Hi Everyone,
I was diagnosed last May de novo with breast cancer spread already to the lungs and lymph nodes. I’ve been on ribociclib and letrozole since June and have had some shrinkage. Unfortunately I found out this month I also have bone and brain mets which I suspect have been there for a while but weren’t picked up on my ct scans. I only found out about my brain mets following seizures earlier this month which was incredibly scary, more for my husband than me as I’ve no memory of them beyond waking up in hospital. The only positive in any of this is my oncologist thinks my bone mets in my ribs have pretty much self healed, probably due to the ribociclib. I’ve been told I’ll need radiotherapy for my entire brain and am now waiting to hear when that can start. To say the new year hasn’t got off to the best start is a bit of an understatement! I’m particularly worried about having brain Mets and wondered if anyone else has been through treatment for this and if so are any words of advice you can offer? It would be great if anyone has had a successful experience with radiotherapy or good results? I’m finding coming to terms with cancer in the brain mentally very difficult, especially as ive already spent the last few months coming to terms with it being in my lungs. This is a horrible disease to deal with and any words of hope would be greatly appreciated. Thanks xx
Glad you’re getting out and about, despite the pain (and clumsy carelessness of others 
). It does wonders for your head to do something normal but it can be such a struggle for your body to keep up with at the same time.
Are the injections you mentioned the growth factor ones for your white blood cells? I had those on my last chemo too they do seem to cause more aches and pains, sorry to hear they affect you so badly.
What chemo are you having? Wondering if it’s one of the ones I’ve experienced.
I’m doing OK thanks, getting more tired as I taper off the steroids. I’m less mentally focused on the lower dose but I slept for longer last night xx
Hi Hipo,
It’s frustrating how you feel like you end up paying for the good days with bad ones. I know exactly what you mean. I still believe it’s worth making the most of the good days though.
When the blood test didn’t work was it problems finding and accessing your veins?
If so, there are a couple of things that might help for tomorrow, drinking loads of water between now and then to plump your veins up. I wore gloves to appointments so my hands were warm to encourage my veins to appear before they started. They can often give you a heat pack to hold in your hands/arms that can help too.
I had awful problems with my veins the whole way through chemo the first time around. They gradually got worse with each chemo cycle. When I found out I needed chemo again recently I insisted on having a portacath fitted for chemo. It was a total game changer for me, it made chemo treatments virtually pain free and saves so much time and stress. They fit them under local anaesthetic and then the portacath is completely covered by your skin so it’s easy to look after. Mine sits a couple of inches below my collarbone. The nurse pushes a special needle into it when they need to access it for treatment or bloods, once and done.
I went to the hospital for all my chemo bloods so they could use the portacath for that too. The GP practice nurses aren’t trained to do bloods via portacath so they wanted to keep trying cannulas. I’ve still got my portacath and the only maintenance it needs is being flushed at least every 6 weeks, I get it done at the hospital when I have my bloods taken through it.
This is what I have:
www.macmillan.org.uk/.../implantable-ports
There are other types of line they can put in for you, like a PICC line or a central line - easier and faster to insert but a bit more involved to look after as part of it stays outside the body.
https://www.macmillan.org.uk/cancer-information-and-support/treatment/types-of-treatment/cancer-drug-treatments/central-lines
Well, there’s another epic ramble from me, hope it’s helpful to you or to someone else reading 
Definitely identify with your chemo brain experience, it totally messes with you. At the moment radiotherapy has made me feel very dense and easily distracted. I think that’s the swelling and it should ease with time.
Sorry your sleep is screwed up too, it’s hard to deal with all this when you don’t get the rest you need. Let’s hope they can try something else to help. Depression is a horrible enemy at the best of times, you are dealing with such a lot at the moment 
️
You most definitely aren’t alone though 
Fingers crossed you have more luck with your bloods tomorrow and really hope they can get you started quickly on treatment to help you cope with all this xx
Hello Fliberty,
I hope you’re still managing post radiotherapy okay 
. I’m on day four now with one more session tomorrow morning. So far it’s been less of a struggle than I’d feared, the main disruption being to my sleeping patterns caused by early appointments and insomnia at night! The process itself though has been quick and painless and I’m keen to get the last one out of the way tomorrow. I’m still preparing myself mentally for side effects to appear, especially next week as I’m weaned off the steroids but so far so good.
I noticed on your profile you’re having a scan in April if I’ve read it correctly? Is that when they will check how your brain mets are responding to radiotherapy? I’m going to check with my oncologist when I’m likely to have an idea how well it’s gone and of course that will be the next big worry!
It has been a relief this week knowing something is being done despite all the worries that are still there about how successful it will be. I managed some gentle yoga yesterday which cheered me up a bit and my hands and knees were less stiff and sore than they have been previously. I also expected to be moodier than I have been on the steroids though I don’t want to speak too soon there..apparently I wasn’t much fun last time I was on them!
Really hope all is well as it can be and you’re doing okay xx
Hi,
I’m still doing OK thanks.
So glad to hear your treatment is going well, and only one more session to go. The sleep disruption is a definite pain but it should ease once you taper off the steroids. Sounds like you’re making good use of the extra steroid energy, great to hear you managed some yoga 
I had my first day without any steroids yesterday and had little bit of nausea here and there but it was manageable. I was awake at 5:30am today. I find I have to eat often or my stomach gets squirmy and then the nausea starts. I’m really swollen from steroids again, I feel like the Michelin Man, particularly my face, which is puffy and round - I can feel resistance when I smile. Will be nice to get them out of my system and I’ll stay off them if I can.
I’ve lost my hair again where the rays went in now, it started thinning gradually 2 weeks after my first session and the rest came out at once at the 3rd week point. I’m wearing soft chemo hats as the skin is sensitive. I have Flamigel to put on it which is soothing.
Not sure if they said you’d lose your hair as the dose will be different. If so, and if you haven’t lost yours hair before, it might be best to buy some soft hats in advance if you don’t have any. I can send you some links to my favourites if you’d like?
They are good for catching the hair as it comes out (it gets everywhere), having something soft to cover the sensitive skin and to cover up the bald or uneven spots.
Yes, best guess by Dr that prescribed my radiotherapy is they’ll scan in April. The rays from the treatment sessions continue to affect the treated area for weeks and continue to cause swelling / inflammation. They have to wait for that to die down before they can see progress on a scan and if it has worked.
Hope your last one goes smoothly today xx
