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Australian Sisters

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Comments

  • chrissyb
    chrissyb Member Posts: 11,438
    edited April 2018

    Roo, it's just a couple of us this year but it's all Aussies except for Aly (who is from NZ) but we say she close enough to be Aussie.......lol. In no way would you be intruding, so if you are up for it feel free as we would definitely welcome you. Besides Aly and myself there will be Mandy, who is also stage iv........a very small group this year but that's okay.

    Yeah, Burra is a lovely place to live.......next time you are coming up let me know and we can catch up for a cuppa and a mag.

    Oh yeah, learning about this disease and it's treatments is rather mind boggling but the more you learn the better off you are as you can initiate conversations on your treatment with your docs rather than being just told.

    Thanks Lucy! I'm happy with it, I just hope she is. ......lol.

    Love n hugs all. Chrissy

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2018

    Ok - I'm coming to Adelaide!! I've just booked my flights Happy Chrissy - let me know if I can stay with you guys, or need to book my own room.


    Yay!!

    Trish

    xoxo

  • kanga_roo
    kanga_roo Member Posts: 303
    edited April 2018

    Thanks Chrissy, I think I would like to join you girls if I'm feeling up to it. I will phone you later in the week to get details

  • chrissyb
    chrissyb Member Posts: 11,438
    edited April 2018

    Sounds great Roo. I look forward to hearing from you.

    Triffic news re Trish coming for the weekend! Yay!! I can't wait! There's plenty of room for you with us as Mandy has booked her own room.

    Well the party went well and the birthday girl was very happy with her costume.

    image

    image

    And if I say so myself, I was very happy that it fit!.....lol. I have eaten everything I shouldn't have today and topped it off with home made French Onion Soup with all the trimmings, thick crusty bread and melted cheese.. ....may I say...YUMMMM!!!! Right now I feel like the snake that ate well and needs a nap to digest.......

    Roll on Friday! !

    Love n hugs all! Chrissy

  • aussie12
    aussie12 Member Posts: 421
    edited April 2018

    Hi all

    I finally got out of hospital yesterday and am happy to be home. I had a good nights sleep last night which was great. Silverchain came and did my dressing and will be back on Tuesday to take out my staples.

    I will have to cancel my flights tomorrow (not happy).

    I hope you all have a great catchup.

    Carol

  • wildplaces
    wildplaces Member Posts: 544
    edited April 2018

    Chrissy,

    You are amazing - a young lady that looks very happy indeed!!

    ( French onion soup - yummmm!!)

    Wishing everyone going to Adelaide a very fine time.

    😊🌷🐣

  • wildplaces
    wildplaces Member Posts: 544
    edited April 2018

    For all undergoing treatment

    http://www.abc.net.au/catalyst/stories/4459555.htm

    There is a video YouTube link to this - Heidihill first posted this on an exercise thread.

    I think they are connected to Genesis Cancer Care so a version of ...tailored for you should be obtainable from your oncologist.

  • kanga_roo
    kanga_roo Member Posts: 303
    edited April 2018

    Caught up for a cuppa with some beautiful ladies in Adelaide. Thanks Chrissy, Trisha and Aly for making me feel so welcome. It's a good feeling to know you're not alone and to put a name to a face. These women are a wealth of information and I'm sure I'll be picking their brains more over the journey.

    <BIG HUGS>

    Jackie

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited April 2018

    Jackie ...yay ..sounds great ! I'd of loved to of met everyone !!!!!

  • chrissyb
    chrissyb Member Posts: 11,438
    edited April 2018

    Jackie it was really lovely to meet you! A shame you couldn't stay longer but maybe next year you will join us for the whole weekend somewhere in Oz. Meanwhile feel free to pick out brains and lean on our shoulders......we are never more than a phone call away.

    Well the weekend is almost over......again...... It seems to always go so fast! Once again It has been fantastic catching up with Mandy, Aly and Trish as well as getting to meet Jackie. As we say our goodbyes in the morning I at least get to spend a few more days with Aly as she is travelling home with me to stay........yippee!!!

    Thanks lovelies for a fabulous time!!

    Love n hugs to all. Chrissy

  • Alyson
    Alyson Member Posts: 3,737
    edited April 2018

    Morning all. It’s the Kiwi here. We have had a great time in Adelaide. We have laughed and talked and eaten too much which has made for the best of times. It is over too early.

    Lovely to meet you Jackie. Hope you can join us next year.

    Big hugs to al

  • kanga_roo
    kanga_roo Member Posts: 303
    edited April 2018

    I’m definitely up for next year, would have liked to have spent more time with you all.

    Good news today! My CT scan shows a 50% reduction in my breast and liver Mets, so Kisqali is working well. I’m into my 3rd cycle and my wc count and liver stats are good too. I am luck to not have any side effects besides lethargy and hot flushes, but I can live with that.

    BIG hugs to all

    Jackie

  • chrissyb
    chrissyb Member Posts: 11,438
    edited April 2018

    Fantastic news Jackie!! That's the news we all love to hear. Oh yeah, hot flushes are horrid but if that's the worst se from your treatment that's a real bonus.

