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Forum: Living with secondary breast cancer

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Breast Cancer Voices-do you want to be involved?

Posted by Lucy BCC on Wed Jul 13, 2011 11:38 am with 15 comments

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Hi Chrissie So sorry to hear your diagnosis, I have mets in my bones and was diagnosed in Sept. I was advised to apply immediately for Attendance Allowance( that's if you are over 65 or Disability Living Allowance if under 65.Also for a Disabled Blue p...

trash, Fri Dec 16, 2011 10:51 pm
Financial support/benefits for new secondaries dx

Do you think it would be useful for women with a new secondary diagnosis to have access to a 'sticky thread', like the travel insurance one, so that the information about benefits and other financial support doesn't get lost? When you are first diagno...

Posted by alisonm on Wed Oct 13, 2010 9:51 am with 233 comments

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I've just had a look at some of the DWP info about PIP, and, although there is a brief mention of "special rules" eligibility continuing into PIP, there are no details, e.g. what we will be eligible for, and at what level, and when, etc. We've found t...

Marilf, Tue Feb 07, 2012 4:42 pm
New Secondary Service in Cardiff

Living with Secondary Breast Cancer-Cardiff Breast Cancer Care is launching a new service for people with secondary breast cancer in Cardiff from February onwards. The new service, is designed to give you opportunities to learn more about secondary br...

Posted by UK Services Team BCC on Thu Jan 05, 2012 10:57 am with 0 comments

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Living with Secondary Breast Cancer-Cardiff Breast Cancer Care is launching a new service for people with secondary breast cancer in Cardiff from February onwards. The new service, is designed to give you opportunities to learn more about secondary br...

UK Services Team BCC, Thu Jan 05, 2012 10:57 am
Triple negative secondaries/ recurrences

Hi ladies just thought it might be useful for us to have a specific thread for tnbc secondaries as our experiences tend to be quite different to ladies with hormone positive bc (eg treatment issues). My current situation is skin mets (local recurrence ...

Posted by Gingerbud on Sun Oct 03, 2010 10:52 am with 1263 comments

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Glad that's my chemo over just a week or two of side effects to put up with. Tara I was on carbo and taxotere not taxol it's been hard going... Well the tax was hard going but think the carbo wasn't too problematic so hope you don't get too many probl...

Lulu34, Sat Feb 11, 2012 9:39 pm
I am in a really surreal place.........

Hi all, I'm not sure if this will help anyone or if I just need to write things down to people who can perhaps relate to me and the situation. On the 13th of December I went to see my Oncologist, I know it was going to be a toughie........She said that...

Posted by potmaid on Thu Jan 12, 2012 12:52 am with 356 comments

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After staying away from the forum for a while I logged in about two weeks ago and came across this thread - and find myself returning almost every day....I don't want to be a "lurker" so just wanted to send you a big gentle hug Clare. I am still waitin...

Projectwoman, Sat Feb 11, 2012 8:54 pm
Bone mets - please join in

I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less pa...

Posted by finty on Mon Jul 26, 2010 1:44 pm with 2633 comments

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Do keep in touch on this thread JO/Tara to let us know how you are doing. The patches are great and I find that I do not need to use them all the time. I am putting them on at 10am after my shower and remove them before bed. I am usually ok in the morn...

scottishlass, Sat Feb 11, 2012 3:43 pm
Nordic walking anyone??

Having bone mets and being lazy but thinking I need a bit of exercise, I had a go at Nordic walking today and very much enjoyed it. Am going back for a 2 hour class to get all the techniques next week and then plan to get my own poles and walk along th...

Posted by lizcat on Wed Feb 08, 2012 5:16 pm with 10 comments

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Thank you Sue!! Don't recall you mentioning me teaching you...my fees may be quite high!! xx Topsy - not sure if I am supposed to quote websites on here but I found my info on the official website for UK - http://www.nordicwalking.co.uk and there is a...

lizcat, Thu Feb 09, 2012 2:18 pm
Newly diagnosed with nodes in lungs

Hi All I wasn't entirely sure which section of the 'secondary breast cancer' forum to post on. If I've got it wrong please let me know. I was diagnosed with BC on 27 Jan - since then I have had a CT scan and today was informed that I have small node...

