Hi, I have just joined. I was diagnosed with secondary breast cancer in December 2011 which has spread to my liver and lymph nodes under my (other) arm and I have two tiny spots in my pelvis and ribs. I am on a trial drug called Afatinib and would be interested to hear from anyone else who is on the same trial - LUX 2. I have only been taking the drug for 3 weeks and have very dry and sore eyes, acne, dry skin on my face and a dry mouth - all known side effects. Thanks, Billiebobs
Hello billiebobs
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Best wishes
June, moderator
hi billiebobs, so sorry you have had to join this club. I have not heard anything about this drug.Is it a chemo drug. Where abouts are you being treated if you dont mind me asking.My hospital is only small and never runs any trails. Have they suggested a mosturizer for your dry skin, ? artificial tears for your eyes. Hope this drug works well for you. Let us know how you get on ,Claire x
Hello Billiebobs, Sorry I don’t know this drug either. I am sorry that you have had this recent diagnosis. It must have come as a shock.
However I just wanted to let you know that there a few threads on here that deal with ladies with all sorts of secondary cancer. Look the threads out and pop in to say hello when you feel you want to.
I first had BC 23 years ago and have been having treatment for Bone secondaries for 13 years now. If you cannot find the sections I am talking about get back to me and I will point you in the right direction. Meanwhile I hope someone comes along who knows more about Afatnib. Although I think it is a relatively new drug. Keep well, Love Val
Hi flo12,
It is a drug similar to Herceptin, but given orally (tablets) rather than intravenously. I’m being treated in Exeter. Hospital have been great and recommended eye drops, have given me some mouth wash and I am using bio oil on my skin and yesterday was given antibiotic cream for the acne ! I’ll keep you posted. Anne x
Hi Scottishlass, Thank you for your message. It has been a huge shock, still not sunk in really. I feel that I need to connect to get more info from others. Wow you are doing very well 13 years with secondaries ? I feel like I have been given a death sentence, but I feel completely well so it all seems unreal. Thanks for your offer of help, I may need it. Anne x
Hi Anne
Here’s a link to information and further support ideas from BCC which you may find helpful:
www2.breastcancercare.org.uk/publications/secondary-breast-cancer
Best wishes
Lucy
Hi Anne
Just had a read about the drug on the cancer research website and it sounds really interesting. I was also diagnosed with liver, lymph and bone mets (and maybe lung - they can’t seem to make up their minds!)
I know it’s so tough in the beginning. I was diagnosed last June, stage IV from the start and now, 6/7 months down the line, I’m coping much better. I had 5 months of chemo and have gone back to work full time. Like you, I feel very healthy at the moment and have bags of energy.
Feel free to PM me if you want a rant/chat!
Really hoping this trial kicks the mets into touch for you.
Laurie x
Hi Alesta29,
It’s great to hear you are doing well and back at work. Bags of energy sounds extremely encouraging. I feel tired sometimes, but not sure if the treatment, or just my age !!
Anne
x
Hi Billiebobs,
I hope you are ok & your treatment on afatinib went well? My sister is just about to start a trial on afatinib for her ibc which sadly came back. I was wondering if you could tell us how you got on with it?
Thanks Jem x