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Kiwi ladies who need encouragment, but all welcome.

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Comments

  • JoTro
    JoTro Member Posts: 25


    Hey Kruise, have a fantastic holiday, forget about cancer the whole time your away! Eat the food you want, drink a little, be normal and enjoy your time.  (very jealous - have to ask lots of questions when you get back as I'm planning our OE now for entertainment value (non cancer focus) and the idea of getting away in a couple of years time)

    Anybody heard of the wound dressing Mepitel Lite that they are saying reduces Radiation wounds?  Her in NZ only by the looks of things my USA friends in Chemo March thread don't appear to have heard of it.  I met the Rads Onc who suggested I perhaps get some,  Cant seem to find out where to buy from...

    Last Chemo next week, starting 30 x Rads end of June.

    Have a great weekend ladies!

     

  • Hils
    Hils Member Posts: 152

    http://tvnz.co.nz/national-news/dunedin-researchers-in-radiation-side-effects-breakthrough-5915361

    Here is the research study that took place in Dunedin

    And below is the supplier, although you should ask your oncologist / rads department and see if they can get this for you from their supplier. As you will probably need them on board with this idea before you use it.

    http://www.molnlycke.com/au/Wound-Care-Products/Product-selector/Tabs/Products/Mepitel-One/
     

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Hi all,

    Sorry to have been off this thread for so long.  Thanks for the warm welcome!  

    I got to speak at a Pink Ribbon breakfast yesterday in Otaki.  Not very well attended, sorry to say, but raised about $600 for BC research. And they're running an additional auction of items, so more will be raised.  Elva from Sweet Louise came up from Wellington to speak and her brother in law had passed away the night before.  That's dedication to a cause!

    I'm doing well; still working.  Headed to Auckland tomorrow through Friday, then in Welly for a week, then back to Auckland for a week.  Was in Christchurch last week.  A bit crazy busy, but in consulting, that's a good thing.  Dogs are allowed in our Auckland office, so I'll get to see my "boyfriend", Oscar.  He herds me.  And he loves me.  And I love him. He's adorable.  My husband is aware that I have a boyfriend in the office there; he just shakes his head at me.

    The info you provided on the radiation dressing is fantastic. I've bookmarked it, just in case.  Not likely that I'll have radiation that burns in the future, but you never know.  On a lighter note, I have beyond pale skin and had 38 radiation treatments when I had Stage I.  And I burned.  Had some wonderful cream that kept me from blistering, etc.  However, I did peel.  And when the skin peels, it itches.  And there is no good way to scratch your boob when you're sitting in a meeting trying to concentrate!  :)  It was horrific and hilarious at the same time.

    Jo - Aquaphor (http://www.drugstore.com/aquaphor-healing-ointment/qxp13123) helped me a lot with the radiation.  But it sounds like these dressings will be even better.  But you might get some aquaphor too.  It's available at the chemist.  And congrats on finishing chemo!

    Take care, and hugs to all.
    Terre

  • kt1966
    kt1966 Member Posts: 1,021

    Hi all!

    It has been ages since I popped in & it looks like it has been very quiet indeed! I hope that means everyone is well & too busy to think of bc  :)

    I've had a good few months since I last posted. The Tongariro crossing was great, I can highly recommend it. It was a bit cold to start with tho (we did it in May) but well worth it. I was surprised by how many people were doing it tho, it seems quite popular.

    I also went sidecar racing (hubby races) and had a go passengering- scary but loads of fun.

    Unfortunately I find myself coming back, not just to say hi- but because I'm having to deal with b****y bc again! Just had a core biopsy of an enlarged lymph node in my left axilla (opposite side to my original bc) and its bc again...

    Next week I'll have a PET-CT scan to see if its anywhere else.

    I don't know about you, but I feel like I have better things to do than deal with this crap again.

    Such is life I guess. We don't always have a say about what happens to us & just have to deal as best we can.

    Take care all & I hope life is going well for you all

    kt

  • shazzakelly
    shazzakelly Member Posts: 620

    Oh no KT that's Awful news. Sad I'm keeping my fingers crossed that the the PET doesn't show up anything else and it's localised. Keep us posted.

    I'm still muddling on. Doing well on Taxol still. I had my 39th weekly treatment on Tuesday with no sign at this stage that we are going to stop. It's keeping my cancer stable which is great.

  • kt1966
    kt1966 Member Posts: 1,021

    Thanks Shazza. 

    I will let you know when I find out :)

    I'm glad you're stable and coping well on taxol. I hope it keeps going that way for a very very long time.

