Had mx in July with DIEP recon. Started Chemo last week and have been asked to take part in a trial with herceptin. There are four arms to the trial, one: usual three weekly injections for 52 weeks, second: taking Lapatinib tablets for 52 weeks, third: herceptin weekly for 12 weeks followed by lapatinib tablets for 34 weeks, fourth: herceptin three weekly together with daily lapatinib tablets for 52 weeks. Has anyone any knowledge of this trial and experienced any side effects. Not sure what to do for the best and would welcome any comments. I have grade 3 er- HER+ having 3 FEC + 3 TAX, followed by rads.
I’ve just seen my oncologist today to discuss the exact same trial. I have my last chemo tomorrow and then start rads. My history is : mx in March with DIEP recon full axilla removal.I am grade 3 er+ pr+ and HER2+++.
I have to admit I don’t know what to do either. Have you been given lots to read? My oncolgist advised me that the trials have been going for about 3-4 years and they have found so far that the tablets could be as sucessful or better than the Herceptin.I’m a little confused and I don’t want to scare you but he told me that there is always a chance of brain secondaries and this drug can help to prevent that. Like I said I don’t want to scare you so please if you find out more correct me if you can.
As for side effects,they do seem minimal mostly facial skin rash(mild version of acne) and diorrehea(sorry about the spelling) Again this is not in all cases.One thing I thought was good ,was if we went on this trial we would have more regular and thorough check ups and a nurse is assigned to us directly.
I don’t know!!! I feel some women fought long and hard for us to have Herceptin available, I would be forever asking “if’s buts and maybes”
let me know what you decide Floss,but if I was you take a sep at a time.You have chemo next and use all your strength to get through it.I’ve reached the other side and was always told by the lovely ladies on here that it’s “doable” and they are right!!!
I just wanted to clarify that brain secondaries do happen, they seem to be connected with the traits of the cancer, not with getting herceptin. The problem with herceptin is that it is normally too big to get into the brain and attack any stray cancer cells there to prevent secondaries from developing. Lapatinib is smaller, so it seems to be more effective at getting at cancer cells that have crossed into the brain.
Thanks for your responses. I have been given a five page leaflet on the trial setting out the side effects. I am worried that if I get the arm without the herceptin I would be worrying all the time. The onc mentioned they would start the trial during the second half of my chemo - only just had the first dose of FEC so have a few weeks to think it through. The research nurse said she would have a word with me when I next see the onc on the 23rd Sept to discuss any queries I have. I am not sure if anyone has only had the tablets yet and what the results have been. I hate being given choices over these sorts of things - I just want to be told which is the best for me. Will keep in touch.