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Australian Sisters

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Comments

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012

    Hapy New Year girls - we're back from the beach - loved the breeze and sound of waves breaking.

    Kate - my bc was 11mm - no question for me to do the chemo/herceptin. HER2+ve is too nasty to refuse it. Any questions, you can ask me, seeing I've become an expert. Negative nodes are no guarrantee I'm afraid. I was the same, never even thought I would have to do chemo as I hadn't read about HER2 before surgery. It was a big shock, but my onc said it's good to be triple positive because of targeted therapies.

    Sue

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2012

    Oh Kate - what a bummer - on top of everything else.  I know you feel you've been blindsided, I was too.  Had sugery and because everything was as expected, didn't even think about chemo.  My BS was hedging a bit - he said I'd definitely not need rads, but wouldn't confirm I wouldn't need chemo.  My node was a micromet - it wasn't picked up at surgery, only when the full pathology was done.  Being triple positive is serious - and although my lump was bigger than yours I didn't hesitate at having the full treatment.  I'd rather do what I can now than try to deal with it and a stage IV dx.

    The chemo is rough, but you get through it.  Have you been told what regime you'll be doing yet? Herceptin is really a piece of cake, it's more a pain in the a$$ going in every three weeks to have the infusion.  The only se's I get from H is tiredness on the day of infusion (but I still work on the day) and a bit of diarhoea the day after.  Oh - and a bit of crusty "bits" in my nose lol.

    We'll be behind you - encouraging you all the way - both Sue and I are triple positive - and we've done the treatments, so can answer probably most of your questions.

    Jenn - honey I know exactly how you feel.  Chemo school is a pretty awful thing - very confronting.  Just remember you may not get all the se's they talk about.  Some women have very few.  With FEC you WILL lose your hair - but it WILL grow back.  I worked through most of my chemo treatments, but you do have to have an understanding workplace behind you.  If you think your boss is already writing you off - you may need to go up the ladder to someone higher.  Have a frank discussion with them.

    I also think that talking with a psychologist will help immensely.  I found my one session last month helped so much.  Financial fears are hard to face - but you know what? You will get through it.  Somehow.  There are more options open to you than you probably realise.  And if it comes down to it - if you lose your house, you will get another one - you can't get another you :-).  Yes cancer changes us - I'm not the same person I was 2 years ago - and I may never be that person again.  It's a very long hard road, but once you've travelled it you realise that the things that really matter in life are the ones that you love and love you, and health.

    Both of you Kate and Jenn are about to embark on a really rough ride - a roller coaster in fact, but you have many supporting hands holding you up.  We will all be there for you to hold your hand and cheer you on.

    Sending you both lots of love and hugs.

    Trish

    xoxo

  • Kate60
    Kate60 Member Posts: 523
    edited January 2012

    Thanks Trisha-Anne and Sue.

    I had a good long talk with Donna, my wonderful breast nurse today and I have decided that I am not only going to throw the book at this thing but the whole damn library!!!!!

    I am really grateful for your support and don't you worry, I will be hollering loudly with any questions I have regarding Herceptin. Is being HER2+ the worst of the worst possible diagnosis but also the best in terms of having a targeted therapy to kill it? That's my take on what I have read so far. It's all so complicated and confusing and scary.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2012

    Kate, the biggest ((((((hugs))))))) to you as I think you need it.  Any dx of cancer is scary and bc is so varied so that makes it even more so.  The others are right about having a whole lot more targeting treatments as TP which raised your odds a whole lot.  I'm glad you have decided to through the whole book as the beast and hopefully scare it off for good!  Just know that we are always here for you no matter what.

    Kate, I'll pm you my number so if you want to chat feel free.

    Love n hugs.  Chrissy

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012

    Kate - being triple positive is much better than triple negative. Yes HER2 is nasty but herceptin is a game changer for sure. We are so lucky we can get it for early stage bc. It's only been available to us for about 8 years. I had a link to a retrospective study which I will find and post for you.

    Back to work today for me girls and the temp is going up so it will be good to be in aircon all day.

    Sue

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2012

    Sue - have fun at your first day back at work :-) I returned on Tuesday, and really wasn't feeling like it.  It's been very hot here - we've had a really cool summer so far, so 35 degrees has been a bit of a shock to the system.

    Kate - I'm glad you are throwing everything at this too.  Yes being TP is scary - but it's better than being TN - we have the drugs to beat it!  I'll PM you my numbers too - so you can call if you need to.