    Thanks for being here (you know what I mean)

    kt

  • Hils
    Hils Member Posts: 152


    KT

    Really shocked to read your note on here, I thought and hoped that you had kicked cancer into touch for good. Hope all goes well with the PET scan and that nothing is found, positive thoughts are winging your way. Big hugs and please let us know how it all goes. 

  • kt1966
    kt1966 Member Posts: 1,021

    Yeah, me too Hils...

    Its hard waiting- the scan is on Tuesday, then I get the results on Wednesday (quite quick, thankfully)

    I hope you are going well

    kt

  • Hils
    Hils Member Posts: 152

    KT

    Will be thinking of you on Tuesday and wishing the best of results for you on Wednesday. Really glad you are not having to wait too long, although I know that any waiting time is too long at times.

    Yep doing well recovering from a long overdue arm surgery which will take another 9 months of rehab. Awaiting a check breast MRI as I am two years out, I am hoping it will find nothing.

    It has been a strange old year as my partner was also diagnosed with breast cancer at the end of last year, but they are now cancer free. who would have thought that we both would be diagnosed within two years - quite stressful. But all good now thank goodness.

    Hang in there and stay positive. Hugs

  • Kruise
    Kruise Member Posts: 242

    hi kt

    Lovely to hear from you after the break but ((big hugs)) hun on your not so good news. Like the others I'm hoping all goes as well as it can for you on Tues/Weds. I know it seems hard but do try and remain as positive as you can - you always strike me as a bubbly happy person so I wish you nothing but the best in this next challenge.

    So glad Tongariro went well. And the sidecar racing sounds very exciting. Good on you!!

    I started writing on here the other day actually to say I was back from my trip - but it lost it all as I tried to post so I gave up! 

    Anyway - we are all here for you kt - b****y bc alright!!!!!!

    Kia Kaha

    Love K xox

  • kt1966
    kt1966 Member Posts: 1,021

    Thanks girls :)

    Hils, arm surgery that takes 9 months of rehab doesn't sound fun! I hope its not too sore & you get full use back. I hope the MRI goes well. I'm glad your partner is ok now & I hope you both remain well.

    Kruise- you've been to Europe- wow! How was it? Where was the cruise you went on? You'll have to fill us in ...

    Enjoy the rest of the weekend :)

    kt

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337

    Sorry to hear of the bc being back, kt.  Hope you get good news on Wednesday!

  • shazzakelly
    shazzakelly Member Posts: 620

    KT thinking of you.  Hope the scan went well today and you get good results tomorrow xxx

  • Hils
    Hils Member Posts: 152

    Positive thoughts KT - hope the scan went smoothly and your results are good ones tomorrow.

    Hope all you ladies in Auckland and North of Auckland have a good night tonight and nothing is blown away or damaged. Stay safe

  • kt1966
    kt1966 Member Posts: 1,021

    Well, the scan is done. I hate how you have to hold your arms above your head & keep so still- my arms are always killing me by the end :)

    Thanks so much for your thoughts. 

    I'm working tomorrow, so I really hope this storm has blown out by then! It's nasty at the moment. (Last storm there were a couple of big trees down across the roads where I had to go). At least it will help time pass so I don't think about results....

    I hope you are all nice & warm & safe inside. I'll let you know how I go tomorrow. 

    kt

  • Kruise
    Kruise Member Posts: 242

    Was thinking of you today kt and your scan. Hoping it's all good news tomorrow. We'll be here waiting to hear from you.x

    Has been lovely and sunny and calm in Wellington today so we must be missing it this time.  A bit chilly tho! Doesn't sound good up North by all accounts from what the news is saying. 

    Europe was fab and the Cruise just wonderful. Definitely a great way to travel! I'll post a photo or two at some stage for you. 

    Yes keep warm everyone. Xox

  • kt1966
    kt1966 Member Posts: 1,021

    So- I have the results of the PET-CT.

    Not good news I'm afraid. (I had a feeling it wouldn't be when the nurse rang me at work to make sure I had someone coming with me to the appt)

    So, as well as the axillary node, the anterior mediastinal node lit up.

    The lower left lobe of my lung has an area 'suspicious' for a metastasis. I have a tiny-low density lesion in my liver (4mm) which may or may not be mets.

    Then there's the bones- multiple bony metastases in the cervical, thoracic, lumbar vertebrae, S1, right ischium, lower sternum & lesser trochanter of left femur!

    Also there may be something on my thyroid.

    In other words I seem to be riddled with it. B****r!

    I have an appt with my onc on Monday- looks like I'll be having chemo. The surgeon said she would no longer remove the lymph nodes.

    The only symptoms I noticed were tiredness (could be anything), the enlarged lymph node, a bit of discomfort (something not right feeling) in my groin/butt bones area! and my sternum has been tender for only 2 weeks.

