Forum Discussion

Me2's avatar
Me2
Member
7 years ago

Nerve pain

good morning ladies, another question if i may. Ive been battling tnbc sine last year. Briefly. Got through it, well i thought after aggresive chemo rads etc. have had 4/5 lovely blooming mnths only to now discovering i have tumours around nodes and nerve endings. Around lungs front n back. Was totalyy clear  at 3 mnthly check up. Anyway, my question, is there anyone out there with similar issue? Nerve pain? Accute lymphadema? Cancer in dermis later skin on scar site? Anything similar. Docs say never seen anythjng progress so fast. There has to b someone else thats got similar. I dont want to sound morbid but i feel if i had someone yo relate to i wouldnt b so affraid. Much apprdciated. ❤️
metastatic-breast-cancer
  • TripleNegMama's avatar
    TripleNegMama
    Member
    7 years ago
    I also use a lymphodema pump to help with the lymphodema (I bought mine but you can hire them to use at home) - haven't found anything that works for me with the nerve pain but some people can tolerate things like lyrica - might be worth discussing that with your treatment team
  • TripleNegMama's avatar
    TripleNegMama
    Member
    7 years ago
    Hi I'm TNBC too. seems it's much more aggressive than other forms.  I had extra testing done on my tumour (about $4,000 and sent to US), so see if it showed any characteristics that could be used to help in guiding treatment decisions - didn't really help me as my tumour is a bad ass highly resistant b#$% but if you have the $$ might be worth discussing with your oncologist as well as any options with clinical trials.  good luck sending gentle hugs
  • Sister's avatar
    Sister
    Member
    7 years ago
    I can't help with information but I'm glad to hear you have someone to talk to one on one @Me2.  Thinking of you.
  • Me2's avatar
    Me2
    Member
    7 years ago
    Thank you Zoffiel. What wise words, well said. Yes i do have a councellor and my mcgrath nurse and as of today. Exactly one week from diagnosis a palliative care nurse. All wonderful woman. 
  • Zoffiel's avatar
    Zoffiel
    Member
    7 years ago

    I'm not TNBC,  but my recurrence was in a scar site from my sentinel node and was only confirmed when the cancer came through my skin, despite the area being ultrasounded and biopsied on a number of occasions over a period of about two years because I thought there was something wrong. I'm not in your situation; as far as we know the new tumour was confined to my axilla though there was strong vascular involvement and multiple contaminated nodes, so I can not give you much else but a big fingers crossed.

    This shit is not fair. Are you seeing a counsellor? We can lend you an anonymous ear to have a vent, but a one on one with someone who knows their stuff can be very beneficial. I have found that general insecurity has made my somewhat mercurial personality traits see-saw madly which doesn't help me or anyone around me. Getting a mental health professional on board has been very useful. They can't fix anything but, a bit like this site, they can give you an opportunity to test drive conversations in an environment where no one is going to judge you and you can get a bit of a spiel sorted out which may help with many of the difficult conversations you are already having and will have to have in the future. Mxx

  • Tennille's avatar
    Tennille
    Member
    7 years ago
    Have you tried breastcancer.org? Might be other women there. I too am TNBC metastatic but my situation is a bit different so may not be much help. I can honestly say that if you have a faith to give it all to God and place yourself in his loving hands. Hang in there. We are all here for you.