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  • midnight1327
    midnight1327 Member Posts: 1,331
    edited February 2013

    Chrissy, i did ring the Gp and spoke to the nurse and she spoke to the Doc and he is going to ring Hospital tomorrow and see why i was priortised back to routine and also i asked her about having Rinitidine for the heart burn BD, but they say, i am on the highest dose of Losec. Omezparole and they cannot really increase that with also taking Ranitidine, as i am getting the terrible burning  at night and day, more a less all the time, i got it eating toast this morning and been off all day with it, she suggested i go back and see him, in which i might, and he maybe able to  get them to prioritse it as urgent, he can't do much more than that, i don't think, i mean how far can you go, when you have brick walls stopping you. so did try my best. well going to have a cuppa tea now, hubby brought me some milk, mine had soured abit and did not taste nice.

    get back to  ya's lader, cheers

  • chrissyb
    chrissyb Member Posts: 11,438
    edited February 2013

    Oh Annette I sure hope your GP can get you pushed up the list.......it really sounds like you are so uncomfortable. I hate the heartburn thing when even a glass of water sets it off.......yeah I hear you on that one for sure.



    Keeping my fingers crossed that all thing get sorted soon.



    Love n hugs. Chrissy

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited February 2013

    Hi ladies.......well I met lovely Kate this morning :) We had a nice chat & a cuppa (thanks Kate!). What a lovely lady she is......hopefully we can catch up again!



    Chrissy.....you just take your time settling back into your 'domestic goddess' role....lol

    It always takes a bit of time after a break away.....it's hard work going on holidays!



    Yes Sue, where are you & your holiday pics? Hope you had a fab time.



    And Racy.....I'm with Chrissy, would love some hair & car pics & hope you're enjoying both....:)!



    Mandy.....hope your not stressing too much about your scans (((hugs)))

    Also very curious to hear the results as we're both triple neg & both on Xeloda......although I'm only at the end of my first cycle (day 13 today). Get scans after 3rd cycle..... Thinking of you xx



    Trisha......so glad your photography business is taking off so well for you, you must be doing something right!!



    And Annette, I too hope the GP can get you pushed up the list.....sending hugs.



    I hope everyone else is happy & healthy.

    .

    Take care.



    Karen xx

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited February 2013

    Kylie, how are you going with the new regimen? Can you remind me what you are taking?



    I finally got my report from the lab that says I only end up with 1/2 the amount of working Tamoxifen each day because of being an intermediate metaboliser. Like for you they recommend increasing the dose to 30-40mg/day or changing to an AI. I am not post menopausal so would have to have the shots to suppress my ovaries too...



    Added problem is that my onc is away for 6 weeks and doesn't "believe" in this testing anyway.



    I did talk to my GP last week about my onc and I being a mis-match and he has given me a referral to one closer to home. He is at a private hospital though - did anyone else do private for your onc? How expensive is it really?



    I am on the D-Care Trial and the private hospital I am thinking of transferring to is running the trial too so I would be able to continue on it there.



    Changing means having to ask for copies of EVERYTHING to be transferred to the new centre. The current centre are going to "hate" me...



    Jenn

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited February 2013

    Jenn....i have a private onc, have had since 2010 & it costs very little!

    I get the full cost of the visits rebated fom Medicare but I do pay a small amount for my chemo drugs.

    Hope that helps.



    Karen x

  • racy
    racy Member Posts: 976
    edited February 2013

    Jenn, my onc only charges $98 for half hour and I get at least $60 back through Medicare. He is fantastic ;-).



    Cost does vary according to the onc though; what they choose to charge. But hopefully you will only visit twice a year.

  • racy
    racy Member Posts: 976
    edited February 2013

    Kazzie, I have met Kate and agree she is lovely :-).

  • racy
    racy Member Posts: 976
    edited February 2013

    Kate, when I met you I said I knew you would be great at training. I can't imagine what your boss's problem is but you don't need that stress.



    Chrissy, great to hear from you. If you posted about your holiday in Tassie, I missed it!

  • chrissyb
    chrissyb Member Posts: 11,438
    edited February 2013

    Lol Racy, I was on Kangaroo Island.......both Islands so I guess you were close......lol.



