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Residual cancer after chemo and TDM1

14 Oct 2021 17:19

Hi all,

Ive posted quite a bit recently as I'm in the next stage of my treatment. In April I was diagnosed with breast cancer. A 3.2cm lump and a 1.2cm lump in the same breast, I was E+ and HER2+ with lymph node involvement. I had 6 months of chemo and Herceptin. I have just had a mastectomy and reconstruction and my lymph nodes were taken.

I will get my full results in a few weeks (unfortunately the day before my birthday). I saw an oncologist the other day and they said they can tell me provisionally it looks like there is residual cancer cells in the larger lump although it had shrunk a bit and there were some dead cells there. They couldn't find the smaller lump. I have been advised I will be likely starting TDM1 in 3 weeks time. Obviously I was deverstated but not 100% shocked as I knew the lump was still there after my chemo had finished. 
 

I am trying to get my head around this next batch of treatment. I had a horrible time with the chemo initially and the surgery has been hard. I have a 10 month old I'm unable to pick up for 6 weeks which feels like just another horrible thing. I'm also quite worried about the possibility now of further spread. I've been quite emotional this past week and I'm just reaching out to hear others experiences if they have been through anything similar.

 

Residual cancer after chemo and TDM1

16 Oct 2021 13:19 in response to rmscj

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 

Residual cancer after chemo and TDM1

16 Oct 2021 14:56 in response to rmscj

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

Residual cancer after chemo and TDM1

16 Oct 2021 16:08 in response to Marlyn

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.

Residual cancer after chemo and TDM1

16 Oct 2021 16:20 in response to rmscj

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

Residual cancer after chemo and TDM1

16 Oct 2021 16:40 in response to Marlyn

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.

Residual cancer after chemo and TDM1

16 Oct 2021 17:27 in response to rmscj

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....❤️

Residual cancer after chemo and TDM1

25 Nov 2021 12:32 in response to rmscj

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

Residual cancer after chemo and TDM1

25 Nov 2021 16:17 in response to Lily2021

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.