    I'm trying to stay calm. Thank goodness the kids are away till Friday...Will tell them when we have a plan in place.

    Its hard not to think the worst, but I see here that people can keep on keeping on for some time with these 'issues'.

    Thanks for all your kind thoughts!!

    kt

  • shazzakelly
    shazzakelly Member Posts: 620

    Oh KT, what awful news. I'm so sorry. It does take a while for all the Stage 4 stuff to settle in. I too lit up like aChristmas tree with cancer everywhere. I still light up now but not nearly as much and life goes on pretty much as usual with work, kids etc. 

    take a big breath, be kind to yourself and PM me if you want to chat.

    Again I'm so so sorry Sad 

  • Hils
    Hils Member Posts: 152

    So sorry to hear this KT I have been thinking of you and hoped only the best for you. Be kind to yourself and give yourself time to take in all this information. There are some fantastic people on these boards that have lots of info and will be able to talk to you - reach out and take them up on their offers.

    If you need anything ask, we are here for you even if it is just to listen. Big hugs

  • Kruise
    Kruise Member Posts: 242

    kt hun - only just seen your post this morning. I can't imagine you slept very well last night. Your head will be whirling around. So so sorry to hear this news for you. But you are absolutely right - you will keep doing well for a long time yet. It's just the game plan has changed. Shazza you are most definately an inspiration to us all coping with your ongoing treatment and keeping on with life. 

    Have you had a PET-CT scan in the past at all kt? I know they don't really do them unless they have too - but it may have been useful to compare. I know that sometimes things light up that aren't cancer related but arthritis, hemangeomas etc. It would probably help your peace of mind if not all those spots turned out to be cancer - the liver, thyroid etc. Perhaps you can request an MRI also.

    I know you will feel a bit better once there is a plan in place for you for treatment.

    There isn't really much we can say except sending you lots of love and hugs and a beautiful big bunch of virtual flowers for you. 

  • kt1966
    kt1966 Member Posts: 1,021

    Thanks so much girls. It helps to share this with people who get it.

    I guess I should let my kids & parents know this weekend, or maybe wait till I see the onc on Monday.

    (this was my first PET, Kruise, but it included a CT scan as well, & nothing had shown on my CT 3 years ago)

    Shazza, I may PM you after my onc appt- thanks for the offer :)

    Strangely enough I slept well last night, the previous night I didn't. I went to work today & it felt good to carry on as normal- although I did fill my boss in & she's been fantastic- wants to hang on to me & adjust what I do if necessary.

    The hard part will def be telling kids (their g'ma, my m-i-l, passed very recently from liver mets, (not bc)) Really bad timing, but then it always is...

    Anyway, it just reminds you to make the most of every day I guess.

    Love, kt

  • [Deleted User]
    [Deleted User] Member Posts: 814
    kt, Im so sorry. Words don't come except I can't imagine the roller coaster you might be on right now.

    Gentle Hugs.
  • fizzdon52
    fizzdon52 Member Posts: 382

    Hi all,  another Kiwi here, I am new to this forum and find it extremely interesting. I was diagnosed with ILC in February this year. kt I am sorry to read your news. I don't know anyone else who has had ILC like me. I see you were first diagnosed in 2003 and you were only 37. I find it all very overwhelming sometimes and still can't believe I've actually had bc. I find I am constantly thinking about it at the moment and worry about dying. I know it's not good for me to feel like this, but how do you feel positive when you just don't feel positive? I'm not one of those happy dancing into my operation type of people.  I always put on a brave face for my kids and my elderly Mum but when I am on my own the negative thoughts over take me. I find myself googling Lobular BC all the time and I just can't stop. I also feel really guilty like it's all my fault, because I have high cholesterol, eat the wrong food, don't exercise etc. etc. Sorry to rant and rave but I guess it's good to get it off your chest. Anyway thought I would just make myself known. You know kt when I was first diagnosed, because I had Lobular and it's so sneaky, I had a CT scan, they found a nodule/lesion on my liver and something going on with my jaw, and other things I've never heard of before but no-one was worried about it.  So maybe some of the things they have found aren't what you are worried about? Kind regards, Donna.

  • shazzakelly
    shazzakelly Member Posts: 620

    Welcome Fizzdon to our little group. I know it's easier said than done but try not to blame yourself for getting cancer. I was first diagnosed 15 years ago when I was 32 so I've had a long time to think about these things and you know it all comes down to luck. Not what we did or didn't do. 

    It's hard also to put a positive spin on things when you aren't feeling positive but I want what time I have to be happy so I try to live in the moment. If I had spent the 14 years between my first diagnosis and my stage 4 diagnosis constantly worrying about cancer it wouldn't have been much fun. Especially as for most of that time I was well and had nothing to worry about.

