Breast Cancer Now Forum

Hi Kara It is with deep sadness that I tell you my lovely friend Nicky passed away in December 2020. She was an inspiration to so many on this forum & I was very proud to know her in real life. She lived with secondaries for nearly 13 years. I miss her very much. Helen x   ... View more

Hi lyndam1 Hope you are keeping well with your treatment. You asked how did I know that I changed receptors: my original biopsy 9 years ago showed HER2 negative, 7 years ago I had a bone met removed from my sternum which tested HER2 positive & following 20 months of both herceptin & kadcyla for HER2 positive disease these treatments stopped working. Onc attempted a liver biopsy but was thought too risky and I was deemed to have switched receptors again so have continued with the HER2 neg chemos until June 2021 when nothing was halting the progress of my liver mets. I was eligible to try Enhertu as I had previously had herceptin & kadcyla but 4 cycles didn't make any difference to the liver mets. In Dec they did another liver biopsy but unfortunately the samples taken were all normal cells as opposed to cancerous ones; I was hoping that we might establish whether I have any gene mutations that would enable access to a drug such as alpelisib - no such luck though! I am not on any treatment at the moment other than denosumab. It is unusual to change receptors but not unheard of - a friend of mine was the same. All the best, Helen x ... View more

Hi Jacksy Thanks for your reply. I am going to PM you now. Helen x ... View more

Hi Jacksy I am about to start Enhertu as well - it's an option I didn't know about until yesterday. My liver mets are increasing and I have already had 14 other drugs in the last 9 years due to the fact that I have switched receptors 3 times. I am very interested to know how you are getting on with it - I do hope it's manageable for you and doing some good. Helen x ... View more

Hi Good luck with the Paclitaxel. Most people tend to have it weekly. It kept me stable for 28 weeks with no breaks so I was pretty pleased with it. From what I've seen on here, 12-18 weeks seems to be the average.  Did lose my hair & had peripheral neuropathy in fingers and toes but otherwise ok.  All the very best with your treatment.  Helen x ... View more

Hi Shelley If you look in the Treatments section you will see a thread called Chemo buddy needed for eribulin which I have bumped up for you. There's a lot of info on it. Not sure how many people are on eribulin at the moment. I posted quite a few times on this thread. I had 23 cycles of eribulin in 2018/19. Diagnosed in Dec 2012, bone and liver mets. Worked my way through 3 hormone therapies, 2 targeted therapies and 6 chemo treatments, Goselerin and Denosumab (still on this one). I found eribulin to be ok for me, quick to administer, no nausea, peripheral neuropathy in fingers and toes and lower legs (wasn't pleasant!) & my hair only thinned rather than complete loss (a bonus, as I have lost it 4 times in 8 years & now boast a collection of 7 wigs!!).    Obviously everyone reacts differently to treatments so I can only say what my experience was.  I wish you all the best with your treatment. PM me if you want to know anything more. Helen x   ... View more

Bumping up for SLee ... View more

Thanks Saskia. I have done as you suggested. Not sure if it will make a difference as I receive regular emails from the BCN Campaigns team with no problem..... Perhaps you can PM me & I will test it! Many thanks Helen  ... View more

Hi Saskia  Just to let you know that I have not had any PMs sent to me in last fortnight so perhaps you can send me one and I will look out for the email notification.  Many thanks  Helen  ... View more

Hi Saskia  Any news on this problem yet? Many thanks  Helen x  ... View more

Hi Gill Totally agree with your thoughts on this. Thankfully we don't have a bell in our chemo ward. I have had SBC for 8 years and spend a great deal of time in the ward so wouldn't like to hear it. You should read this link in which a lovely lady & friend called Jo highlighted this very subject on Jeremy Vine's radio 2 programme and in the Daily Telegraph. She's the founder of MetUpUK, a SBC patients advocacy group.  https://www.telegraph.co.uk/news/2019/07/07/nhs-should-ban-bell-ringing-ceremonies-celebrating-end-cancer/?WT.mc_id=tmg_share_em Helen x  ... View more

