Australian Sisters
Comments
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Trisha, Im about 1.5yrs into Arimidex and showed a small amount of bone loss from a scan about a yr ago. Here, they say theres no point in BD scans closer than 2 years so I dont know how Im doing. Not often we hear of a "good double whammy" but this drug appears to do two good things. Indeed hopefully we will see it sooner rather than later but it would be interesting to see how people are getting on so far, who might be taking it.
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Yes Musical - Arimidex is pretty horrible on the bones. I developed arthritis in my lower back and most joints from it. I switched to Aromasin, and the difference is amazing. Hardly any se's at all, and best of all a lot of my bone pain has gone (not all, but enough for me to notice).
Nice to see you on here :-)
Trishxoxo
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Thx Trish, :-)
Yes I really had dreadful joint pain from A about 4mths in, which seemed to be generally when other people start getting issues too. After toughing it out for a while, I spoke to my GP because I was having issues with peripheral neuropathy getting worse as well. He was happy to change me and i think it was to Femara (NZ funds 2 of the 3 AI's) and he put me on Neurontin for the PN, saying it also may help with Arim SE. I toughed it out some more to give things a chance, and it has got better as in less frequent. Its really interesting that some have said by switching they get relief and other's get worse. Others say they are all basically made of the same compounds so it really makes you wonder. Obviously theres a difference because your account verifies that.
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Musical, I just checked and NZ fully funds all the AIs, get your doc to check. Have a look yourself p160 http://www.pharmac.govt.nz/2013/06/01/Schedule.pdf. I was on Letrozole -Femara and had really bad joint bone pain which unfortunately hasn't gone away; I am sure it flared my RA. I developed PN with chemo which also hasn't got any better, I think I just have to live with it. So was never really sure if it was the AI or the RA that was the problem.
Must breally do something constructive but have visitors who have to be transported around.
Big hugs to all
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Welcome in from lurkdom stressmagnet :-)
I'm crazy stressed with studying and our middle daughter (with special needs) is putting out very challenging behaviours. She was asked to leave her workplace this morning because she refused to remove her flammable cardigan in the work preparation area. Just as well I was up at a meeting with her job experience supervisor yesterday saying that we felt she wasn't ready to get a job and lose her training funding...
Dropped the in-laws at the airport very early this morning. Managed to make it through the week with them by being very tired each night, or needing to do some study, and disappearing off to our master bedroom by 8pm each night ;-) I'm assuming my MIL has re-packed that "lovely" pink ribbon covered, naked, body-painted women with breast cancer calendar that she tried to give me to hang in our house. Hoping I dont find it still in my house somewhere. Ah well, it's a short trip to the bin!
Jenn0 -
Well Thanks Alyson for that. Things must have changed here. Going from memory Im pretty sure was told last year there was only 2 funded but couldn't remember the other one. Sorry your PN hasn't improved any. Mine was pre BC. I used to take amitriptyline which helped quite a lot but SE caused too many issues and stopped it.
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what is RA girls, is that the same as LE. Musical, lovely to see you in here,
Jenn, lol i hope she has taken that ribbon covered thing she was trying to palm off on to you. yes children with special needs and i think you said, she was DS, can present behaviours that are hard to deal with. you have alot to deal with girl, don'r know how you manage it with all your time schedule re study etc. take care and be kind to jenn. big hugs. well i had better get off my chuff and do something and will catch you later. take care all XXXX
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Welcome Musical......
And welcome Stressmagnet....I also have triple negative mets, in bones & liver & I too am on Xeloda. What sort of result are you getting from it? My first scan showed progression & second showed slight shrinkage in one on of my liver mets...:) I'm on my week off & start round 7 on Friday. I did notice in your signature that you had Herceptin which confused me slightly as it is for HER2+ cancers......I would be interested to hear the reasoning behind this & what sort of result you got from it.
Good to say goodbye to the in laws I'm sure Jenn & I do hope that nasty calendar doesn't show up anywhere...:) I hope the challenging times you are having with your daughter are managed sooner rather than later.
Well, finally Trish......a new kitchen very soon! What did you end up getting? Look forward to some pics once it's done.
Alison (((hugs)))... I hope you're starting to feel better & yes thank goodness for modern technology & Skype etc....take care.
