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  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited May 2011

    Thanks guys.  Will order some melatonin from Sheila's site suggestion and see how I go.

    I don't normally have any beverages after dinner except for one cup of tea - and water.  I don't drink much coffee, I'm a tea drinker, however before BC I could drink a cup of tea right before bed and go straight to sleep, it doesn't seem to bother my body too much - unlike coffee lol.

    I'm going in for an ultrasound today of my other breast - just to make sure the ILC hasn't come back there.  Not that I have any "feeling" or otherwise that it has come back, but I've become a bit obsessive about my right breast now.  My GP agreed that I should have the breast checked more regularly than once per year.

    So now I'm worried that they'll find something in that breast.  It's something that will never go away I think - this worry I mean.  I'm sure you all feel it too - so I'm not just being a worry wart - am I?? :-)

    Trish

    xoxo

  • chrissyb
    chrissyb Member Posts: 11,438
    edited May 2011

    Trish, I don't think you are being a worry wart!  IMO, once you get the original Dx and even though you are pronounced clear at the end of treatment, there is always in the back of your mind, the thought of it coming back somewhere.  That is something I think we all learn to live with but the thought is never very far away.  Goodluck with the US, let's know the result please.

    Love n hugs.  Chrissy

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2011

    We all know what happened when I went back for a check up a year later - bummer. Trish, I'm sure you'll be fine - it would be extremely unlikely for you to have a new cancer. My case was unusual in that it was there the year before and they missed it. My onc was VERY confident that there wouldn't be something new especially while on herceptin.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited May 2011

    Thanks guys.

    I can't believe how jumpy and depressed I was yesterday.  Feeling much better today :-)

    Had the US and a mammogram as well - all clear!  The radiologist, who was the same one that did the fateful one last year and found the two cancers has recommended I have an MRI as well.  He had suggested that last year ago, but my BS didn't think it was warranted, but now I'm without a BS, I'll go with the advice of the radiologist.  He made me feel a bit better about myself, in that he kept telling me I was too "young" to have ILC lol - I told him I was 53 and that seemed to be the prime age to get BC.  He said yes - but apparently ILC usually appeared in women over 60. 

    So although I still feel like I'm in my 70's at the moment, as far as some of the medical fraternity is concerned I'm young! :-)

    Thanks for caring girls

    Trish

    xoxo

    Edited to fix my grammar!!

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2011

    Hi Trish - good news!!! The MRI will cost you about $600 no refunds. I only had one because they found the second cancer on mammo but couldn't find it on ultrasound. After the MRI, they were better able to biopsy it. The first bs should have ordered an MRI when the lobular was found, but then I'd have no boobs. Any woman diagnosed with lobular should have an MRI. The average age for dx of lobular is 57 - the age I was at the time. So you are young :)

    Sue

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited May 2011

    Hi Sue

    Even better news - the MRI at the Canberra Hospital is only $450 :-)  I know there are no refunds, it's not covered by medicare (how silly is that!?) but I can claim it on my tax, can't I?

    If the MRI were done at a private imaging centre it would be $1000!!


    Trish

    xoxo

  • luv_gardening
    luv_gardening Member Posts: 362
    edited May 2011

    The MRI I had at a private imaging centre at RPAH in Sydney cost $300 in July 09.  I asked for it as I felt the surgeon was operating blind otherwise as the mammo and US came back clear.  

    Also it gave me peace of mind knowing there was probably only the one tumour and knowing exactly where it was. I was going to use it to see if I should have a bi-lateral or uni, but before I had it I had decided on the bi to get it over with and not have them sending me for useless mammo's every year.  

  • chrissyb
    chrissyb Member Posts: 11,438
    edited May 2011

    Congrats Trish!  Great news on the clear mammo and US.  I've never had an MRI only CT for the BC but there again I didn't have ILC but IDC anf the tumors were very visible on both mammo and US.  The CT was done at the beginning to make sure there was no other spread.......which there wasn't but it did later.   Any way,  hope it all shows clear, clear, clear for you Trish and.........we're all as young as we feel or not!....hahahahaha!

