Sarah I am the same as you with inoperable brain mets as well as liver and bone, I go the whole hog! I had 5 sessions of radio which was no problem though the 150 mile round trip to the hospital was awful!! I am now on chemo but this was stopped a couple of weeks ago as I have lost too much weight too quickly, 3 stone in 2 months and have landed up as weak as water! For over 5 weeks I hardly ate anything some days nothing everything even water tasted horrible. I have just had a CT scan so the onc can find out what is going on with my mets and change/adjust any further treatment. I go on Thursday to get the results and must admit I am just a tad nervous! Still we must carry on and not let this horrible illness win. Positive attitude is the way to go so keep fighting!!!
Thanks Nicky - I know I am at a good hospital and my onc is great but I think I will be looking at the Marsden for a second opinion regardless. I just want to be sure xxxx
I'm glad you were able to have a good holiday but it's not nice to come back to the 'real' world is it? I had this last year, as well as earlier this year when we went away, and you feel you want to stay away forever and not just to enjoy having a holiday!
I hope you have an appointment with your oncologist soon which will reassure you but if you are not happy with his 'wait and see' approach you could always ask for a second opinion? I have had a second opinion at The Marsden twice since my liver mets were diagnosed last year and it has helped me regarding my treatment and has just, in my case, reassured me that my local team is doing the right thing.
Good luck and keep us posted.
I called my Mac Nurse yesterday to see if I could get any reassurance. Seemed to think if its really small and not giving me any grief that my onc may decide to just go with a watch and wait approach. Not sure I'm very happy about that at all - I want it out .. not to wait and see if I suddenly have a seizure! Having headaches now and have a heavy eye and am sure its probably just stress and a bad nights sleep. I have always been prone to headaches and never would have thought anything of them before - now I just assume that it could all be related and am worried. They aren't anything drastic .. had far worse. Meditation CD that got me through secondary diagnosis has been dug back out ... ARGH - ******* disease. Hope everyone else is okay today xxx
Thanks Sarah - back from holiday now and it was very hard to try and switch off but only one meltdown which is not too bad I guess! MRI today so hopefully things will start moving now and I will feel better about it all. Have you done alot of research? I've been googling (never good) and feeling very disheartened. Keep trying to remind myself that I moved forward after my initial diagnosis so I can do it again but it has all happened so quickly I'm really scared. I had read that HER2 is very common to spread to the brain so I was kind of expecting it to happen at some point but I thought it was a few years off yet. Has your onc said anything positive to you? I don't think its helping that MRI letter says no make up so I look like utter **** today LOL xxx
my research nurse came and saw me today while having treatment (ex research nurse now I've been kicked off the trial) and got the onc I saw on Weds to come and talk to me again. Told me to go and eat nice food and drink nice wine but probably avoid watersports! Not a problem xxx
We're off to Croatia - Oncologist seemed to think it was fine to go but she wasn't my usual one and I'm not too sure how reassured she made me! Might give the support line a call later to see if it calms me down. Just had a lovely wedding anniversary card from my husband and has made me cry.
Thanks for this .. off on holiday tomorrow and petrified something is going to happen while we are away. Seizures seem to be very common ... freaking out!
I'm sorry to read of your recent diagnosis. As well as the support you are receiving here you might find it helpful to talk things through with a member of staff on the BCC helpline. Here you can share your fears and concerns with someone who will offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
I'm so sorry to heat your news its rubbish. I haven't had brain mets so cant't help you there. Though this thread may be helpful for you.
Hope they can get a treatment in place very soon.
Morning lovely ladies - don't post very often but could really do with some reassurance. Has anyone been living with brain mets for a while? I had CT scan results yesterday and they showed I have a small met on the brain .. just waiting for a MRI scan to check there really is only one before they can decide what to do. Really really scared and husband keeps crying - have come into work today as don't want to be on my own but not sure it was a good idea!