Breast Cancer Now Forum

Hi  I have had Denosumab since Dec 2012, it was licensed in Oct 2012. During this time I have had it 3, 4, 6, 8, 9, 12 & 24 weekly depending on whichever treatment I am on. Currently due to in part to Covid, I am 24 weekly. My oncologist told me that Denosumab stays in your system for a long time & most oncologists tailor the frequency to your individual requirements alongside treatment. Hope that helps.  Helen x ... View more

Letrozole not metronome! Autocorrect at work... ... View more

Hi  I have experience of both docetaxel & palictaxel. Diagnosed Dec 2012 de novo SBC with bone mets & nodal disease. Had docetaxel for 6 cycles in Nov 2014 when I had spread to liver, this treatment eliminated the liver mets. Oct 2016 liver mets returned, had eribulin for 23 cycles then paclitaxel for 28 weeks with no break. Didn't bother with cold cap as I have a good range of turbans & wigs and quite like changing my look! After paclitaxel I moved on to epirubicin for 3 cycles & then capecitabine for 13 months. Progression in liver this month has found me back on docetaxel-apparently I can revisit it because I had such a good response the first time and wasn't taken off it because of progression. This will be the 4th time I have lost my hair so getting used to that side effect!! Also I want to mention that I have also had tamoxifen, metronome & exemestane & 18 months on Herceptin & Kadcyla when I was thought to have reverted to HER2 + receptors - I have now gone back to HER2-. All in all, a lot of different treatments in nearly 8 years! I am so grateful to be still here & try & make the most of life albeit in lockdown at the moment.  Take care & I wish you all the best with your treatments. Helen x ... View more

Hi Peggy I hope you're getting on ok with eribulin. As Nicky08 has said, I had 23 cycles with no break starting April 2017. I found it a fairly doable chemo, my hair thinned quite a bit but I kept it in a pixie cut for a few months before it returned to bob length & very thick again. I never needed the gcsf injections but do ask your onc if you feel that they might be helpful - you should definitely be able to have them. I didn't bother with the cold cap as eribulin is a very quick treatment and actually have never used it (lost my hair completely with docetaxol, epirubicin & paclitaxel). I did suffer a bit with peripheral neuropathy in my toes but found that went away if I sucked ice cubes whilst having the chemo - a tip I picked up from Nicky08 whilst on docetaxol! Been on treatment since Dec 2012 when I was diagnosed de novo sbc in bones, and liver mets came along in 2014. It is a roller coaster of emotions but over time you do learn to manage and try and live as well as possible. Good luck & do read the thread 'Chemo buddy - anyone on eribulin' Helen x   ... View more

Hi Judy & Elizabeth Just PM'd you. Helen x ... View more

Hi Judy Can you Private Message me your email address & mobile number please? Then I can set up Zoom & WhatsApp groups & we can meet up. Thanks, Helen x ... View more

Hi everyone, Carine - how did your phone appt go on 6th May? Sorry you have had some progression - do you know which treatment you'll be on next? Nice to hear from you Judy - am pleased your ribociclib is still working ok. Nicky & Julia - hope all is well with you both. Elizabeth - we didn't get to meet you last time & I was wondering how you are getting on in Portsmouth following your move. Didn't know whether you wanted a virtual meet-up on Zoom or WhatsApp sometime? I am in a support group on the Island & I hosted a 30 minute Zoom meeting yesterday which was lovely. I would need mobile numbers & email addresses from you all though - send them to me on a PM if you would like to & I can set it up. I am continuing with cape for the time being, MRI at end of June. Stay safe my friends. Helen x         ... View more

 Hi I have had the government food parcel delivered for the last 6 weeks despite changing my answer to the food question 3 times! I'm ok for supermarket delivery so don't need the parcel but the man delivers it so early in the day I cannot ask him not to leave it - will put a note on the door as you suggested Nicky. We have been giving it to an elderly neighbour on her own so it's being used. Hope everyone is coping ok & getting their treatment. Helen x ... View more

