TDM-1 Kadcyla. Side effects?

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Hi. I’ve just had the pathology from surgery a couple of weeks ago.  There is a very small amount of cancer cells remaining so I will be starting TDM1.  This seems to be a chemo drug.  Can anyone help me with their experience?  I’ve read it’s administered via IV so it sounds like the chemo I had before surgery but maybe not as aggressive?  I had dared to hope that I might get something like normal life back.  I was hoping to plan a family holiday and return to work.   How dare I!  ??  I’m super disappointed. 

  • Hi, sorry to hear the surgery outcome wasn't what you wanted, that's disappointing for sure, I think that TDM1 is also know as Kadcyla and there's some useful info here that might help you.  Kadcyla.  I've also seen other posts on here about Kadcyla so you could also check those out. Best wishes 

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  • Hi there, I am in exactly the same position as you and due to be starting Kadcyla next week. I have come to terms with it now but on hearing my path results I was upset as I too was looking to resume normal life and book a holiday at least next year, but it seems I have to have this chemo for another 9 months. I am also interested to hear of others' experience of Kadcyla but have been advised by my oncologist it is not as brutal as my previous chemo drugs so I do hope that is the case. Just as my hair is starting to grow back and I was looking forward to ditching the wig, but apparently it won't affect my hair as much this time. I think psychologically it's hard as I thought that part of my treatment was over and with surgery done as well, all I had to undergo now was radiotherapy and a short course of immunotherapy. And having to update friends and family with the news gets a bit tedious and disheartening. Hopefully we will hear from others on here who have been through this, but I wish you well, do keep in touch.

  • You’ve expressed it exactly.  I knew I would still have a lot of medication and hospital appointments but I did think I could reclaim normal life around that.  I was pretty upset but have made peace with it.  I hope we will not have too many side effects.  Good luck with your first treatment and let’s hope the side effects are very manageable.  Xxx

  • Hi Angie463.  I saw my oncologist yesterday.  She explained that the chemo part of TDM1 is wrapped inside the antibody treatment.  The antibody treatment finds and attached to the protein of the cancer cell and then the chemo is released into the cancer cell.  So the chemo only attacks and destroys the cancerous cells and not the rest.  The treatment is quite quick as well so nothing like the chemo before surgery.  Although I hear that the first time they go slow.  She said some people suffer little side effects and other people don’t tolerate it at all so we will have to try it and see.  It is a bettter drug than phesgo (is that what you were having before, like me?). I will start radiotherapy first.  Then TDM1 every 3 weeks for 14 sessions.  9-10 months??  Not everyone seems to make it through all 14 sessions depending in the side effects but however many of them we manage will help us towards our goal of destroying this cancer.  I don’t know if this helps.  Wishing you the very best. It would be good to keep in touch.  Xxxxx

  • Hi Ttls, sorry for delay in replying, I don't seem to get notifications about the thread. Thanks for the info about antibody treatment, useful to know. I had my first round of Kadcyla yesterday, like you say it was a slow infusion over 90 minutes whereas future ones will be done in 30. I also started on Letrozole as a daily tablet. I have felt fine so far but am thinking if I get any side effects how will I know if it's from the chemo or the Letrozole? It certainly feels like a long slog ahead, especially when I only had 6 rounds of chemo before surgery. Tomorrow I have an appointment with a different doctor about radiotherapy which I guess will be happening soon, although my husband is concerned about how I will cope with having it while on chemo at the same time. I keep getting invitations to have my Covid booster but I am undecided about whether to have it, mainly because my aunt suffered a stroke shortly after having hers last year. I am however booked in my flu jab, I feel happier about that one because I've never had any problem with it before. My consultant said it was best to have it in week 3 of my chemo cycle as I should have fewer issues at that point. Anyway I wish you well, do keep in touch xx

  • I really hope you will not experience bad side effects.  It seems some people find it ok and can continue to live normally.  Yay.  I start it Friday 6th October.  But I start radiotherapy this Friday.  Had the planning sessions today.  I will also have hormone therapy, letrozole I guess ir something similar but will start that a little later maybe after radiotherapy.  Your team will probably know which medicine is causing the side effects, hopefully.  Good luck.  Let’s keep in touch.  X

  • Day 3 and still feeling OK. Had meeting this morning about radiotherapy and signed consent form. Turns out they do it in only 5 sessions now rather than 15 as I was expecting, but it won't start until 7 or 8 weeks from now due to waiting times. Good luck with your RT, let me know how it goes. x

  • Hi Angie462.  How are you doing?  Had my first Kadcyla yesterday.  No side effects yet but I guess it’s early days.  I am sleeping so badly though.  I’ve done 6 out of 15 radiotherapy sessions.  They’ve been fine.  The set up takes a while but the treatment in,y takes a minute or so.  I have to hold my breath for 25 seconds which I find challenging but I manage.  There is an alternative for people who can’t but they said holding the breath is the best option.  It’s to protect the heart because my cancer is in the left breast.  Doesn’t apply if yours is in the right.  Hope you’re doing ok.  X

  • Hi again Ttls, glad to hear the radiotherapy is going well. I have been told about needing to hold my breath and to get some practice in beforehand - I've timed myself and can manage about 20 seconds at the moment. My cancer is also in the left breast. Do you have far to travel for your treatment? I am lucky in that I live about 10 minutes drive or 35 mins walk from the hospital but I suppose some people must come from quite a distance. Good too that you've had no side effects from the Kadcyla, I'm 13 days in and still feeling OK. Had my flu jab today and no ill effects from that either. Hope you continue to feel OK, keep in touch x

  • Yes I’ve met people who travel a distance.  I am a 20-30 minute drive depending on traffic.  So it’s easy.  20 seconds is fine Im told as they can pause the machine and then you only need to hold for a short petite while it finishes that treatment.  Must ask about the flu and covid vaccines and how to best time them.  Glad you’re ok and hoping you stay that way,  xxx