    Love n hugs.  Chrissy

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2011

    Hi Girls - yes Trish you can claim it on your tax if your net out of pocket medical is over $2,000 for the year. My DH said a friend of his thought they'd scrapped it in the budget - I'll see if I can find out what the situation is.

  • jane59
    jane59 Member Posts: 15
    edited May 2011

    Hi Trisha-Anne I was dx with ILC at 49.  I don't really worry too much about recurrence these days. For the 6months I was seeing my bs, onc & rads onc every 3 months, then 6months .Don't see bs anymore and was alternating every 6 months between onc & rads onc. Now going yearly to rads onc but still every 6 months to onc.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited May 2011

    Hi all

    Jane - well you were certainly younger than me at dx!  I'm going to follow your thinking and not worry about recurrence - otherwise I'll spend the rest of my life worrying, and I don't want to do that lol

    I've had a lovely 4 day weekend with my oldest and dearest friend who lives a 3.5 hour drive from me.  We've been best friends for 40 years now, and spending the time with her has lifted me out of my depression and fog.  Best medicine I've had for ages.  She has been with me through everything, but being a long drive away means we don't get together every day, and she's been more traumatised by that than me :-)  

    I'm back at work now and doing a Project Management Course that work is paying for - and it's also interesting.  So - I think I'm now on the road to getting my life back to normal.  Well - normal execpt for the dodgy knee lol

    I thought the out of pocket medical for tax was lower than $2k - but it's been a while since I was in that situation - so will try to check it out soon too - no time at the moment.  I hope that they haven't scrapped it!!  I'm counting on getting something back to go back on the credit cards!! lol

    Hope you are all doing well!

    Trish

    xoxo

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2011

    Hi Trish - it's 1,500 not 2,000 - don't know where I got that from. The 1,500 out of pocket is applicable to the 09-10 fin year. Not sure what it is for 10-11. You can claim 20% of the amount over 1500.

    I did a 2 day course last week. I've been looking for another one to do.

    Sue

  • chrissyb
    chrissyb Member Posts: 11,438
    edited May 2011

    Hi girls!  Just popping in the door to see what's been going on in your world.............not a lot by the looks of it.....lol. 

    Trish, just spoke to my SIL this afternoon to see how she was faring with the cold weather over there..... they moved over there three weeks ago...I think, or was it four?........anyway, they moved there recently.  She told me thank goodness for heaters!!!!  How have you been doing and how is work going for you?

    Sue, how life in your neck of the woods?.....anything interesting happening?

    Jane, nice to hear that you are moving further down the proverbial raod.

    Joylieswithin, hope you're travelling well.

    I'm having a few issues but hopefully we'll get some answers in the next few weeks.  I had an appt. at the LE Clinic and was finally measured for a sleeve and gauntlet................the one I tried on made such a difference is such a short time that I wanted one there and then!   Unfortunately, they didn't have the full set so I havr to wait until I go back to the city in a couple of weeks.   Seems strange to be excited about something like a sleeve and gauntlet but I am....Yahooo!

    Love n hugs.  Chrissy 

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2011

    Hi Chrissy - I did 3 full days at work this week and was really tired, but I'm going to keep it up for the coming week. I'll do 4 days the week after next for a couple of weeks, then will go full time. Had another hair cut this week - still trying to cut those curls off. It is improving after each cut. It's so good to look in the mirror and see so much hair - it's just as thick as it was.

    I'm glad you're excited about your sleeve.

    Sue

  • chrissyb
    chrissyb Member Posts: 11,438
    edited May 2011

    Sue, I lol'd when I read about you trying to get rid of the curls coz all my life I've been trying to get them!  You know, perms and rollers etc.....lol.   Glad you are slowly easing your way back to full time work and hetting back to the 'usual' side of life.

    I had one of those nights last night where I just did not sleep at all.  They don't happen all that often but they still do happenFrown.   I've run out of my Melatonin and I ordered some from Biovea but they must have been out of stock as the other thing I oredered at the same time has come but not that........I sure hope it turns up soon.  Yes, a little crazy being excited about a sleeve, but my arm felt so good even after such a short time, I was amazed!

