Hi everyone,
In November I was diagnosed with secondaries to my lungs, liver & brain. I am currently on oral Navelbine every week & Herceptin every 3 weeks. I have had 10 sessions of WBR for the brain mets.
My Onc told me that the Radiotherapy was the only treatment available for the brain mets as chemo will not cross a barrier in the brain.
I am a bit confused as I have been browsing the forums & noticed that some of you have been offered chemo for brain mets.
Also, I asked my onc if I would have another scan after my WBR to see if it had worked & she said no, I would only have another scan on my brain if I developed more side effects. Has anybody else experienced this? Any advice would be greatly appreciated.
Lisa x
Sorry I cannot help Lisa. I do have bone mets but no knowledge of brain mets. Hopefully someone will reply to you over the weekend. I think we must be the only ones who are up late tonight/this morning. I am sorry that you are having a hard time of it at the moment. Much love coming your way through the air. Love Val X
Thanks Val, my sleep pattern has been all over the place since I was diagnosed in Nov. Surely things must get easier??? (I hope) x
Hello Lisa, I’m pretty sure Capecitabine (Xeloda) crosses the blood/brain barrier.
Take care…xx
Hi Lisa,
My understanding of the blood/brain barrier problem is that once you have had WBR the chemos are more effective at crossing that barrier.
Dawn
xxx
Hi Lisa,
I have just finished 10 sessions of WBR and I am having a scan in 2 months to see what response I’ve had. I think it’s reasonable to want a scan at some point and see how things are. I am starting Capecitabine and Herceptin tomorrow- have previously had capecitabine and lapatinib for about 7 months but not really helping in my brain although itr did help my liver. I have been on really low doses because of side effects. The idea now is to increase3 capecitabine and hopefully side effects won’t be too bad because I tolerated herceptin well before. I’ve had gamma knife twice but wasn’t suitable this time so has WBR which wasn’t as bad as I expected. I hope you can sort out a scan to put your mind at rest. The other chemotherapy I had for my brain was cisplatin and 5fu with herceptin which worked well. Take care, Gemini.
Hi,
Just had recent ct scan on liver and also brain as was having severe headache. After six doses Tax liver is good but onc said was suspicious mass on brain so have to have MRI on Friday.
Am slightly worried to say the least and can’t stop crying.
Trying to be upbeat infront of my two kids who are both incredible dealing with this awful rubbish.
Was just hoping for a bit of good news as I was nt good with Tax. Was previously dx 4 yrs ago and had fec,mastec, chemo and rads.
Its early days but I just wanted to get on with my life and try to be not so miserable. Once radio starts i’ll hopefully feel better.
Have read lots on this site but never responded but I just feel a bit desperate, maybe someone has similar story. Most are not great
Trying to be positive
Jinnie
Dear Jinnie
So sorry to read you have this worry and just wanted to say that whilst you await replies you are welcome to call our helpline to talk through and share your worries and fears, our team are there to support you so please do call for their help. The line is open 9-5 weekdays and 9-2 Saturdays on 0808 800 6000.
Take care
Lucy
Hi Jinnie
Sorry to hear about your situation. In was diagnosed with brain mets 22 months ago and had a craniotomy to remove 1 tumour. I had gamma knife to deal with 2 other tumours and then chemotherapy. 10 months later I needed more gamma knife for a new tumour. Most recently I had WBR for 5 tumours because I wasn’t suitable for gamma knife this time. I am also having chemotherapy. I have felt relatively well these passed 22 months and managed to go on holiday etc. I have only stayed in hospital for 2 nights on both occasions due to feeling dizzy and being sick which was easily sorted out. I hope you can start to feel a bit better soon and start your treatment.
best wishes, Gemini.
Hi Gemini
Thanks for encouragement. I know when I was dx with liver mets ,I lost the plot, but was able to accept it eventually. Just needed someone to tell life does go on with brain mets. When I told my family they have really tried to keep me going and I feel its really hard for them.
Onc said she is going to start just with radio as I have something on back of brain. Its good to know there are more treatments out there and you are living relatively well, going on holiday too. I hope to go in half term hols to France depending on treatment.
Thanks again for info
Keep well
Jinnie
Hi Jinnie, you’re welcome. I have liver mets too but thankfully they’re under control at the moment. It’s good that you’re ready to start treatment. i jut wonder if you’ve considered gamma knife rather than WBR. It’s targetted radiotherapy and is a one off treatment. Both times I’ve had it I’ve had no side effects and kept my hair!
Anyway whichever treatment you have wishing for good results. Tke care, Gemini.
Had MRI scan on brain Friday, and it was really ok. Was having major panic as i get claustraphobic, Washed down a few happy pills before, put eye mask on and listened to beyonce “Putting her hands up”. just gota wait for zapping now. but always feel in limbo when treatments hanging over you. Not a patient person the best of times. But my two wonderful kids and family, extended family and friends are keeping me in there. Rambling now
Jinniex