Breast Cancer Care Forum

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

Hi everyone, Just checking that some of us are still ok for tomorrow's meetup. Nicky & Julia - you will be missed, hope to see you very soon, perhaps you could have a look at some future dates when you might be free. Wednesdays are good for Carine & I am usually around. Welcome to Elizabeth - have PMd you my photo so you know who to look out for in the cafe. Anyone else out there who wants to join us please do - Wed 22 Jan, 1.30pm Spinnaker Cafe, Gunwharf Quays, Portsmouth. Helen x ... View more

Hi Janette Sorry to hear about the liver mets, it's such a shock when they appear when you've been pretty stable for a long period. I was diagnosed de novo ER+, PR+, HER2- with bone mets in Dec 2012 and ticked along on tamoxifen & letrazole for nearly 3 years before receiving the news of the little uggers in my liver. 6 cycles of docetaxel cleared them and then I was on exemestane until Oct 2016 when they returned - my big problem is that the largest one (6cm at its largest) is in the upper right quadrant of the liver which apparently is the most awkward place it can be!! I can't have RFA or liver resection because of its position & the fact that I have multiple smaller mets as well. It took over a year for oncologist to find someone who considered it safe enough to do a liver biopsy - unfortunately they didn't extract enough tissue to analyse so that was a waste of time & stress. Since 2016 I have stability in the liver after Herceptin & Kadcyla (when it was thought I had changed to HER2+), 23 cycles of eribuilin, 3 of epirubicin and 28 paclitaxel. Finally after 6 months on capecitabine, the largest met has reduced to 4cm and the others are reducing too. Nicky08 is my go-to lady for up to date info & support - definitely ask the questions she has suggested. All the very best with your treatment, keep us posted as to what you are put on. Helen x   Hi Bee, Have you started paclitaxel yet? I didn't bother with cold capping and never have, 3 times I've lost the hair. I have a great selection of 6 wigs! All the very best with your treatment, Helen x ... View more

Oh Linda, I am so sad to read this post about your results. Let's hope that there is something you can be given as soon as possible. My thoughts are with you. Sending (((((cyber)))))  hugs, Helen x ... View more

Just had a really good experience with 'Insure With' travel insurance. Have SBC liver & bones, 7 years in, want to visit daughter in Indonesia and expected to run in to problems getting a quote. First company said no, Insure With said yes & will only cost £220 for a single trip policy with excellent medical/repatriation cover. I was very impressed with them. Helen x ... View more