    I think Melbourne will be next year so start saving your pennies girls! I will be away from second week in March to end of April so have to work out dates or miss the next one.

    Fabulous weekend all round but am now pooped......lol.

    Love n hugs. Chrissy

  • wildplaces
    wildplaces Member Posts: 544
    edited April 2018

    Brilliant Jackie!!!

    😊🌷

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2018

    Hello all!

    Yes - we did have a fabulous weekend, it was great to catch up again. And so lovely to meet Jackie.

    Jackie that's wonderful news! I'm so happy for you - keeping you in my thoughts and praying the good news keeps up.

    I saw the onc yesterday - he's happy with me ... mostly .... but really wants me to go back on some sort of tablet for the ER+ part of my first go round with bc. I've promised him that I'll think very seriously about going onto Tamoxifen. He seems to think it will agree with me more. So - perhaps I'll try it. I see the rheumatologist tomorrow, so will wait to see what he wants to do about my arthritis before I make a decision.

    My work is about to get a lot busier, I think. Decisions handed down by the Fair Work Commission appear to go in a direction that will need a project manager for many, many months to come, and a lot more work. I'll know more later today once we've had a chance to digest it all and start to plan a way ahead.

    Trish

    xoxo

  • mandymoo
    mandymoo Member Posts: 632
    edited April 2018

    Hello girls, I thought that I had better say hello. Thank you for organising the weekend, Chrissie. I really had a great time and it did me the world of good, I had a wonderful time.

    Jackie, I hope we get a chance to meet soon too, otherwise I hope to catch up with you next year in Melbourne with all of the others.

    I have been keeping myself busy with grandchildren, school drop off and pick up and being the taxi to take them to dance classes and play dates.

    The days that I don't have the grandchildren are taken up with going to the pool as I find that it helps with my lymphedema and pleural effusion.

    As some of you may know, I have ad progression again in the lungs and abdominal fluid among other mets and my oncologist has put me back on to Xeloda..... Yay!

    I saw my oncologist again yesterday and he considers me "stable" as there has been no progression since starting Xeloda. In fact, a reduction in my pleural effusion and abdominal fluid. Scans again in 3 months as there is something suspicious in the original breast area which does not look like a local recurrence but it has grown since the last scan 6 weeks ago and it is very dense????

    School holidays have started this week, so I am off to the shops to buy toothbrushes, food and treats for the grandies, as they will be coming over for a few sleep overs starting tomorrow.

    it is great to hear all positive news from everyone, and I hope we continue on this path.

    Hugs to you all, and you are always in my thoughts.

    xxxxx

  • aussie12
    aussie12 Member Posts: 421
    edited April 2018

    Hi all

    I'm feeling a lot better, eating more and more energy. My bowel is better as well, I have been going to the toilet about 12 times a day but the last few days has become more normal. I see my Surgeon in 2 weeks then have a PET scan, I should find out after that about my chemo.

    I also have my mammogram on the 14th May.

    Glad that you all had a great time in Adelaide. I got my refund for the hotel and just about to fill in the paperwork for my insurance claim on my flights.

    Carol

  • chrissyb
    chrissyb Member Posts: 11,438
    edited April 2018

    So glad you are feeling so much better, Carol. Keeping my fingers crossed that your PET is clear.......also your mammo. You sure have been through some crap but hopefully you are on the up side now.

    Really great that you got your refund for the hotel and that the insurance covers your flights......I'm assuming that it's travel insurance. Anyway, you have a great start towards next year in Melbourne.

    Mandy, it's really great news on your scans and hopefully the thing in your breast is nothing nasty......maybe just a cyst? Anyway, keeping fingers crossed. Have fun with your grands but don't wear yourself out.......sure, sure I hear you say.......lol.

    Aly and Cunny left this morning.........it was so lovely to have them here even if it was only for a couple of days.

    Well, time for this little duck to hit the hay.

    Love n hugs all. Chrissy


  • Delvzy
    Delvzy Member Posts: 454
    edited April 2018

    Hi girls I have been missing in action as well. Just found out today my TM's have risen to 270 and have been that since last Nov. my hemoglobin has dropped to 87 from 17 months of been 120 so I really don't know what any of this means. Been freeking out reading the internet on internal bleeding and cancer in the bone marrow. My iron is high but I have had all the symptoms of low hemoglobin like fatigue jumpy painful legs and shortness of breath. My bone and CT scans were all showing no progression 3 weeks ago. I am teary ,. panicked and very depressed . The onc istalking about rerunning scans before I see him in early May. Has anyone else heard of any of these symptoms?

    ?




  • Delvzy
    Delvzy Member Posts: 454
    edited April 2018

    Aussie thinking of you. Chrissie that owl is magnificent xx


  • wildplaces
    wildplaces Member Posts: 544
    edited April 2018

    Delvzy

    I am sorry you are dealing with this.

    Chrissy and everyone else are wiser at knowing what to say so I am hoping 😊they'll come along soon.

