I started Trodelvy on Thursday for TNBC and have been posting on that thread. I’ve found people ahead of me on the treatment which has been helpful and reassuring.
As it’s a new drug I thought I would share some experience as it unfolds. I was pretty frighted on Thursday as my Oncologist said it was harsher than other chemo I’ve had in recent years. She compared it to FEC-T which I had following primary surgery in 2012.
On Thursday I found the premeds, mostly IV made me feel spaced out. I know the nurse well and he saw me change and slowed them down which helped. The infusion was 3 hours plus an observation time. Im also using the cold cap which adds another hour. Aside from 6 hours and the emotional strain of new treatment (will it help/what will it do to the quality of my life) I think the pre meds were the worst part.
I managed 6 hours of natural sleep despite steroids on night one.
Day one I was flushed and full of steriod energy. My appetite was enormous.
I’d read some people get constipation early in the cycle. I have increased my fibre intake mostly with fruit. All working as normal, hope that continues. Trying to make healthychoices
Wasn’t best pleased to start the injections to boost my immunity but did it without hurting myself or creating a bruise. I’ve had practice as did months of daily injections a couple of years ago to deal with a clot in my vena cava. I now take tablet blood thinner thank goodness.
Day 2, I took a zopiclone to mitigate the 8mg of steroids at night. I know from my last treatment 2mg impacts me. I got 6 hours again but woke up like a meerkat at 5am. I’ve not felt much nausea but have been taking metaclopromide. I have had mild stomach cramps so far, just aware of them. I tried to rest this afternoon as ache in loads of places but sleep so far has eluded me. I will try my bed without a sleeping tablet tonight 3rd night. Soon just seen the time.
So far so good generally nothing I don’t seem to be able anticipate. It’s early days though. I’m not taking anything for granted.
Hope this helps someone.
Day 3. Managed a few hours of sleep. So glad it’s my last day this week on steroids. At 4.30 I was toasting crumpets! The dog was very confused why I was up. I did manage to nod off round 6 and had another hour. New side effects today have been aches that have got worse and a feeling that I’m being shaken up from the inside. Managed to get fresh air with a slow walk to the park. Weirdly my dog hasn’t left my side even when he was off lead. He senses something is different. I set out to make a roast and doing it was quite enough. Hoping for a solid sleep now.
Day 4/5-I had to surrender to complete rest. Had a terrible sleep Sunday night, perhaps a couple of hours but again the feeling of being shaken from the inside and a dreadful headache night and day. I tried Reiki, sleep relaxation apps, audio book but basic pain all over and under my skin. I felt that if I could sleep some of the unpleasant feelings would subside but was awake all day despite residence on the bed or couch.
Day 5- Tuesday I managed to sleep for 10 hours last night. Feeling as though the steroids have left me. My mouth has developed the tenderness and sensitivity to heat that’s a step away from ulcers, mouth washes in use now. This morning I felt close to ok. Its been a good day with getting a good morning dog walk done and a trip to the supermarket in the afternoon. Paced myself as felt fatigue through the afternoon.
Day 6-This was a good day. Bloods in the morning made me feel like here we go again. I went and bought a potted
Christmas tree for the front of the house. Then walked the dog. Made my Christmas cake and Maccarons. My daughter took me out for tea with her first salery… So a good day
Day 8 second infusion went faster. I tried a small dose sleep tablet while on steroids. The weekend was good. The last two days though!!! My mouth is full of sores, urgency round poos, 5 today, pain in abdomen and legs, extremely fatigued