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TDM1 and radiation side effects
22 Posts

I'm through my neoadjunct chemo, then lumpectomy and start radiation (10 rounds) today, but also get my adjunct chemo first iv Friday of TDM1. Have been on Trastuzumab since I stopped chemo in May, but since they found cancer in the tumour they removed (even though it had shrunk in half due to first chemo 6 rounds) despite having a a 1mm clear margin, they want to switch me to TDM1. Has anyone had it? What were your side effects? Also what were radiation side effects? I've heard most people say with radiation that it's a sunburn and makes them tired but symptoms don't show until near the end of the 2nd week. How long after the TDM1 iv did the symptoms last? Trastuzumab was maybe a day of being tired and having chills. Really a non-event but I guess TDM1 is more effective than Trastuzumab. My first 6 rounds of chemo was a week to 10 days of symptoms. Just wondering what people's experience with TDM1 was. Symptoms and how long they last, plus radiation. I appreciate any insights as I find with this journey, sometimes what I imagine is worse than what occurs. Although chemo was no joke ;( Can't believe I need TDM1 through February. Was thinking that after chemo, surgery, and radiation I was done and could take my boys on that Italy vacation we've been planning for 3 years now.

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1297 Posts

good morning susan

thanks for the post….while I am not familiar with #TDM1 infusions, if you search that hashtag there are a number of folks on the site who have talked about it. I think another great resource would be the cancer information specialists.
1-800-939-3333 is their number…if you have some time give them a call.

I did have 16 radiation sessions and tolerated them very well until the last week. my skin broke down and I developed some open sores. as many others have said, I think moisturizing is really helpful to the skin….ask your team which water based product they recommend. I also made my own saline to soak the tissues…..so soothing. my pro tip, especially in the summer is to store your products in the fridge, the cool is so refreshing.

sounds like lots going on over there…radiation and now this new chemo. I can understand your disappointment in having treatment continued to next year.
sending all my good vibes for your continued treatments….the family trip will be your pot of gold at the end of this rainbow! 🌈

#tdm1 #breastcancer #radiation

732 Posts

@SusanC, your post is well-read by many, and I do recall your mentioning the Italian trip with your sons…. I sure do wish I was tagging along when you go.

I had 36 rounds of radiation to my head and neck area for tongue cancer….and after about ½ of the treatments, I began feeling a sunburn---on the inside of my head and neck area. My neck skin began peeling towards the end of my treatments…but I had to be patient for the lessening ‘sunburn’ sensations. I did feel fatigued but did not have chemo at all…so, hang in there, and Arrivederci pronto!!

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