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

    Merry Christmas everyone!

    I'm a bit late, but have been busy cooking and just general stuff.

    Chrissy - so glad you are getting some relief from the rads, will you have more rads? Not so good about the holdup for the Xgeva though! I had a similar problem for my first round of chemo the last time. I waited for over three hours before they actually started the infusions - for the dr to sign off on it. I was not impressed either. You'd think they would be more organised.

    It's been hot here too - yesterday was 33, today is 35 and tomorrow and the rest of the week is supposed to be around 38! Thank goodness for air-con.

    I will be having my genetic testing done, as soon as I can organise myself to go into the cancer centre to have a blood test. I didn't have enough points on the first time the girl put my stats in for medicare to pay for the testing - I was one point short, so she used another scoring system, and I was double the amount that medicare requires. Go figure.

    My DH has now been to the ophthalmologist (he only got a conditional medical certificate to have his driver's license renewed) and while the vision in his left eye is almost non-existent, his right eye is ok. So he can drive for 12 months. He has a macular edema in the left eye - we knew about it, but he hasn't kept the scans up to see how it's progressing. He doesn't want treatment for it - and it won't affect his health to do nothing, so I have to respect that. It's his eyesight.

    Apart from that, everything here is going well. My iron levels are coming back up so I have more energy, which is good.

    I hope you all have a wonderful break, and also want to thank you all for your friendship and support, you are all an amazing group of women.

    Love

    Trish

    xoxo

  • wildplaces
    wildplaces Member Posts: 544
    edited December 2018

    i found this to be a good summary of future directions with CDKs

    https://onlinelibrary.wiley.com/doi/pdf/10.1111/aj...

    (for those interested i really liked bestbird sum up postof Asco 2018)

    😊🎄🐣

  • SuefromSydney
    SuefromSydney Member Posts: 111
    edited December 2018

    Happy Boxing Day to all! And may Christmas joy and blessings follow each of you all year

  • Delvzy
    Delvzy Member Posts: 454
    edited December 2018

    Hi Girls I hope u all had s nice Christmas. I need a blood transfusion and they are giving me an MRI Thursday 3 to see what this painful nerve and severe numbness in my jaw is doing. I am absolutely terrified of what's going on


    Hugs to all and glad Chrissy you aren't in pain any more

  • 70charger
    70charger Member Posts: 591
    edited December 2018

    Long shot, looking to find relatives down under. My daughter is hoping to travel there in May & would like to meet up with any relatives. Here is what we know

    Hi, you were wondering about the Australian Gibson's so here is what I had found out, mind you this was all quite a while ago. Agnes Tannock Gibson , known as Nan, was grandpa Gibson's youngest sister born April 10; 1899 and died June 1, 1986, at Tare, New South Wales, Australia.
    in 1928 she lived in Thames, Waikato, New Zealand, so she emigrated there fist. In 1943 she lived in Robertson or Hornsby, NSW, Australia. Her last address was Box 36 Piliga, NSW Australia.
    She married William Thorne (1888–1959)
    she had 3 children,
    Mary Hood Thorne (1924-2008) she married Robert M Smith
    Wilma Thorne married Daniel Fitzpatrick
    Nance Tannock Thorne married William Cousins
    I believe descendants are living in NSW still

    Any help would be appreciated, Thanks a whole bunch, Hugs Fran

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

    image

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

    Happy New Year ! We went to an Indian restaurant last night with friends , then watched the fireworks across the bay . It was such a nice night .. hope you all enjoyed your evening .

    Wishing everyone health and happiness for 2019 ..Hugs to all .

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2019

    Happy New Year all!! Hopefully 2019 will bring good news, health and happiness all round.......we all deserve it.

    Hi Fran, great family history you have there but unfortunately I can't help you expand it any further......maybe some one from that part of Aus will. Good luck with your hunt.

    My year of medical chit begins tomorrow, I'm booked to see the onc and get my next Xgeva shot, then next week Wednesday I see the rads onc for a check up in the morning then in the afternoon I see the Opthamologist to get the final polish of my lens to sharpen things. Apparently it is done in clinic and I only have to sit for an hour before I can drive again.

