A rock and a hard place

KatesmumKatesmum Member Posts: 2
edited January 20 in Metastatic breast cancer
New to this type of thingy but here goes...
Metastatic BC 12 years ago. Liver, lungs and bones. Given 12 months. Following chemo liver and lungs.. all good. Bones, different story!
Been on herceptin and letrozole from day one.  Also receiving bisphosphonates. Diagnosed with ONJ (Osteonecrosis of the jaw) just over 2 years ago. Immediate halt to bisphosphonates.
Feeling like shit last 12 months. Sore lower back, knees (also have PVD), fatigue, loss of motivation etc.
Now need 4 teeth removed (ONJ site).
Treatment holiday?? Had enough of daily pain. Partner died suddenly 2 years ago, kids grown up and moved on, friends dropped off.
Will NOT ask kids to come home and look after me.
Where to from here??

Comments

  • ZoffielZoffiel Regional VictoriaMember Posts: 2,888
    Hi @Katesmum 
    You are a champion to have gotten this far, what a shit time you have had. I've got no advice, jus wanted to say hi and welcome to the site. MXX
  • SisterSister Adelaide Hills, SAMember Posts: 4,457
    Welcome @Katesmum  As with @zoffiel, I have no advice just amazement at your resilience.  The folk on the metatastic breast cancer private page may have some practical information to give and if you put your general location (town...region...) on your profile, others may be able to suggest support groups, etc near you.
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,955
    Hi @Katesmum 
    Goodness you certainly have been tested in the coping stakes! I thought I would put up this link from the BCNA website as you maybe able to find something in your local area

    https://www.bcna.org.au/services-and-support-groups/

    Take care
  • TonyaMTonyaM Member Posts: 2,628
    Hi @Katesmum, big hug and welcome to this network.I don’t know how you are managing all that’stuff’in your life.
    Bc is a hard gig to do on your own so come back here for chats or think about joining a local support group.I run one in the Hills area in Sydney. 
    A medication holiday or even a change in meds may help but you need to talk with your oncologist.
  • KatesmumKatesmum Member Posts: 2
    edited January 20
    Update.... decided to take a drug holiday. Feeling better, no joint aches, BP down to normal with no meds. ONJ (Osteonecrosis of the jaw) is really giving me the shits though.
    Visited Max Facs specialist before Christmas. If cancer was active he would tell me to go home and "have red wine n cheese". Not sure if it is or not now with drug holiday.
    Other option.... surgery to scrape away dead bone, putty (or the medical equivalent) placed in the hole it would create from gums to sinus and fit with dentures. Sounds better than the original option of removing maxilla bone completely.
    Down side.... up to 5 procedures, 2-3months recovery after each and several months between surgeries. No guarantee of a quick fix, ONJ disease will continue to grow regardless and no guarantee of complications. At this stage, he's not selling it too me. That means possible 12-18+ months in and out of hospital with no real solution.
    Really unsure what to do. Having just gone through the bushfire disaster, I'm still not sleeping well, feel constantly drained, no energy.
    Endone is my new best friend but may have to graduate to patches.
    Have an appt with Oncologist in 3 weeks so will have a chat and go from there.
    Thanks for all the support. It meansva lot xo
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,303
    Hello @Katesmum sending you a private message.
  • jennyssjennyss Western NSWMember Posts: 667
    Dear @Katesmum,

    Glad you have been feeling better, and glad Endone is working for you; (made me feel weird!) Best wishes from jennyss in Western NSW for your oncologist appt and treatment decisions. 
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,368
    I wonder if antibacterial rinses and perhaps a creative soft palate removable appliance could help? For pain, maybe a small dose of radiation might help? This is not a frequent ailment so there are no hard and fast rules. See if you can get the specialists to think outside the box a bit. Hugz <3

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