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Bevlaar
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01-05-2012
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13-05-2015
08:35
Hi tillymint. Yes my primary was TNBC in 2005 no nodes. Had lumpectomy chemo and rads. Then new primary 2009 in same spot but weakly positive so not recurrence of first. Put on tamoxifen after having mastectomy.. Then in aug 2013 dx with secondaries in right lung. Started on chemo july 05. Stopped responding after 3 months. Have since been put on 3 others. Last 2 didnt work either so hoping this one Vinorelbine may work. My onc says i prob have the type of cancer that just doesn't respond to any chemo. I think i only have 1 option left after this. But in march this year was also dx with brain mets...4. So had WBR which ended on 15 april but I'm still suffering the awful fatigue from the radiotherapy. ...i still feel as lousy now as i did 4 weeks ago. Hoping it'll start to pass soon . Hope your treatment goes well. Love bev xxxx
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12-05-2015
11:12
Sorry havdnt posted for while. Still suffering the awful fatigue from the brain rads. Cant do anything...falling asleep on and off all day. Started my 2nd cycle of Vinorelbine last wed. Been ok on that. Have my next scan on 11 june but not feeling hopeful as ive noticed that the small swelling on front of my throat seems bigger and my voice is quieter....also when i cough the sound is different from the airway. More wheezy. Ive had to cancel my holiday Helen as its only a month away and i dont feel fig enough to travel. ..i cant even walk on my own outside the house as I'm too disorientated and giddy. Onc says this is still side effect of rads. I had a gut feeling months ago that i wouldnt be going....everything seems to have been snatched away from me. Hope you're still well and treatment still going ok Love bev xxxx
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27-04-2015
10:14
Hi ladies...sorry for not being one here much lately. Its all down to having the chemo and rads at the same time....(er...who's brilliant idea was that???) Now i know why my onc was so reluctant to do them both together. ...I've been so poorly the last few weeks with the side effects. The worst se's have come from the radiotherapy though not the chemo. Never known fatigue like this and have had to spend most days since starting it in bed. But onc started me back on steroids on the weekend and that's made a big differences. One step closer to normality!! Hope everyone else is doing ok. I may not post on here as often but thats because I've had so many texts and emails from family and friends. ..and just been too tired to keep up and reply to everyone...my phone is constantly ringing or beeping i have had to keep it either on silent or switched off! Had been wondering about our "regulars" ....Chocolates, helen, nicky, janette, lynnq, barton...and anyone I may have missed out. I'm so touched by your lovely comments. This is beginning to sound like an awards ceremony lol !! Goodnight ladies...speak soon. Love bev xxxxx
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17-04-2015
09:19
Im not doing too badly thanks Nicky just lot of fatigue. Im just so disappointed that I'm not going to be able to go on my holiday to greece with the family in june. Was so looking fwd to it and lets face it....realistically we could have been looking at my last holiday :-( I touched on the subject in Oncs office and noone said anything....just lowered their eyes .....i hate this ****disease. Its spoiled so much for me and the family. X
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17-04-2015
09:11
Will be lovely to get out of the house again! Very tired this morning so still in bed but still early days since rads finished wed. Starting chemo that same day has zapped me as well I think! Anyone know when I'll start feeling stronger? I feel beter in myself since changing the steroids on Wed just a lot of weakness. Second dose of Vinorelbine due then next wed then week off. xx
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14-04-2015
10:32
Thanks for all your birthday msgs! Had loads of lovely cards and gifts...too much! Last radiotherapy tomorrow and its gone smoithly so far. The only thing I'm feeling is still weakness and tired from having had the seizures. Realky wiped my body out!! But I'm feeling stronger everyday now so recovery is happening! Soeak soon ladies. Enjoy the sun! xxxxx
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11-04-2015
04:18
Had my first 2 rads and feel the symptoms have eased already. Still a bit shaky on my feet but after 5 seizure its normal. No other side effects of rads. Seeing onc on wed morning at clinic an hour after the last radiotherapy. Speak to u all soon....enjoy the weekend xxx
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11-04-2015
03:41
Aah well this certainly was a different birthday this year! Not the one we envisaged but 2 days into radiotherapy and alls going well so far.
