Hi I've just completed 3 cycles of EC chemo and have not had too many problems. I'm about to change to Docetaxel with Herceptin and Pertuzamab prior to having a double mastectomy. Is anyone else having similar treatment?
I had FEC in 2014 without many problems before a double mastectomy and then radiation. All was fine til Sept 2021 when I was diagnosed with metastatic breast cancer in my lungs which whilst it is not curable can be treated to prolong life. I am half way thru the regime.you are switching to. I am finding it much harder than FEC with more side effects. However every person is different and you might not. Diarrhea and constipation are the toughest so speak to cancer nurses and look online at reputable sites for help if you get those. Fatigue nose bleeds cold sores moth ulcers thrush and eye infections have all been on my list too. I can give you more information about how I dealt with each of those if you need it. My worst symptom are day 4 to day 12 and then they improve. Get prepared with all the meds that will help find some trashy tv and ride out the storm. It will soon be over. X
Hi Lilyanne, yes I'm having similar treatment. Had 4 rounds of EC and manageable although many many side effects. I do feel greatly weakened on the first round of Docetaxel/Trastuzumab/Pertuzumab though, can't say I like it at all. Diarrhoea is an almost welcome change mind you from being constipated for weeks on end with EC. It's the bone pain for me, it actually caused my back to go/lock the other night. That was not a good night, racing for the toilet while barely able to walk was a challenging combo. Yikes! Luckily the nurses are saying I won't have to endure an increased dose as was the plan for next time, that was giving me the fear lol. Upper bone pain in my jaw, neck and collarbone felt like whiplash but felt better next day and I could strangely walk fairly ok by then too. The upper bone pain continues. I'm taking Gabapentin for pain relief, quite good and monitoring my temperature as borderline again. I hope you don't get the bone pain but heard others have been affected in the hips. And you need to stay on your feet to avoid blood clots?? I managed due to the double steroids induced lack of sleep anyway and mainly fear of not doing it. But challenging. My mouth also feels like an old freezer and I've had the bleeding gums every time I brush my teeth. Mint toothpaste actually burned like hell so on some age 1-5 strawberry stuff with an even softer toothbrush thanks to other half. Have unflavoured toothpaste to try too especially for those on chemo. And Difflam mouth spray is exactly like the mouthwash but with a nozzle, huh! I'd heard it was 'magic' spray so got some. But it must surely also be attacking the cancer cells with a whopping great firebomb.. which is nice. And my nausea has gone, at last! Are you getting the non chemo ones by thigh injection rather than iv?
And good luck, you'll hopefully do better on it than me. Think I'm just unlucky. Keep moisturising your feet btw, have heard of nasty blistered soles and it can affect the palms of your hands but so far I don't have either. Nail issues likely too. My feet do feel drier though so Neutrogena is going on. I rest up when I need to and get my legs moving when I don't as fluid retention has also started and my feet are swollen a little. We'll get there. Sorry if my post is not what you needed to hear right now but maybe best to deal with realistic side effects and how to treat/avoid. If I can help. Docetaxel is a pretty nasty one sadly xx
Thankyou for taking the time to respond to me. I really appreciate it.
I'm really sorry to hear that the cancer has matastasised to your lungs. That must have been hard news to handle. I hope you are feeling some benefits of the Docetaxel, are you on the HERS2 Targeted therapies too?
Sorry to hear the treatment is causing you side effects especially when you did ok on FEC.
I suppose I'll find out soon enough if it'll cause me similar problems. I know I have to just get on with it.
Thank you for your advice. It's good to know which are the worst days and that it improves.
Thank you for taking the time to respond to me . I really appreciate it.
I'm sorry to hear you're suffering side effects on your first cycle of Docetaxel with Herceptin and Pertuzamab.
The bone pain doesn't sound good. When I had my first dose of EC, my worst side effect was bone pain. It happened on day 5 and felt like my bones were on fire. It went away when I drank water so I got my husband to wake me every couple of hours so I could have more water and although I felt it a bit the next time it was never as bad.
Like you say having diahorea could be a change from the constipation from EC. Hope you're in control of it now?
My treatment plan shows Herceptin and Pertuzamab via drip but at my last session the nurse said it would be done by injection into my thigh. She said it's given very slowly and takes half an hour to administer!
Are you having a mastectomy following Chemo?
Thank you for your advice I'll find out soon enough if/how it's going to effect me.
Interesting about the water working for your bone pain in the last rounds thanks. I don't think I've ever drank so much plain water in my life. Mainly from a wish to flush through toxins put in but also a ridiculously dry mouth. The diarrhoea lasted until day 10, yesterday. Went normally today for a very nice change, what a treat lol. But it's not really so bad, limited to 4 times a day, maybe think about getting Sudacrem or similar though as it can leave you feeling a bit sore. Think the nurse was impressed I had some when they checked in with me.
Gabapentin has helped with the bone pain, you slowly increase the dose and then decrease again and come off the capsules on day 10. I've not had any side effects with that. Feel I've taken so much medication anyway that one more can't hurt.
Ok the thigh injection. I got mine over 5 minutes, the nurse actually got me to put a timer on my phone. It's great that it saved 2.5hrs by iv as chemo came next but I think I'd have preferred it over 30 minutes. I was originally told to expect to be in hospital for up to 9hrs, including on observation for reactions!! Was nervous, not gonna lie. It did feel like intense burning going in a couple of times. At the start and about 10 to 15 seconds later. I did have to yell when that happened and hadn't been warned. Hopefully your slower injection stops that. They get you to lie on a bed for it. Maybe next time I'll take a stick to bite down on lol. It's a new way of doing it so I might ask for it going in slower next time, thanks. I got a different nurse and it all felt a bit hurried. Sadly a bit of a grumpy one too which you don't really need. The other nurses have been amazing. I'd rather have been warned it might hurt a bit, was quite shocked. And it leaves a big nasty looking bruise on the front of your thigh but the bruise doesn't hurt to press. It's starting to fade now.
All I know about my op is that I'll meet the surgeon in March. Presuming they're trying to shrink the 2 breast tumours enough to avoid the full mastectomy but we'll see. One is 4.2cm and the other one hiding behind it hasn't been given a size. The larger one had 1cm knocked off it though after 6 weeks of EC and another mammogram, winning!! It also reduced what's in my armpit which they said is far more important, the real indicator of success. Good to hear results like that, makes this feel worthwhile rather than simply a test of endurance. The lumpectomy still looks a big operation due to clear margins. So I have the armpit cancerous lymph nodes too but am lucky it hadn't travelled elsewhere by the time of being checked. And I can actually feel the larger tumour going down more when I press in. Hard not to get my hopes up but staying optimistic is a good thing right?
Have you had problems with your mouth or managed to avoid? It's a double dose of steroids for this chemo starting the day before treatments so I hope you can sleep ok with them. I can't. They do prop you up though.
If I can help with anything, just let me know. I have someone who went through similar treatment giving me tips almost daily and I can't underplay the support. The non medical touch. Where its ok to feel grim some days and not yourself and feel puffy and put weight on with the steroids before even looking at food. And eat non citrus mini milks ice lollies for a sore mouth til the cows come home. One good time to carry a bit of extra weight even. And I've heard about others getting their energy back and their bodies functioning properly post treatment. Sure good to hear.