Not much happening in my life.....feeling a bit better but still a bit down! Just have to go with it & I know it'll get better.
Take care lovely ladies.
(((Hugs))).... Karen xxxx0 -
Sorry Midnight. RA is rheumatoid arthritis.
We have had thunder so far and some heavy rain but we are not expected to get the cold weather that is coming up from the South.
Have to take, sister, brother and sister inlaw up the road.
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Hi Musical and Stressmagnet, nice to see you both.
Yay Trish! Can't wait to see your new kitchen! I'm excited for you! I hear you on the cold thing......lol. When I left DDs house this morning for my appointment with my naturopath it was a pea super here as well but I think it was more a sea fog than normal fog as the further away from the sea I got the clearer it got. When I got up at home yesterday there was a 1/2 inch layer of ice all over my car.........what we call a bit chilly.......lol.......cool enough for me to be lighting the fire mid afternoon to the happiness of my dog and cat.......there is a fight as to who is going to get the prize position right in front.
I picked up the rest of the frames for the dream catchers so its now full steam ahead to finish those. This afternoon we have an appointment with the dress maker for first fittings of The Dress so should be interesting and then off home I go. Should get back about 7pm so not too late. I know I will sleep very well for sure.
I went browsing in the stores trying to kill a little time before meeting a friend for lunch, and I was looking at a kindle. I thought really hard about it and decided that I wouldn't bother as I would be updating my phone n a few months so. Would wait and get one of the new Samsung ones as the screen is much bigger so t will be easier to read than the iPhone. I so proud of myself.......lol......I used to just buy and then think now I've got it the right way around........lol.
Well my friend has arrived for lunch so I'll catch up again later.
Love n hugs girls. Chrissy0 -
Midnight I already know from NZ forum, ... thanks Kazzie and Chrissy for your welcome.
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Chrissy, you don't need a kindle, you have an iPad (don't you?)
I do all my reading on the iPad, just go to Amazon and download from the kindle store to your iPad. It's not hard to set up, I can't remember how I did it now, but it was easy. Then you get the book within seconds, downloaded straight to your iPad. You can get magazines too, although I get those from a different place, into my newsstand folder.
I know have the new Samsung Galaxy S4 it's great, but I still like to read on the iPad.
Jenn your mil sounds horrible, I would have been escaping from her too lol
Karen, I ended up getting the kitchen I wanted, with the timber bench tops, lots more money, but worth it. Will certainly put pics up once it's installed :-)
Trish
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Trish. did you have other dogs, besides that other darling one, sorry i can't remember his name, i had him on my screen saver for awhile, was just wondering how they settled into new house and property. yr new kitchen will look gorgeous.
thursday and fri we are supposed to have temps of 11 for thursday and 7 all day friday, ewwwwwwwwwwww, cold and yukky and raining., i will get some more hay into my rabbits hutches, feed them up, my poor babies, the cold is not good for them. My little yogi, is so gorgeous, he is white and bluey grey patches and looks like has a mo, a cross his white face, its just under his nose, he was a birthday present from hubby last year. so cute. Anyway better go and get tea. scrambled egg for me. hubby is having soup, sort of left overs, pizza from last night, he likes it cold, not me, i love scrambled egg on toast. Good night lovely ladies.
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Annette
It was Gus that we had to have put to sleep, how lovely that you had him as your screen saver :-) we still have Beau (who looks like Lassie) he's doing fine. Settled in really well, he's not anxious any more, he seems to understand this is his new home, and I think as long as we're with him he's happy.
Trish
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Ladies
Check out the Sydney Get Together thread. I've done some reasearch on room rates and have found a pretty cheap appartment hotel. Please reply there if you would like to join in and if you need accomm or not.
Trishxoxo
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Oh Trish, a new kitchen, how exciting. How are you liking being back in Canberra? I bet you are loving not having to travel far each day.