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09-04-2015
07:07
If im well enough then at clinic next wed i can start new chemo VINORELBINE ...i think the foll tues.
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09-04-2015
06:58
Thank you. Had first rad today....all of 5ins! Head nurse chatted to us first. Didnt seem to make a big deal of the side effects. Tiredness mainly but said may not even lose all hair. Eyelashes and brows not affected. Lets hope its blasted the little uggers into oblivion!
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05-04-2015
09:50
Thanks sheila and olives. Thats comforting. Yes am on dexamethasone 2mg daily....which really zaps me out! And levetiracetam 500mg twice daily for the seizures. Trouble is...I'm absolutely fine waking up in mornings.. feel i can get on and do things. But 2 hrs after taking a dex I'm fit for nothing for the rest of the day till about 4 or 5! I thought steroids perk u up! Its an effort even to get dressed. Im hoping theyll stop them shortly after the rads.? So much to worry about because i cant start more chemo either until i finish and get over rads. Xxxxx
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04-04-2015
04:37
I have 4. All just over 2cm. Said cant do stereotactic. I was going to ask onc about chemo wafers too. But the lung mets not responding so far to chemo either. Noone seems to be giving many optiins. Apart from Vinorelbine after the rads. If im well enough from rads side effects.
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02-04-2015
05:14
Ah well......not good. Was 20 mins into the consultation at 2.30pm tues...next think i remember was waking at 8am the foll day...wed.. i had a seizure in his office. Knew nothing. They apparently called the paramedics and took me over to University Hosp. I had ct scans as well and cant remember that either. Came home 9pm last night. Im so scared now cant begin to tell you. They're going to do rads next week now and leave chemo. So no chemo again. Was also told today that no guarantee the rads will work. So.. doesnt sound like a lot of hope. Has anyone else gone through this? Have rads worked for you?
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30-03-2015
07:35
Thank you. Just a quick hello.. im feeling absolutely fine. Mentally in a better place than 2 weeks ago after having the new dx. Onc doesnt seem to be in a hurry to treat the brain mets...so plan is to get the Vinorelbine in me first this week then look at poss rads afterwards. But at this stage because I'm asymptomatic leaving well alone. Im still out shopping cleaning meeting friends etc. Just making a nuisance out of myself in general! It all just goes on for now as normal i suppose. Just praying that a treatment starts working soon! My precious family holiday (fingers and all other body parts crossed!) is in 10 weeks.....soon as chemo finished.so praying the se's will be kind to me before i go! Lots love xxxxxx
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27-03-2015
07:24
Well i was up with the larks so emailed and confirmed my appt in London for tues...they cdnt do monday... and emailed my hosp onc sec to fax or email the copies of reports they want in advance. Just waiting to hear theyve done that ok for me. Very apprehensive and dont feel myself at all but at least i have 9 weeks of Vinorelbine yet and brain rads after that. Xxxx
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27-03-2015
04:30
Is there anyone at all here having successful treatment for brain and lung mets?? Im feeling so lost and scared. Especially as lung mets not responded yet to chemos since last Oct.. 😧 Cant seem to focus to even sleep let alone do anything else! Havent started WBR to brain yet so sort of pushed that onto back burner for now. Xxx
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26-03-2015
07:06
Thanks for all your lovely comments and advice. Yes rang Mars and wd have to wait for my gp to refer..about 2-3wks and send loads letters reports scans etc first. £600 for 40 min consultation. The team told me today theyre not sure if there will be trials there at this time for both lung and brain. The LOC say i can fax and email just last few copies of scans ct reports and letters the day before i go. £350 consultation 45 mins. All seems a bit easier especially access. 20 mins from paddington. I'll be honest and say i cant see them offering a lot more for me as options but will try. And of course i dont know how much it will cost as im private with no ins. Ive heard tho that the drug trials if u get on them wouldnt cost? Just private drugs. Is that right info?And i bet they cost the earth....i cdnt possibly afford. Its so worrying xxx
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