Hello rmscj

I'm sorry to hear that following your recent surgery you're now facing some further treatment. It's understandable that you may be feeling anxious and disappointed. 

I know that [@Marlyn]‍ has had TDM1 - also called Kadcyla and [@Lily2021]‍ recently posted to say that she was also starting this treatment. As I've tagged them into my reply here they may see your post and reply to share their experiences with you. 

In the meantime can I suggest you give our team of nurses a call to chat things through with them. It really can help to talk through your concerns and I'm sure they will give you any information, advice, and support that they can as well as help you think about any questions you might want to raise with the Consultant. If you'd like to chat with the nurses they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

Keep in touch rmscj and let us know how you're doing. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hello love,

Just seen I've been tagged so wanted to pop in and say I was Her2+ and was on herceptin....

how many herceptin injections have you had so far? Or is it that your starting herceptin in 3 weeks? 
 

xxxx

Hi,

Thank you for replying.

I've had 8 Herceptin injections so far and 6 cycles of chemo. I'll be staying on Herceptin and moving onto TDM1 in a couple of weeks time.

I was on herceptin only....got on with it fine....how you getting on with it? 
 

so the TDM1 is a whole new treatment ( which I didn't receive) and that's alongside the herceptin? 
xx

Yes it's a different treatment. I've not met anyone yet who is on it hence my post.

Glad to hear you got on fine with Herceptin. I get on ok with it. I always have a mild allergic reaction and my leg is sore and itchy for a day or two but aside from that I've been fine.

I'm due to continue with the Herceptin and am assuming I am having it alongside the TDM1 for another 6 months.

I know it's a lot.....but thank goodness there are so many options and targeted treatments these days...

I do hope someone pops along soon who's been or is in the same boat...it's comforting talking to someone who's on a similar plan to you.... ️

Hello rmscj,

Hope you are doing well. 

I hadTDM1 for two sessions(10 remains) and it was OK and I can say the side effects are not like chemotherapy at all. I just feel a little sick in the first week after injection, however, it is different from person to person. Overall it is not very hard to take this treatment and do not worry at all. Stay positive and keep going...You are nearly there.  

Best of Luck

Hi,

Thank you for your reply. I was informed this week I will definitely start TDM1 in December. So far everyone has said the side effects are no where near as bad as chemo. Have you had any hair loss or thinning? I've seen different Drs and they all said slightly different things about hair loss. Good luck with your treatment.