Breast Cancer Care Forum

It’s good to hear that there are other renovators out there. Feelthefear, you are right it’s not for the faint hearted, having no loo for a couple of weeks must have been difficult. We had a big gas leak and problems with water pipes when we moved in but only had to use a bucket of water to flush the loo for a couple of days. We have found the original lime plaster under the layers of woudchip so I have enrolled in a lime plastering course. The cottage is grade 2 listed and is in a conservation area which means we have to have listed consent for a lot of stuff. The new thatch is going on next week which will stop the rain coming in through the roof. Kate21, I don’t think I have made any lifestyle changes since diagnosis, I pretty much do as I please. Last year I did reduce my carb intake last year to help support a neighbour who has type 2 diabetes, however I think I have more energy as a consequence. AlexDe xx ... View more

Hi everyone, A word on stats, it is better to be anecdotally alive than statistically dead. We only become a statistic when we die!! On this thread we are all very much alive. I have had bone mets for nearly 10 years now. I had a bit of progression last year and had to have rads and meds were changed. I am now well again, tumour markers are the lowest they have been for about five years. I have just moved into a wreck if a house which we are renovating so spend most days covered in dust from mortar, plaster and bricks and sometimes soot. Here’s hoping everyone has an enjoyable weekend😃 ... View more

Hi Carolyn,   Excellent news re CT results, hopefully you can relax a bit now😀 ... View more

Hi all   Had my first Kadcyla on Friday.  Had a dry mouth for a few days and fatigue for a day and a half, so not too bad, I just hope it’s working.     Funnyface, good luck with scan results.   ... View more

Hi Nicky   i remember you from years ago, I hope you are doing ok.  It’s nice to see a familiar name after such a long time.  You are correct I have got used to feeling well, seeing an onc every six months and having a small injection every 3 weeks.  The I/V is likely to be a problem as I have lymphodema in my left arm and my veins are shot with all the previous intravenous treatment, chemo and then herceptin.  I am going to see if I can get a port fitted.   ... View more

Hi moijan   thanks for replying.  The onc did his best but was over-ruled by the MDT who insisted that NICE guidelines were followed to the letter.  Bizarrely my onc also works for NICE.  We did discuss getting a second opinion but I decided against it because another area will be governed by the same guidance.  I am going to leave going on a trial until later.  I am ok having Kadcyla I just wanted to save it until later.     Alex ... View more

Hi vercours   Thank you for responding.  It’s good to know someone else that is on the same drug.  I did find a Kadcyla thread on here but not been used for a while.  Like any chemo some people more side effects than others, however I have spoken to a chemo nurse and she told me that patients who had been on herceptin for a long while seem to tolerate Kadcyla better.  I can live with a week of feeling tired.  I have three mets in my bones two in my spine and one in my hip.  One of the areas in my spine showed a small amount of progression, I also have some pain in that area which is being controlled with naproxen.  I intend to continue with my dog agility classes😀   i have have my first Kadcyla this Friday.    Alex ... View more

Hi everyone,    i checked in a couple of months ago having not been on this forum for a good few years.  After 9 years on herceptin and tamoxifen I have progression in my sacrum.  Had a blast of radiotherapy and this has helped with the pain.  The plan is that I am going to start Kadcyla and denosamub.  Is anyone else on this thread having Kadcyla as I would like to know how you have got on with the drug.  I would have preferred to have stayed on herceptin and added an AI or a chemo such as capecitabine.  Have been advised that this cannot be done due to funding and that I will not be able to back on a herceptin combo after Kadcyla stops working.  As a consecquence I feel that I have fewer options open to me.     Alex ... View more

Hi Carolyn   I have been on herceptin and tamoxifen for nearly 9 year now.  I am glad I checked back into this forum although it has been upgraded a lot since I last used it, there is a good chance that I will end up posting stuff in the wrong place.  😀 ... View more

Hi everyone,   i have not not been on this site for years.  I just thought I would check in and say hello again.   I was diagnosed with secondary BC in 2008. I have 2 mets in my spine and one in my hip.    It's HER2 and E/R receptive.  The disease has remained stable.  I worked full time up until last year, I retired in November 2016.  It's sad to see that some of the old timers are no longer with us however I am pleased to see that there are some familiar names as well.   ... View more