    Jenn - how are you going today?

    Trish

    xoxo

  • racy
    racy Member Posts: 976
    edited March 2012

    Kate and Jenn, chemo is scary but the reality is not that bad and is doable. The worst part for me was waiting for my hair to grow back!



    There is heaps of info on this site about how to manage side effects. The main ones I had were nausea and fatigue for up to a week after each treatment. Days 3 - 5 were the worst. I didn't work which meant that I could do whatever I felt like or nothing. But I was able to carry on with a normal social life and do everything for myself, (although I was a bit slack with housework).



    You will get through chemo and each day that passes you will be a day closer to finishing.



    Best to you both.



  • racy
    racy Member Posts: 976
    edited January 2012

    Jenn and Kate, there may be more than one chemo cocktail that would be suitable for you so do ask about all your options. Some are milder, some are more aggressive, some take longer than others. You can decide what's important to you.



    It was important to me to finish as quickly as possible so I chose an aggressive chemo over six cycles rather than a similar one administered for eight cycles. Mine were three weeks apart but simetimes you can do dose dense every two weeks. Some patients with very early stage tumours may only need four cycles.



    You can get multiple options from the same onc or different oncs.

  • racy
    racy Member Posts: 976
    edited January 2012

    Hi ladies, I just joined a gym. It was a deal too good to refuse - no joining fee, no contract, $15 per week for unlimited use and classes. And it's right across the road from home!



    This will help me with the new exercise study program that I have started, by allowing me more variety in my exercise other than walking. Plus it is better when too hot, too cold, too wet or too dark to walk.



    I am starting to feel a lot better since I got my hair extensions and will be starting a job that will be ideal for me soon.



    I try to stay positive as I have a lot going for me but there is always doubt in the background which I never had before BC. It is hard not to worry even with medication and therapy!



    I hope you are all doing ok and can enjoy the weekend, especially Jenn and Kate - I am thinking of you.



  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    Hit a big black pit of anxiety in the past few days. Functioned perfectly at work but was crying constantly at home and I haven't had more than 3hrs sleep since surgery back on the 9th of December.... Visited the psych-onc who is part of the onc team this morning and took my poor husband along because he was at a loss on how to help make me feel better.



    By 5pm this evening she had contacted my GP and I was in his office. He has prescribed me a low dose anti-anxiety med to get me through this next week. Took one immediately I got home and tonight I feel "normal" again and have lost the feelings of doom and the need to cry.



    Thank goodness my centre offers this service.



    regards Jennt28



    PS: got my LVEF result this afternoon and it's really good so I'm supposedly well placed to tolerate the herceptin etc.

  • racy
    racy Member Posts: 976
    edited January 2012

    Jenn, you could ask for a mild sleeping pill as well if you continue to have difficulty sleeping.

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    Thanks Racy,



    We all agreed that the non sleeping was a symptom of the anxiety so addressing the anxiety should solve the sleeping problem. I just woke and It's 6am! I did wake up briefly last night at 3am but went back to sleep quickly. THANK GOODNESS this worked :-)



    The psych-onc had suggested a very heavy duty med but my GP said he didn't think I needed that. He's given me a short term med to get me through to my treatment next week. If I still need something after that we'll reassess.



    The lovely psych-onc has scheduled to come and be with me at the start of my first infusion :-)



    Jenn

  • racy
    racy Member Posts: 976
    edited January 2012

    Jenn, don't forget to drink lots of water, take the meds they give you and I suggest one or two Senekot tablets the first few days to prevent constipation. Plus have crackers, ginger ale or tea and ginger pieces on hand to combat nausea. Eat small amounts every couple of hours and if you start to feel queasy. Rest as much as possible during the first week. Monitor your temperature several times a day and call your onc or go straight to the ER if you develop a fever or any other unusual symptoms.



    Six cycles is good; better than eight!



    Are you planning to take any time off work after each treatment? In my experience the side effects kick in about day three.



    The hair fall can start about day 14. If you decide not to shave your head (I didn't) I suggest wearing a hair net to stop the hair dropping everywhere. (I used Nioxin shampoo and lost most but not all my hair).



    Maybe search or post to find people who had the same chemo as you to find out what their experiences were.