Hi Gina As far as I can remember (last session was March 2019) I didn't suffer with side effects too much. I think I have been extremely fortunate over the years (7) and different chemos (5) in that I have not once been physically sick. Had the odd bout of nausea but took metachlopromide to combat this, did have peripheral neuropathy in my toes but not on paclitaxel. One tip I got from Nicky08 is to suck on ice cubes whilst you're having chemo as it kinda works like the cold cap & prevents mouth ulcers & sores - again, it seemed to work for me. Have got used to the hair loss now. I did feel quite tired on paclitaxel but try & pace yourself & don't do anything too strenuous. Hope that helps, good luck. Helen x ... View more

Hi Gina I had 28 weekly sessions of paclitaxel & yes unfortunately you do lose your hair. Have lost mine 3 times & never used the cold cap as I couldn't be bothered to. I have over 30 different turbans & 6 wigs in my collection!! All the very best with your treatment & I hope it does the trick for you. Helen x ... View more

Bumping up for Mackers. I was on Kadcyla for 4 months back in Oct 2016, it wasn't too bad as far as I can remember. The reason I came off it was because I reverted to HER2- so it didn't reduce my liver mets. I am still here after 7 years with SBC & currently on capecitabine(my 5th different chemo). All the best with your treatment.  Helen x   ... View more

Just completed this survey. It's for a research project dissertation on ' Cognitive functioning and emotional vulnerability in secondary breast cancer'. You complete a questionnaire & then do some cognitive tasks - very interesting & I hope it helps. Already been sent my Amazon voucher as well! ... View more

Hi ladies OMG what a surreal situation we find ourselves in! Living with SBC is bad enough let alone this awful pandemic. I am settled in for the 12 weeks at least isolation and my OH too (he's asthmatic). We are trying to make the best of it but missing social interaction with family & friends - I can't play in my band & we've cancelled our summer season, there's no mens' cycling to follow (major blow for me!) and we have had to postpone our holiday with grandchildren celebrating OH's 60th until the end of October. Plus we were hoping to visit daughter & grandson in Indonesia but the UK are officially banned from there 😷 and of course there's no non-essential travel anywhere. Still on the plus side I had a scan 2 weeks ago & the liver mets have shrunk ever so slightly so I continue on cape tablets - yay. I had an interesting day out in Parliament with the Breast Cancer Now Campaign Group meeting Jo Churchill, Health Minister - https://breastcancernow.org/about-us/news-personal-stories/delivering-our-secondary-breast-cancer-petition-cancer-minister?utm_medium=email&utm_campaign=bcam-secondary&utm_source=Policy_and_Campaigns&utm_content=130320_Secondary_petition_hand_in_action_taken   it would be lovely if we could all update on here - life in general, treatments, scan results etc - as we are not likely to be meeting up in person for a long while. Miss you ladies, stay safe. Love Helen x ... View more

Hi Sian That's amazing you remembered I'd clocked up 23 Eribulin cycles! So pleased that you are currently stable and tolerating treatment. After eribulin I managed 28 weeks of paclitaxel, 3 cycles of epirubicin and have been on capecitabine since last June. Had MRI results today & liver mets have shrunk a bit so very pleased about that! Take care of yourself. Helen x ... View more

Hi there, It's totally understandable to be anxious about starting your treatment, be kind to yourself and try and think that it's the first positive step in your journey to 'living well' with your SBC. Have you got someone to go with you to the chemo unit? The first visit is a bit scary but in my 7 years experience of living with bone & liver mets, it just becomes part of your life & a new routine to deal with. Chemo nurses are usually really lovely and you can build up a good relationship with them. They will allay any fears you may have. Which treatment are you starting? All the very best. Helen x   ... View more

Hi Erin Please can you move this post to the Living with secondary breast cancer section of forum, more likely that people will see it there. Thanks, Helen ... View more

Thank you Zoe ... View more

Thank you Zoe. I have successfully sent a PM just now. What about email notifications for new private messages? I have checked My Settings & the box is ticked correctly for PMs. Regards, Helen ... View more

Hi everyone, I'm afraid you will have to count me out for February. Very sadly my father in law passed away on 25th Jan and I am supporting the family at the moment. Not sure when funeral will be so can't really commit to a meetup date. Would love to see you all very soon - all the best with scan results & treatments. Helen x ... View more