u/Sure_Cherry9759

Anyone who’s had this, how long into the treatment did it start, what were the early signs and what helps fix it / avoid it?

I feel ok at the moment but I only started it yesterday and have a real phobia of vomiting so any slight nausea makes it hard for me to do day to day stuff. I’m gluten intolerant, vegetarian with IBS, probably gastroparesis and reflux. I’ve read that PPIs reduce the effectiveness of Xeloda and I asked the doctor about this yesterday, she said she’d get back to me but didn’t. They gave me domperidone but only 30 pills and the instruction is to take it 3x daily if needed for nausea but I have a history of vomiting undigested food 12 hours after eating so I feel like that should have been addressed… seems like some anti nausea meds make gastroparesis worse, others increase risk of QT elongation with the domperidone. This is going to be 6-8 months! Did you get nauseous or know of anything to avoid it / help it? (Also cross posting this to the tnbc group - hope that’s ok)

I feel ok at the moment but I only started it yesterday and have a real phobia of vomiting so any slight nausea makes it hard for me to do day to day stuff. I’m gluten intolerant, vegetarian with IBS, probably gastroparesis and reflux. I’ve read that PPIs reduce the effectiveness of Xeloda and I asked the doctor about this yesterday, she said she’d get back to me but didn’t. They gave me domperidone but only 30 pills and the instruction is to take it 3x daily if needed for nausea but I have a history of vomiting undigested food 12 hours after eating so I feel like that should have been addressed… seems like some anti nausea meds make gastroparesis worse, others increase risk of QT elongation with the domperidone. This is going to be 6-8 months! Did you get nauseous or know of anything to avoid it / help it? (Also cross posting this to the main breast cancer group - hope that’s ok)

I’m in a trial but got randomised to the control group. I’m a little disappointed not to get the new targeted therapy but in England even the control group gets additional pembrolizumab (usually that would only continue for those who got PCR and be switched to Xeloda for those who didn’t) so I’m still going to receive extra treatment compared to going to the nearer hospital. Anyone else in a similar position wanting to touch base like a buddy system and go through it as a group? Anyone got any tips to reduce side effects?

My pathology report was a lot worse than expected. I was absolutely crushed at the time but that was mid March and I’ve had a clear pet scan and finished radiation since so I’m feeling better. Not looking forward to more chemo! I’m joining a trial and not sure if I’ll be getting the new mk2870 or xeloda plus more keytruda. If you’re in a similar non pcr position do you have any tips for avoiding side effects? I’d prefer IV over oral meds but will take whatever I’m given and just try to get it over with asap.

I was diagnosed tnbc last summer, did the keynote chemo and keytruda, had mastectomy with implant and lymph nodes removed and due to start radiation Wednesday. I’m exhausted all the time like dragging myself around despite only spending a few hours a day out of bed. I had Covid badly in 2020 then long Covid and have been exhausted since. I got some respite when I was diagnosed adhd and given dexamphetamine but I’ve had some chest pains during chemo that the hospital can’t find a cause for so I don’t dare to take it now and I just don’t feel like doing anything. I wonder if some of this is psychological as I felt better immediately after surgery until I received the pathology report which showed “>50%” residual disease even though I’d been told that my response was really good and the tumour had gone from being visibly sticking out to not palpable. Has anyone had any medication that’s improved their energy level? I’ve already had iron infusion and blood transfusion which were no noticeable difference, I’m on rivaroxaban after a picc line DVT too… not sure what I particularly want to ask but I’m worried this won’t get better and not sure it’s even related to cancer. Any idea how this could be improved? (Bearing in mind my energy envelope is pretty much non existent and with the other conditions I’m not sure if exercise is supposed to be better or worse - definitely feels best if I do nothing as long as I stay doing nothing)

I’m hoping to start the Trofuse 12 study for the new drug mk2870 aka sacituzumab tirumotecan. I think it has already been trialled for stage 4 but now it’s being tested against xeloda to see if it is more effective at preventing recurrence in those who didn’t get PCR at the time of surgery. Is anyone else on this trial or had any experience of doing any trial chemo drugs?

Does anyone else have experience of the drug Sacituzumab Tirumotecan aka MK2870? I’m hoping to join the Trofuse 12 trial which compares this new drug to Xeloda in patients who did the keynote treatment for tnbc but didn’t get pcr at surgery. I think it’s been used a bit (maybe only other trials) for other cancer types and in the stage 4 setting.

My pathology report only said >50% cancerous cells remaining so not terribly specific but I’m still RCB3 which is frightening. It was also a horrible shock as the initial tumour felt huge and seemed to respond quickly to chemo to a point it wasn’t palpable and imaging sounded hopeful…. I was told to expect imaging every 2 cycles but was later told it wasn’t necessary to have more as it already showed a good response. After surgery I asked for a pet scan which was clear and I’d already insisted on having all the lymph nodes removed (I was told verbally that one was affected but I got my imaging report and it seemed like a couple more were suspicious). Only the nearer nodes were affected and I’ve been staged as 3a but I’m frightened of it not being gone and also frightened of how bad the treatments are going to be. Starting radiation on Wednesday for 15 sessions. I have Ehlers Danlos, pots and long Covid too.

Not sure what I’m looking for really but very grateful for any support.