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

    (( Chrissy )) ..so sorry to hear your news .I hope you are back dancing with NED very soon .

    traveltex..thanks for sharing your photos ..and congrats on your scholarship !!

    Kanga ..great news on the scans and bloods !!!!!

    Carol..hope you are feeling better , and all goes well with the chemo .

    Trish ..great news that Bob is doing so well !

    Hugs to all

  • AllyBee
    AllyBee Member Posts: 99
    edited August 2018

    Hello fellow Aussies,

    Sorry if this is not the appropriate thread. I've recently been diagnosed stage IV and while I like my oncologist, I really want a second opinion to make sure I'm on the best treatment possible. I live in regional Qld and really only have access to two oncologists. I will be in Brisbane/Gold Coast in October and was hoping to arrange to meet with another oncologist while there.

    Can anyone in Brisbane recommend a fantastic oncologist?

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

    Hi AllyBee, welcome! Sorry, can't recommend anyone in Brizzy as I live in country SA. Where are your mets? and what treatment has been recommended for you.

    I'm a stage IV bone mets girl, progression dxd on Monday.

    Love n hugs. Chrissy

  • AllyBee
    AllyBee Member Posts: 99
    edited August 2018

    Hi Chrissy,

    Sorry to hear about your progression, I hope your next treatment stops it in its tracks.

    I had one brain met which I've had removed via crainiotmy and I still have one lymph node under my arm that shows on a pet scan.

    I've started on carboplatin gemcitabine combo but have only done one treatment so far. My oncologist has said that if this chemo shrinks my lymph node we might remove it surgically. My lymph node was only 3mm x5mm, so I'm not really sure how much smaller they could expect it to get. I'm OK with it staying there for now so we can see if the chemo has any effect.

    Ally

  • wildplaces
    wildplaces Member Posts: 544
    edited August 2018

    Chrissy,

    I am sorry to read about your progression - great instinct on your onc to check - you are in good hands there, let's hope Femara works swiftly.

    Ally,

    For a second opinion in Brisbane I would try A/Prof Nicole McCarthy, Wesley. She has access to a number of trials which would make it a reasonable person to access while keeping a good relationship with your current local oncologist.

    I am on the GC. PM me if you have questions.

    I read even if I don't always post - hugs to all,

    😊🌷

  • AllyBee
    AllyBee Member Posts: 99
    edited August 2018

    Thank you Wildplaces, that is exactly what I'm looking for. I'm in Mackay and our hospital doesn't have a trials program. While I feel like my oncologist does her best to look into trials for me, because it's not something she's involved with I worry I may miss out on something beneficial.

    Thank you for your help 😊

  • Delvzy
    Delvzy Member Posts: 454
    edited August 2018

    Chrissy what s bummer I hope that Letrozole kicks cancers butt soon.

    Carol glad u are feeling better.

    I feel a little nauseous on the chemo tablets I think I would prefer to go back on Extremestene but I am not sure if it caused the lung inflammation which caused the pneumonia, At least I didn't have this low grade nausea all the time

  • aussie12
    aussie12 Member Posts: 421
    edited August 2018

    Hi all

    Chrissy sorry to hear your news, hopefully they can get it under control.

    I've got my chemo pump on and have felt tired today, the pump is off tomorrow.

    I'm looking forward to the sunny weekend to do my front garden, it's been looking crappy for ages. I've done heaps of weeding over the last few weeks so now I'm going to replant etc.

    Carol

  • kyliet
    kyliet Member Posts: 587
    edited August 2018

    Hi everyone,

    Sorry I haven't popped in for awhile. My sister died, TIAs and heart, she was 55, so it has been difficult. Then my FIL had several heart attacks and is still in hospital, so things have been busy.

    Chrissy, really sorry to hear of your progression, I hope you get some relief from your pain soon and your meds start working quickly.

    Trish, I am glad your hubby is recovering, and congrats in the job.

    Carol, wishing you a smoother next treatment (hugs)

    Delvzy, I hope your new meds treat you well. A question: Are you allowed to drive on the oil?

    Ally Bee, Lucy, Wild Places, and everyone else, sending hugs x

    Kylie xxx

  • aussie12
    aussie12 Member Posts: 421
    edited August 2018

    Hi all

    Kylie, sorry to hear about your sister, 55 is very young. I also hope that your FIL is improving.

    Carol

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

    Hello everyone

    It's been very quiet on here.

    How is everyone?

    I'm well, no major problems, and Bob is getting better each week. He's started going back to all his pre-operation activities.

    Trish

    xoxo

  • AllyBee
    AllyBee Member Posts: 99
    edited September 2018

    Hi Trish,

    Nothing much new to report for me, hoping for a good platelet levels on my blood test today so I can do chemo tomorrow. Feeling pretty healthy at the moment Smile

    I'm glad you're doing well.

    Trying to be more active on the boards instead of just stalking haha

  • Delvzy
    Delvzy Member Posts: 454
    edited September 2018

    Hi Girls , Kylie so sorry sbout your sister 55 is very young. Chrissy I keep thinking of you and hope u are doing ok.

