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Comments

  • racy
    racy Member Posts: 976
    edited July 2012

    Ladies, I heard on the news about a finding at Peter McCallum centre that can stop BC spreading to bones. Did anyone else here of this?



    I am going to look up that site shortly.

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

    Me too - right now

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

    http://www.abc.net.au/worldtoday/content/2012/s3551215.htm

    http://www.heraldsun.com.au/news/national/bone-breakthrough-could-help-stop-disease-spread/story-fndo3ewo-1226432661341

  • Linda1966
    Linda1966 Member Posts: 441
    edited July 2012

    Yeah that came out nearly a fortnight ago I think Racy. Sounds very exciting but at the present its focused on blood cancers, but it sounded very promising. Fingers crossed it works well on humans in the trials and can be expanded upon to encompass the rest of the cancers.

    Btw, my name change is cause I took note of the mods thread about not using our real names, and whilst I dont have anything to hide, Id hate to have my ex or his new partner googling me and reading everything I write, so Ive changed the spelling hopefully enough to keep that from happening.

  • Linda1966
    Linda1966 Member Posts: 441
    edited July 2012

    hmm now Im not sure its the same new treatment that I was thinking of. the one I knew of is at http://www.curecancer.org.au/Portals/0/Documents/RESEARCH/CLRF WHITEPAPER/Megan Bywater media release_final.pdf

  • racy
    racy Member Posts: 976
    edited July 2012

    thanks Sue.

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited July 2012

    Hi girls, i rang and finally got hold of BC nurse and she is going to send me a booklet of the results and is going to send me mine inside it, but i was er+ pr+ and Her2-. so that explaines why i did not get herceptin. the only bad part that it was grade 3 and a particualy nasty type of carcinoma, they took a large amount of tissue out and my margins were clear,some of tissue was quite diseased which is why they took alot out. he wished he could given me a mascectomy, but i had not given concent for that to happen and would try the rads and  tamoxifen, but if there is another concern later on, will def consider a lumpectomy, with mx on the agenda if it looks like last one and have it with consent before hand. then she said, he will probably just go for the mx to begin with. he could of don eit last time, but legally he could not with out my knowledge. so at least i have understanding now.

  • Linda1966
    Linda1966 Member Posts: 441
    edited July 2012

    Thats good news Midnight. So glad you finally got all the information so you can have peace of mind regarding your treatment. Were you node negative?

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited July 2012

    yes Linda i was node negitive, they did the sentinel node thing, will be glad when i get the book and then i can read it in english rather than biology terms. i  am glad i got to talk to her as i have been phoning a few times and never get a reply,so it was good to talk to her.

  • melp27
    melp27 Member Posts: 295
    edited July 2012
    hi everyone

    well today's the anniversary!!! i did cry a bit this morning but im quite good now! shouted myself some lunch at the local cafe to celebrate!! I seriously wouldnt have gotten through this without the support groups ive found and joined since the start of this journey.

    My family and friends have been awesome Smile

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited July 2012

    I hope you have good aniversay and make sure you treat your self to the max. congrats. gentle warm hugs. xxxx

  • kyliet
    kyliet Member Posts: 587
    edited July 2012

    I hope you had a happy day Mel, it is fabulous you have had great support.

    Midnight, it is great you had your results clarified. Things are easier to cope with when you know what is happening. 

    Thanks Linda and Sue for the links. I had a very sad experience with someone today who was wishing this had been available previously. 

    Tomorrow I am going to radio by car, yipee. My Mum and daughter are taking me to lunch and we are making it a day out.

    My skin is holding up really well and I start my boosts tomorrow so fingers crossed it won't get worse. 

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

    Thanks for those links, the reading was very interesting and I sure hope they get it moving soon so there will be less of us with bone mets.

    Yay Midnight!  Finally some clearcut answers for you.  I'm sure that will give you good reason for a gret big sigh of relief!

    Kylie hope you have a great day with your Mum a DD.  Travelling by car will sure make the day a lot easier for you.  Enjoy you lunch!

    Mel congrats on your cancerversary!  I'm glad you have gotten through the day with only a few tears. The only way to go is up!

    Finally got off my butt and went and bought a new airer so I can put the woolies in the lounge where the fire will help to get them dry.........hopefully overnight.  It sure feels like winter is going to hang around for quite some time yet.....lol.......give it a few months and we'll be whinging about the heat.......

    Love n hugs all!   Chrissy 

  • melp27
    melp27 Member Posts: 295
    edited July 2012

    yeah i had a great day!! it was awesome!!! after lunch i watched some of my favourite dvd's and just relaxed.

