Hi All i have just joined this group and having kadcyla chemo was wondering if anybody else has this chemo
Hi and a very warm welcome to the online community
I don't have any experience with Kadcyla to share with you but I noticed that your post had not had any replies yet. This is probably because this is such a busy group that posts can drop off the first page of the discussions list before someone with the necessary experience has seen it. By replying to you it will 'bump' your post back to the top of the discussions list where it'll be more easily seen.
While you're waiting for replies if you type 'kadcyla' into the group's search bar you'll find lots of previous posts discussing this treatment. You could have a read through some of the more recent ones and reply to any posters who you think might be able to help you further.
When you have a minute, it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
x
I hope you don't mind a spouse replying.
My wife is on kadcyla - or TDM-1. It is amazing. It is unlike all of the other chemo she has had. Yes she gets tired, and yes there are side effects, but for her, they are as nothing compared to the earlier treatments. The only other drug she takes with it is plain old paracetamol. Literally, that is it. When I think of how she suffered under other treatments.
It has kept my wife, not merely alive, but with as close to normal a life as you can have. She is shielding now, but is active and is able to get on with her life.
I cannot sign this drug's praises enough. It has given us two more years of life together.
Hi Benry it is amazing but i do suffer with neuropathy but like your wife i can carry on a normal life how many cycles has she had i have had 40+
I went back to see when she went on to the treatment. It was March 2018 so that is three years, not two. I couldn't tell you how many cycles that is - a lot.
She has really bad neuropathy. She can't drive any longer, or only very locally, so that is a real bore for her. Obviously, with shielding, it is less of an issue, but it is quite limiting.
That apart it has been amazing. Everything about this drug blows my mind. I am just hugely, hugely grateful for the time it has given us.
Hi Donna,
I’ve been on Kadcyla since September 2020 to get 14 so 8 down 6 to go. I was diagnosed October 2019 with invasive ducal cancer grade 2 stage 2 oestrogen and progesterone positive and HER2 positive. Have had x4 chemo docetaxel Herceptin pertuzimab x3 surgery which included mastectomy and axillary node clearance. Then fast forward radiotherapy more chemo x3 FEC then Kadcyla from September 2020. Finding the Kadcyla ok get a bit tiried but in the past month feel getting more energy ?starting to recover from the hardcover re chemo and radiotherapy. My main side effect is constipation but that is better as now take docusate and make sure I drink a lot of water. Another side effect bone and joint aches but not to bad. Hope you are tolerating it ok xx
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