Breast Cancer Now Forum

Thanks Belinda - your link has proven very useful. I saw the one last week and asked if cap doesn't work what else is available and he replied that there are plenty of options available to me. I cannot tell you how much relief I felt. I had spent the last 8 weeks lying awake at night thinking the worst and if the cap didn't work, then the outlook was horrendous. I was very angry after the apt!!! Even more so as I just seem to be getting more and more breathless in the last week or so. Does anyone know if the breathlessness increasing is a side affect of the cap? I'm fearful of contacting the one unit as I spent 24 hours in last week as they contacted me to say there was an issue with a lack of calcium in my bloods. It was a total farce, I couldn't have written a comedy sketch any better really. Three doctors, none of which were talking to each other, three lots of bloods, two clear, one not only to discover one doctor had read the machine wrong 😫 😫 😫 . So having had two drips of calcium, at 4.30am it became clear that I really didn't need to be there. I am losing all my confidence in my onc and the other oncology doctors on the ward. The nursing staff are just amazing and were as frustrated as me. Don't know what to do for the best really. Put up with the breathlessness until my next appointment. I still have a nebuliser, so I can go back onto that. Ask to change oncologist, or carry on with the one I have? Just scrambled egg for brains and feel like I'm on a roundabout and don't know which exit to take???? Sorry for the rant and the winge. I am usually one of the mos postitive people you could wish for, but it's all getting me down right now. Thanks for your help with the link Belinda, and thank you all for your very kind and supportive words xxxxxxx ... View more

Hi Belinda  thank you for coming back to me.  The info you have given me is really encouraging - thank you.  The onc says its the only treatment available I guess because I have had FEC and Docetaxol in the past and I believe the hormone receptor may have changed?     I am seeing him again tomorrow - so I will question it with him again - thank you.   Thanks again and I wish you well XXXX ... View more

Good morning all.  I am a returner to BCC forums in that I was diagnosed with IBC 10 years ago - discharged 2 years ago only to discover a recent cough and breathlessness has resulted in mets in both lungs.  Waiting for results on bones, but so far not showing in liver.   I have started cape and have just finished round two.  After reading all your posts on here I have kitted myself out with udderly and so far my hands and feet are ok - I am permanently living in flip flops to keep them as cool as possible (onc told me to do that).     However, I have a very sensitive mouth. It feels like my tongue has been burnt with a hot drink and the roof of my mouth is really tender.  I am using Difflam mouthwash as often as I can, which relieves it for a short time.   After round one my onc was going to increase my cape dose (currently on 3600 per day), but as my mouth was tender, he wouldn't increase and left it at the same.  I am concerned he might reduce it tomorrow at my apt. This worries me as I am told that cape is the only treatment that is available for me and we are hoping that I can stay on it for the long term.  I need to be around for a long time yet as I have two young children that I want to be here for.     Reading all your posts on here fills me with hope and I feel that if I can contribute to the forum in any way and help others, then it might be of some help to someone else.     I wish you all the best ladies (and gents).  If anyone has any receommendations for my mouth (apart from keeping it quiet 🙂 ), I would be very grateful.   Huge thanks   FI ... View more