    On a better note, we are pretty well organized for out trip.......OMG! it's only 8 weeks away and I know they will just fly by.

    Love n hugs to all. Chrissy

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2019

    Well the verdict is in and I start Aromasin (Exemestane) and Affinitor ( Everolimus) as soon as my local pharmacy can get it in. I bought some gel cap to pop the Affinitor in so it doesn't touch the inside of my mouth in the hope I can try to keep the ulcers as bey.......not sure it will work but it's worth a try. I basically opted for this combo due the the ease of transportation. The onc was pushing for Faslodex but that really would be a pain in the ass (yes, pun intended) for when we are away during March and April as it has to be kept cold so not such a good traveler so I've opted to leave that one on the shelf for now. I get to see the onc again in three weeks just to see how I'm tolerating this new combo.

    Ho hum........here we go again on a different merry go round.😁 Hope the ride is an easy one.

    Hoping you are all well rested and doing well.

    Love n hugs. Chrissy

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2019

    Chrissy, sending you lots of ((((hugs))))  I hope the Afinitor is gentle on you and works well. Did you take Aromasin before?

    We are all melting here and looking forward to Sunday when the temps are supposed to be cooler.

    Trish

    xoxo

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2019

    Trish, I've done Arimadex and Femara but not Aromasin so both these are totally new. The Pharmacy rang just a little while ago to say they will both be in tomorrow afternoon so Saturday is 'the' day.😁

    As far as the weather goes, I feel for you.......not much better here but luckily we will get a break on Saturday when the temp will only be around 25........yay!!!.....unfortunately it's not going to stay there as the temps are said to start rising again on Sunday. Whom ever invented summer is quite welcome to scratch the experiment as far as I'm concerned........lol.......if only.

    Stay cool the best way you can.

    Love n hugs. Chrissy

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2019

    Chrissy, I did Aromasin for 3 1/2 years and it was the one that was the gentlest on me - until the thunderclap headaches started lol. I hope that it's gentle on you too. Yes, I had aches and pains, but not as bad as Femara. I also had a brain on Aromasin (and Femara but not as much). Arimidex was a disaster for me.

    Let's hope Aromasin gives you many, many years Heart

    I'm looking forward to Sunday which is when our temps are supposed to cool.

    Fran - sorry, I can't help with your family history, good luck with the search!

    Wildplaces, I meant to say a lot earlier - great article! You come up with the most interesting things to read - please keep them coming :-)

    Trish

    xoxox

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2019

    Trish it's not the Aromasin that will be the problem, as you say, very similar to the other two AI's but the list of se for Affinitor, particularly if there are other issues etc. Seems to be a bit daunting so I guess it's a just wait and see thing.........the next few days will start to tell the tale. Anyway, I'm keeping everything crossed that I get a smooth run....... you never know miracles do happen.😁

    Wildplaces, ditto what Trish said.......keep 'em coming.

    Trying to stay cool, hope everyone else is doing the same.

    Love n hugs. Chrissy


  • mandymoo
    mandymoo Member Posts: 632
    edited January 2019

    Hi Chrissie

    I did Affinitor and Aromasin combo for about 18 months and I was on it when we last met.

    Mouth ulcers, yes. That was my problem for the first few months. In the end my oncologist prescribed me cortisone or steroids (I can't remember exactly, what they were called, but if you said the name, I would remember lol.). I had to crush the tablets and mix them up in water and gargle. Apparently you can get this mixture overseas already made up as the tablets do not dissolve in water at all. I still have a little hole in the roof of my mouth from one of the ulcers, and that is over 2 years old. It doesn't bother me at all though, I just know iti is there.

    I had quite a few gall stone attacks whilst on this combo, and also diverticulitis..... no problems now that I am on Fulvestrant.

    I also developed high blood pressure after about a year and that is also a common side effect for long term use, so I went on low dose high blood pressure tablets. I am happy to say that my blood pressure has now gone back to normal and I have been off the blood pressure tablets for almost 4 months now.

    The mouth ulcers went away after the first 6 months, nails were more brittle and my skin was dry on this combo.

    It is managable, so good luck, I hope it kicks butt.

