Morning

I had a similar diagnosis to you. I had an Oncotype test done. Score was 18. I decided to have chemo. May seem mad to some but I couldn't get my head around not having it and then it coming back!

So I began chemo a week ago. I'm having x4 rounds. One every 21 days. I guess you may be similar? 
 

I want to try and keep my hair too. I used the cold cap. You can't tell yet though whether it's working or not. Hair loss occurs roughly around Day 14/17 of cycle apparently! None has started coming out yet though. 
 

I was totally dreading the cap but it wasn't even half as bad as I'd imagined. I did take 2 strong painkillers though, about 25 mins before they put it on. You can def feel it freezing your head but after the first 15 mins I was pretty much oblivious to it being on. 
 

I have close friend who unfortunately went through chemo for bc last year and she has been amazing with advice on general chemo and cold cap/hair maintenance. She retained most of her hair using the cap! 
 

I'm more than happy to pass on her tips and advice if you'd like me to. 
 

Sending love. Sarah xxx
 

Thank you so much for replying, how have you found the chemo??

they've told me possibly 8 cycles, 3 weeks apart. I don't have the full plan yet though as still waiting for surgery results. 
 

A score of 18 isn't too high is it so did you have the option to select chemo or not? Or did they recommend it? 
 

send as many tips as you can, I need all the inspiration I can get. I am determined to try the cold cap even though I know it takes longer overall xx

No problem at all xx

Yes. Score of 18 is considered fairly low. I'm 49 in 2 weeks! My oncologist said chemo not required. But when I researched it a bit more I read that it could have some benefit. I got myself into a real state over it. I contacted another oncologist for a second opinion and through talking it through with her I decided that for me, I needed to have it. I wasn't able to close the box and move on if that makes sense?!?!?

I had no idea what to expect from Round 1. That was the worst bit! The treatment itself all went fine. Pre-meds and cold cap about 25/30 mins before. Then one drug into cannula via a syringe - nurse sat and did that. Time that takes depends on the state of your veins apparently! Mine only took 11 minutes! Can take longer. Then second drug through a drip. That took an hour. Cold cap then had to stay put for another hour and half. This varies though depending on what drugs you have. I was fine just sitting there. I'm a real people watcher and nurses are super lovely to chat to. 
 

Make sure the cap fits well. I was fitted with a 'small'. It needs to be like a swim hat and def not rise up off your crown. If similar to mine, they will wet and condition your hair for you, just before they pop cap on. Def take painkillers. They recommend paracetamol but I took stronger! It takes the edge off for sure. Chin strap tight but not so it cuts off circulation :)) 

If my hair stays put I'm planning do do very little with it. I've only washed it once since treatment and that was on Day 4. Very gently shampoo and conditioner. Gentle washing and pat dry only. All this won't stop hair coming out if it's going to go. But it will help to maintain it if it stays put. I will wash it probably once more before next round on 27th. I have some dry shampoo for emergencies :) It's long so I've just bunged it back in a plait. Some recommend getting it cut short, I've not touched mine. If it falls out massively I'll shave it off and then once it starts to grow back I've decided I'll have extensions. It's taken me years to grow my hair, I like it long. So I figure I don't have to have short hair if I don't want to! 

I'm taking a hair growth supplement tablet too. Viviscal. You can start that ASAP. But check with your oncologist that it's ok to take with the drugs you're on before you start. Nurse gave me a number to call where they check it for you. It's fine for me to take. 
 

I'm now a week after treatment and as bizarre as it sounds, I'm feeling thankful! I think things could've been much worse. They pump you with steroids for the first few days and this stopped me being able to sleep. Hideous but manageable if you just accept it. Although I'm gonna ask if I can have some sleeping tablets next time. Anti-sickness drugs for first few days too. Not sure if they worked as didn't feel sick really at all and still haven't since I've stopped them. I was worried about sickness. 
 

Constipation - yes! Oh the joys! 
Upset tummy - no! Thank the Lord! 
 

Injections in tummy for 5 days straight after. Fine to do. In evening as they can cause bone pain. So theory is you sleep through the worst!  My bones are achey but again, not too bad. 
 

I'm single with two teenage sons so my lovely Mamma came down from the Friday to Wednesday as we had no idea what to expect. I def needed looking after, I was exhausted and she cooked for me. 
 

I'm fine on own now though. Not that I'm having to do much. Make sure you have people to look after you. Emotionally too. The drugs can make you feel a bit low. Them and the sheer enormity of what you'll be going through. 
 

Let me know if you have any other questions. Happy to help you through it honey. It's far from ideal but it's doable for sure. Hoping the next 3 rounds pan out in a similar way. 
 

Love Sarah xxxx

Hey I've just finished 4 rounds of EC for bc im 31 with 3 young kids. I also was gutted about loosing my hair. I tried the cold cap which didn't hurt it was a little bit heavy. The cap didn't work for me unfortunately and my hair came out just before my second round of treatment so 3 weeks after the cap. The chemo itself up to now hasn't been too bad at all the tiredness has been the worst part for me personally but I'm lucky enough to have a lot of help from my parents who have rallied around and helped me when I didn't have the energy to look after them myself or even myself. And although that sounds a bit extreme my the end of the first week I start feeling more like me again but every treatment has been slightly different the 1st I ended up in hospital with a water infection so make sure you keep yourself hydrated. I also developed oral thrush which was pretty brutal so get some antiseptic mouth wash. 2nd treatment I was pretty poorly the first night but was fine the next day. 3rd treatment I was absolutely fine and this last one I was shattered and took 9 days to feel like normal again. If your other wise fit and healthy it's not too bad just make sure you have people around who can helps if you need it. Good luck! 
 

Lizzy xx

Thank you for your reply, you sound like you are doing amazing from this round so fingers crossed for the next rounds that you don't experience much worse. 
 

Thank you for the info too, it definitely helps as I was thinking I would be there all day and medication would take all day too.

Will you keep me posted on how the cold cap works? I know someone who used it and she lost about 25% of her hair so that's really good I think.

Glad you had some help with your kids, you want to be able to rest if need be.

x

Hi Lizzy

Thanks for your reply.  Are you only having 4 rounds?

It sounds like you've coped really well and wirh 3 young children too. How are they coping? Kids are so resilient aren't they, I feel they are ok with the side effects but the physical appearance is something I know will upset them if the cold cap doesn't work. 
 

It's a lot of up and downs isn't it the whole process xx

Of course I will. I've pinged you a friend request thingy too. Let me know once you have all your results and when you're due to begin chemo xx 

I only told them once I knew my hair was going to totally come out but I felt so much better once I had. My 4 year old doesn't get it but the older two have been amazing at looking after me or helping a little more than normal. I've finished my 4 rounds of EC and start pacataxol ( I think I've spelt it wrong) on Monday I have that every Monday for 12 weeks. I've been told the taxol is slightly easier then the EC but I don't want to be too optimistic. I hope your treatment goes well and the cold cap works for you! 
so many ups and downs you will feel better once the chemo starts and you have a plan. Mine last taxol is 1st November -providing everything keeps to plan I can't wait! X