Treatment seems bad as the disease

RoyaltyRoyalty Member Posts: 1
hi everyone! I was diagnosed with metastatic breast cancer in February 2017. My first diagnosis with breast cancer came in mid 2013. I have hormone positive breast cancer. Treatment for the first diagnosis was a lumpectomy with right axillary clearance, further surgery 2 weeks later as they did not achieve clear margins. I then had chemotherapy, radiotherapy and commenced on Tamoxifen. This drug I was still on when diagnosed with Metastatic cancer this year. I am now on Arimidex daily, xgeva injection monthly and a monthly implant of Zoladex because at now 48 I had still not entered menopause. I have found the last few weeks so distressing. My hands and feet constantly ache, when I stand at anytime even after sitting for a moment I have trouble walking, I sweat constantly , I have insomnia, bone pain and weight gain and now I am getting bald patches on my head. I am grateful that my tumours are currently stable but thinking about what my body has already been through I find it hard to keep going. I feel like I am an old woman. Today my eyelids started to peel. I expressed my concerns to my oncologist on my last visit and he said I could consider switching off Arimidex to another similar drug. Trouble is I'm too scared to switch in case I get tumour progression.


  • iserbrowniserbrown Regional VictoriaMember Posts: 2,466
    @Royalty Hi!  Welcome to the forum!  sorry you have to be here and what a bummer!

    As this is your first posting I will ask have you made use of the resources on here and afforded yourself the opportunity to join one of the groups, say

    the BCNA website as well as the forum are a source of information, just use the search facility within each.

    I guess you would already have the My Journey Kit, if not here's the link and it's free

    As to the aches and pains, I was on the Zoladex implant injection one every 4 weeks x 26..................bone pain was one that knocked me around.  Combined with Tamoxifen and other medication the question becomes which one is the culprit.  My Onc has suggested Panadol Osteo for the bone aches and it does work.

    Others will come on and give you sage advice and offer comfort to know we get it, we're all in this together and here's hoping your body adjusts to the routine and the horrid side effects are a sign of the treatment working!

    Take care

  • ZoffielZoffiel Regional VictoriaMember Posts: 1,944

    Ah, bugger. What a crappy thing to be coping with. The Zolodex was a step too far for me so I had my ovaries removed which brought it's own set of 'stuff' but it seemed like a better option for my stage of life. I was 53 and had a recurrence.

    Keep plodding and ask more questions about the other drug options. There are a couple and it is often difficult to determine why one has been prescribed rather than the others. It's worth having the discussion if you are not coping at the moment.

  • iserbrowniserbrown Regional VictoriaMember Posts: 2,466
    @Royalty BCNA helpline nurses are available tonight - perhaps a natter with them will help you 
  • AfraserAfraser MelbourneMember Posts: 1,559
    There's a reason people are scared of cancer - the treatment can be as bad as the disease! The fear is in no way irrational. If your oncologist is happy to try something else, it may be worth considering especially if the active ingredients are the same. Some people find that the binders in medications affect them badly, or mix badly with other medications. If the active ingredients are the same, you should feel confident a change is not prejudicing the beneficial effects.  Best wishes.
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 2,388
    edited February 9
    A reminder that the BCNA helpline is available this evening until 9 pm. We have a Cancer Nurse and Member services officer available to take your calls until 9 pm tonight EDST.  If you have any questions or concerns please don't hesitate to call us.

    Our helpline provides free, confidential information, support and referral as required. Helpline hours are Monday, Wednesday & Friday 9.00 am to 5.00 pm and Tuesday & Thursday 9.00 am to 9.00 pm EDST.

    Helpline nurse & member services officer available tonight on helpline 1800 500 258

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 2,388
    @Royalty I put the helpline number above Iserbrown had mentioned it but thought you might want to have easy access to it. 
    Do you have a breast Care nurse ? https//

    https//  Do you have a copy of Hopes & Hurdles 
    Our Hope & Hurdles resource is designed for people who have been diagnosed with metastatic breast cancer. It has been developed through extensive consultation with women living with secondary breast cancer, and those who treat and care for them.

    Throughout the resource you will find quotes, photos, advice, recommendations and encouragement from people who have been diagnosed with metastatic breast cancer.



  • makebelievegirlmakebelievegirl Member Posts: 20
    Hi @Royalty, I was on Letrozole, xgeva and Zoladex in 2016. It's not fun to have those injections. I had my ovaries removed a year ago, so now I'm on Tamoxifen and xgeva. Less injections, but dealing with menopause symptoms. In my case, I'm doing really well. It's definitely worth asking lots of questions to your oncologist and weighing up the side effects. It's a hard road, but we are here to support you.
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