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Milo1
Member
since
01-05-2012
131
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3
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20-11-2014
07:21
Hi Hopepfully I will be able to join your group, I think I have done it right. It is so difficult to get a good fit in tops when you have not had a reconstruction 😞
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16-10-2014
10:19
Hi, I had to beg my onc to come off Letrozole as I could barely walk, was in constant pain and very depressed, she asked me to give it another 2 months so she could look at my next scan. That was last christmas and as my liver mets had been stable for 12 months she agreed and I have been off them since, I feel like a new person, the depression has gone, It feels like a black bucket has been lifted from my head and although i get achey the deep joint pain has almost gone, I am teetal and caffiene free eat very little processed food and walk,cycle or gym for an hour every day, yesterday my onc pronounced me as still stable, some mets have started to calcify although I still have a large spread which has not changed, she said I am fairly unique to her as in 2011 I had a bilateral mx, chemo, stage 4 and classed as unsuitable for a trial by a liver consultant as over 3 tumours and spread, and given 3 - 6 months to live, I feel so grateful to be in the position I am in now and agreed yesterday that I would consider going back onto Letrozole when the mets get worse as it did work.
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10-09-2014
07:32
I agree with the other ladies, told my GP did not want any other invasive procedures of any sort, he was fine with my decision and said he understood 🙂
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02-08-2014
11:57
Thank you for your reply ladies, I do rely on this site for advice and support. I think my lifestyle helps to keep me healthy, I walk for an hour every day, no alcohol, caffine or processed food and I have no stress in my life, I rest a lot as letrozole has left me feeling like an old woman, my onc says if it is working then keep it up, although I do miss a large cold chardonay!!!!!! Next scan is jan so will try to stay well .
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01-08-2014
10:34
Hi Ladies Have had fantastic news this month, my recent scan has showed that the three large tumours in my liver have started to calcify, my onc has said that this means the cancer is dormant at the moment and she will see me in three months for tumour markers. I am not sure how to feel as when first diagnosed with primary and secondary bc in 2010 I was told my prognosis was not good and to prepare for the worst, now I don't kmow what to think, has anyone else had this happen to their liver mets?
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26-06-2014
08:36
Hi Keeks I took ill health retirement from the NHS three years ago due to seconaries,After a while I missed work!!! I applied for a reception job last year and was very surprised to get it, the only health related question was how many periods of sickness in my last job and I was able to answer one, I did not elaberate that it had been six months as that had been counted a one period by the NHS. I take the view that I have not lied to the company. I just omitted to mention my cancer. Some days it is difficult however I only work 12.30-16.30 mon-thurs so I can plan my rest around that. Obviously I have to watch what I say as they have no idea, I am lucky that my Onc is aware of the situation and I am able to have scans/apps around my work hours. I think it is very much a personal decision on whether to tell or not .
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09-05-2014
05:58
A long while ago I saw something on the forum saying that you could get a bracelet warning not to use a particular arm in case of emergency, does anyone know where I can get one from?
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17-12-2013
10:24
I too are celebrating my third xmas since bilateral mx and liver mets, I find each year gets easier as I am aware each xmas could be my last, I go to as many 'light switch on' as possible and my home has stacks of xmas decs and I go to any xmas get together I can to make happy memories for my family, last week I went to see Boyzone with one of my sisters and my mum, I just feel I have to cram as much in as possible as I do not know what the future holds, next scan is the 6th jan so fingers crossed. Wishing all you secondaries ladies a nice a christmas and new year as is possible xx
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20-09-2013
01:44
Hi Katherine ! am 21/2 years down the line from bilateral Mx and liver mets,Fec reduced the little blighters, then they grew on Tamoxifan so swapped to letrozole, horrendous side effects on that including depression so am now having a break from drugs and having 6 weekly tumour markers and 12 weekly scans until they start growing again then more chemo, I cope quite well during the day, then at night I tend to worry about the time bomb inside me, It is good to read on these forums that ladies are living for longer periods of time with mets and I hold on to that thought, Hope you are able to cope at the moment xx
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01-09-2013
08:08
Hi Sara Very much a personal choice, I have had a bilateral mx with no recon and I feel better as while waiting for 2nd mx found being lopsided very difficult, every time I had to put my prosthesis in or out it remended me of what I had lost, now I tend not to think about it, clothes can be a problem when you are flat chested but I think I have found my style now. Best wishes to you whatever you decide x
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24-07-2013
08:27
I agree that you should keep trying to get hold of your GP or Onc, since going on to letrozole I have a tremendous pain/ache in my lower right rib, it feels like I have a football lodged under my rib!!!! Have had scans and Onc believes it to be yet another wonderful se of the letrozole and that while it is working (secondaries in liver) I should persevere Hope you get it sorted soon x
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27-06-2013
06:54
Hi Kirsty16,
The brand which gives me the least aches and pains is accord, my old brand was zentiva, not sure why is is better for me however!!!!!! this last fortnight the ache in my hands and feet have been much worse especially on a morning and sometimes I just want to SCREAM LOUDLY with frustration, I have been going swimming twice a week recently and am wondering if that is making it worse sometimes I do not know what to do for the best 😞
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26-06-2013
06:02
Hiya, I am the same bilateral mx 2011 both armpits chest area and backs of arms still numb, bcn says that it is normal xx
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24-06-2013
09:30
Hiya,
new employers are allowed to ask about your sick record as in how many periods of sickness you have had in the past year, but are not allowed to discriminate if you have a serious illness. My new employer did not ask me anything so I did not have to tell them, I am hoping that by the time I am back on chemo I will have proved my worth and not lose the job. No one knows about my health here as when I moved from wales to england my hair had started to regrow and I decided not to tell anyone about my cancer.
Maybe part time will be the way for you, I do understand about wanting the best for your daughter it is only natural. Have a chat with your BCN maybe she can point you in the right direction for advice. xx
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22-06-2013
07:38
Thank you ladies,
you are all my 'secret support' and help me when thing get tough. So far so good xx
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21-06-2013
08:11
Hi Spudgirl,
sorry to hear you are back here again, do you have critical illness cover? or are you able to take a career break? could you manage with DLA, I had the cover and was able to take ill health retirement from the nhs, I moved back to be near my family, downsized, no mortgage, and have been able to take a year or so to heal and recover (bilateral mx no reconstruction and secondaries) I have just started a part time job which I enjoy but it also gives me time to rest, my new employer is not aware of my condition.The last two years have been the most difficult in my life but I feel that I am finally getting used to the new me. I chewed over my options for a long while before deciding what to do with my life and I think my decision was right for me. Good luck with whatever you do choose to do,it is not easy especially when you have others to consider, however you must decide for you, not anyone else xx
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14-06-2013
07:58
my onc advised me to cut out alcohol and caffine and limit my intake of processed foods, I have secondaries in my liver and figure I should treat it as kindly as I can. I think what you do and don't eat and drink is a personal choice, there is lots of advice out there and some 'experts' would have you on a dairy free vegan diet, it would be nice to have some clearer guidelines
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