Hi Paula,
Sorry it;s taken me so long to get back to you, but I had a week’s holiday.
After diagnosis in mid-February 2008 I was immediately admitted to hospital and given large doses of steroids to shrink the oedema from the mets and reduce the symptoms, which were nausea and dizziness. After a couple of days I was given whole brain radiation every day for a week and continued with slightly lower doses of steriods. After a further week or so I was discharged from hospital and continued to take reducing doses of steroids. A couple of months later my inflammatory breast cancer (IBC) came back, and I was put back on the herceptin which I had stopped having when taken into hospital. This didn’t seem to be having much effect, so I was also given capcitebine, which got rid of the IBC. A brain scan in December 2008 showed that the mets had shrunk to what might just be scar tissue, and the onc thought that this might be due to the capcitebine getting through the blood brain barrier. So by the end of the year I was able to stop the steroids and capcitebine, and I have just been on herceptin since then. Over the last 2 years I have been surprisingly well, but my tumor markers have recently started to rise, which is worrying, and is why I have started to look at this web site again. Hopefully it’s just an unfortunate blip, but I’m waiting for a CT appointment to make sure.
When you are reading the forums, it’s always worth bearing in mind that those of us who chat are generally those who are currently having problems and need help and support. I haven’t looked at the forum for a year while I’ve been feeling so well. So there are probably lots and lots of women out there who are living with the diagnosis of brain mets but aren’t contributing to the forum because they feel fine and are just getting on with living their lives. If you would like to know anything else from me, please send a personal message so that I can reply more promptly.
Best of luck, Lynn
Anna - Latest
Steve had to ring an ambulance on Tuesday morning because Anna could not walk even two steps and did not have breath to talk either.
She had a collapsed left lung and 3 litres of fluid was removed and there was more to come so she had to stay in hospital. Steve hopes she will be able to come home tonight.
She sent me a couple of txt messages on Wednesday and said she was still fighting.She was still upbeat as usual I am glad to say.
I told her all her friends from BCC and Macmillan sent their love.
Am praying for a miracle even tho I am not particularly religious.
Steve said he and Anna are not religious either but do believe in the positive thoughts.
Please join me in sending positive thoughts for Anna and Steve and hope that they have more time together.
Will keep you all up to date.
Lots of love
Sue xxxxxxxxxxxxxxxxxx
Hiya girls.
I’m posting on just about any brain mets link going so sorry if I’m old news x
I’m also sorry to hear of Anna- and of course, us lot- led by Paula, that we have been “blessed” with brain mets.
I had DCIS confirmed NY 06 but upon reflection it was IBC, I was rediagnosed NY 08 with spinal tumours, plural effusion and it was also in my groin & liver. I retired last yr then started course in reflexology. At Christmas my handwriting went a bit funny and my right hand not as good as left in reflexology class. Mentioned this to oncologist who got me in for CT scan on the friday.
On the tues I was diagnosed just before Christmas : ( had radiotherapy NY. Last year I’d been on capcitebinr which stopped working in oct. Had stent put in liver, went on goserelin injections. Got lumps on sternum, lumps on healthy breast, and another plural effusion starting.
Was weaned off dexamethasone,had chronic fatigue then out of the blue had 2 myochlonic seizures. Rushed to A&E. Husband Dave terrified - thought I was having a stroke! I’ve had 12 since but they’ve only Been partial as I’m back on steroids, & also phenytoin anyone else start having them AFTER radiotherapy? The seizures have now completely paralysed my right hand now! X
Sue,
Lots of positive thoughts coming Annas way.Wishing with all my heart she has more time with her beloved husband.
Love
Dot
xxx
Yes, indeedy … tons of positive thoughts coming full force from me too. xxx
Thinking of Anna and Steve, and everyone else affected by this bloody evil disease tonight xxx
me too. This is so sad, its such a rotten illness. Thinking of Anna, and Steve, Hannah, Paula and all of you who have brain mets, tonight, and sending love all round
monica xxx
Sue - thank you for your continued updates of Anna. Both Anna and Steve have been in my thoughts a lot. Please pass on my love next time you are in touch. Anna’s upbeat attitude is quite incredible given all that she is going through at the moment and I shall certainly be sending her lots of positive thoughts.
Lynn - thanks for your post, your treatment is really encouraging to me. I haven’t had capcitebine yet so hopefully that will be a realistic option should I have a recurrence (which god willing, I won’t!!)Sorry to hear your tumour markers are going up, hopefully they won’t keep you waiting long for your scan and results. Let us know how you get on when you get a chance.
Molster - blimey, what a time of it you have had. Not sure what an myochlonic seizure is but I’ve been fortunate in that I have not had any seizures so far. How long after radiotherapy did you get your first seizure?
Theresa - would love to meet up with you and Sarah sometime. Just let me know when you get a date organised and I’ll see if I can make it.
Biking Girl - thanks for your post on the Gamma Knife. It’s great to know that there are some non surgical but effective treatments out there should I have a recurrence. I definitely wouldn’t want my skull opened up too many times!
Everyone - here’s hoping all your treatments are as effective as possible.
Take care
Paula XXX
Hi Paula
gtreat to see you posting - hope things are going OK
think of all you girls with brain mets a lot, and always with love xxxx
monica x
Hi …love and hugs to Anna and Steve…thoughts are with you both.
Helenxxx
Paula
Just wanted to say that your post caught my eye and so I have just read through them on this thread. I think you are doing brilliantly and are so possitive, I am sure this is an encouragement to others on this site. Well done XXX
Morning…just wanted to say that I agree with the other girls on this thread, all those of you with brain mets on here, are on the surface, coping as well as you can under the circumstances. It must not be an easy thing, but offering advice to others while you go through this, is brilliant and thoughtful of you all…you have my admiration and continued positive vibes over the airways!
Take care
Helenxxx
Hi Paula,
I had my brain, thorax, abdomen & pelvis scans on Tuesday, and saw my onc on Wednesday. The initial report was of a tiny area of activity in the brain and another small hot spot in the left breast tissue, but the onc says that there’s nothing significant. So no change in treatment but they are going to keep an eye on me and I’ll be examined every 3 weeks. All of which is better than I feared.
Hope all goes well with you.
Love Lynn
Hi all just popped on to check on you all, you are all so positive and caring, helping each other…sending you all big hugs, luv pauline xxx
Hi All
Our good friend Anna died today at St John’s Hospice, Clatterbridge.
Rest in Peace lovely Anna and thank you for your friendship.
Sue xxxxxxxx
Thanks for letting people know Sue xxxx
So sorry to hear that news… Sending much love to Anna’s family and friends at this sad time xxx
Theresa x
Sad news. Rest in Peace Anna…My sincere condolences to your family and friends.x
omg I’m so sorry and so sad to hear this. My thoughts are with Anna’s family and friends at this very sad time.
Ruby xx