Hi Astralsphynx

How are you and your mum doing?

There shouldn't be a reason not to have the cold cap, I was offered it and started chemo during pandemic. I chose not to though as I suffer for headaches and didn't want the cold to kick one off.

I have triple negative too but had Carboplatin/Paclitaxol first before EC... Think it was because I had to have that every week. 

I'm now on EC and it not been unkind to me. Everyone responds differently.

Has treatment started now? How are you both getting on?

Take care and stay positive... It helps. 

Hi,

I'm not triple negative, I'm HER2+, but I have had EC chemo for it and to be honest my side-effects were really minimal.

I felt a bit sick on the day of chemo. I recommend having someone at home on that day to take care of her. I ended up feeling a bit naseaus on the day and went straight up to bed. It could be good to have a family member to make sure that she has a glass of water / anything she needs there when she goes to bed. However when I woke up the next day I was just slightly tired, no nausea. To be honest I normally feel worse when I have a hangover. I'm in my 30s so age might be helping me but it really wasn't the scary experience I thought it would be. I cam off the steroids on day 4 after chemo and expected to feel something but didn't really feel any different to before. My appetite has been normal throughout  since chemo, I've been eating like a horse in fact! I did some fasting pre-chemo - some clinical studies in the US have found it to alleviate chemo side-effects but it's not really accepted by the NHS or British medical institutions yet - most people still think it's dangerous. Personally I feel it helped me though.

I've noticed some hair shedding but it's still minor at this stage. I did cold cap - it surprises me that she's been told that the cold cap is not available. It seems to be in a lot of other parts of the country. Maybe if she pushed a bit on that point they might be receptive to giving in to that - she could voice her anxiety over not having it and try calling a few times and they may budge.

If you want to know anything else about EC, I'm happy to share more but it really has been fine for me generally.

Hi I had EC 2,5 years ago and had cold cap too,lost my hair anyway.

I was ok with EC she will take with her some antisickness tablets which she needs to take it before or with food I cant remember now.But she has to take it even if she doesnt feel sick.I wasnt sick at all.Make sure she drinks at least 2 l of fluids everyday.Dont eat spicy food.I didnt have any side effects with EC and I ate like an elephant:)For mouthcare i used soft or baby toothbrush and baby toothpaste also mouthwash for kids.They are not harsh.For personal care I used non perfumed shower gels the same with shampoo and was using E45 body lotion.

I was eating 1 bowl of fruits everyday and lots of veggie included in my food to boost the bodys immunity.

Otherwise I ate and was pretty normal.

Denise

Hi you are the first person I've found who started with cardboard pac and gone on to EC. I've nearly finished carboplatin and pac with cold cap but scared to death I will lose my hair on the EC 

Hi Teecass

I hope you are doing well and coping with treatment.

I didn't bother with cold cap and embraced the Matt Lucas look! A lady I met during treatment did have the cold cap and her hair thinned badly but because hairdressers were closed with covid she wasn't able to get a more forgiving cut.

Losing hair is hard, much harder than I thought it was going to be. At the start I was "it's just hair" until it came out in clumps. I'd lost most of it on carbo/taxol (shaved it off after approx 6 weeks) but when on EC it was a proper shiny slap head.

You have the benefit of some decent wigs about and Macmillan will give you a voucher towards one too.

If it's any consolation, my hair has grown back beautifully and in much better condition than it ever was!

Take care

Vicky x

Hi there, 

I had my second round of EC on Wednesday, and aside from the hair loss my main symptoms have been nausea and tiredness. I really struggled with the nausea first time round, so stuck to very bland food (toast and rich tea biscuits were key!). I also spoke with a nutritionist who recommended branded kids cereal, as they have a lot of vitamins added in. Second time round it's been a lot more bearable this time. I also spoke with my oncologist and he advised adding the anti-sickness if been given to take "as and when needed" before every meal which has helped. I also ate a bit more carefully on the day of having it, so stuck with bland food and drinking more water and less tea than normal, which I think may have also helped!

For the tiredness, my mum stayed with me for the first night after my second round and having someone to make sure I had water, do the dishes and just to talk to was really helpful. I've also had help with shopping, as for the first week or so I think I would have struggled to drive to a supermarket and get round it without needing a rest!

Although I've said all the above, I did bounce back after the first few days, and managed to go on walks and was working from home a week after my first round, so it can pass quickly. 

I had a few mouth ulcers and mentioned them to the nurse at my second round and was sent home with some mouthwash to try if I get anymore, so if your mum struggles with them (or anything!) mention it to the oncologist/nurses and they'll hopefully be able to provide something to help.

I hope that's helped, I think everyone reacts slightly differently so it's tricky to know exactly what to suggest. Make sure you look after yourself through this as much as you can too though :)