Posted by Historygirl on Wed Feb 08, 2012 9:50 pm with 7 comments

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Dear Everyone Thank you so much for your positive and supportive messages. I am on a cloud of fluffy niceness thanks to you lot. And no, I haven't been drinking. Yet. Sarah your message was fantastic - it really cheered me up. I told my family ab...

Historygirl, Thu Feb 09, 2012 1:42 pm
Now been diagnosed with lung, liver and bone mets!!

Following my diagnosis in November 2011 - they have decided that i Know have all 3. Never did anything by half! Anyone out there in a similar postion? Need some inspiration. Also diagnosed with multiple clots on lungs - although they do not seem to be...

Posted by anne2 on Thu Feb 09, 2012 10:21 am with 2 comments

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Morning Anne, Yes, I too don't do things by halves....diagnosed with all three in October 2009 and given a very poor prognosis......but like Belinda says, I am still here! I have had two lots of chemo since secondaries diagnosed and the last lot inclu...

SusieV, Thu Feb 09, 2012 11:33 am
Anyone else with liver secondaries?

Hi Dawn, I'd like to introduce myself as I think we're in a similar boat.... I was diagnosed at the end of march, with a 12mm lump and only a trace of stuff in the nodes. Under the microscope they identified it as stage 3, and I started chemo at the en...

Posted by Jacksy on Thu Sep 06, 2007 10:25 pm with 2412 comments

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Thank you so much for your post dm. Its so good to hear such good news. I have read many of your posts and they have helped me greatly during these first few weeks. Am praying am in the same boat in 5 years time. Thanks again, Jennie

jennie6996, Wed Feb 08, 2012 9:34 pm
Knocked back again.......

Hello Ladies, I really need your help & experience as I'm feeling pretty low at the moment..... Was diagnosed with bone mets over 18 months ago & have tried various treatments to keep them at bay (Femara, Capecitabine & Taxol), but they keep on winni...

Posted by Dugsy on Tue Jan 31, 2012 8:20 pm with 12 comments

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Hi Dugsy and all you other ladies fighting out there. I know exactly how you are feeling as i have been on different chemos for over a year now. I have liver, bone and lung secondaries which are all advancing. This time last year i started capecitabi...

trishg, Wed Feb 08, 2012 12:01 am
Liver and bone mets

Hi ladies, I havent been on here for a while because I have been in and out of of hospital for weeks finally been dx with liver mets and some small mets to the lowere lumber region. I have had to treatemnts of taxol and have 3rd one next week.....ju...

Posted by SheanaY on Sun Feb 13, 2011 11:06 pm with 245 comments

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Hi m1yu How hard it is to be awake at night let alone with pain and aches. Have you spoken to anyone medical about what may help you get a good nights sleep? until you see the Consultant on Monday, . Hang in there if you can and call on the forum whene...

Esha Ness, Tue Feb 07, 2012 6:32 pm
Finger nails after taxol

Just finished 18 weeks of taxol and hoping to start feeling better. However the finger nails that were starting to play up have become a nightmare - they are all painful and loose but a couple have obviously become infected and i don't know what to do ...

Posted by sarcath on Mon Feb 06, 2012 11:03 am with 5 comments

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Hi And thank you all for helpful comments. Gave in today and rang onc outpatients, was ordered in promptly and prescribed not one but two antibiotics. I too had docetaxel some years ago but nails seem worse this time. As long as the infection clears u...

sarcath, Tue Feb 07, 2012 4:32 pm
worried about my Mum's BC

Hi, I'm not sure if this is the right place to post this, sorry if it's not. MY Mum was diagnosed in the summer with a very large tumor, 10cm and 1 lymph node involved. She had mastectomy and lymph nodes removed and then had rads and she is now on Letr...

