Stage IV breast cancer with brain mets

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Hi Everyone, Unfortunately I am joining the group that nobody wants to belong to. I was diagnosed with Stage IIIb IDC ER8, PR0, HER neg in March this year and underwent lumpectomy and wide local excision in May and re-excision in June. 5/13 lymph nodes were cancerous. I started EC x3 in August to be followed by Docetaxel x3 not without problems. Cycle 1 saw a PICC line infection and clots so PICC line removed and Hickman inserted. Cycle 2 saw my BP plummet so I was forever passing out and became dehydrated. Cycle 3 I suffered neutropenic sepsis and was in hospital for 10 days, 2 days after cycle 4 I had a headache that wouldn’t go with painkillers and then started vomiting. After a further trip to A&E and an MRI scan I have was told last week that cancer has metastised to my brain and I have several large tumours both sides. I saw the oncologist on Monday and she is convinced that this spread before I had lumpectomy.

Everything has happened very quickly and I am still trying to process this information. I am having Hickman line removed tomorrow, all further chemo has now stopped on my breast and I am undergoing whole brain radiotherapy next week. I am managing pain with dexamethasone, morphine and have started Letrozole

Is there anyone on the forum in a similar situation that can provide some much needed support and encouragement on how to proceed from here. The hospital has been great and is putting palliative support in place but it would be great if I could share experiences and have some expectations on what to expect moving forward.

Good luck to everyone on the same journey

  • Hi Ya 

    How you getting on ? 
    You are in my thoughts and preyers x 

    I get my mask fitted today just want to get on with it now.

    Sending positive energy your way  x 

  • Good Morning to you,

    I hope your mask fitting goes well.  I promise it’s not too hot when they put it over your face, but it is very warm.

    im ok thanks, definitely feel not myself, but it’s hard to pin point what exactly feels different. 
    the treatment itself doesnt hurt so that’s good.

    my taste buds are off, some pressure and tingling through head. Words not coming out right. Heartburn, I think due to the steroids. 

    taking it all day by day seems to be the best way to tackle this, as I felt tired all yesterday but after the treatment I felt fine again: there appears no rhyme or reason to it.  I was told it’ll take about 2 weeks for the worse effects to come and go. Roll on 3 weeks I say then!.

    Good luck today, let me know when you get your schedule xx

  • Good Morning 

    Thanks for sharing , I agree take everyday as it comes that’s really how I het through this I started a mindful class around 5 months ago and it’s really helped me out cause I was always in fear which is no way to live.

    Speak soon x 

  • Hi 

    I had the fitting like you said was quick so I got my treatment plan it starts next week Tuesday 

    They were really lovely going to visit my 9 year old neice she’s great at taking me away from myself.

    I hope your day is going as well as can be x 

  • Hi,

    glad the fitting went well. I’m just happy tomorrow is final day. I feel ok, have little weird feelings here and then and some fatigue, but am eating healthy and keeping hydrated.  I’ve cut out sugar too, and the radiologist said to look up DR Amy as she had stage 4 cancer and cured herself of it but stopping sugar too. I haven’t looked at her page yet but am going to as am up for trying anything!

    hope your day with your niece was lovely,

    keep positive and have a lovely weekend xx

  • Hi 

    How you been ? 
    I had a great weekend with my neice took my mind of me lol x 

    How have you been getting on ? Interested to know if you have been able to do your general day to day things ?

    X

  • I looked up the Dr Amy there a few different storeys on there about Amy good to read other storeys that offer hope x 

  • Hi there, happy to hear you had a great time visiting your niece. Distraction is definitely key.

    so, I’ve not been too bad to be honest. I wouldn’t say I’m my usual self, but there’s nothing concerning going on, so that’s good. They do say it’s the first 2 weeks after that the tiredness etc is at its peak, so I’m just going with how I feel on the day. I start my Chemo pills tomorrow and will be having my Zometa bone injection then too.

    i hope your week of therapy is as stress free as it can be. The actual treatment itself lasts only a few minutes luckily. 

    please let me know how you get on, I’ll be thinking of you xx

  • Good morning 

    How you getting on ? 
    Today is day 3 I have been ok so far no side effects they said to me I may not need chemotherapy after as I might just have more targets of radiotherapy I also got my scan results for my organs and bones and my bones have had no change as I have bone cancer which was my first secondary but seems to be no spread to the liver or lungs ect so feeling relieved at that I do hope you are ok I know you said u was starting the chemotherapy just today you are in my thoughts x 

  • Hi,  sorry, I haven’t checked emails lately so missed your message.

    glad to hear it’s going well, and that the spread is contained.

    I have it in bone, brain, liver and potentially lungs, but I’m determined with the therapy, chemo and lifestyle changes that I can minimise it, or even kick it in to remission.

    I’m more tired these last 2 days, but otherwise there’s no scary side effects as yet.  My sister in law cut my hair for me yesterday too, so that was lovely.

    im going to spend next week away with my husband as he works away in the week, and going to take my big old puppy with us for company. So have nice things to look forward to.

    must mention, if it’s in bones, apparently nuts are great to eat to help encourage osteoblasts which in turn help to promote re growth of bone.

    i have too much time on my hands!

    have a lovely weekend, and I hope you feel good xx