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Maxine

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Comments

  • Maggiemaw
    Maggiemaw Member Posts: 39
    edited March 2015

    No wonder you're feeling flat after such a busy day; put together with anxiety it's a wonder you have the energy to go out.  But having your hair done and a night out hopefully will lift you back up.

    Hope you have a lovely night out with your husband and that your arm doesn't become too painful.

    All the best,

    Maggie

  • Maggiemaw
    Maggiemaw Member Posts: 39
    edited March 2015

    No wonder you're feeling flat after such a busy day; put together with anxiety it's a wonder you have the energy to go out.  But having your hair done and a night out hopefully will lift you back up.

    Hope you have a lovely night out with your husband and that your arm doesn't become too painful.

    All the best,

    Maggie

  • Annette joycie
    Annette joycie Member Posts: 26
    edited March 2015
    Thanks Maggie
    Hair done & feeling half human & on the way to Melbourne.
    Maggie do you get sore feet while being on Tamoxafin? I received good new today. there is not much change with my CT & my Ca.15.3 went down from 223 to 209. So I'm going back on the Afinitor & no chemo. Very excited. My husband & I are working on getting away from Victorias cold weather & heading to WA for 2 months in our new caravan. He has Smouldering Multiple Myoloma & his onc would like him to see a heomotologist. We are trying to talk him into letting him go for 2 months then dealing with it as soon as we get home.. Enjoy the rest of your day.
    Cheers Annette
  • Maggiemaw
    Maggiemaw Member Posts: 39
    edited March 2015

    It's so good to hear your news Annette.  Hope you have a wonderful night tonight.  A trip to WA sounds ideal and if your Oncs both agree sounds like the time to do the trip.  Best to do these things while you are well.  With regard to sore feet - I never had any side-effects from Tamoxifen apart from the odd flush initially but the second round of Tamoxifen no side-effects at all.

    I do suffer with neuropathy quite badly in my toes and balls of my feet which is due to the chemo.  Fingers too but I'm still able to type thank goodness although not as fast as I used to.  My feet do inhibit my mobility and limit the distance I can walk and so much of my time is spent sitting with my laptop on my knee - that's when my lapdog will allow my laptop to take her place!!!  I walked quite a bit the other day and am still paying for it - cold weather doesn't help.

    Have a great time tonight and say hello to my hometown - Melbourne.  Looking forward to hearing the details.

    Maggie xxx

  • Pink66
    Pink66 Dragonfly Posts: 366
    edited March 2015

    I understand the anguish you must have felt being told of secondaries at your 5 year anniversary.  For me it was on the day of my 8th Anniversary Visit Nov 2012 ..(lung, bones, nodes, ovaries)..  and then 12 months later a new primary on the 9th anniversary visit (like the rest was not enough LOL)

    It takes a while and sometimes when you think you have it sorted it can jump back into the front of your thoughts..  But I promise the thoughts will settle and you will begin to think about things in a new and different way.  Just remember, there is no right or wrong it just is :)  (only way I get around it !!!)

    Doing things you enjoy and taking time for you is really really important and helps so very much..  and I have found my local Breast Care Nurse and local support group to be so amazing and helpful..

    If you are interested, I help to facilitate the Advanced BC Group and would be happy to add you into it.

    Sending you huge healing hugs xoxoxoxoxox

    Sharon (aka Pink66)

  • Pink66
    Pink66 Dragonfly Posts: 366
    edited March 2015

    I understand the anguish you must have felt being told of secondaries at your 5 year anniversary.  For me it was on the day of my 8th Anniversary Visit Nov 2012 ..(lung, bones, nodes, ovaries)..  and then 12 months later a new primary on the 9th anniversary visit (like the rest was not enough LOL)

    It takes a while and sometimes when you think you have it sorted it can jump back into the front of your thoughts..  But I promise the thoughts will settle and you will begin to think about things in a new and different way.  Just remember, there is no right or wrong it just is :)  (only way I get around it !!!)

    Doing things you enjoy and taking time for you is really really important and helps so very much..  and I have found my local Breast Care Nurse and local support group to be so amazing and helpful..

    If you are interested, I help to facilitate the Advanced BC Group and would be happy to add you into it.

    Sending you huge healing hugs xoxoxoxoxox

    Sharon (aka Pink66)

  • Desi
    Desi Member Posts: 43
    edited March 2015
    Hi Sharon

    After reading all these stories, I don't feel so alone anymore. My husband and kids are very supportive, but you don't want to complain all the time. I am going to do the things I enjoy most. Would love to travel but will have to speak to the onco first, because of the fluid on the lungs.