    The holiday was great......well the first few days. The last three was a bit busy as both my sister and her partner belong to the CFS over there and they were both called out about 1am Sunday morning to fight two fires. They were both nasty so they were in and out as they were relieved for rest and then back out to relieve the others. They are both amazing! Sis was a bit upset that she was out doing the fires and left me to look after the home front but I told her not to be silly, I only wish I had the training to be able to lend a hand in the support area. I also told her that there was no reason why I can't return later in the year. We did however, before all the excitement, manage to have a few very late nights with loads of chatter.



    I think she is having a bit of a hard time since mum died and just needed some one close to natter to.



    Well, that was a post that came out of nowhere.....lol.



    Have a great night all!



    Love n hugs. Chrissy

  • Kate60
    Kate60 Member Posts: 523
    edited February 2013

    Back from a big day in Perth. It was a delight to meet Karen - who was exactly as I imagined (funny that everyone I meet from here is) and she was very kind to meet me at the airport. I was running a bit late to meet her and didn't pay much attention to where exactly I'd parked the car. Paul eventually found it, it the opposite direction to where I was "certain" I'd parked it.

    His interview went well. It would be fifo which is good and he'd have an apartment in the city. Guess I could go up there for a visit, save him coming back here sometimes. Will have to wait and see if he gets it.

    Of course if he goes away, then I think I'll give my job away. I'd be wanting a week off every couple of months (to go and see him) and I'm sure the boss wouldn't like that. Oh well it's all down the track. Will have to wait and see.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited February 2013

    Hello everyone

    Kate - your boss sounds like mine!  Everything here has settled down a lot, thank goodness as it was getting really, really bad and I couldn't afford to just up and leave, although that's exactly what I felt like doing.  I went to the CEO and had a discussion with him about how I was being treated, and he was great.  Spoke to my boss's boss who then had a long discussion with me.  Things have been much better since.  At least now I'm being treated with respect.  I'm looking forward to the day when the photography can support me at least part time.  

    Chrissy - the house goes on the market "officially" later this week.  We had a photographer come out yesterday to take the photos.  Yes you read that right, I actually paid another photographer to take photos of my house lol.  I haven't done real estate photography before, and while I know the principles, I just don't have the time to "work it out".  He was there for 45 minutes and did the whole thing and I watched lol.  Then we had a good chat about lenses and flashes and the type of work he does.  It was very interesting :-)  Once it all goes up on the web, I'll put the link up so you can see what we are leaving :-(

    My back is improving a lot.  I still have to be careful, and I'm trying to strengthen it at the gym.  It still catches every now and then, but is much better than it was.

    Oh- and Chrissy - yes Mum, I'm looking after myself and not working too hard lol.  Well I'm working hard, but getting rest and I'm enjoying what I'm doing so it's not a huge burden.

    Trish

    xoxo

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited February 2013

    Hi every one, lol, hubby doing truck run today, another sickie taken off, but anyway he went into a sevice station to get a drink and something to eat and somebody rung him, he has a blue tooth that fits into his ear and he is standing in line waiting  to be served, and the shop assistant completely ignoring him, so he moved to other line and she yells over, to him, you  can come over to this counter, he said, i was, but you were just ignoting me, so i went to other line and she said, OH I thought you were talking to yrself. lol, he said, i have not gone that nutty yet, i was on the phone and i have a blue tooth. i am  not talking to my self, the other customers were cracking up laughing.

    If he did his normal, like he does when at the farm and some people go past and steer like they have never seen a cow b4 and this is adults, he will give them something to steer at and do his looney impersonantion and you see them look away very quickly lol, glad he did not do that, he would be in the  fruitcake lock up for the night. I mean these days, if  you see somebody talking, you have to wonder really if they  have some communication device, but i guess you do  get the accasional nutter who does have a full conversation with them selves.  I do talk to my self and probably answer  my own question and i consider myself sane A few years ago, yea, you might wonder as blue tooths were  not out, and cannot talk on hand hold cell phones while driving. We thought somebody who worked in a sevice station would be up with the technology and young too.,

    Hope everybody is ok today, i feel better than yesterday, i did not have tea last night, felt really crap, just went and bed and slept. hubby got his own, a  cheese sammy i think and came to bed too. he was very tired, the day was very hot and it does wear you out. catch yas later

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited February 2013

    Hi girls



    Kate, glad you arrived safe n sound back in Bunbury! Happy hubby's interview went well also & personally, I reckon you should tell that woman to shove her job!! Lol...