  • Kate60
    Kate60 Member Posts: 523
    edited July 2012

    Boy, we're all quiet here lately. I have a question. I have noticed since my last Herceptin that my last two fingers on my left hand (my bc side) just tingle and feel numb. Could this be a sign of something going on with my heart and therefore circulation, or does it sound like neuropathy? I'm having another echo on Friday so I guess if it is the heart it will show up. Strange that I'm only just getting this now. Its constant and doesn't fluctuate. I can still use them but they just don't feel normal.

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited July 2012

    Hope everybody having a good day. i got my little booklet today with my results. it was like a journel called understanding your pathology report. and she has filled in the blanks of mine is and if gives you info beside it of what it means. very good to have understanding. apparently i had  a DCIS in the situ and they said, though it was contained it was still a high grade as the idc was grade 3, except the idc was in the 12 to 2 oclock area and the dcis was 10 to 12 oclock area. it says the DCIS was pre-cancerous and yet it was high grade weird. the only part i did not get is it said, node involvment, NEG, then how many nodes involved and it said, 0/1. but other than that it was S/Forward really. and the IDC was 11mm and the DCIS was 8 mm. a smaller component.

  • Linda1966
    Linda1966 Member Posts: 441
    edited July 2012

    Kate. Im sorry but I didnt do herceptin and have no idea if your fingers are tingling from that or something else. i hope someone else can answer your question and that your fingers are back to normal asap.

    Midnight, 0/1 means they took one lymph node and the biopsy of it showed it was negative for mestastis - in other words your BC hadnt spread from your breast into the lymphs so it hasnt travelled throughout your body. Its great news lol.

    My dcis was grade 3 too, it just means the growth in the ducts was at the highest speed, but as dcis is contained solely within the ducts, the grade doesnt particularly matter now that your dcis has been found and removed. The IDC grade 3 is the important part because that is invasive and thankfully that too has been found and removed. Youve had surgery, radiation and are on Tamoxifen which is the usual treatment for the size and grade of your BC. If your node had been positive for mestatis or micro mestastis, chemo would have been on the cards. Herceptin was not appropriate because you arent her2+. Thankfully it sounds like you have had exactly the appropriate treatment from your medical team so I hope you can enjoy a bit more peace of mind now.

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited July 2012
    Thank you very much for that info, now i am clear and can start living more peacfully Linda. and all that have helped me. cheers. but i will still be in talking to you all as i enjoy yr company Smile
  • chrissyb
    chrissyb Member Posts: 11,438
    edited July 2012

    Kate that tingling in your last two fingers could be from an ulna nerve entrapment.  Please mention it to your doc .  I had that in my left arm long before BC and ended up having to have surgery to release it.

    Yay Midnight, that report is all as good as it can get and yes you had the appropriate treatment.  Take a big deep breath and begin to live your life.

    I must be getting old!  It just seems that this cold weather is going on and on with no let up in sight.  We only just made double figured again today and the forcast is for the same for the next three or four days.....Brrrrrrr!  Man are we going through some fire wood!.....well I guess it's still a bit cheaper than electricity......lol.

    Stay warm everyone!

    Love n hugs.  Chrissy 

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

    Sorry I haven't been on here for a little while, I've managed to pick up another cold and am feeling miserable.

    Mel congrats on your cancerversary, that's a great milestone.

    Midnight, great news about your path report too, now you can relax.

    I'm going back to bed.

    Trish

    xox

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

    Awe Trish, hope you start to feel better soon.   Wow two colds in such a short time!  I am surpirsed that your immune system is so low.  Stay warm and rest up.

    Love n hugs.   Chrissy 

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

    Hi All

    Well I'm back at work today - feeling just a bit better, but haven't got a lot of sick leave, so have to front up Cry

    Yes Chrissy I'm surprised too - I've been feeling so good lately too.  I never had a cold from the mx until 2 months ago - and my immune system was pretty low during a lot of that time. 

    Hope everyone else has a great day.
    Trish

    xoxo

  • mclark55
    mclark55 Member Posts: 92
    edited July 2012

    AussieKate - I agree with your "froot loops in Colorado" analogy.  The media has picked this up and run with it as you can imagine.  Hey - about the tingling fingers (sounds like it should be a song title), chrissyb has it right - it could just be a nerve entrapment which massage therapy would definitely help.  It could also be neuropathy, be sure to ask your doctor their opinion.

    susieq58 - thanks for the two article links - might just write about that news item on my blog.  Appreciate it.  Lots of good things coming out of Australia.

    chrissyb - I loved your description of getting a new "airer" to put your woolies on by the fire in the lounge.  So Aussie, I loved it.  People here use dryers WAY too much.  It's nuts to throw your sheets in the dryer when it's 38 outside!  Okay, that's my whinge for the day.

    Love to my Aussie & NZ sisters.  Have a great day.

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

    Well everyone is quiet here at the moment, hope that's because you are all hibernating from the cold.

    I'm starting to feel better, which is a relief.

