I hope others with experience of this drug will come along shortly to share it with you. In the meantime, correct me if I am wrong as I am no expert but it looks like it is also called Trastuzumab emtansine (now that's a mouthful!). We have a page on Cancer Help about it which you can read here and it lists the common side effects experienced. Don't hesitate to ring our lovely nurses too (freephone 0808 800 40 40) if you want to find out more about it. But there's nothing like personal experience and so I hope others will pick up your post and share theirs with you!
Hi Lucie and thank you for that. I believe it was only released in February and is a mixture of Herceptin (Trustuzumab) and a drug called Kadcula, thats what the oncologist told me anyway. He says it attacks bad cells only and the Herceptin goes to the cell and then the chemo drug targets it. Think thats how he explained it anyway. Hopefully the side effects shouldnt be too bad, fingers xd. Thankyou - I will have a look as suggested
I will be starting this next week as my cancer is spreading can you tell me anything I should know , is it as well tolerated as they say and does it really work, chemo the first time round didn't really work I had my breast off, radiotherapy, then cellulitis in the scar area now my chest skin is affected
Welcome to the forum. I have Herceptin positive cancer and guess you have too, as TDM1 is for that. I guess you are on herceptin at the moment? To be honest, the side effects were - for me - virtually non-existent and I was on this drug for around six months. Sadly for me, it didnt work as well as other drugs I have been on and my cancer advanced quite a lot for the first time in a couple of years. I have, however, heard of many people who it has worked wonderfully for - so I was maybe in the minority (read some of the American forums and you will see that some people have used it successfully for several years), The great thing is that you will be monitored closely (hopefully with 3monthly CTs and 3wkly CA15-3 bloodtests) so you should know pretty swiftly if it is working. The very best of luck to you and please let me know how you get on x
Hi there Max, good to see you on here. I've been thinking a lot about you for awhile now and wondering how you are these days. You've been rather quiet which of course is not like you as a rule. How are things going for you and how are you feeling? Anything new happening? Not much change for me these days, although there are big changes coming as far as my bladder cancer is concerned. I'm just not too sure that I will take the major surgery route. I have to get a whole lot more info on that before I decide. In addition, my lung cancer isn't looking too promising either. I should find out more info from both surgeons in the nest two months.
In the meantime, just know that you're in my thoughts and I'm wishing things could be more positive for you and me too.
Jodi ..... its like all things with this disease, some drugs or procedures work really well for some people and not so well for others. Thats why it is really difficult to give advice and we can only share our experiences, cos it varies so much from person to person. In my case, the disease spread to other organs and reappeared where I had had tumours removed. Since that time I have had targeted radiotherapy and am awaiting nanoknife treatment to remove these tumours and have been put on a different chemo.It all seems to be going to plan so far and getting things back under control. Hopefully, like many others, you will react well to TDM1 - why not ask your consultant how many of his patients are on this drug,how long they have been having it and how many are having a positive outcome with it? Also how he will be monitoring you?
Lorraine ........ it is so very good to hear from you!!!! Although I am sorry to hear that you are having difficulties and some tough decisions to make. This year has been a bit of a worldwind so far but gradually settling down - I will know more next month. I would so like to talk to you privately so that we could tell each other 'all' - how about you contact Annabel (on Paul L thread). Kathy S has my email address and I know that Annabel would pass it on to you for me. It is sad, but I think the CR team are losing a lot of their original members due to the lack of the PM service because several of us have moved on where we can talk together - they just dont seem to see that though! I do come here to read now and again and help if I can, but I am also very aware that my situation could concern others who are newly diagnosed and want to hear positive experiences. The new format certainly seems to have attracted a lot of new members which is fantastic but the longterm support and friendships we had before only seem to be happening occassionally and I think many newbies dont seem to be getting what is needed and move on after just a few posts. If you read through the last week of posts on Paul L you should spot the email address for Annabel - she is a star - but shouldnt have to be compromising her anonymity by doing this because the forum isnt supplying what is needed and the PM facility that was working so well for the majority. Rant over lol x