    Hugs

    xxxxx

    ps, I forgot to mention that I am on Faslodex since September/October and my oncologist was so happy with the results mid December. He said they were one of the best responses/results that he has seen in his lifetime!! (I will take that). Anyway, he had just returned from San Antonio and he wants me to add Kisqali to it, but it will cost me $5000 per month as it is only on the PBS scheme as first line treatment for mets, bad luck for second and third and fourth line treatment... I might be able to get it for half price under compassionate grounds, so that brings the price down to about $2.500 per month, (yeah right.... on a pension.... and I am not going to sell the house etc). its the principle. it should be equal for everyone.

    the reason he wants to add Kisqali is that in America it hal already been proven to extend lifespan by more than a year (12 months on Faslodex alone and 25 months on the combo). So I am lobbying to get this through Parliament hopefully when they meet in February to be addressed when the Pharmaceutical Advisory Board meet in March.

    So If you hang on for a while, and stick with the AA combo (mine lasted 18 months), then, hopefully Fulvestrant and Kisqali or another CDK inhibitor will be included on the PBS. Apparently Kisqali has shown better results than Ibrance and I am still looking at Vernuzio.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2019

    Thanks Mandy, good information. I already have raised blood pressure and cholesterol thanks to the Femara and am on meds for them and I'm Factor Five Leiden so that puts me at a higher risk for that little group of se.......we shall see.

    Yes, I'm totally pissed off with this government allowing some of the newer drugs that have proven their worth for only allowing them for first line treatment. That's great for newly DX but pure shit for those who are denied access unless one is a millionaire. Unfortunately for us plebs, polies are a so called cut above and can afford the cost.

    I think the tabs for crushing to make the mouth wash is dexamethasone........it was offered but it is a steroid and I'm allergic to Pulmacourt, also a steroid, so am loathe to give it a go. I get mouth ulcers regularly.....the ones on cheeks, lips and gums I can cope with it's the ones on the tip of my tongue that really give me grief. I know weight loss can be a problem but I'd be happy to lose some of the extra covering I have at the moment but it would be just my luck to put more on........lol.......ever the contrary one as my mother used to tell me.

    Let me know if I can help with your lobbying.

    Sounds like the Faslodex is doing great things for you......long may it last.

    Love n hugs. Chrissy


  • Delvzy
    Delvzy Member Posts: 454
    edited January 2019

    Girls I got theresults of the MRI tonight and it's very bad . I have cancer through all the lining of my brain with not long to live. I have to have whole brain radiation asap which will make me very sick and lose all my hair. Sorry to have to tell u like this , I now have to tell my family

  • mandymoo
    mandymoo Member Posts: 632
    edited January 2019

    Delvzy, Sorry to hear this. Sending you healing hugs. I really hope that the radiotherapy zaps the little suckers. Where abouts in the lining of your brain? Mine was above one of my eyes, another in the centre at the top (that divides left and right brain, and my third was in the right parietal area and I was told that that one had gone into the meninges, and that I would have weeks, maybe months to live. That was November 2012.... hang in there. Keeping my fingers crossed for you, hugs

    Mandy xxxxx

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2019

    Oh damn and double damn, Judy! There are no words lovely just gentle (((((((hugs))))))) to hold you up and a million prayers that the doc's prognosis is wrong. Keeping everything crossed that the radiation works its magic and blasts those little buggers to kingdom come.

    Love n hugs. Chrissy

  • Delvzy
    Delvzy Member Posts: 454
    edited January 2019

    Mandy apparently it's in the whole lining of the brain . Thanks for your support u give me hope. Thsnks Chrissy x

  • mandymoo
    mandymoo Member Posts: 632
    edited January 2019

    i just don't know what to say, Delvzy. It must be hard for you and also for your family. Praying that the doctors are wrong like Chrissie said. hugs. xxxxx

  • wildplaces
    wildplaces Member Posts: 544
    edited January 2019

    Delvzy - I am sorry to hear - I dont know what to say - Chrissy has put it so well - I follow Lita57 - because I like her stamina - heaps of info early in her thread about her WBR. I think she had WBR to 20 lesions August 2017.