Speaking of Gus, I had my mums little dog Zippy put down a couple of weeks ago. She was 16. We 'inherited' her when mum died 7 years ago, but I was the one who bought her for mum when she was only 8 weeks old. We got her from the RSPCA. She had a deformed jaw due to her owners trying to bash her to death with a broom. Her little brothers and sisters were killed. I thought when Mum died that she didn't have long herself to live as she was very arthritic due to lack of excersize, but living with our other dogs and being taken for lots of walks with them, she reversed in age. It was really in the last year or so that she really slowed down. Became blind and deaf but managed that just fine, however she became incontinent and I couldn't keep up with all the wee's everywhere. The house smelt dreadful. It was sad to say goodbye to her. She was put to sleep in my arms. But I knew in my heart that her time here on earth was over and I was just so happy that she had really had a terrific life and had been very loved. The vets sent a lovely condolence card with the Rainbow Bridge poem included.
I can't fathom how I lived in Canberra for 20 years with those low temperatures. I must be acclimatised the WA now, as it was only 6 degrees here the other morning and I thought that was just so cold.
Have a great day everyone.
xxxx
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Hello Kate!
Actually loving being back in Canberra. We thought we'd miss the old place a lot, but so far haven't really missed it much at all. I am noticing the difference in travel though, not the time so much (although it's nice to be home just 20 mins after leaving work) but the petrol savings have been pretty amazing. I put petrol in the car 15 days ago and only refilled this morning. That's 15 days on $70! Before in 15 days I would have put at least $200 worth of petrol in the car, and that was the cheaper ethonol fuel that I'm not allowed to use in the new car lol. And that's just me - Bob is saving almost as much.
So - we should be able to save some money lol. Although what we are saving in petrol is probably going on the heating costs instead. That was free at the old house (wood fire and plenty of wood on the block) but now we have this little button that you press for instant heat, and sometimes it's on when it probably doesn't need to be lol.
Friday morning is expected to be minus 5 lol - I think the heating will be on all night :-)
It is so sad when we put our pets to sleep isn't it. Zippy sounded like she had a great life with you. We know intellectually that it's the right thing to do, so they don't have to suffer etc etc, but it's still so hard to do. xoxox
Trish
xoxo
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Hi Musical and Stressmagnet, thanks for joining us.
Chrissy, Trish is spot on about the ipad. I have a kindle and I just love it as far as reading on but it is hard to move around the book and backtrack. You can bookmark but I always like to flick back if I miss something and it's a pain. If you download recipe books on the kindle you get rotten pictures and no colour and they are really hard to browse through. My DDs Samsung pad is so much better. The biggest problem with electronic readers is you can't use them in the bath!
Trish that is a huge fuel saving. I have found the same thing moving here - about $50 a fortnight instead of about $150 a week in fuel. Yay for ordering your kitchen, are you getting new appliances also?
Jenn, I hope things are settling down with your daughter. Do you get a half term break from work?
Alyson, I hope your bones aren't giving you too much grief in this weather.
Hugs to everyone x
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Hi goils! Yup, I hear you on the ipad and iphone for reading, that's exactly what I have been doing..........I was just being me and wanting something new......lol......I didn't really need it.
The one good thing about low temps at night is a cosy warm bed and the next day is usually beautiful winter sunshine........not much warmth to it but lovely none the less.
The time is getting closer for me to be making that final decision for my old cat........she is twenty and has a cancer on her nose, she also has altzheimers. Thankfully she never wanders far from her electric bed on these cold days and so far, no messes inside........she still manages to go out.
Oh my, that visit to the dressmaker really bought everything into focus regarding the wedding. The dresses are going to be amazing! I did however one again get the job of crocheting the train for her as she could not find anything else that would give the right look.......oh boy! are my hands going to be busy, busy, busy!!! As there is no pattern I'll be making one up as I go.......now that should keep my mind occupied as well......lol.
I'll go check out the Sydney thread. Take care all!
Love n hugs. Chrissy
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Winter has hit here. Really cold in the south and lots of snow expected.
Have spoken to the family in Canada which is good, well not my Bea as she was asleep. Sam gave me a kiss- he kissed the screen. He was still up at midnight- his time clock hasn't sorted itself out as yet.
Must get on with my knitting now they have gone and have more time but have lots of other things to do.
Big hugs
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Has anybody heard from Linda? I hope she is going ok.
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No, I haven't heard from her for ages. I know she was really busy with her shop so maybe she's doing just fine and getting on with her life.
Love n hugs. Chrissy
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Hi kyliet, nice to pop in.
As Alyson says winters here by the looks. Temps dropping a bit where I am in lower North Island but supposed to be hitting here late tomorrow. I'll be hunkering down and getting the fire stoked up tomorrow for sure.