    Love n hugs.  Chrissy

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2011

    Hi Chrissy,

    Is your melatonin the real one from the US?  I checked out the web site and it looks like the real one, but how can they send it from their warehouse here if it's not approved. I've been geting the homeopathic one here and wonder if it really does anything. I was going to order some from IHerb in the US because one of the other Aussie ladies on here gets it from them.

    We went for a bike ride ysterday - ouch - my legs didn't like it. However, I did try out my bike pants and the padded seat area did help a lot.

    I'm glad you like the sleeve - it's great it makes your arm feel good.

    Sue

  • chrissyb
    chrissyb Member Posts: 11,438
    edited May 2011

    Sue, I've been getting the Melatonin on script from my doctor but at $33.70 per month on a disability pension (it's full price as it's natural) it's getting rather expensive so I though I'd try the one from Biovea and see what happened.  I think it is approved for practitioners but not over the counter.  I tried getting something (can't remember now what it was CRS) but it got confiscated by customs and it cost me $60 so I haven't bothered since then as I really can't afford to loose money like that.

    Good on you for getting on that bike!  I think if I tried, I'd need a complete, full cushion that has been stuffed to the gunalls with everything soft!   Doubt I could do it with just a little padding so cudos!

    Love n hugs.  Chrissy

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2011

    Thanks Chrissy - I might try ordering some from Bioeva too - it looks like the one available from the states. Can't believe you got it confiscated by customs, Sheila says she gets it from IHerb and you can import 3 months supply for personal use - she even quoted the government regs on it. How much did you order?

     Sue

  • chrissyb
    chrissyb Member Posts: 11,438
    edited May 2011

    Sue I ordered only a months worth as I wanted to try it first but there were a couple of things in the parcel that were plant based, even though it has been processed, it was still confiscated.  The reason given?.....yeah you got it.............plant based!  I couldn't believe it and rather than risk having that happen again I just decided to check out the Australian sites.

    Chrissy

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2011

    Well, I might order some from Bioeva - it will be interesting to see if it's the real one as opposed to the homeopathic one available in the chemist. I don't particularly want to get a script for it seeing I'm paying for Arimidex every month too. In NZ they have Cherry Vite - apparently cherries are high in melatonin. Next time I go over, I'll get some - might be a while though.

    Sue

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited May 2011

    Hey Chrissy - I ordered some. Lets hope it arrives. Thanks for the Bioeva website!!!

    Sue

  • chrissyb
    chrissyb Member Posts: 11,438
    edited May 2011

    You're welcome!

    Chrissy

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited May 2011

    Hello everyone

    Sorry - haven't been on here enough lately - just too busy lol, mainly work.

    Congrats Sue on working up to full time - how's the 4 days a week going at the moment?  

    I've been doing full time since around the middle of March.  Work was happy for me to do part time for a bit longer, but I enjoy coming in here, and my team is a dream.  Only one mad woman here who has been causing me some grief, but she's now working only 3 days a week here and 2 at home now, so I'm glad to be seeing less of her :-)

    I was handling work ok - but getting nothing done at home (well very little anyway), now feel like I'm back in the swing of things.  I pulled out all the dahlias and sweet peas and weeded that whole bed on the weekend.  Looks good now, and I had surprisingly few aches and pains from it. 

    We had a European Wasp nest in a garden at the back of the house, and as it's so cold here, I took the opportunity (on advice from an exterminator) and dusted them into extinction! lol

    Yes Chrissy - it's been bloody freezing here.  This week not quite so bad, but May has been the coldest I've know here (been here for 17 years).

    My hair is coming back fast now - I have about 1/2 inch, only problem is it's half gray and I desperately want to colour it.  I'm going to try to find a natural hair dye and see how it turns out.

    I also have eyelashes and eyebrows!!!  I think I'm more excited about that than the hair lol

    Sleep is still a problem - I keep forgetting to order the melatonin.  The onc gave me sleeping tablets - but guess what!? They don't work lol

    Sorry to hear that you are having issues Chrissy - but glad you've found a solution for your arm.  How long till your sleeve arrives?