    New meds or something making me extremely tired atm and I am sharing my phone with my 15 year ok'd don atm as the other iPhone got washed


    Thinking of you all

    Love Jude

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

    Hi all! I'm doing fine right now although the Femara se's are kicking in......damn it!....lol. Right now I am sitting in my niece's lounge on the Sunshine Coast.......can I say it's beautiful weather here?......well yes I can coz it is. 😁 It's been mid twenties since I arrived last Friday and I'm hoping it will stay much the same until I leave on Saturday. Yes,yes, I know, I haven't been home much this past month so I'm really looking forward to being home for a few weeks before both hubby and I head off to Tazzy for a week at the end of October. That will be the last bit of travelling around until March next year then we head over to England and Holland for seven weeks.

    Trish, it's good to hear you are well and Bob is really getting back to where he was minus the hip pain.

    AllyBee, goodluck with your chemo and I hope you stay feeling well.

    Jude hope it's only the meds causing the tiredness and as your system gets used to them that it passes. Sorry, I did a grin to myself when I read that your son's phone got washed......hope it wasn't you who did the washing......lol.

    Take care all!

    Love n hugs. Chrissy

  • moderators
    moderators Posts: 8,637
    edited September 2018

    chrissyb, so glad that you are able to get rest, and have fun traveling. We were sorry to hear about any progression.

    kyliet, you have our sympathies regarding your sister. Very young. We are so sorry!

  • mandymoo
    mandymoo Member Posts: 632
    edited September 2018

    hi Girls, sorry i have been missing in action a bit, but I find it easy to write positive things and I have trouble with negative things. But here goes...

    I will be going on to Fulvestrant ( I think) next week as there is more progression again in my lungs and my spine. So this will be the third change of treatment for me this year. I preferred not to go on to Eribulin as my body is very tired from all the side effects from the previous chemotherapies and I asked for something that would not affect the abdominal gastro side of things.

    I am still going to go on to the trial, but we want to wait until after Christmas as there will be so much toing and froing to the hospital and lots of stays as well. I agreed to that. The cancer appears to be slow growing and except for shortness of breath and some discomfort in my rib and shoulder blade area, I feel pretty good.... but in saying that, I am also sooo over it.

    I am still very busy with my grand children and they are my distraction and my comfort. They love coming over for sleepovers and I have only refused them twice due to my fatigue.

    Anyway, we must keep plodding along. There are lots of people much worse off.

    I enjoy reading all your good news and I am so happy that Bob is going well and the same for you Trish, as you have had more than your bad luck and moved on.

    Hugs and love to everyone. I really enjoy reading your posts and my heart goes out to you all, especially Kylie., my thoughts are with you...

    Warm hugs

    Mandy

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

    Ally - great to hear from you, and that you are feeling well at the moment.

    Jude, sorry your meds are making you tired, but I too had to laugh at washing the phone!

    Chrissy - I know you are enjoying yourself ;-0

    Mandy - ((((hugs)))) what more can I say - you are constantly in my thoughts, I'm so glad your grandkids are a comfort to you. Wish I was closer so I could just give you a big hug xoxoxo

    Trish

    xoxo

  • Delvzy
    Delvzy Member Posts: 454
    edited September 2018

    $140 later iPhone survived and was repaired. Chrissy tiredness is from my bone marrow cancer cells causing hemoglobin and platelets to drop which is why I have 2-3 bags of blood every 5 weeks. Going on a South Pacific cruise on 23 Sept for a week so looking forward to warm weather

    . Chrissy I desperately want to cruise Croatia and spend 2-3 days in Paris, Istanbul and Venice but I am scared of travelling such a long way and the pain and tiredness that goes with it

    So glad u are doing well


    Love to all Jude 😘


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

    Judy, travelling tires me as well so I miss out on some stuff. Your circumstance is a little different I know but I'm sure you would cope for a couple of weeks.

    Well if it doesn't rain it pours. I has my appointment with the Opthamologist today and I am now booked in for cataract removal on 4th October.........thank you Femara. Left eye first then we'll see...(lol pun not intended)....how the right one adjusts as it's not as bad as the left but will need doing at some point. Other than that I'm meeting all my old side effect again, you know, head full of cotton wool and balance issues.....feeling a bit drunk without the pleasure....blah!.......dry skin......blah!......feet that feel like they have broken into a million shards of sharp glass.......you know, same ol' same ol'......lol. I will survive......well for a long time yet so I'd best get used to them.😁

    Hoping you are all doing well.

    Love n hugs. Chrissy

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

    Chrissy I had cataracts done when I was in my late 40s. The Ophthalmologist was very surprised as that's fairly young to have cataracts, but my mum and dad both had theirs done in their 40s too, so as they say the apple didn't fall far from the tree.

    I was extremely short sighted in my left eye - so bad I couldn't even see the chart, let alone read any letters on it, and the Ophthalmologist told me he couldn't bring that eye back to zero (20-20 vision) as my brain wouldn't cope with it. He was right, he brought it back to -2.5 and my brain had a very hard time coping with that change. A year later I had my right eye done, and that eye was slightly far sighted, which meant I didn't have to wear glasses all the time. There's no guarantee when they put the new lens in that you will have 20-20 vision, and once my right eye settled down, it was slightly short sighted, and now I have to wear glasses all the time.