    Easy for me to say though, it's not me getting paid each week. And it was lovely to 'meet' you....:)



    Annette.....I really do hope you're feeling better soon. You sound very run down to me...:(



    Trisha ....forgive me if I've missed something here but where are you moving to once you sell your house? I love that you get so much joy from your photography...



    Chrissy....it's lovely you can be there for your sister (& vice versa I'm sure) when she needs you. It can't be easy to lose your mum & who else but a sister or brother can understand & share stories about your mum? X



    Well, today is day 14 on my Xeloda....so I now get a 7 day break (well 9 actually as I have to have blood tests & see the onc before I start cycle 2). So nearly 1 cycle down, 2 to go before I find if it's working!!



    Hope everyone has a lovely day.



    Take care



    Karen x

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited February 2013

    Karen, we live 45 minutes south of Canberra on 8.5 acres, it's heaven, but a lot of work and travelling to and from work.  When we sell, we'll move back into Canberra and hopefully have enough money to buy something that's not on a postage stamp sized block lol.

    Trish

    xoxo

  • kyliet
    kyliet Member Posts: 587
    edited February 2013

    Trish I am glad you are being treated better at work.

    Kate - I hope things improve at work. Regaining self confidence after treatment is hard enough without that. How lovely that you got to meet Karen.

    Jenn - I am on monthly zoladex implants. 3.6mg Alternate sides of the tummy - given with a local. The nurse at the chemo ward does it but you can get it done by your GP. I was on that for a few weeks before starting on Arimidex. I had my dexa scan today and my bone density is good, so I will keep up the supplements. 

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited February 2013

    Any side effects from the Arimedex Kylie?



    Jenn

  • kyliet
    kyliet Member Posts: 587
    edited February 2013

    Its only been a few weeks Jenn but so far it is all good. A bit achey until I get moving but onc said vit d and calcium with exercise (not doing so well on that bit).  And sticking with the use it or lose it theory to keep the nether regions happy...

    I think Trish had bad SEs from Arimidex and swapped over. Trish what were the bad SEs and when did they kick in?

    I just know I feel so much better physically and cognitively than on Tamox. I really was a 'space cadet' as the kids called it.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited February 2013

    Jenn I had bad SEs with Arimidex and they kicked in pretty much from the get go. I looked and felt like I was a woman in my nineties but being stage IV I persevered but after fifteen months my doc changed me to Femara and within a couple of weeks I was feeling just fine. SEs on this a for me very few and none that can't be allieviated with Vit D, magnesium and gentle exercise.



    Not everyone gets bad SEs and you already know we are all different so you really need to try it to see if its right for you.



    Love n hugs. Chrissy

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited February 2013

    I had pretty bad se's from Arimidex.  They started within a week or so.  Very bad insomnia that couldn't be helped even with sleeping tablets.  My brain suffered pretty badly too - it was like having chemo brain constantly.  Work suffered badly, I couldn't spell properly, got to the stage where I couldn't string two sentences together coherently and really thought I was going to have to give up my job.  I also had severe aches - mainly my knees, I couldn't stand up easily and my knees felt like they were filled with broken glass.

    Then my lower back started playing up - that's when my medical team thought I had bone mets, it was pretty bad and no-one could give me any relief.  Turned out that I'd developed arthritis in my lower back, both feet, ankles, knees, hands, wrists, elbow and right shoulder.  That was all in the 14 months I'd been on Arimidex.  My bone scan at dx didn't show any arthritis.  I was taking all the sups but nothing was really helping.

    I'm now on Aromasin and I feel pretty fantastic.  I have to be careful of my back, if I do too much (like I did last week) then it plays up, but the arthritis won't disappear, so I have learned to live with it.  That being said, most of the time my back is pretty good, I go to a chiro every 4 weeks (been going to him for at least 15 years now for a bad neck after a couple of car accidents) and he keeps it in line which helps.

    I didn't realise how bad I was on Arimidex until switching to Aromasin.  It was like a veil had lifted from my life.

    Not everyone gets these se's on Arimidex.  Some women have really bad se's on Aromasin and switch to Arimidex and are fine.

    It depends on how your body copes with it.

