I had my first dose two weeks ago, I was a bit sickly on the day and very tired for 2-3 days. I also had some pain in the 'right' places, which really took me by surprise. After one week I could see some improvement of my skin mets, which seemed less red and bumpier and I felt generally better. I guess I dared to hope it was working! However, since yesterday I noticed some skin redness and discolouration elsewhere on my tummy and back, and now fear more progression (I've had over 6 months of relentless progression under different treatments...) Has anyone had any skin reactions with TDM1? Tx
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
Yes it is all in one the T stands for the clinical name for Herceptin. From what I understand it is very powerful/toxic and needs to be mixed with Herceptin which then takes it straight to work in the right places. I will keep you updated.
Good to hear your coping well with the TDM1. Are you taking Herceptin with it. I have been told that if the Perjeta fails me then the TDM1 is next on the list. Please keep us up dated its lovely to hear from you.xx
Finally started TDM1 on Thurs. 1st dose took 90mins, next one in 3 weeks will be 60mins then n 30mins thereafter.
Felt it actually working in eve. Definate niggle in right area. funny coz hadn't had any pain/symtoms! Have felt a little fuzzy/sicky but that seems to be passing. Have taken anti-sickness tabs. Has anyone else who has been on the trial felt the same?
Is there anyone else out there thats having it outside trials?
Be great to get any hints etc. I picked up some really useful ones from here when I was on Xeloda.
Could we be called The Totally, Dotty and Mad Ones (TDM1 get it!)
Just been to the site. Made me feel very positive as someone that has had the benefit of docetaxol Perjeta and Herceptin and now Tamoxifen P/H. I've never had treatment before which also seemed to be a benefit.I am presently NED and hope to stay that way but it was good to hear about the other treatments available. The only thing that scared me was that HER2 more easily travels to the brain but again they seem to be working on that. I even liked one of the talks where an opinion was given that if you have been NED for five years then you are thought to be cured. So I am crossing my fingers for the next 4 and half years. Thanks for posting the link.x
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
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
Hi Sorry for getting the facts about NICE wrong, I should have re read the article before I posted. My bad, as I understand I should say 😉 Good news though that it is available throughout the Cancer Fund and that Fudge, you are about to start it. Hope it works well for you. I was going to ask about how it is administered whether it's with a chemo as well but, having read the article again I understand it as being chemo and Herceptin combined and it goes straight into the cancer cell hence fewer side effects. Is this correct? Certainly a step forward and amazing what newer drugs are coming out and being made available. Nicky x
It is indeed true. I actually signed consent form yesterday to start TDM1 next week after trial with Pertuzumab,Herceptin and Capecitabine stopped working. It was given the licence yesterday the same day as my clinic appt! Good news indeed!
there was a lady on daybreak this morning who has been on the trial for 2 years after being on chemo for 9 yrs ,its done its job with her really well ,Dr Hilary said there are 20+ more similar drugs in the pipeline also x
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.
My onc mentioned a new treatment at the end of last year and I think this must be it. My research nurse for the pertuzumab trial I am on also brought it up again yesterday as another way forward if the treatment I am on stops working - the more options the better I reckon! They couldn't give me much information about it but I'd love to know if anyone knows anything more about it!
Hi To all HER+ ladies I have read today (in The Telegraph) that T-DM1 has been approved by NICE for funding through the Cancer Fund. Hopefully this means there is another treatment now available when Herceptin is no longer doing its job. I couldn't see any additional info on the NICE website so I hope I have this correct but I know there has been a trial about its effectiveness so presumably the results have been very positive. Please feel free to correct me if I'm talking rubbish, I'm new to this HER+ game 😉 Nicky
hi ladies, I'm on the Marianne trial phase 3 which is TDM1 and been on it since dec 2011. Feel free to message me if I can be of any help. XJanine
