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HER2 positive breast cancer

6 Jun 2021 20:00

Hello over the past 6 months I have completed chemotherapy and had a lumpectomy. I now have risidular breast cancer and will be having further surgery to remove another small section of my breast and then will be having 14 cycles of TDM1 has anyone here revived this maintenance target treatment. It has been explained to me what this drug is and how it works but my biggest fear is I really struggled with my chemo before and had lots of viral infections and lost so much weight and suffered really badly with depression and anxiety. If anyone has received TDM1 please could you share your experience with me ? 
thank you 

HER2 positive breast cancer

8 Jun 2021 19:30 in response to Avriljayne

Hello Avriljayne

I'm sorry to hear that you've recently been told that you need some further treatment having already undergone chemo and surgery. It's understandable that you may be feeling worried about things. 

We do have some information on our website here about TDM1 which may be of help. TDM1 is also known as Kadcyla and if you use the forum search function (magnifying glass in the blue bar at the top of the page) to search for Kadcyla you'll find quite a number of posts where it's been mentioned. Hopefully, you'll be able to chat with other women who have experience with this drug regime on those posts. 

It can often help to talk things through and I wondered if you'd find it beneficial to chat with one of our team of nurses. I'm sure they would be happy to offer any advice and support that they could. If you'd like to chat with them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

I hope that this upcoming new treatment regime goes smoothly for you. 

Best wishes, 
Jenn
Cancer Chat moderator 

HER2 positive breast cancer

8 Jun 2021 19:55 in response to Moderator Jenn

Hello Jenn

Thank you for the reply and information page I have found that really helpful. I'm having surgery tomorrow so will contact the nurses when I have recovered a little. Thank you again 
Avril 

HER2 positive breast cancer

8 Jun 2021 21:04 in response to Avriljayne

Hello Avriljayne

I just wanted to wish you all the best for your surgery tomorrow. Let us know how you get on when you feel able to. 

Best wishes, 
Jenn
Cancer Chat moderator 

HER2 positive breast cancer

10 Jun 2021 22:50 in response to Avriljayne

Hi Avriljayne

I also had chemo and lumpectomy for Her2+ breast cancer and I'm about to start 14 x TDM1 next week. At first I was also pretty worried as chemo was rough. But this should be easier, because it is targetted. My friend's sister started TDM1 2 months ago and has found it much easier than previous chemo. So I am cautiously optimistic.

I can report back next week. Then I have a 6 week break for radiotherapy (they don't want to carry on both at the same time but my radiotherapy had to be delayed a bit).

It took a while for me to absorb the idea of 14 more rounds of chemo (I was miserable when I first realised this was coming) but I've read the studies - it's a big boost to survival rates so defintiley worth doing. 

HER2 positive breast cancer

10 Jun 2021 23:08 in response to Acinonyx

Hello and thank you so much for your reply its really helped me to hear it will hopefully better tolerated and I would love to keep in contact with you as we will both be on a similar journey. I will be starting mine in July and my second operation was small and went well. I hope you cope well with your treatment and I look forward to being able to support each other on the months a head. Take care x

HER2 positive breast cancer

11 Jun 2021 11:14 in response to Avriljayne

Hi Avril. Have you had radiotherapy already? 

I won't have my second TDM1 until end July so we will probably have a very close schedule.

Yes - let's keep in touch X

HER2 positive breast cancer

11 Jun 2021 12:16 in response to Acinonyx

Hi 

no radiotherapy as yet I will honk that will be after the TDM1 treatment. So have you had your first cycle of TDM 1 yet ? If so I hope it went as well as possible and yes let's keep in touch x

HER2 positive breast cancer

11 Jun 2021 12:50 in response to Avriljayne

First dose next Tuesday. Silly

HER2 positive breast cancer

11 Jun 2021 13:41 in response to Avriljayne

Hello Avril

I have just had my second TDM! or Kadcyla. And can say that thankfull it is nothing like  my first 5 months of chemo - that was a truly dreadful experience. I'm triple positive - and yes when they say post op that you still have some cells - well it is just crushing isn't it.  But got my head round it now. its 'extra insurance' - and so why not take it.  

I start 4 weeks of radio next week - and will continue TDM1 until October - I'm purposely not counting them!! 

Post op - im having a very slow recovery- muscles around my rotator cuff have all ceased up - so have limited mobility - so how we will get my arm over my head - I just dont know.

but....small steps forward

good luck with your op recovery and I think you will be surprised about how gentle Kadcyla is. 

lee

HER2 positive breast cancer

11 Jun 2021 22:28 in response to Beautiful.life

Hi Lee 

wow this is so positive to hear you are not having the same side effects as before as this has been really worrying me since they told me but I will try and stay positive now tgat hopefully I won't be as poorly too. Sorry to hear your recovery is slow and I hope you turn a corner  soon and start to get more mobile and less pain. It would be really nice to keep in contact with you and share our concerns and experience which I think is so helpful. Take care n hope to hear from you soon and thank you again for your post x