Breast Cancer Now Forum

I've had 5 WBR, 10days ago. I'm still in in hospital because I live on my own and my friend is away. Hair all falling out, going to get it shaved off. Friend back tues night so expecting to get out Wed. ... View more

As Nicky has said it would be worth asking about Cape and Lapatinib as they can pass the blood brain barrier. I think the combination has proved to hold brain mets stable. Love Sue x ... View more

No prob Nicky xx ... View more

Dont think it's been out long enough but it's suppose to be better than Herceptin alone and a few people have been on that 10+Years and then there's Kadclya after that. It's so hard to know how long it will work for an individual. Xx ... View more

Hi Lucerne I was so excited to get Kadclya, can't wait for tomorrow, the results are so good from it. I was on Herceptin 3 and half years then Lapatinib for 18 months and chemo for a year, I've not had any Her drugs since jan 2012 so I'm exited to get back on a her+ drug- we are so lucky to get this expensive drug from from the Cancer Drugs Fund. Sue xx ... View more

I'm starting it on Wed, looking forward to it. Have you had progression on Herceptin Lucerne Sue x ... View more

I'm starting Kadclyla on 10th Sept, so happy to be getting this drug xx ... View more

I have fluid building up in the pleura, I had it drained in Jan. I measure my peak flow and it is normally 390 at the best time of the day. Last Xmas I was left off treatment for 6 weeks and it really built up, my peak was 250 after draining it went straight back to 380 then increased to 410 on Eribulin. I finished Eribulin in May and my peak flow has started dropping its 350 now and I feel tired. I had a X-ray on Tuesday and it was easy to see, I'm going to start Kadclya on the 10th Sept so I think you will be ok over the weekend Bev, just don't over do it. Enjoy the rest of your break, I'm going to Devon for 5 days next week, I'm getting really slowly this weekend. Sue xx ... View more

Hi Laurelle Kadclya also known as T-DM1 is Herceptin (the T) linked to a chemo therapy which attacks cancer cells but leave other cells alone. From what I've read it does have side effects but not as bad as chemo for most people. It was only added to the CDF (cancer drugs fund) in February. It's the expensive drug that was in the news a couple of months ago. It will be my next drug and I was so excited when I heard it was going to be possible to get it. Good luck Sue x ... View more

The steroids kept me awake, I had my reduced from 8mg to 4mg.in the anti sickness pre mix,. I got a bit more sleep then. Worse side effects were tiredness and heart burn.. Love Sue xx ... View more

I was on Herceptin 3 and half years before I got progression and their are now other good drugs to go on after Herceptin. Had her2 secondaries for 6 years now. There are lots of new drugs being developed all the time- have hope xx ... View more

I would go on holiday and start treatment when I got back, wish I hadn't cancelled in March 2013. Do you feel ok, I didn't have any symtons ... View more

I wouldn't travel to Greece next week, I went away on 1st cycle (uk) and had awful diarrhea. Once things settled into a routine it was better. I travelled to Egypt on cycle 6, was a bit tired a few days but I just rested. Finished after cycle 8 and went to Israel 2 weeks later and was fine. Everybody is different but that was my experience Sue x ... View more

Hi FB Do you mean the slendertone belt, I bought one a few weeks ago from Tesco -best check with your Onc if I ask mine he just says do what you want. I've only used mine once up to now but I've been on my Pilates reformer and today I've set up my rebounder. I'll be interested what your Onc says I'm not seeing mine till 9th April Sue xx ... View more

Geordiex The link will take you to the speakers page but the first talk isn't about Her2. If you look at the left side you will see speakers 2013. The her2 talk is on page 2, talk by Amal Melham-Bertrandt MD. Very interesting site, thanks for posting the link. Sue ... View more

Hi Nicky The Trastuzumab emtanise, trade name Kadcyla is a combined molecule. You can see the structure on Wikipedia. I believe it's given by IV every 3 weeks like a herceptin. Sue x ... View more

Great news Fudge, let us know how you get on with it x ... View more

Yes ladies it is true, JulieD pointed me to the news page on this site a week last Tues and I checked with my Onc the next day. He is on the Cancer Drugs committee, he said yes it's true and I would be eligible when needed. So happy I just can't believe it's been added to the CDFund so quickly, it's not approved by NICE yet and the CDFund only applies to England until 2016. I'm on Eribulin at the moment so I hope this works for now but wonderful to have T-DM1 in the wings. Sue x ... View more

Hi Jacqui I was really disappointed that I didn't manage to get the whole procedure done! I was on Cape, had a slight increase in the fluid in the lung (seen on X-ray). CT showed abnormal cells in the pleura. Cape was stopped and because of delays and Xmas I was left on nothing and the fluid built up very quickly. Now on Eribulin. Hope all goes well this week for you. Sue x ... View more