    Light & love
    Desiree
  • Beery
    Beery Dragonfly Posts: 64
    edited March 2015

    Hi Annette,  How did you go with your onc, are you now on Xeldo?  Have you been on any other meds, if so what and how long?   Sorry to be nosey but just interested to know what could be down the track for me.  So far so good now that Afinitor has been reduced to 5mg.  Had another UTI with antibiotics given  earlier this week.  I have bone and ct scans towards the end of this month, so will find out then whether this oral chemo has worked at all.  Results will be very interesting to find out because of all the upset with the meds. Onc seemed very pleased last visit with everything except for my blood pressure, which has been playing up since I started the Afinitor.  I said he was the cause (he's a bit of a hunk) as he 'sets my heart a flutter'. See him again in a fortnight before zometa infusion.  I'm realy hoping that the Afinitor is doing its job.  Very interested to hear from you.  Sue:-) 

  • Annette joycie
    Annette joycie Member Posts: 26
    edited March 2015
    I received good news Friday, there is not much change with my CT & my Ca.15.3 went down from 223 to 209. So I'm going back on the Afinitor & no chemo. I started taking it again yesterday and had the usual feeling that my head was in a vice. It feels ok today. I have two more doses of radiation then done with that.
    I have been on Tamoxifin, Aremedex, they probably lasted around 4 years. Previous to that I'd had chemotherapy and Herceptin. You're not being a sticky beak by the way. Always good to have a chat.
    My husband & I are working on getting away from Victorias cold weather & heading to WA for 2 months in our new caravan. He has Smouldering Multiple Myoloma & his onc would like him to see a heomotologist. We are trying to talk him into letting him go for 2 months then dealing with it as soon as we get home.
    Hope I've been able to help you. Don't hesitate to ask more questions if you need too. I've written a blog with my regime of treatment in it. Cheers Annette
  • MaryM
    MaryM Member Posts: 7
    edited March 2015

    I have been reading all these positive thoughts and all the different treatments lots of you have been involved with. I usually just read all the comments and soak up the care you all show, but now I feel the need to add my story.  I had PBC in 2000 followed by the usual regime of chemo, radiation and tamoxifen.  Ten years went by and in 2010 I was diagnosed with secondaries in liver, lymph, bones, lungs.  Whamie x 4!  Over the past four years I've been subjected to various chemotherapies both oral and IV with small breaks inbetween so my body can recover a llittle.  Recently my CT scans showed my liver had blown out of control and my oncologist had very little left in his box of tricks to keep me going.  I think I am now about to embark on my last chemo with 50/50 chance it will do any good at all.

    I am not looking for sympathy, rather empathy and support.  I have a wonderful husband with 45 years of marriage together, two adult children and 5 and 2/3 grandchildren!   

    I had a wonderful 10 years between primary & secondary and a challenging time over the last 4 years.  I am so grateful to my family and true friends.

    As my father always said 'keep on keeping on'

  • Mozzee
    Mozzee Member Posts: 23 ✭
    edited March 2015
    Hi Mary
    So sorry to hear of your next battle. I got my secondary diagnosis after 15 years but I have been very fortunate that it is only in my bone. I am 3 years since and I feel like I have a time bomb inside me waiting to go off. Like you I have wonderful support from family and friends but I must say this site has been a great save for me, even if I Don't comment much. Sometimes it is so hard to "keep on keeping on" but somehow we find the strength. Sending you hugs and rainbows. Kerrie
  • Pink66
    Pink66 Dragonfly Posts: 366
    edited March 2015

    You are in !!!  Welcome to the ABC group :)

  • Pink66
    Pink66 Dragonfly Posts: 366
    edited March 2015

    I was 8 years between and started off with lung, bones, nodes and ovaries..  It is such a shock to discover it so long after the first EBC..  I am sending you huge hugs and have my fingers and toes crossed that your latest Oncology expedition will find the 50% that is good and helpful..

    xoxoxoxox  Sharon

  • Annette joycie
    Annette joycie Member Posts: 26
    edited March 2015
    You are so brave, and have been through so much. You can do it, you are WOMAN and we are so tough. I'll be hoping and praying for you that the Oncologist can give you a great 50 percent.
    Sending you big warm hugs and lots of love. Annette
  • Beery
    Beery Dragonfly Posts: 64
    edited March 2015

    Hi Annette,

    I hope you are going north of Perth as the weather to the south is very cold as well at the moment.  You will enjoy it over there after Victoria.  I lived in Perth for 2 years and enjoyed it while there.  Plenty of places to see. Sounds as tho you both need the break, and I hope your husbands onc gives the ok.  You mentioned going back on Afinitor, will it be 5 or 10 mg this time?.....Sue:-) 

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