

    Thanks for your help and wishing you all the best, keep up the exercise and get lots of sleep.

    Lots of love Mich xoxoxox