Posted by Josie74 on Fri Feb 03, 2012 9:00 pm with 8 comments

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Thanks Angelfalls, Chris and Cackles. Yes it's been an awful time for us. Mum is 78 but acts a lot younger, she's very independant. FOr instance after her mastectomy and lymph dissection she was told not to drive for 3 weeks but she took no notice and ...

Josie74, Sun Feb 05, 2012 8:13 pm
Inflammatory breast cancer shocking news

I was diagnosed with inflammatory breast cancer in October 2011 and was told it had spread to bones (spine and rib) we went to see the doctor yesterday and the good new was that the tumour had shrunk, the bad news was that my life expectancy is one to ...

Posted by Sunnychair on Thu Feb 02, 2012 1:28 pm with 10 comments

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Hi sunnychair When I was diagnosed with liver & bone mets, I was told I'd have between six months & two years - that was in 2003. No one can predict how we'll respond to our treatments, or how much impact our BC will have on us - do please talk to you...

Marilf, Fri Feb 03, 2012 11:58 pm
Photoshoot

Our marketing team is looking for women with secondary breast cancer to take part in a photo shoot in London on 14 February, to appear in new photos for our leaflets. If you’re interested in taking part, please email clare.kemsley@breastcancercare.org....

Posted by Sam BCC on Fri Feb 03, 2012 5:49 pm with 0 comments

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Our marketing team is looking for women with secondary breast cancer to take part in a photo shoot in London on 14 February, to appear in new photos for our leaflets. If you’re interested in taking part, please email clare.kemsley@breastcancercare.org....

Sam BCC, Fri Feb 03, 2012 5:49 pm
Paclitaxol/Taxol

Hello, I'm due to start 18 weekly sessions of Taxol on Tuesday & would really like to be in touch with people who are going through the same thing as me, for moral support!! So thought I would start this thread & hopefully get to know some of you bett...

Posted by Dugsy on Thu Aug 18, 2011 4:48 pm with 110 comments

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Hello all Well I did it - 18 taxols and waiting to be clobbered with SEs which were bad enough last week. What family pressure will make you do! So now I wait 3 weeks for scsn and another 3 weeks for the results, so 6 weeks in all. So now I am just on...

sarcath, Mon Jan 30, 2012 5:27 pm
Letrozole - side effects?

Hi all. Well, I had 3 x taxotere and a scan, to be told it wasn't working because the tumours are still growing and I started letrozole 10 days ago. Something seems to be havingan effect because I am having MASSIVE hot flushes, much worse than normal...

Posted by daviesuk on Sat Aug 22, 2009 6:10 pm with 9 comments

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Thanks Lucinda, Ive just started taking Adcal as my calcium levels are low due to me eating a low calcium diet. Ive thought about taking Cod Liver Oil caps, do you have any thoughts on that?x

poppett, Mon Jan 30, 2012 12:20 pm
Chest pains + worried abut blood clot :(

Hello ladies I'm after some advice please... For amost a week now, I've been having occasional 'attacks' of severe chest pain. It's like severe trapped wind/ indigestion but unbelievably sudden and painful. The pain is across centre of chest + across s...

Posted by Gingerbud on Sun Jan 29, 2012 6:44 pm with 5 comments

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Tina its best u go to a e at least it will put y mind at rest I get centre chest pains but they tell me it's the centre nodes pressing on nerves I get weird feeling like trapped wind but floating around my back chest tbh I don't think they know half th...

laura64, Sun Jan 29, 2012 7:36 pm
Afatinib

Hi, I have just joined. I was diagnosed with secondary breast cancer in December 2011 which has spread to my liver and lymph nodes under my (other) arm and I have two tiny spots in my pelvis and ribs. I am on a trial drug called Afatinib and would be...