    Hope everyone has a great Friday - oh! and the Olympics start tomorrow!  Just in case you missed the news lol


    Trish

    xoxo

  • kyliet
    kyliet Member Posts: 587
    edited July 2012

    Trish I hope you feel better soon.

    Linda (feels strange calling you that but your reasoning is sound): you gave Midnight a great rundown on her path. report and I am sure it has eased her worries.

    It was by birthday yesterday, 45, goodness the last year had flown by. It was lovely, my companions on the bus organised a cake and candles, chocolate and a present. I was overwhelmed and totally surprised. We had our cake in the treatment waiting room and it was lovely to share with other patients and the breastcare nurses also.

    Only 2 days to go, my skin has held up really well. Finishing is both exciting and scary; now I have to make some decisions about my life after BC. First some recovery time. x

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

    Kylie - Happy Birthday!  It's horrible that you had to spend it the way you did - but how lovely of your companions to organise a cake and presents, what a wonderful bunch of people they are.

    Only 2 days to go - that's wonderful, and I know how much you are looking forward to that ending

    Trish

    xoxo

  • Kate60
    Kate60 Member Posts: 523
    edited July 2012

    Whoo Whoo Kylie! Happy Birthday and it's terrific that you've only got two more to go. I take my hat off to you for all the travelling you've had to go to undertake your treatments. Golly, what will you do with all that (now) spare time on your hands???

    Paul had got his date to leave for the mines. Despite having everything in place (or thinking so) it will be the week I am away too, so luckily I have someone to come in and housesit the hounds. Speaking of which, Jack seems Ok at the moment. We are just watching and waiting and so far he seems really happy. I'm afraid we are so weak with the dogs. We bought them some special diet dog food as they are all a bit too chunky and the vet said they could just eat that, well it lasted 4 nights. In the end they wouldn't even go out for dinner and look to see what was there. We have reverted back to the old ways, but have cut down their portion size but we are including a bit of tinned stuff with it. They are eating and seem so much happier. I'm sure dogs can get depressed. They all looked totally miserable. I'd rather they were a little on the chunky side and happy, than thinner and plain miserable. I apply the same philosophy for myself Smile.

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

    HAPPY BIRTHDAY KYLIE!!!!!!!!!!!!!!!!!



    Glad to read that Jack is doing OK Kate :-)



    Hope you are feeling much better Trish?



    I have an appt with the plastic surgeon on Friday 10 August! If he is happy that I am suitable for implant recon I will have my BMX sometime between late August and the end of September :-)



    Since I finally decided that the risks of rads potentially outweighed the benefits for me I have been desperately trying to make this happen. This has been made difficult because my BS is pregnant and finishing up surgery in September to go on maternity leave. She is an amazing upcoming oncoplastic breast surgeon here in Australia and did a great job with my lumpectomy. She specialises in oncoplastic lumps and mastectomies and also does implant recons but not flap surgeries.



    She was happy to do my surgery but because there is not enough time between now and when she finishes up to complete the fills and exchange for implants she is having to hand over the inplant process to a plastic surgeon.



    So now I have to meet the PS and find out if he is also happy to do the implant route despite me having had 12 days of radiotherapy before deciding not to continue. My BS was happy that I would be OK but the PS (one that is well regarded in Australia I gather) will of course have to make his own decision... If he says no my only option, since I want the BMX soon and don't want flap surgery is to go ahead with the BMX and do recon later...



    I just realistically don't think I would be a good candidate for the flap surgeries. I don't heal well and I scar badly so such huge scars from flaps would probably be a disaster for my body...



    Got to keep up my treadmill exercise and get as fit as possible between now and then!



    Jenn

  • melp27
    melp27 Member Posts: 295
    edited July 2012

    happy birthday tracey!!!!

    let us know how you go Jenn with what you decide. Im only a few weeks from seeing my surgeon again to have my yearly followup mammogram and discuss reconstruction. im probably having a flap recon but im not sure which version. Im excited because the last time i saw him i hadnt finished treatment so we couldnt talk about it but now we can! 

  • mclark55
    mclark55 Member Posts: 92
    edited July 2012

    JennT28 - wow, I feel for you - some difficult decisions you're having to make.  I wonder why you don't heal well - being a body worker, I'm always interested in the "why's".  Any idea?

    AussieKate - I laughed when I read your description of the dogs not even wanting to go check out their diet dinners.  Poor things - I agree, they probably were depressed!  I know how I feel when I've gotta eat something I'm not too enthused about!

    Hey ladies, thanks to the article links to the interesting research news that susieq posted I wrote my blog today all about that: http://marnieclark.com/new-australian-research-aims-to-block-tumor-spread-in-breast-cancer/

    Hope everyone stays well and warm!  Wish I could send you some of our heat!

    xoxox

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