    I was not impressed - but it's not anyone's fault, just the way your body adjusts to the new foreign object in your eye! I'm only telling you this, in case you think you can throw your glasses away once you've had the op. You may very well be able to, but there's a chance you may not too, and anyone who tells you otherwise (ie the specialist) isn't being honest.

    Trish

    xoxo 

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

    Thanks Trish, I knew that. All I want from the surgery is to be able to see clearly with or without glasses.......right now the vision is very blurry and there is no more adjustment left for my glasses. I don't trust my vision for taking and editing my photos so haven't even completed my sister's wedding pics.......thank goodness she is patient and understanding.

    The Opthamologist did tell me that I will still need glasses for reading and close work and that is fine as I've had glasses for that since I was fourteen but my distance vision should be better and way clearer. I was always long sighted.

    Woke up this morning with the start of a whopping cold sore under my nose......bugger! I hate those things and I haven't had one for seems like forever but this one feels like it may make up for all the ones I missed......lol. Today will be a day of ointment application to the area to try to kill it off before it gets too bad.

    Take care all.

    Love n hugs. Chrissy

  • Delvzy
    Delvzy Member Posts: 454
    edited September 2018

    gosh Chrissy u are going through the motions are you?? I am on a mild chemo tablet and so far it's going quite well with the marijuana oils.

  • aussie12
    aussie12 Member Posts: 421
    edited September 2018

    Hi all

    I had my last chemo yesterday, I have the pump taken off tomorrow. Then I'm back at work next week fulltime. I have a CT next week then see the Oncologist the week after. I will be happy when it's all over and hopefully back to normal.

    My sister has just sold her home and moved in with me yesterday, it will be strange having someone living with me.

    Hope that everyone is well.

    Carol

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

    Yay Carol!!! Good that you are done with chemo.......now for the healing and moving on. Great news about your sister moving in with you and yes it will be strange for a while but I'm sure you will appreciate the company.

    I'm doing fine, still learning to cope when the cotton head days but they are not as bad as they were so that's a good thing. Heading down to the city next Wednesday afternoon to prepare for cataract surgery on Thursday. Arie is taking me down and picking me up on Friday as I am unsure if I'll be able to drive so I'll be staying with my sister and she is going to take me to the hospital and pick me up.

    Hoping everyone is doing okay.

    Love n hugs. Chrissy

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

    Yay Carol!! Now onto getting your life back to "normal". Having your sister living with you will be strange to start with, but it's lovely that you will have someone with you too. 

    Chrissy - I'm sure all will go well with your cataract surgery. You'll be able to see much better afterwards. 

    I'm doing ok - my back is giving me hell at the moment, but that happens regularly now. I've sort of learned to live with it lol.

    Hope everyone else is going well too.
    Trish

    xoxo

  • aussie12
    aussie12 Member Posts: 421
    edited October 2018

    Hi all

    I saw the Oncologist today and got the all clear from the CT scan, no cancer. I don't need to go back to the hospital until January.

    Chrissy I hope that your feeling better after your surgery.

    Carol

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

    Yay Carol, that's great news!!! So happy for you.❤

    I'm good, thanks for checking. The eye is still quite bloodshot and irritated but I can see clearly with that eye so that's a good thing....😁 The next one gets done on the 8th November but in the meantime while I wait, I found the contacts I got a couple of years ago (they are still in date) and am wearing them in the non operated eye. It's nice to be able to see.....lol.....but old habits die hard as I sometimes forget at bedtime and try to take the non existent glasses off....😂 Feeling pretty good overall, the head full of cotton comes and goes which tells me the longer I'm back on the Femara the better it will get.....I hope.😁

    Hoping all are well and giving that thing called life a run for its money.

    Love n hugs all. Chrissy

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

    Carol..great news !!

    Chrissy ..good to hear your ops gone well ..and the Femera side effects are improving !

    Trish ..is your back feeling better ?

    Hugs to all

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

    It's great to hear all the good news! Carol, I'm so happy for you.

    Chrissy, I was only thinking of you this morning and wondering how you were going. Yay for being able to see lol. Now - with the Femara woolly head, don't forget to put those millions of drops in your eye each day!

    Lucy, thanks for thinking of me. My back is better, but touchy. I have to be careful not to turn the wrong way, or misstep as it is easy to end up in pain. But I think that's life now :-) How are you going?

    Trish

    xoxo 

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

    Trish, glad to hear your back is feeling better but what a bummer that you have to be conscious of your movement constantly. Sure hope there can be some improvement in that area.

    Talking of forgetting, the drops are all okay but I have forgotten to take all my pills on two occasions.....😲 I must admit that that happened on a couple of days when my 'normal routine ' was interrupted.......lol. Well, the next few days will be spend slaving at a hot sewing machine.......I promised to make costumes for my great granddaughters for Halloween and seeing as we are off to Tassy next Saturday a.m. I'd best get 'em done.

    Love n hugs all! Chrissy

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