Posted by Billiebobs on Wed Jan 25, 2012 2:45 pm with 8 comments

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Hi Alesta29, It's great to hear you are doing well and back at work. Bags of energy sounds extremely encouraging. I feel tired sometimes, but not sure if the treatment, or just my age !! Anne x

Billiebobs, Fri Jan 27, 2012 2:19 pm
exemastane

Hi there, I have been taking exemastane since may 2008 i was at that time diagnosied with secondary breast cancer to bones...i am stable since that time t.g. just would like to know if anyone else has been on this med long term over 3 or 5 years and al...

Posted by chrystal on Thu Jan 26, 2012 1:37 am with 3 comments

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Hi Chrystal, I have just started Exemestane - been on it for 6 weeks now, so I was really encouraged to read your post! I have bone mets & did have a tiny amount of fluid in my left pleura which was not detectable on my last scan in November, after a ...

Dugsy, Thu Jan 26, 2012 5:12 pm
Can anyone help me?

Hi everyone I have been reading through posts on the site and have been blown away by all of the amazing people that post their stories on here. I wonder if anyone could offer me any advice. My mum has been diagnosed with stage 4 breast cancer with l...

Posted by adelelouise13 on Sun Jan 22, 2012 5:01 pm with 5 comments

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Hi Adelelouise Sorry to hear about your mum. As it has been said chemo is hard but is doable.On my good days week 2 or 3 before the next dose i used to go out for lunch or coffee and a good slice of cake and a good catch up with friends and family. We...

silverjill6666, Tue Jan 24, 2012 12:03 pm
Lung mets - please join in

Hi all Can I start a designated thread for those with lung mets? I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought. If you agree and also have lung mets can you check in here? Thankyou

Posted by nvlmevans on Fri May 27, 2011 9:16 am with 207 comments

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Thanks FranCescap29 It's good to hear positive stories, and thanks for the trial information, i have written it down. The reason my onc was so blunt is because I have inflammatory breast cancer, with no response tonFEC-T, so her theory is most chemos...

Blackspotk, Wed Jan 18, 2012 1:09 pm
tonights Livechat 17th Jan 2012

Hello Just to let you know that tonights secondary Livechat has just started and will go on until 9.30pm. Here is the link if you would like to join us. http://share.breastcancercare.org.uk/community/live-chat/ June, moderator

Posted by June BCC on Tue Jan 17, 2012 9:44 pm with 0 comments

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Hello Just to let you know that tonights secondary Livechat has just started and will go on until 9.30pm. Here is the link if you would like to join us. http://share.breastcancercare.org.uk/community/live-chat/ June, moderator

June BCC, Tue Jan 17, 2012 9:44 pm
Conrad Blandford Hair and Scalp Care session - Sheffield

Come along to our free Living with Secondary Breast Cancer monthly meeting on Thursday 2nd February and learn about the range of support, treatments and options available for caring for and maintaining the hair and scalp after hair loss. Presented by C...

Posted by UK Services Team BCC on Tue Jan 17, 2012 4:43 pm with 0 comments

Latest comment

Come along to our free Living with Secondary Breast Cancer monthly meeting on Thursday 2nd February and learn about the range of support, treatments and options available for caring for and maintaining the hair and scalp after hair loss. Presented by C...

UK Services Team BCC, Tue Jan 17, 2012 4:43 pm
Any1 delayed chemo 2go on holiday???

Hi ladies just a quick question. We want to go on holiday for a week- just tenerife not long haul. Anyway, I'm on eribulin so have infusions 2 out of 3 weeks. I was thinking of asking onc if I could delay cycle 3 or 4 just by a week to have a holiday. ...

Posted by Gingerbud on Sat Jan 07, 2012 2:49 pm with 21 comments

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Hi gingerbud Don't anybody shout at me- and I'm not advising anyone else to do this - but I went on holiday last year 2 months after my brain mets diagnosis (i also had liver and bone mets) and while I was on xeloda. My onc advised me against it as he...

tillycat, Tue Jan 10, 2012 12:30 am

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