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Shakespeare's avatar
Shakespeare
Member
4 years ago

New member

Hi all and thank you to those who welcomed me! I was waiting for some news on my next treatment before I posted. I was disappointed to find out I cannot have any more radiation but glad the team came up with Provera as an alternative to last resort chemo, even though I have just had a year on CDK inhibitors thanks to compassionate access from Lilly.

But to start at the beginning I am lucky it is 12 years since I was diagnosed with invasive, oestrogen +, lobular Ca of the left breast that was treated with a mastectomy, lymphatic clearance and chemo followed by 5 years of Tamoxifen. A recurrence around my brachial plexus was difficult to diagnose but eventually treated with a radical course of radiation after a year of AIs. The radiation worked well on the brachial plexus lesion but by 2017 there was local tumour recurrence on my chest wall. This has been treated with further AIs, Everolimus which may have contributed to a nasty pneumonia, 15 months of Capecitabine, 3 months of Faslodex I funded, followed by Abraxane, Eribulin, some local radiation and in the last year Faslodex plus Ribociclib, then Abemaciclib. I have some bony mets to my spine and right arm but luckily no progression to major organs so far. The tumours on my chest wall are unsightly and uncomfortable/painful but not immediately life threatening.  

I can only be grateful for all the treatment I have received although some of it has been hard work and I have developed some cardiac and lung issues. I am hoping for a few years yet as I love my life (I am about to turn 75). I am well supported with family and friends but late last year a sister/best friend moved interstate to be with her daughter and along with Covid that has left me feeling more isolated. Two daughters are supportive but I spare them all the details of my cancer and would love to have more people I can chat to about my health issues and share information with - as one doesn’t want to bore friends and family too much! Which is why I am happy to join this group but would be even happier if it were possible to be linked in to someone local to 3765.


metastatic-breast-cancer

7 Replies

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  • Ellamary98's avatar
    Ellamary98
    Member
    4 years ago
    Hi @Shakespeare. I love that you have such a positive attitude after all that treatment. 
    If you are looking to connect with someone local, there is a mets group in the eastern suburbs called Thursday Girls, who meet weekly in person or over zoom. 
    I’ve been to a couple of meetings and they are a very friendly and diverse group. It’s also well facilitated. 
  • wendy55's avatar
    wendy55
    Member
    4 years ago
    Hi @Shakespeare,
    I have just read your post and found it very interesting,you have certainly been on a lot of treatments,just like I have and you have been on ones that I have too,faslodex,abemaciclib,abraxane, capecitibine and at the moment I am on eribulin,you are 12 years in and I am in my ninth year,I am currently on my 13thline of treatment,I am 66 and hope to live a lot longer,although its very hard at times,I live In country SA, I am certinly interested in the fact they have put you on Provera,is this just to stop the eostoegen? what are they saying is your last line of chemo treatment,my oncologist has said that eribulin is pretty much my last chem,then its clinical trials and studies,so I am always on the lookout for anything new or different, I do have tumours in my liver and in my spine,it really is a long hared road that we have to travel and this can only be done with the help and support of family friends and partners,do you have a McGrath Nurse? I do and she is a great help even for just a phone call to see how I am and have a chat,I have a 4 hour round trip to have my eribulin infusion, I started on this December 20th last year after 22 months of abemaciclib and faslodex,I see you also had ribociclib with faslodex as well as the abemaciclib,I was never able to get eith palbo or ribo as they deemed me not eligable duee to the amount of treatments I had had,so very interesting to read your story,I am a member of the living with mets group as well,its not always very busy there but everyone helps each other,so glad that youhave found us and if you want to chat please dont hesitate.

    wendy55  
  • Shakespeare's avatar
    Shakespeare
    Member
    4 years ago
    Thankyou @Julez1958 and @arpie for your kind messages. And sorry to hear about your husband Arpie. At least we learn how to care for others when we have had to care for ourselves. And in the end caring for each other has to be what life is all about. Take care both of you!
  • Julez1958's avatar
    Julez1958
    Member
    4 years ago
    Congratulations @Shakespeare on the 12 years!
    I agree that it is important to hear the good stories - take care.
    🌺
  • arpie's avatar
    arpie
    Member
    4 years ago
    Well done on being such an excellent self advocate (for your buddy as well) & confident in tackling the medicos when you need to @Shakespeare. 

    I am also my husband's carer, who is Stage 4 ... and it is getting to the pointy end of his treatment .... 

    take care xx & all the best


  • Shakespeare's avatar
    Shakespeare
    Member
    4 years ago
    Thanks so much @arpie for your reply and all the good work you do. I have just filled in my profile.......I live in the outer eastern metro area in Melbourne. I had applied to join the Living with Metastatic Cancer group but was happy to post my story to the broader group in the meantime as I found it helpful in my earlier years to know that people can survive for 12+ years. I just used my intro story for the profile but added my suburb and also the fact that I am an old nurse......retired except that I still have an NDIS client I coordinate care for. I supported him while I was still working in community health and he has a brain tumor and terminal diagnosis. I think 50 years of nursing including some palliative care has helped me negotiate the public health system and not be intimidated by the medicos. I have have had an excellent oncologist for the last few years and she knows I am often one step ahead of blood tests and scans in knowing what is happening with my body and when my treatment needs a change! 
  • arpie's avatar
    arpie
    Member
    4 years ago
    Gosh, what a great soldier you are @Shakespeare - you've been through a lot - it is terrific that you are on Provera xx

    Are you in Portsea, Vic?  You can add your town (or general area within the state) in your profile - just click on your profile & then click 'edit' .... then others can 'see' where you are with any of your posts.

    And a big welcome to the blog.  xx  Terrific that you've had great support from family & friends over the last 12 years ... and a shame that your sister/best friend has moved interstate & can fully understand your feeling of isolation xx. Can you Facetime them or use Messenger for 'live chats with video?  We have family in NZ & we do it every few weeks.  Not the same as having them 'there' - but better than nothing.

    You may like to join the private 'Living With Metastatic Cancer' group - there you can discuss in total privacy, your treatment with those who are also going thru it .... this 'open part' of the forum is not private - but we applaud those who've done so well for over a decade. xx

    Feel free to check out this post - it has a lot of general info on the forum & some of the other areas that we enjoy - even funny ones - yes, we still get to have a giggle!  Also we have art & craft and a 'pet' area - feel free to add any of your own pics xx
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    take care and all the best with your ongoing treatment xx