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Secondary breast cancer

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  • max1ebob
    max1ebob Member Posts: 13
    edited March 2015
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    I do have my bad days Klea, I try hard to turn them around and it is hard. I think work is keeping me sane at present as I have an office job so I sit most of the day which is handy, though I am going to cut my days down to 4 days a week now. You hang in there too lovey lady 

  • Gaylene
    Gaylene Member Posts: 20
    edited March 2015
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    For those who are interested there is a petition going to change the name of breast cancer awareness month to
    Metastatic & Breast Cancer Awareness Month.


    May need to copy and paste the link to your browser.

    http://www.change.org/petitions/nbcam-collaborating-org-add-the-word-metastatic-to-make-october-national-metastatic-breast-cancer-awareness-month?share_id=MbFJpvUKbL&utm_campaign=share_button_mobile&utm_medium=facebook&utm_source=share_petition
  • Celbird
    Celbird Member Posts: 680 ✭
    edited March 2015
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    Hello max1ebob, welcome to the group that no-one wants to become a member of! You are right, it is a great thing to be positive, but I agree that it is also important to grieve for all the losses that we have. This diagnosis is devastating, but where there is life there is hope, and we must never give up hope.

    I was diagnosed with EBC in Oct 2008 (age 40), and diagnosed with secondary BC in Oct 2011 (age 43), when it was discovered accidentally! They found tumours in both lungs..."far too many to count" they told me. They were amazed at how I was able to breathe! I started on chemo, and then 8 weeks later the cancer had spread to my bones -skull, thoracic and lumber spine, ribs, hip (my right hip was very badly affected) and pelvis. My treatment was changed (new chemo, bone strengtheners and radiotherapy to my spine) and in June this year, after 16 months of chemo, I was told that the cancer was "non-identifiable". There is no sign of any cancer in my lungs, and the cancer in my bones has regressed and is showing signs of healing :) These results were confirmed again in my latest scans in September 2013. I don't know for how long I will continue to get these results, but for now I cherish every moment! Never, ever give up hope! Celeste ?

  • Jenmegs
    Jenmegs Member Posts: 104 ✭
    edited March 2015
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    hello max1ebob, I've only made a few comments here, with Sue and Celeste, and yet i get so much stength in knowing of the women in this group and out there, through all our states of Oz (meaning Australia.... although taking confronting news on board feels like a "land of Oz experience"!!)... I reckon you are courageous in sharing your story. Faith, hope and loving yourself enough to do something.

  • Jenmegs
    Jenmegs Member Posts: 104 ✭
    edited March 2015
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    hello max1ebob, I've only made a few comments here, with Sue and Celeste, and yet i get so much stength in knowing of the women in this group and out there, through all our states of Oz (meaning Australia.... although taking confronting news on board feels like a "land of Oz experience"!!)... I reckon you are courageous in sharing your story. Faith, hope and loving yourself enough to do something.

  • Desi
    Desi Member Posts: 43
    edited March 2015
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    I am so glad i found this site, I had early breast cancer in 2006 and 3months ago found that i had secondary breast cancer. I have a few spots on my lungs, tumors in my spine and pelvis. I am on Aromasin and have a monthy injection of Xgeva. What a scary feeling and here i thought i am in the clear.I am very positive and have alot of Faith. Is there anyone living in the West, I am in Glenmore Park and would love to meet up for a coffee and a chat.

  • Jenmegs
    Jenmegs Member Posts: 104 ✭
    edited March 2015
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    hi there Desi, so glad that you feel some gladness with the site. It's crummy for you having the news about secondaries only three months ago. Such a new time for you, the same as with max1ebob at four months ago....I'm in Victoria, hoping you can find someone, or some people, to get together with close to home. I've found meeting people helps (a cuppa is happeing next week, something too look forward to!) and I've also done a secondaries phone group (you all get dialed in to speak) and that's good too (anything relaxed and low pressure)....Wow max1ebob this is amazing all the responses.....Jenny xx

  • francesca_maree
    francesca_maree Member Posts: 18
    edited March 2015
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    For anyone in Melbourne, or nearby, we have just started a monthly face-to-face support group for ABC ladies at the Think Pink living centre on St Kilda Rd. Dates and times are on the Think Pink website. Meeting people who are going through similar things to you, I've found, is a really great experience.
  • Desi
    Desi Member Posts: 43
    edited March 2015
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    Hi Jenny, it helps so much just reading about all these amazing stories. Everyone is so positive and that is the way to be. I was so scared and still am, did more chest and abdonem scans last week and is seeing my oncologist on Thursday. When I am next in Melbourne I will message you. Cheers Desi xx
  • chrismelb
    chrismelb Member Posts: 11
    edited March 2015
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    Thanks for letting everyone know about the new support group Francesca. Next meeting is Wednesday 20th November at 10.30-12. You can park in a car park around the corner for $6 which basically is the same price as parking on street. Or it is right on the tram line directly from Flinders Street.
    It is a nice comfy place to meet where we are free to talk without others overhearing our often frank conversations. Come along and feel supported.
  • Jenmegs
    Jenmegs Member Posts: 104 ✭
    edited March 2015
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    Hi Desi, sounds good for a Melbourne visit! Maybe a week or two's notice cos I don't check online every day....Good places for meeting (both easy to get to if public transport) are Think Pink (The Living Centre) as chrismelb has outlined above and BreaCan which is right in the city (both centres are on BCNA Online Network)........Hi there max1ebob, this has gone heaps further over the week since you first posted. Really hoping the week's gone alright for you...it's great news you've had specific medical info and some good pain management.....As for positive thinking, I've gone a bit wobbly myself this week (a bit of overload combined with a couple of routine tests)...so I'll logout and get on the phone to one of the hospital's breast care nurses and see if she can find out the timing for test results, so I'm not sweating it out over the weekend!!! Jenny xx :)

  • Daina_BCNA
    Daina_BCNA Member Posts: 796 ✭
    edited March 2015
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    Hi max1ebob,

    I'm a late jumper-in-era onto the end of your post but I hope you have managed to connect up with some of these amazing women who know exactly what you are going through.

    I am not sure if you have come across the online group 'Women living with advanced breast cancer' as yet? But there are close to 200 members living with secondary breast cancer which you can also connect in with. If you think it would help - join the group and make an introductory post - http://www.bcna.org.au/group/4218

    If you need a hand finding your way around just shout ~Daina

  • Daina_BCNA
    Daina_BCNA Member Posts: 796 ✭
    edited March 2015
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    Hi max1ebob,

    I'm a late jumper-in-era onto the end of your post but I hope you have managed to connect up with some of these amazing women who know exactly what you are going through.

    I am not sure if you have come across the online group 'Women living with advanced breast cancer' as yet? But there are close to 200 members living with secondary breast cancer which you can also connect in with. If you think it would help - join the group and make an introductory post - http://www.bcna.org.au/group/4218

    If you need a hand finding your way around just shout ~Daina

  • Desi
    Desi Member Posts: 43
    edited March 2015
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    Hi Jenny, I definitely will let you know in advance. Hope all is well on your side xx
  • Jenmegs
    Jenmegs Member Posts: 104 ✭
    edited March 2015
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    Looking forward to a message on when you might be in Melbourne! Also thanks, things turned out great with the help i had before Melbourne Cup Day, getting an early appointment for the day after the public hol. really helped. Hope things are going alright for you in the early months since learning your news of secondaries. Hugs, Jenny

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