Hello Ann
Just catching up on the forums after three weeks away. So sorry to hear of your diagnosis, cannot begin to imagine how devastating it is for you. But I sense a glimmer of hope from your recent meeting with your onc so I do hope that you get at least the couple of years you mentioned. Sorry if this sounds trite, words just can’t come out right sometimes can they?
Best love,
Alison xx
Hi everyone
I have just joined tonight because we found out today that my Mum now has brain mets. After almost five years of being ‘clear’ of breast cancer, she was diagnosed 18 months ago with mets to bones, lung and liver. After chemotherapy, she was doing really well. The ironic thing is that her lung and liver are still looking really good and the tumour level in her blood is very low.
I’ve been reading about gamma knife treatment. Mum has three brain lesions - how would we know if she was eligible for the gamma knife?
Thanks very much,
Deborah
hi diagnsd yestrdy with brain mets, seein doc today xx
Oh Zippy I am sorry to hear of your diagnosis…I hope you can find some comfort from reading here…Best Wishes to all.
Belinda…xxxx
Hello
Well after a stressful week - i saw my onc and got some answers to my many questions and feel SOOOO much better.
Yep still have brain mets. But from somehow imagin i had 17! mets and my brain was full of tumour, i actually only have 4-5 with the biggest at 1.5cm the other few are tinyier, so in terms of size they are weeny. And it seems are not near vital areas and why i luckily do not (and hope not) have symptoms.
so after imaginin the absolute worst - yep its not great - but it couldv been far worse. im fortunate they ct scanned my head, as i fainted/collapsed from bein neutropenic from chemo - but scannd me to check my head as they couldn rule out fittin or injury in the fall to my head. thank goodness they did. As without symptoms idv mayve not known until it was too late.
i am due to start WBR next week for 5 days then back on chemo taxotere 4 weeks after for the liver tumours all being well.
so all in all, i am feeling much better now, and take each day as it comes, whatl be will be. No point worrying about it, ive been fightin breast cancer for 8 years now and with these latest tumours ive now had over 20 or so tumours, in breast, lungs, spine, liver and now brain so its just another blip. 
I love my life and im gonna continue to enjoy it!
Hi Zippy, great to hear from you. I just wanted to wish all the best with the WBR and I hope you are back on the chemo track soon. Take Care, Belinda…xx
Good news Zippy. As you say, thank goodness they did the CT scan in the first place. Hope the WBR goes well and you’re back on your fighting toes asap Have a good weekend.
Nicky
Hi all,
I unfortunately found out yesterday that I have new brain mets in the part of the brain they didn’t zap last Nov with RT. It was always a risk not doing WBRT but one I was willing to take. Now it seems they have popped up. No plan yet - see doc on Monday. This on top of progression in liver and lungs is not good and I started on capecitabaine this morning. Thinking of you all
Louise
Hi Louise
I am on Capecitabine and finding it okay in comparison to previous chemo’s and I read somewhere that it is noe of the ones that crosses the blood brain barrier (I think, better check but I am sure someone on here said that!) So far the Capectabine is working on my tumours so I hope it does for you. I am having Vinorelbine as well on day 1 and day 8. I have always been given two drugs (combination) for each course of chemo I have had my Onc is of the opinion that it is more effective. Maybe ask about that on Monday.
Still thinking of you and sending hugs () Sue x
hi
thnku for your messages!
sorry to hear louise about the additional mets, i didnt know they only did part of the brain i thought it was wbr or gamma so interested to hear tht they only did part of your brain.
well i hope theyl wbr the other ones asap.
everyone enjoy your weekend
take care xxx
Hi
Got my wbr dates, start next week.
just want to get it over and done with now!
But feeling ok and happy
Hi Zippy,glad you have your wbr dates and the treatment will soon be over.
My own hair has just started to fall out today but by wig looks great so other than getting used to the handfulls of hair thats not too much of a problem.
Best of luck Ann B xxxxxx
Zippy - good luck with your treatment, I will be thinking of you and hoping it is not too much of an ordeal.
Ann - good to hear from you and it’s good to hear you sounding so positive, I’m glad you are happy with your wig - that’s one battle won!
Louise sorry to hear about your new mets, just hope that you treatment gets started asap.
Love to you all
Nicola xx
Hi all
Tahnks for kind words
Zippy, I start WBRT thursday so we must swop notes. I’ve got some steroids and antisickness ready because I suffered quite badly with headaches and nausea. At least I know what to expect.
Best of luck
Louise
zippy and louise,
Good luck with the treatment, hope all goes well and se’s not too bad / controlled. Thinking of you both and sending good vibes your way.
love Julie x
Hi,
Thanks for the link to this thread which, if I may join. I was diagnosed Nov 2004 (34 yrs) and told on 14th Feb this year that it is in my brain and lungs. All very small, apparently. Just finished WBR and about to start tablet chemo (Xeleda???).
See my oncologist tomorrow, not sure whether to ask about pronosis regards time. Horrible isnt it?
Its all a big pile of poo!!
On a good day I feel like ‘rebel fighter’ on a bad day the whole world is black.
Ruth
Hi Ruth,
I can’t imagine how you feel with this new dx. Wishing you strength and courage.
All the best, Sarahxx
Hi all
Sorry Ruth you have had to join us but welcome.
I finished my WBRT 12 days ago and am still suffering from really chronic fatigue - more brain tired than physical. i find myself power snoozing 3-4 times a day. But am still able to get out and about inbetween. Lost all my hair and have a very very itchy red forehead and dry patches that are sore behind my ears. However considering I have also done 2 cycles of capecitebane during all this, I think I’m doing ok. Hopefully things will start to improve over the next few weeks.
I’m very glad that I decided this time to take the steroids and antisickness right from the start and it really helped me keep my appetite.
Thinking of you all
Louise
Hi Louise,
I must be about 2 days behind you!!
I feel tired and wobbly all the time. They say it can take a few weeks/ months to recovery. Apparently the radio really exacerates the symptoms. I am finding it very frustrating, as I want to get on and squeeze every last drop out of life.
Do you find that if you have a good day , you tend to overdo it and then feel really tired the next day?
Take care
ruth
Hi,
Just wondered how you are Ann B?
Ruth x