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
Hello,
Sorry to hear you’re still dealing with fatigue too. I know this is normal but it helps to reinforce to myself that I’m not an outlier! I’m also sorry you’re dealing with nausea\vomiting. I’ve been relatively lucky in that respect as the mild nausea I’ve had has coincided with going back on my old meds (ribociclib). I really expected the radiotherapy to cause a lot more sickness.
Since we returned from our short break I’ve also had a piercing pain in my shoulder. I’m in touch with my breast cancer nurse about this but there’s a pattern here and I suspect it’s caused by weak bones where there’s been cancer before and excessive coughing due to lung mets. I probably over did it at the weekend! I’m relatively pain free when still but if I cough or move too much it hurts like hell. Likewise, I see all the things that need doing including the things I really want to do to cheer me up like gardening in the nice weather and I can’t do any of it, it is such a cruel disease. Everything we’re told about looking after yourself, doing the right thing etc to stay healthy flies in the face of living with advanced cancer. Hopefully with rest and medication my pain will improve though 
My hair was coming out in large clumps so I asked my husband to shave it all off eventually. It’s a bit itchy and sore in places but the scarf really helps psychologically and provides some softness which helps with the discomfort.
One bit of good news I had yesterday is my total ill health retirement has been approved so I can afford to medically retire from work. Obviously, leaving under these circumstances is the last thing I wanted but it’s a real relief as I didn’t find continuing to work a realistic option for me, the reduced hours option never really worked in my job!
I really hope your fatigue and nausea start to subside soon. Xx