    For me, Aromasin makes me tired, it was fairly bad for the first few weeks, but eased.  I'm still tired, but I sleep very well almost all the time now, and know how to pace myself.  My skin is beginning to resemble a 90 year old woman's and my memory is not great (although much, much better than on Arimidex), so I pour moisteriser into my skin and hope my brain doesn't get too bad lol.  Actually my memory isn't really any worse than my best friend's who is just 11 months younger than me, so that's probably just an age thing.

    My advice to anyone starting on an AI - see how it goes, and if you get bad se's from it, try another one there are at least three that I know of, so if one is bad, another one may be made just for you.

    Trish

    xoxo

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited February 2013

    Morning girls, it's gonna be another hot one, we need rain. its is so dry now. Anyway nurse rang me this morning , and told me that my gp rung up the hospital and had a heated discussion with the person took me off the urgent list, they said, they considered it not to be urgent, and he  said,  what he said, and  that he wanted me to be seen asap, or it will be negilence on their part if i was to get any worse and they can deal with the consequences, and he would believe that hubby could kick arse. I told him,  hubby came with me not to check on  doc, but to be  more listening ears, she said, i know, but it does not hurt them to know that he will be on there cases. i said it all needs to be sorted, she said, it does, very soon. so hopefully it does after that.

    well  i better get going. and do some work, lazy old tart i am lol

  • chrissyb
    chrissyb Member Posts: 11,438
    edited February 2013

    Woohoo Annette! Your GP sounds like a real go getter! Love the fact that she? Rang and blasted the hospital and giggled over the bit about your hubby kicking ass........lol. Any way, I've got my fingers crossed that it was effective and your appointment is made very soon.



    Well I'm off to hydro in about ten minutes so better get my butt into gear and get moving. At least the weather has cooled and I woke up this morning to the sound of gentle rain on my roof..........oh did that sound good! Hopefully the temp will stay down for a while but I'm not holding my breath.......lol.



    Have a great day all!



    Love n hugs. Chrissy

  • Linda1966
    Linda1966 Member Posts: 441
    edited February 2013

    Jenn I had the zoladex and arimidex starting shortly after the last chemo and recovery. Never needed a local for the zoladex but in my opinion it intensified the side effects from arimidex, mainly aching creaky bones. Zoladex was stopped once they were certain I was post menopausal (yippee) The aches did gradually ease off but if you go back in time on this forum you will see me complaining about it till I went to the naturopath and changed calcium (talked about in previous posts so wont go into detail.). Im 4 years out and still NED and feel my own age now so Im glad I went on arimidex and would be happy to stay on it for the rest of my life if it had any benefit to do so.

    If you start on arimidex and suffer pain or any other side effect, you can try some pharmacy or natural remedies ad if they dont work, theres other alternatives out there like Aromosin. You wont know till you try stuff how you will react. One thing, as you already know my hair grew back thick and healthy and without dramas on arimidex, no weight gain, and best of all no sign of returning cancer. I do have to watch bone density as Im osteopenia so perhaps your bone density may impact your decision. Id certainly check on that before starting.

  • Kate60
    Kate60 Member Posts: 523
    edited February 2013

    Hi everyone. Trisha, so damn sorry about Gus. This must be breaking your heart to watch his decline. Big hugs to you (and you know I really really know how you are feeling being a huge dog lover myself). Is your house on the market now? any prospects?

    Update on Sarah and Neil. I think their days are numbered. He had an accident in our 2nd car that we were lending them, that wasn't the upsetting bit, what upset us as well as Sarah was that he wouldn't face us and tell us about it, got Sarah too and she wasn't even there. Paul was away and needed to know the specifics and to get Neil to lodge a claim with our insurance with all the details, after a week of not putting the claim in and Paul calling him, he wouldn't answer Pauls calls for two days so Paul got the ****s big time, and when Neil finally did call him, Paul used quite a few expletives to get him moving to lodge the claim. Sarah was embarrassed and really put in the middle of this by Neil, when he should have just manned up and dealt with it like a 27 year old. He has lodged the claim now so we are just waiting. He will pay the excess. He really just made the situation worse than it needed to be. We've all had accidents and never mean too, so we understood that bit.What we couldn't understand or condone was his shirking his responsibilty to us, getting Sarah to deal with it when all she could do was relay very sketchy information and by his not doing whatever possible to act on fixing the situation. I think this episode has shown a side to Neil that has upset and surprised us all, and Sarah is at rockbottom over it's implications for her future.