    From thenerdy person me ....

    This might be worth keeping on eye on if you are not getting one through trial.

    Palbociclib ( Ibrance ) has just been approved for ER +Ve disease as a first ( that can be ...) option in combo with AIs if the minister approves it. The ministry usually approves following PBAC. My understanding is - it's a good drug for bone.

    The big thing is that PBAC pushed it through to Positive Recommndation on PBS - this was the big hurdle we were stuck on for last three or four submissions. it got TGA approval, but no PBS, so one could have accessed it for about $5000 a month - ha!

    image

    Also watching with interest the progress of Keytruda - it's been extended from melanoma stage 4 to lymphomas on PBS so if the data is strong on combo immunotherapy plus CDKs - you never know we might see it in the BC arena. The door is open.


  • wildplaces
    wildplaces Member Posts: 544
    edited April 2018

    It usually goes through pretty quickly once PBAC speaks.

    (And Trish was right a little while back - something is happening on Canberra because some good stuff made it through this round of submissions and there was publicity on it.)

  • Delvzy
    Delvzy Member Posts: 454
    edited April 2018

    I have heard there is a compassionate trial?? Wild places thanks for caring

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited April 2018

    (( Delvzy )) sorry to hear you are going through such an awful patch ...hope you can get relief soon ..

    Carol ..hope all goes well with your PET scan and mammogram !!

    Mandy..I've been busy with the grand-kids over the school holidays too ...it's been great fun ..but very hectic ...!!!! 🤗

    Hugs to all


  • surfangel
    surfangel Member Posts: 3
    edited April 2018

    CDK’s now on the PBS

    https://www.smh.com.au/politics/federal/government-subsidises-two-5000-month-breast-cancer-drugs-20180420-p4zaur.html

  • wildplaces
    wildplaces Member Posts: 544
    edited April 2018

    Surfangel,

    You are one step ahead of me - I knew PBAC approved, clearly the last ministry step was super quick.

    GREAT!!!

    Delvzy - should it turn out that you need them - you should should be able to access both - Ibrance ( Palbociclib) being the more established with more data behind it - but I am NOT an onc - just ask if they are appropriate for you. I have a feeling you asked me about Ribociclib ( Kisqali) in earlier post ...but I might be muddled.

  • kanga_roo
    kanga_roo Member Posts: 303
    edited April 2018

    Surfangel, so wonderful to hear CDKs are listed on PBS now - it will make an amazing difference for so many bc sufferers. I am on the Kisqali (ribociclib) trial and can't speak highly enough of it. Less than 3 months and my cancers have reduced 50%

    Delvsy, hope this is good news for you and things work out for the better.

    I've weaned myself off the Effexor and have 100% more energy... I can always go back on it if the hot flushes get too much, but so far so good.

    Hugs to all

    Jackie


  • Delvzy
    Delvzy Member Posts: 454
    edited April 2018

    Jackie good to hear that your cancers have reduced so much. The low hemoglobin makes me feel like crap fatigue breathlessness and jumpy sore legs.


  • Delvzy
    Delvzy Member Posts: 454
    edited April 2018

    Jackie good to hear that your cancers have reduced so much. The low hemoglobin makes me feel like crap fatigue breathlessness and jumpy sore legs.


  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2018

    Hello everyone

    Sorry I've been MIA lately too.

    Delvzy - sending you (((hugs))) I hope you get some answers soon. I don't have high tumour markers, but I do have shortness of breath, fatigue and my haemoglobin is also low (not as low as yours though). Mine turned out to be damage to my heart from epirubicin in the first lot of chemo 7 years ago, and Adriamycin 2 years ago.  I have restless leg syndrome (also from chemo) and it's so bad that magnesium alone doesn't help. I'm now on relatively low doses of Sifrol and that helps enormously.

    Wildplaces - I love that you are a nerd!! :-)

    Now - the reason I've been MIA. Hubby had his hip replacement surgery on Monday and he's doing well. The Prof said the surgery went well and x-rays shows the new hip is where it's supposed to be (whew!!). He's getting there slowly, and they had him out of bed on Tuesday and he did a short walk. Yesterday there was hardly any staff on, and when I went in he was a bit out of sorts. They'd told him (apparently) four hours previously that they were going to take his catheter out and shower him. He wasn't happy that he was still waiting. So I stirred up the nursing staff (felt a bit guilty as they were pretty busy - but it's a private hospital and they should have enough staff on to cover the patients) and they took his catheter out - and I showered him. 

    They'd been saying he was going home on Friday - I couldn't see that happening yesterday - he was going fairly well, but really shaky on his feet (even with a big walker thingy) and his blood pressure is still low (it was 90 over 50 just after the op) now around 90 over 55. Will be talking to the hospital today to see if he will be going into rehab (it hadn't been mentioned before). Unless he makes a miraculous improvement today - there's no way he could even get into the car to go home, let alone get to the loo and shower on his own.

    Anyway - enough of my problems, which are pretty minor compared to you guys.
    Trish

    xoxo

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