Hello ladies 👋 sorry it’s been a while since I caught up on here. Carine I’m sorry to hear you’ve had some progression. Hope your appt on 6th May was helpful. Judy what a disappointment it must’ve of been for you all with the wedding being cancelled, let’s hope it’s not long before it can all be rebooked. My eldest son got engaged on Valentine’s Day, she asked him, it being a Leap Year, he said “yes” Hopefully a wedding next year 😀 . Well this year has been very eventful for me, I asked for my scan to be done in January and to include a brain scan as I was feeling very odd and wobbly and sight peripherally in right eye was getting bad. The results were what I suspected that I had a brain met. Lucky for me it was a single one and in my occipital lobe so hence the vision and wobbles etc. So on 2nd March I went into Wessex Neurology Centre and had brain surgery to remove it. I feel so fortunate they could do this. In April I had five sessions of stereotactic radiotherapy also at Southampton. Most of the brain tumour symptoms went very quickly after surgery and then I realised how long I’d been “going downhill” but fairly gradually since September so until things got very bad end of December I didn’t twig (only had a couple of headaches in Sept/Oct). My sight in right eye is still affected and I’ve been told it prob won’t get any better now but I’m ok with that as I’m still here 🙏🏼 . After radiotherapy I felt pretty rough, all symptoms came back, but was told by Neuros this was normal. Anyway now at last I’m feeling much, much better again.... hurrah 😀 I will get three monthly brain scans now. I wish it was policy that all stage four ladies got a brain scan. My other mets were all stable so I’m still on Tras and Pert. Although I learnt that the molecules in these drugs are too big to pass the blood brain divide, hence getting a brain met. Kadcyla can get through a little better but my Onc said he didn’t want to go down that route yet as everything else was quiet, we need to keep something in reserve. Meanwhile I’ve been hearing good things about a drug called Tucatinib which has small molecules. Something I’m going to ask my Onc about adding to my drugs (it looks like it’s tablet and given with Trastuzumab. I’d be up for a zoom or a WhatsApp call if everyone else is. Missing everyone, saw Judy briefly at secondary bc meeting at QAH before my op and we all went into lockdown. (Judy: what a great secondary bc nurse Ellie is, she’s been fantastic to me.) Love to you all keep well Julia Xx PS sorry this is such a long post 🙊 X
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