    Have a great day everyone xx

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited February 2013

    Trish, has Gus got worse? Poor baby,  i really hope  you get to take him to new place.

    I got my appointment for the colonoscopy, i am really hoping that the gastroscopy comes first, as i think its my main worry, i was walkin along the road yesterday and i felt like i was  carrying a load. i know i am weighty, but i  am not huge, just a little heavy for what i should be and i felt like i carrying something extra and it was not easy inhailing while i am breathing and walking and hubby still insists on my tummy being firm under my breast bone, he is very concerned about this. i felt this heavy fullness as i was walking, and i feel that the endoscopy down the throat will tell them more than colonoscopy, but i don't how far they can see with colonoscopy, they may have a good idea from that as something is not right, i am hoping that they will do the gastroscopy first  as the other one is not til the 23 April and i am not looking foward to that. i have had the gastroscopy one b4 which was a breeze, til i got in the car and threw up everywhere, poor mum at the time. i will take bags this time or a bowl and a face cloth incase of same scenerio. Must of been that drug they  give you.

    Gosh there was a shark attack the other day at muirwai beach in auckland. Jenn you probably remember that beach, west Auckland, Racy you may too, it was a 12  ft to 14 ft sob and it was a G White and another one came in too and had a go, he was a tv director, for adds, commercial) 46 years old.

    They have closed all the beaches a long that area. My mum remembers that beach as she got into trouble, her and my uncle got swept out, very strong rips, (they  got saved obviously, lol i am here),it was  a long time ago, she remembers like it was yesterday, she thought it was all over. Mum was a very strong swimmer too, uncle gary was not and that was not helping as he kept dragging her down. I don't know if they had  the flag  thing they have  these days, or the  life savers in those days, but somebody got em.

  • Angela-R
    Angela-R Member Posts: 109
    edited February 2013

    Hi ladies



    I feel guilty that I don't chat with you often but am coming to you all now that I need a little encouragement. But I guess that's what we try to do for each other.



    My regular scans, CT and Bone are all clear. The nodes they were tracking are no longer visible. Celebration right? Abraxane is doing its job. Wonderful news, but...



    I have had vertigo and loss of balance for 2 weeks and my onc has set me up for a brain ct in a few hours time. I had steroid withdrawal so put it down to that but it's gone on too long. I have no headaches or nausea, no signs of a head cold, but have had a husky voice for a while so maybe there is an underlying infection there. I'm hoping inner ear and easily fixable. A bit scared.



    So I want to celebrate, and will if all is ok, but am a bit scared, so other than my husband, you ladies are who I want to share this with. A problem shared is a problem halved, right?

    I feel better already. Hey, I think my left ear hurts.



    Will get back to you as soon as I know more.



    Cheers all



    Angela

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited February 2013

    Angela


    Thinking of you honey, and sending lots of ((((hugs))))) and love and support.


    Trish

    xoxox

  • chrissyb
    chrissyb Member Posts: 11,438
    edited February 2013

    Angela I've had the same sort of thing a couple of times and my doc always does the scans just to make sure. It usually turns out to be another condition to do with the way the little Scilla in the inner ear are working. What he does is gets me to lay on the examination bed with my head hanging over the end then he helps me sit up very quickly. After doing this a couple of times the dizziness and nausea, over the next couple of days just goes away.



    Sure hoping that what you are feeling is just this sort of thing and not the dreaded.



    Love n (((((((hugs))))))). Chrissy

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited February 2013

    Angela,  vertigo is a terrible feeling, i  get when  get  meneires attacks, makes you feel so bad. i do hope  you get over it soon. thinking of you.  love and hugs xx00

  • kyliet
    kyliet Member Posts: 587
    edited February 2013

    Angela, that is what this site is fantastic for, support and also being able to say how we really feel.

    Fingers crossed for good results today, and yay for your other good news. x

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited February 2013

    (((Angela)))



    Hoping & praying for you that it isn't what you're dreading.....please let us know xxx

    I have fingers, toes & everything possible crossed for you.....



    Fab news that the Abraxene has done its job on bones, liver etc......makes me think if the chemo is working the brain scan will be good news!!



    Lots of luv n hugs



    Karen xxxxxxxxxxx

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