Hi alex2, I have been amazed at how few side effects I have had. The first week, I was sitting at home literally waiting for my kidneys to fail or my head to fall off. Nothing at all! Early days but after my second treatment on Friday, I have had some indigestion and heartburn. I was anxious about having an allergic reaction but after 2 treatments, I guess there’s much less chance now. I do worry about the long term effects on my body. I won’t even take paracetamol usually so this is a huge deal for me. Re the cold cap… a scarf is a good idea. I have decided I’m going to soak my hair BEFORE leaving the house on Friday too! How is your treatment going? xx
2 Likes
That’s good to hear Sarah!
I felt quite rough with EC, especially after the Steroids had worn off. Heavy head, eyes, constant nauseous felling but weirdly a good appetite! I guess your lack of side effects for the Taxol gives me hope for when I have to start on my weekly regime after my 3rd EC.
Keep going - we’ve all got this!
X
1 Like
Hi little_owl, You sound similar to me - I am also on weekly Paclitaxel for 12 weeks. I have just had my second treatment on Friday. So far, no side effects apart from a bit of heartburn and indigestion yesterday. I am trying fasting to protect my healthy cells but it is tricky as I am so hungry a day after treatment that I eat too much… that’s probably what gave me heartburn! I want to do all I can to get my body through this with minimal damage/side effects. Have you had 2 treatments now too? Im also religiously drinking 3 litres of water per day and brisk walking at least an hour, more if it’s nice weather! Good luck to you. Are you also her2 positive? xx
Is your EC weekly too? xx
Hi Sarah, no the EC is a 3 x 3 weekly. I’ve had one, got two more to go! X
1 Like
Hi Sarah, no the EC is a 3 x 3 weekly. I’ve had one, got two more to go! X
1 Like
Hi, I’m about to start Chemo this week for stage 2 triple negative breast cancer with no spread to lymph nodes. I’m having 12 weeks of Paclitaxel / carboplatin followed by 9 weeks of EC before surgery. I’m just eligible for pembrolizumab immunotherapy too, but oncologist is trying to balance the additional protections this may give vs chances of side effects derailing main chemo treatment, particularly with an existing thyroid condition. The current decision is to wait and see how the first 3 weeks of just chemo goes.
So my many questions are… Has anyone else been faced with this decision? Does anyone have thoughts on how likely you are to have bad side effects with pembro if I seem to tolerate the initial chemo well? Has anyone experienced thyroid issues as a result of pembro with early stage tnbc? How do I get comfortable with balancing getting rid of the current cancer vs giving myself the best chance of cancer not recurring, with the long list of side effects?
Sorry the questions paragraph is such a download! Any comments on experience with pembro or decisions not to proceed with it would be very welcome!
1 Like
Hi Sarah, good to hear your treatment is going well, I’ve just had my third treatment today. I know what you mean about watching for side effects, I have been a bit obsessed! But thankfully so far main issue is constipation and nausea, for 3 days last week. Plus I am much more tired, with extreme fatigue on day 5, so I seem to be falling into a pattern. I’d love to go out walking, but having to do gentle exercise and tai chi atm. Fridays are my netflix in bed all day. I’ve also cold capped so far and don’t find it too bad after the first 15 mins. I’ve read that the third treatment is when it’s likely to start to fall out. Here’s hoping I hold onto some of it. I’m used to fasting as I lost 2 stone from fasting over the last year. That’s how I discovered the lump as I lost fat at the top of my chest, I couldn’t feel it before. So I try to eat alot less the day before treatment. I’m tnbc with one lump and thankfully clear lymph nodes. Hope your treatment continues to go well. I certainly feel much better mentally now I’m on my 3rd treatment that I can do this. It felt so devastating before, but I have hope now.
