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sweetanimo
Member
since
01-05-2012
206
Posts
1
Hugs
07-02-2020
08:31
Hi Lollypop, It is so scary at first and really sorry the first treatment didn’t help with your spine mets. I would definitely ask about them giving you a drug called Denosumab. It’s usually given every 2-3 months as a small injection (either at GP or hospital). It’s kept my bone mets stable for over nine years now. xx
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07-02-2020
08:21
1 Hug
I knew this day would come but wasn’t expecting the amount of progression that was found following PET CT. It’s in my sternum, L2 and left lung (pleura and nodes) and it’s now also spread to my right lung and liver. I’m just waiting on DPD test results and then will be starting Capecitabine. Onc suggested Paclitaxel but really don’t want IV chemo yet! Any tips (apart from moisturising) would be much appreciated! thank you! x
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11-12-2014
01:54
hi there! I was really interested to hear that you are doing this! Can I ask whereabouts in the UK you are and whether they are planning on extending this trial? Thank you! Anne Marie (I have bones and lung mets)
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06-12-2013
08:24
'Twas me! Nearly three years now and it's been brilliant. Met on L2 now gone and shrinkage of other bone and nodes. xx
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31-10-2013
03:48
I can't access either. I have given feedback on SBCAD too. Could you please send me details? Thank you!
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11-10-2013
07:04
I feel that a lot of it was said on the very lively thread on here about SBC awareness day 2013. I also completed a survey if I remember rightly, although my memory is one of the things that suffers too .. The day we are allocated - 13th - is a rather unfortunate number . I also question the logic that we only get one day out of a month. On a more positive note, I do like the BCC #whatnottosay picture - this did ring very true with me! More of this would be great. Having SBC is a bit like always having a radio on which we can turn down but can never turn off, how ever much we'd like to.
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02-09-2013
08:48
Thanks Dawn! Onc just called and I'm to come off Denosumab for the next three months and then wait a month after extraction at beginning of November before starting them again. xx
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31-08-2013
05:11
Hi, There is another four weekly option - Denosumab (XGEVA). It's a painless sub cutaneous injection with very few side effects and has worked wonders on my bone mets. Xx
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31-08-2013
01:11
Thanks for the advice Val! Unfortunately the roots need to come out as there is more risk with the chronic infection than ONJ if I don't have them out. I'm due a jab on Wednesday but because max fax can't get hold of onc she has said to go ahead with jab. I have letter from onc to GP saying if extraction needed I should come off Denosumab for three months so I'm just going to cancel jab myself otherwise this postpones the inevitable for another month! Scary stories Val but I have no choice :-(( Hugs Anne Marie! xxx
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29-08-2013
11:42
I've been on it for 2.5 years (took it off licence under private health care and now on NHS). It has proved to be very effective getting rid of my L2 met and improving my pre SBC DEXA scan! No real SEs to speak of. xx
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29-08-2013
11:38
Thanks Jacqui! Yes. Max Fax is talking to onc who I suspect will recommend coming off Denosumab for the three months. No pain at the moment thankfully! xx
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23-08-2013
10:53
Has anyone had the above? I have to have the remains of a broken molar removed as there is a chronic infection at the base of the fractured roots. I have to stop Denosumab for three months before they will do any extraction. Is this long enough? I thought that it stayed in the system for longer? Really worried about the ONJ risk... x
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14-09-2011
07:58
Hi Broomsticklady,
Maybe you could try your GP?
So unfair.
Good luck,
Hugs
xx
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10-09-2011
07:04
Very much Dislike and have said so on both the BBC and English Threads FB pages.
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08-07-2011
08:16
Hi Nicky,
yep that was me! it was a world wide policy with SwiftCover. Unfortunately it has now lapsed....
Good luck!
Xx
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07-07-2011
11:20
Lovely to hear from you Esha Ness! Glad to hear that you are carrying on with the shopping! Good luck with your PET scan results. Are you joining us in Bristol on the 18th July? Xx
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06-07-2011
09:11
Sorry Buzzy, did it in Swindon in May.. You will love it, amazing atmosphere and you won't feel alone!
Xx
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