Ugh it never rains but pours!!! Following from brain mets dx my Ct shows a new met in the liver and a little more effusion in lungs. Unfortunately herceptin is no longer working for me! Bloody hell I thought I would get a long run without chemotherapy on this!
They’ve almost approved kadcyla I don’t know how to feel about this. Is this my last chance? I feel well I don’t understand it.
Ladies on kadcyla please give advice xx
Hello Carolina,
Just a quick reply for now as I’m out & about today. So sorry to hear this news, especially considering what you’ve been through in the last few weeks.
I’m on Kadcyla, started March 2016. So far, it seems to be working as I’m still NED from neck down & head MRIs have shown improvement. I know I’m only as good as my last set of scans but I have to stay encouraged. Due more scans in Feb (yep, scanxiety!!!). I do have some side effects - e.g. I suffer badly with fatigue & my haemoglobin levels drop but I’m doing what I can in an attempt to manage both. It can take some getting used to but it’s definitely not as difficult as when I was on FEC-T a few years back. I was absolutely terrified at the thought of more chemo & on a long-term basis at that but now I’m glad I’m on it. It isn’t a walk in the park but I’m still able to have a relatively decent quality of life. If you feel it’ll be useful, try speaking to your breast care nurse about your concerns… I found mine very helpful. She put my mind at rest (somewhat) - there will always be reservations until you start & have your own experience with it.
Nobody can make the decision for you about whether to take it or not, however I’m very glad to hear it’s almost approved. I got extremely emotional & angry when they announced patients who can benefit from Kadcyla will soon be denied!
Please keep hope. From what I’ve read of your case so far, you’re a very strong person. I know that’s a cliché you’re probably sick & tired of hearing (feel free to virtually slap me around my head if that’s the case) but it’s true. We’re here so keep us updated.
Lissa xxx
Hi lissa really pleased it’s working for you. I’m dreadfully upsett about the situation with this drug and cry because I know that today could have gone a different way and they told me I’m not worth the money which would have broke me. But I have to be positive and try to feel lucky that this may help me too.
My concerns are the fact that herceptin and perjeta only worked for me for 6 months which seems dreadfully short so I wonder if kadcyla will only work a short time as surely it’s a case of how aggressive your cancer is which mine seems to be. Then what happens if this doesn’t work? One says there’s other things left to try but we shouldn’t jump ahead and think of those yet… also a nurse woman came in which has NEVER happened before even when I was dx with secondaries, so it got my back up and I felt they were putting me in my grave and giving up although I’m sure it wasn’t that I just wished they’d have consulted me! I was very defensive with this woman and I did not like her… anyway what a day x
Hi Carolina
I just wanted to wish you well with Kadcyla, I have just been turned down for it (I live in N Wales) and I have to admit it has knocked me sideways.
I have had two good runs on two separate chemo’s (Cape and Taxol) so there are other options for you.
I am going to take Molly for a good walk to the beach now, hopefully the sea air will do something!!
Wishing you the very best Sarah xx
Sorry to hear this Molly it’s terrible I don’t know what to say. I feel gutted that my drugs aren’t working but happy I should be able to get this. I wish things were different for you but glad something is working
Hi Carolina,
great news about Kadcyla! I just wanted to say that I know just how you felt about the ‘nurse woman’ coming in…it often made me feel like that too…last time it happened, I asked to have some time with the onc on his oen and she left xx( I think, they think the bcn will be some support…but it can feel like an intrusion)
I also know how it feels when a drug fails, that happened to me three times last year…I thought why me? You feel pretty hopeless and powerless…but now you are going on this drug…and we know its a good drug, Lissa
is finding it useful… hang in there and see how it goes.
Loads of hugs,
Moijanx
Ps I have liver mets…have had those with bone mets for three years nowxx
Hi Molly,
I’m sorry to hear you were denied Kadcyla. That must be devasting for you. I had a long chat about the decision with my oncologist the last time I saw her. She’s very sympathetic to the cause but also tried to explain the situation & put things into better perspective re NICE’s role & that of Roche. It seems so complicated & unfair… in reality it’s all about money!!! Hmmmmph! You probably already know but apparently there is a debate about it this Thursday 26th. If you do a search for Kadcyla debate, you should be able to find a link where you can fill a form asking your MP to attend. Seems a lot of people have filled it out so let’s hope it makes a difference. It has to be worth a try.
Anyway, hope you’re stable right now & will remain that way for a very very long time.
Take care, Lissa xxx
Hi Moijan,
Wow, three years with liver & bone mets? I know it can’t have been easy. Is whatever drug you’re on now keeping you stable? If yes, again long may it continue! I’ve been metastatic for 16 months so hearing this gives me even more hope. I’ll never give up hope for all of us.
Best wishes, Lissa xxx
Hi Lissa, thank you…it seems that hopefully eventually the oncs come up with the ideal drug which fits each persons bc…I had three failures after two good yrars on Cape( well - controlled fairly well anyway) then last year lots of stress…which seems to affect my particular cancer…and then in June…started Eribuln…and the tms started dropping dramatically…but who knows what the future holds…
i travel hopefully…which is really the only way forward.
Moijanxx