2 Likes
Ahh well done you 
Yes now something is actually happening it feels better, I agree. My original mammogram was back in July so it feels like it’s been a long time getting to this point. I hope your treatment remains trouble free. I just heard of someone that I’ve been messaging who had an oncologist appointment last week and they told her she only needed 9 treatments and not 12! Hoping that happens to me but then I’ll probably worry I was being short changed!! xx
1 Like
Hi Laura
I’m kind of walking in your shoes too… I had a diep flap reconstruction and reduction 11 weeks today… I was led to believe that surgery was the last step and the cancer gone. Unable to have radiotherapy (hence the diep) as my last er positive breast cancer was this time 17 years ago, and I had radiotherapy then.
Adjuvant chemo as this cancer was grade 2 invasive.
I’m day 7 post EC and hoping to get used to the ‘new norm’ for me. I understand today what is meant by chemo fatigue. I’ve ‘given in’ sat in bed all day and going to have a nap now!
It was very hard telling my family & friends, as everything happened so quickly (with Christmas in the middle) but I have been overwhelmed with love and support from so many people it’s amazing. I hope you find a time when you can tell your children. 
1 Like
Hi Chellebelle. It was grade 3 triple negative 22mm with no node involvement. I think my chemo is due to the triple negative rather than the rest as after a lumpectomy all margins are clear so effectively cured. Just waiting to get a start date. Don’t really want one but want to get going with this if that makes sense.
Look after yourself
Well…I tried it…23 minutes in and discovered the nurse hadn’t put it on correctly! So disappointed. Sitting there thinking…this is a dawdle…no wonder the cold was only making contact with my forehad…which I tolerated… but it just disheartened me. Wasn’t to be. Im rubbish with the cold anyway. Thanks for your advice x
1 Like
Oh mandz, that’s rubbish. My first one was done wrong too and I’ve read of others… I phoned Paxman for advice and have taken matters into my own hands. Just joined Paxman FB group too and a lady on there said her first 5 were done wrong… hair not wet enough but she persevered and has kept all her hsir anyway! All is not lost if you want to give it another go. Good luck whatever you decide. xx
2 Likes
Thanks sarahc_123…I’ll see what Friday brings. I had quite a late appointment last week which doesnt help either as id have been til after 7pm. I feel I’m asking a lot of my husband to come back for me that late as we live quite far from the hospital. When you weight everything up it doesn’t seem worth it. Appreciate your replies…always. TC X
1 Like
Hi healing24…thanks for your reply. I wouldnt have thiught if taking paracetamol beforehand. Having spoke to the nurses after a botched attempt by a nurse to fit the cold cap, she said its 90% a waste of time which kinda put me in a ‘is it worth the extra hassle’ mode? I might join the paxman group and see what info I can get from there. Keep well…stay strong x
1 Like
That makes me so cross! A waste of time for them maybe as it isn’t a medical procedure but not for those of us who want to try and keep our hair. I have heard such negative feedback from many people about how the nurses deal with this… it’s difficult enough as it is coping with a diagnosis and treatment. If they offer this service, they should make sure they can deliver it. It is definitely NOT 90% a waste of time! xx
2 Likes
I was thinking that myself…apparently theres so much money been spent on it they try and encourage its use but most of the time it doesn’t. Nurses words to me…I honestly wouldn’t bother… do you know what else I get often…awe youll be fine as your hairs so short…you’ll hardly miss it… thats a real kick in the teeth…
1 Like
Hi…just started my treatment last Friday.
1 Like
I’m determined to see this through with the scalp cooling. It was offered and I accepted it. The first week a nurse said ‘It doesn’t work very often’ but according to my regime of weekly Paclitaxel and the fact that I have thick hair, the success rate is good. Paxman themselves were very encouraging and also reading personal stories on their FB group. They will just have to put up with me for 10 more weeks! xx
2 Likes
Well, I start my first chemo tomorrow 25th Jan 3 x EC then 3 x Docetaxol with phesgo.
Spoke to the nurse re cold capping, she seemed a bit indifferent and when I said I intended to use cold gloves and socks for Docetaxel she tried to put me off saying it will make my arm cold. I haven’t heard that before so need to do a bit of research before I get to that part. Fortunately my lymph node was clear and the reason they bought the appt forward was to ensure I met their target. Onwards and upwards.
1 Like