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pam01
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01-05-2012
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23-01-2015
09:24
Very pleased it went so well and that you feel so much more reassured....its good to know there is very logical thinking behind the plan isnt it......We are very fortunate that we are treated in a centre where there is an MDT for ladies with secondary cancer...it by no means happens everywhere even though it is one of the standards of care for treatment of secondary cancer......hope you are able to sleep more soundly tonite. hugs Pamx
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23-01-2015
08:50
Good luck Bev......Im off to the big shiny place today as well for MRI/CT.... results tues....maybe see you?xx
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22-01-2015
09:02
and as we learnt last night at the Welsh Assembly...north wales have agreements for treatment set up at the christie /liverpool etc because there is no tertiary level of service in north Wales....the treatment given is that agreed by the Welsh assembly...not necessarily the sameas English pts when the drug fund was available to them.
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21-01-2015
11:26
Bev...so sorry to hear your news........just a few thoughts which may or may not be helpful.....By all means ask about a second opinion...either to reassure you you are on the right course or to make alternative suggestions. Im sure Prof would see you...but would be discussing in the same MDT meeting with access to the same trials unit so not necessarily a true seond opinion......but still maybe helpful to talk things through with.......you have been very unlucky that the first 2 treatments offerred have not worked...and that doesnt mean the next thing on offer wont. Nor does it mean the treatment has been wrong or that there is better on offer elsewhere....everywhere treatments are kind of trials and no one can be sure they are going to work until they have been tried..they are just going for best guess....Maybe other trials will be on offer elsewhere and that is why it may be worth going further afield for a second opinion....worth getting advice with regards to this from your own consultant or prof.....they wont feel offended or be trying to stop you having access...they know the score and will want you to feel you are having the best available....In the meantime its worth going with the new chemo........its bound to take a bit of time to organise a second opinion. I didnt quite understand how you ended up on chemo and hormone treatment...did he go with your suggestion?....Is that what you wanted? Good luck with all of this...Pamx
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19-01-2015
02:10
Hi Sally.....just posting to say I was diagnosed with secondaries in my spine 4 years ago.....An urgent MRI showed a collapsed T4 in contact with spinal cord. I had emergency radiotherapy over 5 days...followed by a change in hormone treatment and zometa......4 years later my spine is still essentially pain free (a few positional aches and pains and an area of altered sensation)...my markers are stable and I am on capecitabine and denusomab.(I am a bit cautious with all this because I have an MRI scan and CT on friday...but as far as \I know all well!!).....hoping in due course to follow Belindas path!! ....good luck to youxx
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14-01-2015
07:35
Excellent news. Take the time to celebrate!...its good to hear of the sucesses........gives hope to us all!
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12-01-2015
10:51
Julie I am so sorry to hear of Lemongroves death. She was a real stalwart of BCCs secondary forums for a considerable time. she always advised passionately and was very knowledgable and wise....We have much to thank her for in terms of the efforts she made in higlighting the need for cyberknife to be more widely available. She has been sorely missed in recent times. RIP. deepest condolences to her family.xx
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11-01-2015
03:43
Macie I had a cycles break in November both because of sore feet and hands and because I was going on holiday.......My hands and feet weren't completely back to normal but much better.........after such a long period on it I am finding I need an extra week off it particularly for my hands every 2 or 3 cycles (but didnt have timeoff at all for first 17 cycles!!)....my markers tend to stay the same or drop a little when retested before restarting but I think everyone may be different and it does feel like younhave to try a break ...maybe just an additional week or 2 whilst you are awa...and see if it has any effects on markers........since that holiday I have had 2 cycles and then took an additional week off.....will have 2 more cycles all being well and then another break cos i have a cruise booked!.......i dont have problems with breathlessness fortunately.
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11-01-2015
11:10
It seems to me there are at least 2 schools of thought with regards to this......some oncs seem to use cape for as long as its working...with or without dose reductions and short side effect breaks......I am coming up to my third anniversary on it in about 4 weeks...but have scans first so somewhat apprehensive to celebrate this!.....other oncs use it for shorter bursts but with the possibility of returning to it at a later stage..........yes all chemotherapy has potential life threatening side effects...but capecitabine in general has fewer than many others...and many of the side effects which stop treatment are not life threatening as such but extremely uncomfortable and or inconvenient.....the reason for the different approaches is because no one knows which is best in terms of prolongation of stability and/ or survival.....but your onc should be taking your views into account.........
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07-01-2015
10:21
Me too. I didnt respond!! Are BCC on a go slow? how long does it take to confirm or deny the e mail comes from them!!
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03-01-2015
11:07
Morning everyone. Bev good luck with treatment and aftermath! Helen happy birthday...have a great trip......ive taken off my engagement ring nad wedding ring because my hands became sore and itchy esp under rings and I couldnt get to it.....also easier for constant moisturizing!......great for trips to eg eurodisney when you can keep hubby on his toes!! Chocolates hope your cold resolves over the weekend...a pain when it ruins your hols!! Best wishes to all....
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02-01-2015
04:59
The sixty four thousand dollar question with eurotunnel and one I have never been fully reassured about is the fact they say you should have not been diagnosed as suffering from a terminal illness.....it so much depends on how they classify a terminal illness...and gives them lots of wriggle room....Ive used them and my onc says im not in the terminal phase .....but never felt entirely reassured that if the chips were down they wouldnt wriggle out of cover....hence why I would prefer cover with MIA even if it costs a little more
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02-01-2015
03:22
sorry cross posted with Mowser!!
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02-01-2015
03:21
Cw11.you will be pleased to know on this occasion you are completely wrong!! A performance status of zero implies no limitations on activity and fully functioning! Sometimes you have to be fairly fit to undergo trials etc...ie a performance status of 0 or 1. ...zero being the best and 5 being the worst..... Mowser pleased to hear you got insurance with MIA....its my favorite company to try but unfortunately my next panned hols are a cruise in feb...which MIA wont cover so have used eurotunnel.....will be interested to hear about your car!!
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01-01-2015
11:27
Happy new year ladies.........quiet night after a meal out....now enjoying the New Years day concert from Vienna....(on the TV!)...Good luck to us all for 2015!
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28-12-2014
10:15
Helen my capecitabine pack says not to take antacids 2 hours before or after taking capecitabine. Its talking of things like gaviscon.....but not H2 blockers like ranitidine and the like....actually there was a lengthy discussion on this thread some time ago (?18 months ago) about this and the above was confirmed by BCC staff.
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24-12-2014
11:25
Merry Christmas everyone...my chance to snuggle up with a glass of baileys!......hoping everyone is able to enjoy the next few days and that the big C is banished for a day or two. much love Pamx
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16-12-2014
07:14
Well im a bit heavier than Helen!....I have gained weight since being on cape...but not reduced or increased the dose.....when I discussed with my GP she said well at least your not cachectic!!.....whcih Ive taken as an excuse not to loose weight!!(lol)
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