    Mandy - spot on about Kisqali and Faslodex and PFS - you have a good onc - its crazy we dont have these drugs - particularly when $2500 a month is about what it would cost for 2 days of chemo care with bloods and everything. Its also crazy that - we cant prescribe combos as the literature unfolds. We treat pain multimodally (more than one mechanism causing pain, use drugs with different mechanisms to reduce side effects and maximise treatment) we treat infections with more then one antibiotic at times, we treat just about everything else by multiple lines - why should cancer be any different? Well until now the drugs side effect profiles were too toxic but as we are moving to oral chemo forms and targeted therapies - multimodal is key.

    Seeing the gov drag their feet on the av of CDKs makes me furious. That is just my two cents.

    ( I wonder how many women have been offered Prolia ( denumosab 60mg injection) twice a year to help with bone strength while on AIs? Or even after - currently on PBS only if you are about to break bones independent of cause (osteoporosis). Denumosab is the drug in Xgeva but lesser dose and not monthly.)

    Chrissy - yes its dexa mouth wash but if you choose to stay away - my suggestion would be bicarb mouth washes ( there is also biotene but I think horrid as it might taste sodium bicarb rinses might help). If you get an ulcer - bongella - the kids teething gel has an anaesthetic in it - this all of course provided you are not allergic to any of it - and I did spot your tendency to react to crap😉

    hugs to all - my thoughts and prayers are with you Delvzy

    🐣🌷

  • wildplaces
    wildplaces Member Posts: 544
    edited January 2019

    Delvzy,

    I cant stop thinking about you. May I ask you - since you have been diagnosed with Stage 4 2016 - have you had a biopsy to confirm you are dealing with ER positive HR negative disease?

    🐣🌷

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited January 2019

    (( Delvzy )) Sending love and prayers


  • Delvzy
    Delvzy Member Posts: 454
    edited January 2019

    I haven't had a biopsy but the Onc knee it was still positive after my 18 month good response to Femara which then unfortunately failed. The diagnosis is bc to entire outer membrane or lining of the brain.

  • SuefromSydney
    SuefromSydney Member Posts: 111
    edited January 2019

    Delvzy you don't even know me, but you can know that I and others care and send prayer, strength and comfort to you. You have hard hard work ahead, for you and your beautiful family. I wish you love and no fear.

  • Delvzy
    Delvzy Member Posts: 454
    edited January 2019

    Thank you Sue xx

  • wildplaces
    wildplaces Member Posts: 544
    edited January 2019

    Delvzy,

    We are here thinking about you. When do you start WBR? Has the subject of a biopsy come up? If this thing has changed and that is what is making it move fast/ this way (chances of that are low but NOT zero) your drug options are different, that is important. Its just moving faster and stranger than common garden ER positive. You are looking for receptors and any treatable mutations

    I am a little shit and NOT an oncologist - but please believe I can not get the picture out of you in Tassie out of my mind.

    ( as an aside my mammogram was deemed Birads 2 - benign - by two different radiologists, a third, my brother " said what the f...what are they reporting - there is a cancer at 12 and not small - my oncologist followed it up, they revised all the films of those prof for months... its in the past - no one is perfect - but in med its lives we deal with - cant hurt to ask - I know you and your onc are strong)

    I am sorry - I dont mean to be troublesome - I have written and erased this post a few times over.

    Gentle hugs

  • helenlouise
    helenlouise Member Posts: 363
    edited January 2019
    Delvzy, I am so sorry. I can't imagine how frightening and surreal receiving this news would be and then to share it with loved ones. Sending you courage and strength to manage and make the most of each day. Try not to lose hope. Mandy's experience gives us all hope. Thinking of you xx
  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited January 2019

    Judy, I'm so sorry to read this. I have no words either, but sending you many (((hugs))). I hope the WBR will help you, and give you more options. I hate this bloody disease.

    Trish

    xoxoxo

  • aussie12
    aussie12 Member Posts: 421
    edited January 2019

    Hi all

    Delvzy I don't know what to say apart from how sad I was to here your news. Hope that you and your family are coping alright.

    I see my Oncologist on Thursday for my 3 month check up, I didn't have a CT just a blood test so hopefully that is enough.

    Carol

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