Breast Cancer Care Forum

Hi Carolyn   All the very best with your treatment on paclitaxel. I managed 28 weeks of paclitaxel from June '18 to March this year! Have bone & liver mets. Worst side effect for me was peripheral neuropathy in my toes for first few weeks before a chemo nurse suggested resting my feet on a cold cap wrapped in a towel whilst I was having the IV. Amazing results! Neuropathy virtually cleared up! Otherwise I found paclitaxel pretty tolerable. Currently on capecitabine having worked my way through 3 hormone therapies, docetaxel, eribulin(23 cycles), EC, paclitaxel, Herceptin and Kadcyla (when I was found to have changed to HER2+ & have now reverted to negative again - whole new story!) in nearly 7 years. Hoping for a good spell on cape as there aren't many chemo options left available to me ......   Keep us posted as to how you get on. Helen x ... View more

Excellent, shall we say Wed 30th Oct 1.15pm at the Spinnaker Cafe then? Is 1.15pm ok for you Nicky? Quarter past or half past the hour is better for me as the catamaran docks at five past the hour! Anyone else out there who would like to join us, we usually meet at the Spinnaker Cafe in Gunwharf Quays in Portsmouth for a catch up and tea & cake, very informal. Please come along - we're very friendly Helen x ... View more

Hi Jo Just wondering how you are getting on with capecitabine. I started it in June and it seems tolerable so far. This is my 10th treatment in nearly 7 years of bone & liver mets besides taking Denosumab and Zoladex alongside. My last scan in Aug showed improvement in the liver so hoping it's still working when I am scanned in Nov as I haven't many options left. Hope you're doing well and anyone else on cape, the thread has gone a bit quiet recently.  Helen x ... View more

Hi everyone  Lovely to hear from you all. I can do all those dates Julia, happy to go for 30th Oct if Carine can only make it then. Fab news about your upcoming nuptials Carine! Good luck with the scan results. Exciting times ahead for you Julia with grandchild.  Nicky and Judy - hope you're both ok. I know you have teeth problems at the moment Nicky so hope that you're not in pain. Helen x ... View more

Just tried to renew my annual Eurotunnel insurance & they have now made it a condition that you have a booking on Eurotunnel within the next year. I have just used them for my trip to France but that doesn't count because it has to be a future booking. Apparently this condition was brought in a few months ago but Eurotunnel do not inform you as an existing customer  - I have told them they should have done so! Now to find another policy..... Helen x ... View more

Hi everyone This is the link to the SBC survey I was talking about at our last meetup. Please can you complete it & tell as many people with SBC that you know to do so. http://www.myonlinesurvey.co.uk/BC19DMGS/ Thanks, Helen x ... View more

Lovely to see Julia & Carine yesterday. We missed Nicky & Judy - hope you recover soon both of you. This is the link to the website I was talking about https://www.abcdiagnosis.co.uk/ - have a look. Also look out for the BCC Secondary Patients survey which I am involved with & mentioned to you, it should be coming out in July I think. See you soon, Helen x ... View more

Sorry to hear about your toothache Nicky, hope it's sorted out soon, will miss you this afternoon.  I will be there for 2pm. Helen x ... View more

Wed 12th June is perfect. So excited for you Julia! My youngest grandson & daughter have just arrived for 2 weeks from Indonesia,  a surprise visit. We have a busy fortnight ahead, including me going to the Penny Brohn centre for a course. Good luck with eribulin again Nicky. I start capecitabine 5th June as EC failed completely ☹   Be lovely to see you all 12th June & anyone else in the area who wants to join our informal group 😊 Helen x ... View more

So saddened to hear of Carolyn's passing. She was such a lovely, bubbly lady full of warmth and great humour. Rest in peace Carolyn, you will be missed. My thoughts are with your family and friends. Helen x  ... View more

Hi  I have just bumped up the Travel insurance thread for you. Sorry you find yourself with this diagnosis but please be reassured that you can get travel insurance even on continuous treatment. I was diagnosed straight to stage 4 in Dec 2012 with bone & liver mets and have been on continuous treatment including several IV chemos for over 6 years. I have travelled 4 or 5 times a year to Europe using Eurotunnel insurance & MIA insurance. I was told by onc to say 'I have secondary breast cancer in the liver & bones; it is a chronic illness for which I am on continuous treatment and I have not been told I am terminal'. As Didi says, before you ring have dates handy of diagnosis, treatments, scans etc. Just as an example I have an annual policy with Eurotunnel which covers myself & husband for mainland Europe £80. When I went to Mallorca last year I was in the middle of 28 weekly sessions of paclitaxel & it cost £192 for a week's cover with MIA (Eurotunnel don't cover islands).  Good luck & happy holidays.  Helen x  ... View more

Bumping up for 1972Rach ... View more

Nicky, you are one of the most inspirational ladies I know. The knowledge and support you give here on the forum (& in real life at our group) is so helpful. You have been through so much and still going strong, here's to many more cancerversaries. Helen x  ... View more

https://breastcancernow.org/news-and-blogs/news/we-respond-to-nice-approval-of-abemaciclib-with-fulvestrant-for-use-on-the-cancer-drugs-fund   Up to date news about abemaciclib, 2nd April. Very encouraging for those of us who've had several chemos & hormone therapies already.  Helen x  ... View more

Really good results Julia, very pleased for you.  I won't be able to make it over today, started EC last Thu & have had a pretty horrible week with various side effects. Been suffering from dizziness and vertigo. Blood pressure is absolutely fine though - a mystery! Enjoy your day with your daughters Nicky . How are you doing Carine & Judy? Sorry to miss you all today. Take care, Helen x  ... View more

Hi Alisonc  Sorry to hear that you are suffering with neuropathy. If you look back on this thread you'll find that a few of us experienced neuropathy. I had 23 cycles of eribulin during which I had neuropathy mainly in my toes but also a strange numbness in my shins and calves from time to time. No-one really knew what to do about it but when I had paclitaxel afterwards I rested my feet on ice packs during chemo and it really helped ease the neuropathy. It did take an hour though and eribulin is much quicker to administer of course. Withasmile has taken breaks from eribulin & restarted it so hopefully she might see this & reply, have a look back on the thread at her posts. All the best with your treatment.  Helen x  ... View more

Hi Victoria Sponge  I have bumped up a useful thread called Travel insurance for you. Foreign travel is possible with SBC if you feel up to it and there are companies that will insure you. I have been lots of times to Europe in the last 6 years with mets. Eurotunnel and MIA have both insured me & husband and at a reasonable price. Just be prepared for a few questions about your treatment . Good luck and happy holidays! Helen x  ... View more

Bumping up for Victoria sponge  ... View more

Hi Carine Hope the scan went ok today and you don't have to wait too long for the results. I went on to Letrazole after Tamoxifen stopped working 18 months after secondary diagnosis. Just had a liver biopsy this week and will know results just before we hopefully meet up at the end of March. Take care of yourself, Helen x ... View more

Sending you big hugs Carolyn, I am saddened to see that you are so poorly and hope that you can spend as much time as possible with your family especially those beautiful grandchildren Am thinking of you, love Helen x ... View more