    Despite the above list of precautions, chemo is not nearly as bad as it sounds, for most people. You are young and strong and should be fine.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2012

    Awe Jenn, sorry you are having the anxiety problems.  It's good that you have the psych services at your treatment centre as it makes for quicker help.  If you are still having a sleep problem later and want to avoid more chemical drugs that help, try Melatonin.  It's natural and works well for 90% of people.  It can be gotten on script from a Green Pharmacy ot you can get it online but it takes a few weeks to be delivered as it comes from overseas.  If you want it, Biovea  is a great Australian site to get it from.

    Wow!, your psych is going to your first infusion? Now that's what I call service!  I know it's all unknown and scary but once you start all will become easier.  As Racy says, drink, drink, drink before during and after treatment as it helps to flush the crap from your system and keep the se's to a minimum.  Also, they will give you anti nausea drugs but if it doesn't help, let them know so they can change it for one that does.

    You will have a lot of company in that infusion room, as we will all be there with you.

    Love n hugs.  Chrissy

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited January 2012

    Thanks for the tips everyone. I feel so much better today!



    Today is my "bucket list" day. Went and had a hot stone massage this morning (bliss) and hubby and I are headed into the city after lunch.



    We are booked into an opera house/harbour bridge view room at the Shangri La for the night. We have access to valet parking, the gym, swimming pool, and breakfast tomorrow morning. We're booked into Altitude restaurant for dinner, and I've just discovered that today is the first day of the Sydney festival so the city will be full of music and entertainment!



    All this is things we would never normally do, but with the impending treatments and associated permanent side effects for someone pre-menopausal like me it could be a last romantic "hurrah"... SH-T this all sucks...



    regards Jenn

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2012

    Have fun!

    Love n hugs.  Chrissy

  • racy
    racy Member Posts: 976
    edited January 2012

    Great idea for a luxury weekend, Jenn. You deserve it! We all deserve to pamper ourselves occasionally with what we go through.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2012

    Jenn, sorry I haven't caught up on here for a few days.  Sorry you had all that anxiety, it is normal though - I was exactly the same.  It's great that you will have the psych-onc with you for the first infusion.

    Everyone has said the same things and I will too - don't forget to drink lots and lots of water.  I normally drink around 2 litres a day, but on chemo I was drinking more than 3 - and it helps.  Don't forget jelly beans will help after treatment too - they are good to suck on and give you some glucose and at least for me were one thing that didn't taste totally horrible. :-)

    You get your port in soon too don't you? Don't stress about it - it is a really simple op - and won't take you long to get used to it.

    Hope your luxury weekend has gone well - what a great idea!  You'll have lots of great memories to dwell on when you are feeling low.

    Sending you lots of ((((hugs)))) let us know how you go.

    Trish

    xoxo

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2012

    Kate - how are you going?  When do you see the onc?

    Trish

    xoxo

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2012

    Racy - forgot to say good for you for joining a gym, wow! that's cheap.  I have good intentions, but I hate going to gyms, my DH has a home gym that's actually quite good, and he uses it a lot.  He's taken me through all the permutations lol and I'm actually starting to get stronger.  He also has Zumba set up (this is all in his "shed") but so far I haven't started doing that - when I do think about it it's too hot.  Just goes to show that I only started thinking about it in the last 2 weeks!  We've had cold weather up until then.

    I also have Wii fit, and try to do that as often as I can. 

    Let us know how you progress.

    And a new job!?  Do tell, sounds exciting.

    Worry - well we're all with you there.  It's hard sometimes to put it at the back of your mind.  We'll get there though - especially with each other's help :-)

    Trish

    xoxo

  • racy
    racy Member Posts: 976
    edited March 2012

    I just did my first gym session; an hour on the treadmill. My sister joined too so we can go together. Living across the road from the gym makes it so easy. I did a pilates class last Thursday and they also have yoga and aquarobics. I plan to do 35 - 45 mins cardio a day and classes twice a week. I will have an assessment and program design session on Tuesday. This all links with the wellness program that I am doing.



  • Kate60
    Kate60 Member Posts: 523
    edited January 2012

    Hi everyone.

    I haven't got an Onc appointment yet, although my RO rang me on Friday to say he had sent off a referral for me, so I should hear from them shortly.

    My BS comes back to work tomorrow after the Christmas break and I need to see him as a priority as my breasts really just aren't getting any better. They aren't any worse.. but just when I think maybe I am getting better and having a good day, the next day I am almost back to square one with the redness, swelling and ultra sensitivity of the skin (which is the worst part) I am getting a bit sick of them - although i still love them to bits after the reductionKiss

    .