Hi Saskia Happy New Year to you.  My email is correct & hasn't changed during the time I have used the forum (7+ years). The problem with email notifications started in January 2020 - please see my first post on this thread from February 2020. Over the last month I have sent and received lots of PMs but, as during  the whole of 2020, not received one email notification.  Many thanks for looking into it. Helen  ... View more

Brilliant news Gillyflower - long may NED continue! Helen x ... View more

Hi Saskia Just to let you know that I have had 4 PMs yesterday and not received any email notifications. Again, I have checked my junk/spam folder and they aren't in there either. Perhaps you can continue to investigate.  Thanks, Helen      ... View more

Hi Gemini111 Just seen your post from September and hoping that you have settled into your treatment now. I wanted to give you some hope - I had my 8 years cancerversary de novo stage 4 sbc bones & liver mets on 19 Dec and am still going thanks to the treatments that have been available to me (currently on my 12th!). Initial diagnosis is a very hard time and it takes a while before you settle into your new but different life. My advice, I suppose, would be to try & live as well as you can. Yes there will always be bad days (scan results day usually) but enjoy precious time with the people that mean the most to you and they will make the bad into good days.  If you want to know anything about the treatments or you're feeling low, the very best place to get advice and support is from this forum. Please do not Google or look at prognosis statistics. Take care of yourself. Helen x ... View more

Hi funnyface, Good to hear from you - please check your Private Messages as I have sent you one. Helen x ... View more

Some lovely messages on here - thank you. Nicky was such a support to many people I have some details of the live streamed funeral service for Nicky which will be on Tuesday 29 December @ 11am. Please PM me on helen44 before Mon 28 Dec 8pm, if you would to join the service and I can send you the username & password to log in. Helen x Message from the family - "Nicky specifically requested in her journals to ‘Celebrate my life, please’. We would have hoped to have been able to do this with you all in person but unfortunately that is not the case, for the time being. Due to the current restrictions, we are extremely limited in numbers for physical attendance to the funeral service, however we are able to have a live webcast of the service which will also be available for the following 28 days, should you wish to ‘join us’ in remembering and celebrating Nicky’s life. The service will be webcast from 11.am on Tuesday 29th December 2020.  Once restrictions allow us to, we certainly hope to be able to bring everyone together in memory and celebration of Nicky, next year. Please use the following link https://www.obitus.com/  to access the live webcast of the service. For more information or to make any charitable donations, as Nicky requested, to the wonderful St. Michael’s Hospice, please use this link: https://www.dignityfunerals.co.uk/funeral-notices/07-12-2020-nicola-neame/ ... View more

Hi Zoe As I have been using PM a lot these last few days I have noticed that yet again I do not receive an email notification when someone replies to my PM. They are not going into junk/spam and you have already checked my account settings and they are correct. Any ideas? Thanks, Helen x   ... View more

Some lovely messages on here - thank you. Nicky was such a support to many people 💞 I have some details of the live streamed funeral service for Nicky which will be on Tuesday 29 December @ 11am. Please PM me on helen44 before Mon 28 Dec 8pm, if you would to join the service and I can send you the username & password to log in. Helen x Message from the family - "Nicky specifically requested in her journals to ‘Celebrate my life, please’. We would have hoped to have been able to do this with you all in person but unfortunately that is not the case, for the time being. Due to the current restrictions, we are extremely limited in numbers for physical attendance to the funeral service, however we are able to have a live webcast of the service which will also be available for the following 28 days, should you wish to ‘join us’ in remembering and celebrating Nicky’s life. The service will be webcast from 11.am on Tuesday 29th December 2020.  Once restrictions allow us to, we certainly hope to be able to bring everyone together in memory and celebration of Nicky, next year. Please use the following link https://www.obitus.com/  to access the live webcast of the service. For more information or to make any charitable donations, as Nicky requested, to the wonderful St. Michael’s Hospice, please use this link: https://www.dignityfunerals.co.uk/funeral-notices/07-12-2020-nicola-neame/     ... View more

Dear ladies, Please check your PMs - I have sent you a message. Helen x ... View more