Just started reading your thread.So sorry your having a hard time at the moment.Be brave!
I'm saving that seat for you at Cafe Rouge!
Loads of hugs,
I've got 2 more rads, to go the sooner they fihish the better I'm really bad in mask but they have cut some out for my face. Got steroids for 3 weeks in all and then stopping them I think. I am feeling a little better emotionally today for first time since dx. How do you feel generally, I'm scared once I finish the steroids I will feel really bad as just before dx i had started to feel drained, but dont know if this was cos brain tumour or because of something to do with heart, (also just been told last echo showed a problem).
I was admitted to hospital as an emergency in Feb with 3 brain mets. Had steroids to shrink them initially before 5 WBR. Luckily I don't mind scanners, masks, etc. Out of hospital after 10 days, on reducing steroids (2mg a day for the last few weeks) and herceptin every 3 weeks. Things seem to have settled down very well, so I am now reducing the dexaethasone again by half a mg every 10 days. Having head & body scans on Monday to check nothing lurking, but so far I'm feeling fine and not a little relieved.
Best of luck with the treatment.
Thanks for thinking of me, I've had five now (daily for 2 weeks) Went today but machine was broke!
Things keep getting worse, was also told today need to see somebody about heart cos of herceptin. Still coping - Just.
Thanks again, How are you doing?
Just catching up on this thread. Well done for getting through number 1. Surely just knowing what it involves will make the remaining 9 less scary - lets hope so.
Is it weekly you're having it? I haven't had rads either - just chemo and herceptin like you.
It's a bummer about the hair - it's so precious when it starts to grow back. Might it just thin out a bit on the sides, and not go completely?
Thinking of you
Was feeling sorry for myself when I wrote that ( i still am) but we could all do with some good luck. The radiotherapy was fine when I eventually started it. I started to panic when they were marking the mask. I knew I wouldn't like mask but did not realise how bad it would be! In the end they cut the whole face out and offered me some pills. Managed without the pills. Anyway 1 down 9to go.
So sorry to hear this news, Liz. Hope the radiotherapy went ok today. I'll join you in that hope that your luck will change.
Thanks for your support. No haven't had rads just chemo and herceptin. I feel quite calm which is strange for me. I finished chemo in Feb so hair has just started to get to a point were I could nearly dump the wig but apparantly will lose hair at sides, and also back on dreaded steroids but I'm so hoping my run of bad luck will stop for a while after these next 2 weeks.
That is truly crap news. I am so sorry.
I am thinking of you for tomorrow. Have you had any rads before? I'll be having Herceptin tomorrow so will say a little prayer for you while I'm sitting there.
All the best for nailing this bu**er
sorry to hear your news glad they are going to sort it out for you. This site is such a comfort when we are having to deal with rotten illness. There is always someone to help and offer good advice.
Thanks for that. Yes they have been fast in getting me sorted out, could'nt have asked for more. Went to Docs on Fri then back on Tues, after docs I phoned breast care nurse, who phoned onc, who phoned Docs . Then I got a call of BCnurse to say I had an appoitment for MRI that afternoon and I got results following day.
Every time I read your threads I'm moved by how brave Lisa is and how supportive you are, you're both an inspiration, Thank you.
Hi Liz ... the W stands for WHOLE .. so WBR mean Whole Brain Radiotherapy. They give to all of the brain in case there are any cells lurking anywhere else in brain. Its standard treatment and the best to deal with mets and tumours. Lisa had to have her large frontal tumour removed because it was so large and rads alone wouldn't have dealt with it.
Its very scary isn't it once its in brain ... will be thinking about you ... at least they are moving fast. Lisa had to wait some weeks before they did WBR because she had to have the brain op first and thats why she ended up in so much pain.
Love Sue x
Thanks Kate and Cathy
Stupid question- I'm guessing WBR means something brain rads but what does the W stand for?
Only dx with bc last October, started using this site about February not great with terminology!
So sorry to hear this news but it is good they can start the WBR so quickly though.
Hope you can enjoy this weekend.
Sorry to hear that, I saw this thread earlier and thought it would be something straightforward, so I am shcoked to see this.
I am glad they have booked you in for the radio quickly as it would be even harder to be left in limbo There are lots of ladies who have been through WBR here I hope they can be some help for yoou,
Had MRI on Tues, got results Wed, brain tumour! my worst fear, my best friend died aged 31 in 2000 of BC with brain tumour and my cousin Katherine in 1994 also. Hoped it would be too much of coincidence for the same thing to happen to me when I found out I had BC. Starting Radiotherapy on Monday.
Decided after consulting with my mum that bruises on rash may have been where I had been scratching my leg, and phoned husband to see if I should go to emergency docs yesterday but in the end decided to wait until this morning. Anyway completely forgot to mention rash cos of eye.
Booked in for MRI scan 3.30 today. You didn't sound bossy, you sounded concerned. Thanks for your support, I have been told I wont get results today I'll log on when I do.
Take Care Liz x
Hope you get on OK and can find some reassurance. Have been thinking about you since I'd posted as I thought I sounded quite bossy but wanted you to do something. It's so hard when you've been abandoned by your family albeit with the best intention!!! Hope someone was able to go with you today.
It is so bad when these doctors just leave everything in the air especially over a bank holiday. They just don't appreciate the worry they cause do they? I'm not surprised you didn't know what to do and in a state of shock.
I hope you found posting helpful and the replies.
hinking of you and will log on later to see if you are OK
Thanks for your comments I've decided to phone hospital in morning or go to emergency docs , the more I think about it the more annoyed I get, that the doctor sent me to emergency eye clinic and said if eye was o.k to go back 4 days later let him know and he'll consult with onc about organising a brain scan and then left it at that! I think I haven't done something already because I've been in shock.
Bye Liz x
I sympathise. Suddenly I have signs of skin mets round under the eye - lumps under the skin, some problems with eye movement [but none with actual vision], and am terrified that there may be something happening that I really do not want to know about.
However, if it is interfering with vision, I feel you must follow up sooner rather than later.
I think you should phone either your cancer unit - presume as you are posting under secondaries you have access to someone even at the weekend. Otherwise, phone the out of hours doctors or nhs direct now. They should take your problems seriously and hopefully put your mind at rest.
i think this is too much of a medical question for us to answer and i wouldn't want to guess what the problem is.
So sorry you.ve not been able togo away and you've got problems with your health.
I'm having a bit of a panic. Couple of weeks ago left eye started to feel cloudy, got drops off doctor, which did nothing so stopped using them. Week before last when we had great weather I got what I thought was prickely heat. Did'nt go away and I was due to go away today with 2 daughters. As I did not want to be itching all week I went to Doctors to ask for some cream, also asked him to check eye again as it had suddenly felt worse.
To cut a long story short I was told tp go to opticians before I went away then I was sent back to docs then sent to emergency eye clinic. Doc had said if eye was O.K I may need a brain scan, told me to go back to see him on Tuesday. So haven't gone away but husband has gone overnight with youngest daughter ( he's dropping her off with family). Just went to check on rash as it was feelig a lot better and there are 3 bruises there.
After any advice, don't want to phone husband and have him driving back in a panic, but don't know if I should.