Breast Cancer Now Forum

Correct spelling, please  - should be eribulin I had this  treatment  in 2013 thanks to the  Cancer  Drugs  Fund  -in England . ... View more

good posts folks - and Hi Dawn, been thinking of you waves hand not blIsted anymore no I'm off chemo . there must be some smiles on bcc faces in the marketing department when they check the thread a saying about 'hot cakes' comes to mind. new sbc pins will sell like hot cakes I mean! I hope to be home maybe wednesday ? ... View more

my plan is to pay upfront for the benefit of BCC after all what else can I spend my state pension on ? ! then to give them to 50 ladies. if they want to donate to BCC they will get the money twice -every little helps to raise awareness of secondary breast cancer . ... View more

I would like to pre-order 50 -yes, fifty! -pins... ... View more

And me! (Big thanks ladies for kind words -and to BCC for listening) ... View more

Hi all I'm writing this in hospital. Now on palliative care. An effort to post so this will be my last to the forum. I've other uses for quality time, you'll understand. Good to know some of you on here over the years. Let's keep pressing for better sbc awareness in UK X x x ... View more

Thank you, belinda - and other well-wishers! . I still have two homemade pink-and-black candles here, probably I`ll ask for them to be lit at my funeral  (thanksgiving service). ... View more

Ha 2catlady, well done to notice the change : ) Some years ago I tried making a pink fabric ribbon with black edges, but much better if BCC can make it as a pin badge! ... View more

Hi, so sorry to hear your news, you've had some good replies already.  May I add another...... bc dx 2006 after routine mammo, multiple liver mets found 2009.  Never had surgery, I still have breast primary.  Am ER+PR+ but herceptin negative.  Herceptin is an amazing drug but I just wanted to say to anyone reading this who is HER negative, it is possible to survive for more than 5 years with liver mets.  I've had 4 chemos and various hormonals, good quality of life until about a year ago. ... View more

Looks like the pink/black ribbon is the way to go, to begin with, anyway. BCC could easily change the colours of a ribbon pin badge. Or we could make our own fabric ribbons and wear them to raise SBC awareness!:     I think SBC funding might need a different approach, possibly a new and separate charity? ... View more

Many thanks, Janet! 🙂 ... View more

So... if 3% (or whatever) of funding goes to research into new treatments for SBC... many of us sign up for clinical trials, in good faith (I have done two) but these new treatments are then said to be not cost-effective, so they become unavailable to us... I do wonder whether the general public are now less likely to donate towards this?   And as to the 3%, I'd be very interested if someone from the BCC Secondaries team could give us an up-to-date figure - if they don't have this information I wonder who does.   Maybe off topic for pin badge but let's keep talking.... ... View more

I don't think that BCC ever said the candle is difficult to make - 2 or 3 colours (pink, black, and maybe yellow for the flame), it doesn't fit in well with BCC's marketing guidelines, but I think they would be willing to work with someone (sorry, it won't be me) who might get the candle idea going.   Just for the record, the black part of the candle was meant to represent the later stages of sbc - when anticancer treatment is no longer possible... the candle is still burning. Sorry, I can't find my original post on here... chemo brain 😞   Ribbon, and Chipper's round-and-round idea, are also good ones, I think. ... View more

Marie, I have had multiple bone mets (secondaries) since 2006. and multiple liver mets since 2009.  Primary breast cancer can be cured, but not secondary bc.  Yes, there are many treatments, but sooner or later all of us who have secondaries get to the stage where we cannot have any more active (anti-cancer) treatment such as chemo, and only palliative treatment can be given.   Probably you yourself are well aware of these realities if you have secondaries.  If you don't think that black is appropriate for a "secondary" pin badge, how do you suggest that BCC can develop a marketing item that helps raise awareness of secondary bc? ... View more

Today there is an update from Anna BCC on behalf of the merchandising team. See http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Your-thoughts-please-A-new-gift-shop-pin-dedicated-to-those/m-p/936772#M59808 Responses are needed by 21 April. ... View more

Thank you, Anna, for posting this thread on behalf of BCC.   I hope there will be many responses to this (personally I will not comment on the proposed designs).  If Forum users can reply to this thread, we can all read their views... I think that would be helpful. (But if  users prefer to keep their comments confidential or anonymous, please reply to the email address as suggested.)   Original thread here http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/What-do-we-want-for-Awareness-Day-2015-A-suggestion-a-separate/m-p/895639/highlight/true#M55085 ... View more

OK, here's my experience for what it's worth! As you probably know, there are many types of bc - also TMs aren't routinely used for primary bc as far as I know. I was dx with bone mets 2006 (a few weeks after primary dx, double whammy) and liver mets in 2009.  My TMs are done regularly with blood tests and are looked at by the oncs alongside scan results and symptoms.  My TMs have been a good indicator of what is happening.  I read somewhere (sorry I don't have a link) that for those of us with bone mets, TMs can be helpful.  As someone has already mentioned, CA15.3 levels can be greater than zero even in people who don't have cancer- the "normal" range is below 35.  Mine have gone up and down (at one time I kept a graph) max about 900 when Taxol didn't work for me, then I went straight on to capecitabine and after 2 years my TMs had stabilised at about 70.  Since then there has been an upward trend, I don't ask the oncs 😞 if they go above 1000 I don't think I would want to know.! ... View more

Hi RoseRed Yes there is great support on this BCC forum among us mets ladies. 🙂 You mention 4 chemos... I've also had 4, EC, taxol, eribulin, and capecitabine (twice!) and my oncs have been talking about vinorelbine (tablets) as another chemo they could offer me. I know what you mean about family... but after my bone mets dx 2006 my daughter produced another grandchild, and since my liver mets (2009) I've a lovely daughter-in-law and 2 more granddaughters (cousins).  It's sometimes hard to remind myself to enjoy the good family moments, but well worth it. ... View more

Just popping in to say that I had a planned blood transfusion (anaemia, low haemoglobin) in Nov 2014 and yes, it takes ages, but I did feel the benefits and at my last blood test in Feb this year, the Hb was still at a good level for me. ... View more

 "we all hope that it will raise a small amount of awareness (probably for five minutes) but will get the issues heard more widely" Yes indeed, every little helps...a drop in the ocean but the ocean is made up of many drops.   "BCC do a wonderful job of providing support and information about breast cancer and I am grateful for the support I have received" Yes again, so am I... sbc is acknowledged and there are some very good resources that BCC has produced for those of us with mets, such as the factsheets on various aspects of SBC..   "but they are a support not a research funding charity" Ah yes... but we're probably not allowed to post the names of other charities in US/UK/elsewhere that fund research into sbc/mbc.  or are we? ... View more