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Linda put up a status update for her shop on Facebook this evening so she's definitely still around. Probably just busy...
Jenn0 -
I went to my free reflexology session at my new cancer centre today. It's the second one I've been to. Trying to book them every couple of months when I have a day off work.
Anyway, my appt was at 10am and when I arrived I discovered that they had their young women's support group happening at 11am with a guest speaker - one of the lymphedema physios from the centre. So I stayed and it was so interesting.
Seems that every woman who gets treated at this centre gets an initial measurement assessment by the physios. That's something that does not happen at my old centre, so I will organise an appt with these physios soon.
She gave a lot of good advice about exercise for prevention and control. Talked about available treatments which was interesting. And talked about prevention measures you can take. Latest news is that you don't have to panic about flying, and they now don't recommend compression sleeves as a preventative as it has been realised that they can actually cause LE in someone who doesn't already have it!
I recognised a couple of women that I met at the Moving Forward after Cancer session I went to earlier this year. It was nice to chat...
Jenn0 -
Hi all
The site that I go on in Perth has it's own Breast Cancer Nurse and she asked if you would mind if she came on here ? She doesn't just talk medical issues but I'm sure that she could learn a lot from you all.
Jenn before and after my surgery I had my arms measured and I think they do it for a few years.
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Aussie I don't have a problem with her coming on here.......all extra knowledge is welcome.
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Hello all
Aussie, I think it'd be great if she came on here, we can all use extra advice, and it's always nice to meet new people :-)
Musical - I saw our weather was heading your way - it's supposed to be minus 5 here tomorrow, and possibly Saturday too. Yes time to get the wood fire stoked up and hunker down lol
Chrissy - where on earth do you get all your energy from girl?? You exhaust me!
Jenn - the new centre sounds awesome! They should all be like that.
Well should go do some work I suppose :-(
Trishxoxo
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Hmmm. My initial reaction to having a nurse on here was "no problem".
Then I wondered whether it would really be "no problem" if it had been one of the nurses from my old centre, or even one from my new centre? I think if it was my nurse I would feel like I couldn't share frustrations.
I know anyone can read here, so the reality is that any of my medical team could be reading what I write. But, I wouldn't want to have to debate with my medical team here.
Having said that, there is no limitation on who can sign up here, although it is set up as a peer to peer support forum not a forum guided by professionals and there are guidelines on privacy and sharing messages outside of this forum. Here are the rules: http://community.breastcancer.org/help/rules
As you all know, I was disappointed in the "support" offered to me by the Breast Care Nurses at my previous centre. One of them just pats everyone on the shoulder and repeats "We do things well here!". Um, no. They didn't do things (like support) well...
Jenn0 -
"Latest news is that you don't have to panic about flying, and they now don't recommend compression sleeves as a preventative as it has been realised that they can actually cause LE in someone who doesn't already have it!"
Hi Jennt, ... Unless there is late breaking news and stepupspeakout hasnt changed their website yet .... Not so. SUSO is strongly supported from our own BC LE forum here and some ladies from here have articles on the site. Im not sure what your source is for "latest news" is but please read these following excerpts and Ive supplied links.
EXCERPT QUOTES
Wear your garments for air travel, and for an hour or two after you land while your arm recovers from the pressure changes. (Please click here to learn more about controversial studies done on wearing compression garments while flying.)
If you choose to travel without wearing compression garments, take a well-fitted sleeve and glove with you in your carry-on luggage in case you develop heaviness or swelling. (Please click here to learn more about controversial studies done on wearing compression garments while flying.)
"If you have lymphedema, there’s no controversy: you should fly with compression—ideally wrapped, or at the very least, with a glove and sleeve. "
The first sentence in the news release says, "Women who've had breast cancer surgery need not worry that pressure changes in an airplane cabin will bring on lymphedema, researchers found." But that's very different from what the researchers concluded in their abstract. Here's what the abstract said: "For the majority of women who undertake moderate to vigorous upper limb exercise, airplane travel did not have a significant impact on extracellular fluid ratio."
Those two statements mean very different things. The discrepancies in representation of the results of this study are troubling, and should be clarified for the benefit of all women who have been treated for breast cancer and are facing the risk of lymphedema.http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
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