    It's early days for you and it takes some time to get a handle on everything so feel free to rant and rave. We all need to at some stage. Xxx 

  • woodyhollow
    woodyhollow Member Posts: 103

    Kt hugs..thinking of you

  • kt1966
    kt1966 Member Posts: 1,021

    Thanks woodyhollow :)

    Fizzdon, nice to meet you. Sorry, it is hard at first getting your head around all this stuff.

    Definitely don't blame yourself- many many people live worse lifestyles than us & they don't get cancer... Anyway it doesn't change anything to blame yourself, it is what it is. Shazza put it all very well.

    I did have a bit of IDC in the mix as well- not sure which metastasised?  Also I had positive lymph nodes with extracapsular extension (it had filled 3 nodes & grown outside them as well) I know its no guarantee, but hopefully negative nodes means its less likely to travel.

    Try not to google too much! This site is good tho. I hope things settle down soon. Enjoy your kids, make the most of having your mum around and we're here if you need to sound off about bc!

    kt

  • Alyson
    Alyson Member Posts: 3,737

    Hi all

    Have been reading and catching up with all the news.

    Kt sending super big hugs to you. If you want to talk to someone there is ChrissyB over on the Aussie site. She is wonderful and has incredible knowledge. She has been Stage 4 for 6 years I think and has just had her second knee replaced. PM me if you want her email. And I am always around if you would like a coffee one day.

    Fizz welcome I am the oldy on the site. DO NOT GO TO DR GOOGLE. I had mixed cancer but haven't put it in my stats. Everyone is different. I have a large lesion on my liver however it is not cancer. I know it is easy to say don't worry but you must live every day and really enjoy those children of yours.  PM me if you want to talk.

    The Aussie girls are coming over the last weekend in November. I am about to start getting things sorted out. We had such fun in Sydney last year and they would love to meet up with as many of you as possible. I was recently in Canada and had the most wonderful lunch with folks I have meet on BCO.

    image

    Will let you know details as I organise them.

    Great big hugs to all.

  • woodyhollow
    woodyhollow Member Posts: 103

    Hi Fizzdon Nice to meet you - another ILC like me, there are not so many of us. I totally understand your need to know as much as you can as I was exactly the same, after my diagnosis I probably spent 2 months googling everything I could find especially about ILC. I don't think it's a bad thing as knowledge is power, but there is a lot of crap out there too and it can be hard to know which is which...I don't regret doing it because I learnt a lot.

    I did some hypnotherapy sessions which helped a lot with the anxiety issues, guilt feelings etc, I would highly recommend if you are stressing out.

  • midnight1327
    midnight1327 Member Posts: 1,331

    KT am very sorry about whats happening to you. you poor dear. this dreaded disease. you think we get rid of it and its like a boomerang, comes back and hits us. this really saddens me about you KT as you were doing so well. i am with you. Kt along with other ladies and really hope they canget on top of it quickly. BIG GIANTIC HUGS XXXX

  • fizzdon52
    fizzdon52 Member Posts: 382

    Hi again, something I find really confusing is how come some of us have chemo and some don't? Don't get me wrong I am glad I didn't have to have it but just a bit confused. My tumour was 3.5cm and the onco doctor said that was of concern. Also they said I didn't have any in my lymph nodes but how do I trust them, given the fact that lobular is so sneaky and all. I've read that it can be hard to detect in lymph nodes. I don't trust the medical profession very much. I know historically Lobular doesn't respond as well to Chemo as other bc's but wouldn't it be reassuring in case some of it had spread? I had a really bad experience with the medical professionals and Middlemore when my son got really sick at age 15, it took them 2 years to diagnose Lupus and he/we went through hell. They were totally incompetent, even one of the doctors said it was a "circus" - his words. Also they couldn't find my bc even though I told them there was something wrong. I made them show me my mammogram and even I could see it. This is over a year before they diagnosed me. Also the Head Oncologist wanted me to go on Taxomifen, however I refused due to a strong family history of thrombosis and uterine cancer. She really pushed me but I dug my heals in. So they put me on Zoladex injections to put me into menopause and then onto Femara. I also made them refer me to a Gyne Specialist because I wanted to make sure everything was okay down there. Lucky it was but the Gyne Specialist told me twice that I did the right thing not going on Taxoxifen. So I have no faith at all in them. I have also read the AI's are more effective than Taxomifen? Have you guys got any opinions on this? Woodyhollow I'm glad I'm not the only one that has read everything there is no know about Lobular. Most people have never even heard of it. I also read that there could be a connection between Lobular ladies having fathers who have had prostate cancer. My dad had prostate cancer so I think that's interesting too. I have lots of questions. Thanks for listening :)

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