  • Linda1966
    Linda1966 Member Posts: 441
    edited January 2012

    Hi there. Had no idea this site existed till tonight or I would have joined when I was diagnosed a few years back.  Im in Brisvegas, 45 yo and finished chemo 2.5 years ago and on Arimedix for another few years. So nice to come across a site where we can talk thru our worries and help each other to cope.

    If it helps, I was premenopausal before cancer and am post menopausal now thanks to chemo and meds. Had blood clots from a picc line, changed to a port and got thru the rest of the chemo. Own my own shop which means im on my feet at least 8 hours a day and have coped fairly well with it all, side effects and all. Was divorced just prior to diagnosis so if anyone knows what its like to get thru this on your own, I sure do lol.

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012

    Welcome Lyndal - I'm in Brissy too, so is Racy. This site has been a life saver for me - hope you get as much benefit from it as I do.

    Kate - sorry your boobs are bothering you, sometimes I wish I had had a bmx, but I hate surgery so go for the least nasty option.

    Sue

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2012

    Hi Lyndal nice to meet you. I'm in country SA about two hours drive to Adelaide. This is definitely a great place to come.



    Kate, I'm so sorry you are still having issues with the girls. Here's hoping you can get an appointment with your doc soon.



    Trisha when you start with the Zumba let me know how you get on as I would really like to know how hard it is on the knees.



    Racy good on you for beginning your fitness campaign!



    Sue hope you are doing fine.



    Jenn hope your weekend was everything you hoped for and more.



    I'm heading back to the city on Tuesday as the dreaded checkup is on Wednesday morning. I don't think there is anything major going on but as always there are a few things that need to be addressed.



    Love n hugs. Chrissy

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012

    Chrissy - what were you doing up so late - I guess you couldn't sleep either :). I'm ok - our daughter and SIL return to Adelaide tonight thank goodness - they've been here too long and we want our house back. It's been great to see her, but I wish she had left him behind - irritating to say the least. Good luck with your checkup.

    Sue

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2012

    Hi Lyndal, welcome to the site. 

    I'm in Canberra - well I actually live in NSW just outside of Canberra, and work in Canberra.  But no-one has ever heard of the place I live in, so it's easier to say Canberra lol

    Kate - so sorry your breasts are still bothering you, it will be good when you can get to see your BS to see what he/she has to say.

    Chrissy - I'll be thinking of you tomorrow, I know you'll be feeling pretty antsy until you have good news xoxo  I'll let you know about the knees, mine are dodgy too - but only from the Arimidex.  Actually - I'll have to ask my DH - his knees are shot - he hasn't complained about the Zumba - but then he hardly ever complains about anything.  I know - I should bottle him and sell him lol

    Sue - soon you'll have your blessed peace at home.  Know all about having guests for just a bit too long - it's great to see them, especially when they are family, but it's great when they go too.

    Trish

    xoxo

  • Kate60
    Kate60 Member Posts: 523
    edited January 2012

    Thanks girls for your wishes. I will definatly let you know what is going on. They are just a darn puzzle to me at the moment.

     Suzie - sounds like the old saying that visiting guests have roughly the same shelf life as unrefrigerated fish seems true for you... you'll be so pleased to have your own space to yourselves again.

    Now I'm off to try to see my BS. I think he will be the only one who will be able to pinpoint this problem. The Drs I've seen so far don't have a clue which isn't their fault. I just keep coming up with a blank when they do tests. But something is very wrong.

    LOve to all, Kate

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012

    Kate - good luck - I hope he can tell you what's wrong

    Sue

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2012

    Yay Sue!  There's nothing like having your house to yourself!  Like me, you probably love to see the kids but love to see them go home.  I was up late because I fell asleep in my arm chair and I'd just woken up again and thought I'd check out the boards before I wobbled myself off to bed....lol.   I have to make sure I go to bed as soon as I feel the sleepines hit me instead of thinking 'I'll just watch the last of this program'............famous last words....lol.

    I have a feeling that my DD's have finally realised that I am not going to get better only worse and because of that want to spend all the time available with me.  I'm okay with that but it always means extra washing and work when they are here.............oh well I guess there is always a trade off somewhere along the line.  Next visit from DD2 and fiance, Australia Day plus 2 days.  I will prepare foods that just need to be warmed through so we can spend the time chatting.

    Kate, good luck with your BS today I sure hope he has some answers for you!

    Love n hugs all.  Chrissy

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