Hello
I had a bilateral mastectomy and sentinel node biopsy 5 weeks ago. In just one node a few cancerous cells were identified.
I have now been advised I will need radiotherapy and targeted therapy with Kadcyla.
Up until now I have been in Phesgo and have had only the slightest side effects on it. I’ve had 8 treatments.
I would like to know whether I can continue on phesgo instead of swapping to Kadcyla, how many more treatments I could expect to have on phesgo and what, if any, proven benefits there are to Kadcyla.
I am reluctant to swap to Kadcyla because it seems to have more potentially severe side effects than phesgo and I am concerned about its long term impact.
Thank you
It’s 18 Phesgo or if you swop 14 Kadcyla. I asked about Kadcyla anyway as I read the recurrence rate is 5% less but was told only if I don’t get a 100% response or more than a few mm left (I’ve had a recurrence after 5/6 years already). Some people have been given it anyway. However as I got Sepsis my onc is reluctant to give me more chemo so am unlikely to have Kadcyla. I stopped chemo when I got Sepsis due to the PICC which was removed. I had a good response and had 10 of 12 treatments of weekly Paclitaxel anyway. I have read some people have reacted badly but been told people tolerate it well by the nurse as I guess you only hear re the people who react badly. I asked my onc what he would recommend if it was his wife as he gave me the choice re continuing chemo or not.
Hello
Thank you for replying.
I didn’t quite understand - did you continue with Phesgo instead of having Kadcyla?
I hope you are doing well.
Yes but not had my op yet. That will be Jan/Feb so will depend on my results. As far as I know Kadcyla gives a better response than Phesgo. Some people get it on the NHS regardless of their results. I am private and have been told it is unlikely I will have it but may do if my results are bad. I really don’t want it as it’s every 3 weeks for 14 treatments but if it means I am less likely to get a recurrence then I would have it. If you have been offered it then you are lucky but will be interesting to find out the benefit for you. It is very expensive.
Thank you.
My breast care nurse says that I can stick with Phesgo if I want to and the choice is mine. She confirmed life expectancy rates same but main difference is that there is a 33,% less risk of breast cancer mortality with Kadcyla. I’ve asked her if I start Kadcyla and have any really bad reaction then is there an option to stop Kadcyla and go back to Phesgo. If they say that there is then I will definitely start Kadcyla but if there isn’t then my dilemma continues.
Just to say I had my operation in November and it has been absolutely fine. Easiest part of it all so far. Just don’t overdo it in first two weeks.
Wishing you all the best xx
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Wow 33% is alot. I would def give it a try. I’m sure you can change to Phesgo but obs double check that. Good luck. Let us know what they say and what you decide to do.
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Hi jayesse
Thank you for your post.
It’s understandable you’d like to know if you can continue on Phesgo instead of swapping to Kadcyla because of the concerns you have about the side effects and the potential long term impact.
It sounds as though you’ve had chemotherapy and Phesgo before your recent surgery. Following your surgery, the tissue removed will have been looked at under a microscope to check for any remaining cancer. These details are recorded in your pathology report, which helps your treatment team plan any further treatment you may need.
Radiotherapy is given after surgery to reduce the risk of breast cancer coming back in the breast and chest area.
If any cancer cells are found in the breast tissue or lymph nodes like you mention, your team will consider whether it may be of benefit to offer you other drug treatment to further reduce your risk of the breast cancer coming back anywhere in the body.
Research has shown that Kadcyla can help do this when someone has had surgery for primary breast cancer and some cancer is still in the breast or lymph nodes after neoadjuvant (before surgery) treatment with docetaxel or paclitaxel chemotherapy and a HER2-targeted therapy such as Phesgo.
Just like Phesgo, Kadcyla is a targeted treatment. Like any drug, it can cause side effects. Every persons experience of a particular drug will be different. Side effects can usually be managed so it can be tolerated as @ Linda_Corinne says her breast nurse explained. However, making the decision to go ahead with a particular treatment is a personal one. As you’re already doing, it’s important to weigh up the likely benefits against the potential side effects.
It’s also important that your treatment team know your concerns around swapping to Kadcyla. They have all the details of your individual diagnosis and are best place to talk through the reason they have recommended you swap to Kadycla rather than continue with Phesgo and can help to answer your questions and support you so you can make an informed decision.
Some people find talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service may be able to match you with a trained volunteer who’s had a similar experience to you and was recommended to have Kadyla. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.
You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.
We also offer a range of other free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.
For more details about all of these services, please see the information on the link, or call our free helpline.
As you may be having radiotherapy you might find our information here a useful read.
You are welcome to call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).
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Best wishes
Heidi
Breast Care Nurse
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