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
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
Hi Max, good to hear from you. I have seen some of your comments to posters on here, but I'm always reluctant to "crash" their pages with a post not geared especially to them. When I saw this one started by you, I was okay with jumping in, even though I know nothing about this treatment. I just wanted to touch base with you to let you know I've been thinking about you and wondering how you are. Like you, I hesitate to be fully open about my situation for the same reason. I certainly will try to track down your e-mail address so we can connect via that route. Take care my friend and I look forward to having a great "heart to heart" very soon.
Thank you max, I will ask at the hospital, I've been so poorly with a damned cough for 3 months now and now they've decided this is cancer too after three lots of antibiotics, and it's on my chest wall where I have no breast, I know they have to try and I'm such a positive person but it's starting to fail now, wish you well and as everyone keeps telling me " keep fighting " x
Jodi ...... guess you are like me and sometimes feel like strangling those people who keep telling you to 'keep fighting' haha! I am sorry to hear about your spread to the chest wall - it must have been a huge shock to you. Somehow it hit me harder when I had a recurrence - I dont know how you felt? Guess you are so full of hope following your initial treatment and it just brings you back down to earth with a huge bump! Have any other treatment options alongside chemo been discussed - like surgery or targeted radiotherapy? I really have no knowledge of chest wall disease, my mets has been in my liver, brain and nodes around the collar bone and abdomen. Have you a good support network around you Jodi?
Yes it was a terrible shock to see the lumps on my skin when I thought it was a bit of infection, couldn't stop sobbing all weekend especially after seeing pics on internet and seeing how horrible it can get, and it's so common too, nobody has ever mentioned it's possibility , I've got a fab family and terrific friends, and they all offer their love and support, but nobody can truly realise I'm not going to be cured now, they don't understand paliative care x
I hope you find that the TDM1 is side-effect free for you and that it does its job well. New procedures and drugs are becoming available all the while so we must never give up hope of living a very long time with this disease Jodi. Am always here if you need a rant and please let me know how you get on with your new chemo x