    For me at the moment - life is good.  Going in for a herceptin treatment this afternoon - that's a no brainer now - easy as.  Tomorrow having a bone density scan.  My fingernails are thinning quite dramatically - hopefully my bones aren't lol

    Hugs to all

    Trish

    xoxo

  • Amy80
    Amy80 Member Posts: 6
    edited June 2011

    Hi girls, I'm just new to this site and the whole BC thing but I'm Australian too and live in NSW. I have had a lumpectomy and will be starting chemo in about 2 weeks. Can anyone tell me, are the side effects of chemo all pretty common? I'm wondering what I can expect.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited June 2011

    Hi Amy

    Welcome to the club no-one wants to join :-)

    Where abouts in NSW are you?  Have you been told what sort of chemo you'll be getting?  Once we know what drugs are involved, we'll be able to help you with our experiences. 

    Don't get too scared - chemo has all these awful connotations, but some women come through it all relatively unscathed.  We are all here to support you and cheer you on.  You've just started on something really scary - but we've all been there too, and can understand exactly what you are going though.

    Hugs to you

    Trish

    xoxo

  • Amy80
    Amy80 Member Posts: 6
    edited June 2011

    Hi Trish,

    Thanks for your reply. Drs haven't told me yet, what drugs they will give me so when I know I will get back to you. I just saw the oncologist on Tuesday and he said they will bring me down just before I start treatment to show me around and give me all the info.

    It is such a scary journey and I'm so glad I found this site to connect to others who are also going through it.

    I'm in the Blue Mountains. Not looking forward to having my hair fall out in the middle of winter!

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited June 2011

    Hi Amy

    I was born in Lithgow!  My brother still lives there :-)  Which hospital will you be going to for treatment?

    Hair loss is pretty crappy no matter what the season, I reckon.  I lost mine in summer and had to wear a hat in the heat.  At least in the winter the hat will keep your head warm.  My hair is starting to grow back now - I have about half an inch, but we've had some pretty cold temps here in Canberra and I must admit that having very little hair on your head makes you feel even colder.  Mind you - it can help when the hot flushes happen - if I'm home I just walk outside and the cold air on my head helps a lot lol

    No matter what chemo regime you are going to be on, make sure you drink lots and lots of water.  I was drinking around 3 litres a day, it will help flush your system better and keep you hydrated.  I was absolutely terrified before I started chemo, I was scared about what the drugs were going to do to my body.  My first three treatments (FEC) were not very nice, but certainly doable.  I had trouble with Taxotere, which was after the FEC.  Not everyone has severe se's and I was just unlucky not to be able to tolerate the Taxotere.  Go into the chemo thinking this is going to beat any of those cancer cells that are floating around in your body.  My breast surgeon told me it was going to be short term pain for long term gain.  

    He was right - now it's behind me lol - while you are going through it though it's pretty crappy - but we will be right there with you, supporting you and cheering you on.  And you never know - you might be one of those lucky women who have very few se's.  I'll keep my fingers crossed for you.


    Hugs

    Trish

    xoxo

  • Amy80
    Amy80 Member Posts: 6
    edited June 2011

    Wow Trish, I lived in Lithgow for a while, my Dad is still there.

     I'm not too anxious about starting chemo, just wondering what it will be like. I'm sure that whatever chemo does to your body, the cancer will do worse. The one thing that was of concern to me was getting infections. I have 2 kids and my eldest seems to pick up any bug that is floating around. My Dr has assured me though that I won't be in too much danger as they will moniter me and give medicines where needed.

    Thanks for the water tip, I will keep that in mind.

  • Amy80
    Amy80 Member Posts: 6
    edited June 2011

    By the way Trish, how are you feeling now, physically and emotionally, post chemo?

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited June 2011

    Hi Trish - funny you should say about going outside for a hot flush - I did exactly that today at work Cool

    Welcome Amy - good you found us. May I suggest you join up to the chemo thread for June 2011 if there is one already. I still keep in touch with my friends from the Nov09 chemo thread.

    Sue

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