Breast Cancer Now Forum

Hi, I'll be having my 10th cycle later this week. I've had quite severe hair thinning and, more recently, problems with my eyes. I did have quite bad fatigue but that seems to have eased over the past few cycles. I had slight shrinkage of my lung mets. Next CT scan on Friday. Best of luck with your treatment. Can I be nosey and ask where you are being treated? xx ... View more

Oops sorry, led you up the garden path there with my badly worded post.  I had the CT scan after 2 cycles, ie 6 weeks from starting trial (but I actually had the scan 10 days ago).  Will keep you posted. ... View more

I had my first CT scan after starting the trial about ten days ago.  No change in cancer.  I was very surprised, and pleased, as my breathlessness has been grim (not a known side effect).  I'll have another scan in about six weeks.   ... View more

Hi Julie   Sorry to hear about your recent diagnosis.  I was diagnosed with secondary cancer three and a half years ago (liver and lung mets) just a couple of weeks after getting my primary diagnosis.  I'm a bit older than you (54) but live in Shrewsbury, so not a million miles from Wolverhampton.   Della x ... View more

Hi, I haven't been on the forum for a while so missed the earlier comments about the Vita blog I wrote about us secondaries bods feeling sidelined when surrounded by all the pink fluffiness. Belated thanks for the kind comments. I'm really chuffed! Hope everyone is bearing up while we get through the sea of pink that is October. Thanks again, Della xx ... View more

Hi Lucerne, I'm scanned every 12 weeks. The first two scans showed some shrinkage (I have lung mets) and scans since then have shown stability. I forgot to mention that after my first cycle I had flu-like symptoms that sent me to bed for a day - but nothing like that since and am now on my 20-something cycle. ... View more

Hi, I've been on kadcyla for 14 months. I've found it much easier than previous chemos (EC and Taxotere). I do suffer from fatigue sometimes (but nothing horrendous) and get joint pain. I hope it works well for you. Della x ... View more

Hi I've been on kadcyla for just over a year. The first cycle was the worst with flu-like symptoms for a couple of days. My onc said that, as this chemo doesn't mess with your immune system as badly as some, it was fine to take paracetamol (not so much worry about it masking infection by bringing down your temperature). Since then SEs have been fairly limited. I get joint pain (nothing horrendous) and have to take anti-sickness meds for the first day or so after each treatment (but that knocks the nausea on the head). Good luck with it! Della xx ... View more

I couldn't agree with you more Rattles! It's over a week since I first read the article and I'm still fuming x ... View more

Thanks for info Helen ... View more

I'm amazed at how much this article has angered and upset me. I've been receiving TDM1 (Kadcyla) for ten months with, so far, good scan results (shrinkage or stability). Those ten months of really pretty good health have been priceless to me. Yes, there is a discussion to be had about NICE's criteria, the profits of drug companies and finite NHS resources but this article is just plain loathsome. The derision with which she speaks of people with SBC who desire to extend their lives is vile. Her portrayal as people with SBC who are on treatment as pathetic, 'ravaged' individuals is misleading and damaging. I could go on about this for a very long time. Once I've calmed down I'll be writing to the Mail (probably hopeless but I'll try) and contacting Breast Cancer Campaign (NOT Breast Cancer Care) to ask them why Jenni Murray is a patron given her bigoted opinions on people with SBC. Della x ... View more

Hi I started on the TDM1 trial in June 2013. My first two scans (being scanned every 12 wks) showed shrinkage in my lung mets, the last scan showed no change. I have mild nausea for a day or two after each treatment and muscle ache but SEs have been minimal. Good luck with it and keep us posted. x ... View more

Belinda, this is a very, very belated thank you for pointing me in the direction of 'Advanced Breast Cancer, Guide to Living with Metastatic Disease'. Yes, as you say the treatment section is out of date (thank goodness!) but the rest of it is very helpful. Thanks! ... View more

Triple yay Sarah! First of all for your absolutely fantastic, inspiring news. Secondly for posting it here to give hope to us all and, thirdly, for posting your website's address. I'd lost track of it after the name change (thought you stopped posting) so am looking forward to catching up. Also you will now be spared me asking loads of questions about your regime as the answers are in your blog. Thanks again and huge, huge congratulations! ... View more

Great to hear your story Blondie. Here's to another 11 years, and another 11 after that etc etc x ... View more

Hi Belinda Thanks for pointing this out. It looks really interesting and helpful - and, let's face it, we need all the help we can get! I just had a look on Amazon and there are a number of second hand copies available very cheaply (just ordered one as I'm a bit of a Luddite and prefer real books to screens). Thanks again. Della x ... View more

Great to hear you are a stable Mabel! Best wishes for the future, please keep us posted. Not that I'm nosey or anything :0) ... View more

Hi Dickie   I'm sorry to hear you are having such a horrible time at the moment.  Have you seen the blog http://newbeginnings-divinegoddess.blogspot.co.uk/  ?    It's written by a woman with mets whose husband left her (if my memory serves me correctly) when she received her secondaries diagnosis.  That was about 4 or 5 years ago and she now leads a very active, happy life.    I know you must still be reeling from shock but perhaps the blog above might be a small ray of light.   Thinking of you Della ... View more