Hello
recently diagnosed with the above and started chemo two weeks ago. Had to miss the second dose due to side effects and possibility of reducing the dose. Back for next session in two days and wonder if anyone else has had the same symptoms as me - severe headaches, dizzy and constipation. Just got over those but yesterday I am so itchy everywhere, like a whole load of midges have been feasting on me. Is this common?
Hi Janna
I’m so sorry to hear what’s hit you. It’s so hard, isn’t it! You don’t say what chemo drug(s) you are having but I would advise you to ring your oncology department - at the weekend that may mean using the emergency oncology contact even if you don’t consider it an emergency. Any untoward symptom needs checking out and itching is sometimes an allergic response. Better to be advised by your oncology team than by any of us.
In terms of the side effects for chemo, they will vary from person to person as we each respond differently. Headaches, dizziness and - definitely - constipation do sound normal to me. I had 3 x EC and 9 x paclitaxel for my primary treatment (I had 2 tumours, one hormone receptive, one TN) and I also had extreme fatigue, mouth problems, loss of appetite etc. A dose reduction is often normal and doesn’t affect treatment outcomes, so don’t worry about that.
You may have read or been warned about the nature of TNBC. Most of that, unless it comes from your team, will be somewhat outdated. There is a lot of research going on in the field of TN and at least 2 drugs have emerged in the last two years, along with immunotherapy if you ‘qualify’ for it (there’s a blood test). The outlook is no longer bleak and, if your treatment works, you can be cancer-free, despite all the doom and gloom around TNBC. Here’s hoping…
Meantime, if you are still itching, ring your team and check it’s ok. You don’t want to turn up and then be told you can’t have yet another treatment. Wishing you all the best xx
Hi Janna,
So sorry you’re suffering these awful side effects. Isn’t it enough coping with the diagnosis!
This is my second TNBC (grade 3 stage 1) diagnosed April. I’ve had lumpectomy and started EC 20/06 (first of 4). I really thought I’d be fine, given my previous cancer 2018 was TNBC Grade 2 stage 3. I had chemo, surgery then radiotherapy. However, this time round the fatigue is worse, my mouth already sore and the pounding in my ears from the FILGRASTIM injections means I’m also experiencing insomnia. Back aches badly and headache too. I’ve a constant feeling of nausea but not actually sick. No itch as yet.
My concern is that it’s early days yet and still have 12 cycles of Paclitaxel with 4 carboplatin to endure! Believe me, I’m usually very positive and do all I can to keep healthy; in terms of exercise and eating I am careful. But I do worry about my mental health throughout all this.
Incidentally, I called the emergency oncologist who put my mind at rest regarding the pounding in my ears. Always best to run anything about meds with a professional who has all your data. And do so before your next cycle date.
Would be great to hear how your doing over coming months.
Wish you the strength to get through it and hope you get to sleep- so crucial!
Take care,
Tess x
Thank you both so much for replying, it really does help to discuss with other sufferers.
Rang the oncology unit at 6.30 am on Sunday morning, at my wits’ end with the itchiness but was asked to call 111 for advice. Did so and was triaged and told a doctor would ring me. Five hours later he did so and said he would get an out of hours GP to ring me within two hours, four hours later she rang and told me to buy some over the counter antihistamine, which was my question at the start. Eleven hours to be told that!!!
had my PICC line inserted today at radiology as they couldn’t do it at the unit, this time successfully then back to unit for SARS (?) check and seems it could be Pembrolizumab dose so hope if they can reduce it all will be well.
Am so very grateful for all the lovely staff who help us all so much. Next chemo tomorrow so here’s hoping.
Juanita xx