Hi ladies. I’m from the October thread and finished chemo on 19th Jan. It’s very scary before you start but it won’t be as bad as you think. I had 3xFEC and 3xT. Just be kind to yourself don’t over do things. If you need a nap have a nap. My top tip would be to get outside as often as you can. A bit of fresh air does you the world of good.
I lost all my hair and most of my eyebrows and eye lashes. My hair started growing back after I started T and now I have a good covering. It looks like I’ve cut it really short. My eyebrows and eyelashes are also coming back.
Good luck ladies. Feel free to message if you have any questions or pop onto the other threads where there’s loads of ladies ready to offer their own tips.
Lots of love and ? sparkles x
Thank you for all the tips. I find this forum quite difficult to navigate so apologies to all x
Hello, I’ve recently finished chemo so thought I’d answer the cold cap questions. I posted earlier but it’s vanished so apologies if the earlier post reappears!
I finished chemo 6 weeks ago & I used the cold cap. I had 4 cycles of docetaxol & carboplatin. This was a local recurrence in a short space of time so I also had lost my hair last year. I had AC chemo the first time & I was told the cold cap probably wouldn’t work. They say the docetaxol is kinder to hair. I’ve kept most of my hair using the cold cap. It is very cold & uncomfortable but you do get used to it after the first 15 minutes. Wear layers & take a scarf. My unit provided blankets. Some say to drink a hot drink but I found the cap very tight under my chin so hard to eat, drink or talk! Depending on which chemo you have depends on the length of time you wear the cap before & after the chemo. For the docetaxol I had it on an hour before the chemo started but the pre meds & steroids are given whilst it’s on. Then half an hour though the carboplatin it came off. For the EC part it’s a longer amount of time. My hair has shed, it’s still shedding now. Most people wouldn’t notice. They say not to faff with your hair, to wash once or twice a week with tepid water using a jug, not the shower. You need a ph balanced shampoo & conditioner & no heated appliances. Because my hair was still in that ‘I’m growing it’ messy stage, I did gently use straightners on it. Also, after being bald & finally having a bit of length, it helped me feel more like me. They do advise not to though. The cold cap is also quite heavy & I always felt quite light headed with it. They also recommend a silk pillowcase. There’s lots of information on the paxman website. It’s really hard not being able to colour your hair, I found that as uncomfortable as the cold cap itself!!
The sister on my unit said the way you feel forms a pattern. Having been through it twice, it really does. So how you feel the first cycle will be the same throughout. Your oncologist will see you before cycle 2 & adjust your meds if needed. Your unit will also give you telephone numbers if you are unwell. You usually have a pre chemo chat on your unit where they’ll go over this.
If you’re not using the cold cap, get a sleep cap for bed as it gets cold when you’re used to having hair.
Try & drink lots on chemo week to flush it out. A short walk each day helps too, also just for a change of scenery.
Good luck to you all xx
Thank you Sue. You are right people don’t know what to say… I feel quite lucky I have found this forum because I feel you real close to me even though we are miles-countries away
Thank you Sue
Thank you Whyte Fawn
Morning to you all. I finished chemo just over 6 weeks ago & I used the cold cap. This is my 3rd attempt of trying to post so apologies if lots of long, rambling posts appear from me!
The sister on my unit said that how you feel after chemo follows a pattern. I had a local recurrence very soon after so I’ve had 2 lots of chemo less than a year apart & it really does follow a pattern each cycle. Including toilet issues!!
The cold cap will be very cold! It does add extra time onto the data. Depending on which chemo you have depends on how long it goes on for before & after the chemo. I had docetaxol & carboplatin, each infusion was an hour plus an hour of cooling before it started. The steroids & flush can be given whilst the cap is on though. My unit provided blankets but take a scarf too. Because they need your arm I used to wear layers. It is very cold & quite heavy. It made me feel quite dizzy. It’s hard to eat & drink as the strap under your chin is so tight. That said, I have kept most of my hair!! Your hair will shed, mine is still shedding 6 months later. I read that you need a ph neutral shampoo & conditioner & to wash it no more than twice a week with a jug using tepid water. They advise no heated appliances but I did gently try & straighten mine. If you regularly get your hair coloured it’s very hard not having this done & seeing your roots!! I found that as uncomfortable as the cold cap! Having lost my hair the year before I’m so pleased I used it this time. They also recommend a silk pillowcase.
For those not using the cold cap, a sleep beanie is good as it gets cold at night when you’re used to hair.
Good luck to you all. Xx
6 weeks later, not 6 months later!
I forgot to say, try & drink as much as you can on chemo day & the following days. It’s hard to find something you can drink as your taste buds will change. I found squash with sparkling water easier to drink than plain water. Your taste buds will return though. Xx
Morning ladies had 2 fec chemo yesterday
You have to listen to your own body until now I have had odd wobble but nothing too bad
For me the most important part of chemo was being prepared for hairloss I knew it was going to happen so be prepared some suit wigs I don’t so opted for scarves
My kids found it upsetting not losing hair but finding it all over the house so I shaved my head I must say I look really canny better than I could ever imagined
As a family we are much happier and accepting of an awful situation that none of us want to be in
It will get better so just be kind to ourselves and stay strong and be proud of yourself xxxx
Hello everyone. I have my oncology appt next Tuesday to sort out exactly when I start but should be fairly soon after that. I was diagnosed on 28th Feb and have a small lump and lymph node involvement. It’s Her2+ so will be having Herceptin alongside the chemo (been told probably 6 cycles but don’t know which sort yet) This thread has been incredibly reassuring so thank you ladies who have shared their experiences.
I’m a primary school teacher and worked from diagnosis until the start of the Easter holidays but regardless of when chemo starts I will not be going back after they end. I teach Y6 and I think SATs stress might just finish me off!
I have 2 boys, 7 and 4 and fabulous friends who will get them to and from school if needed so on the roughest days I just need to get them up and dressed.
At the moment I feel quite calm and resigned about losing my hair but I realise this might change when faced with the reality!
Anyway it’s so good to know there are others going through the same. Good luck to all of us.
Hi and welcome.
Thanks for sharing your diagnosis.
I think you would be advised anyway to take the time off from school, because of the risk of infection.
Please come and chat whenever you want.
Best wishes
Sue xx
As I lay here in my (probably) dexamethasone induced insomnia I thought I’d give the story so far 36 hours into my first FEC cycle. I’m on pre-adjuvant 3 FEC, 3T started Tuesday 3rd afternoon. The scariness was immeasurable for me on Tuesday morning and I hardly ate anything but once I get started and the pre-chemo steroid kicks in, I got hungry so advise to take some snacks. My anti-emetic is Akynzeo - so far bit of headache. I have metoclopramide as backup if needed. Having read threads here I also had 2L of fuid day before, again on Tuesday and yesterday. Plumps the veins and since it’s daily general health recommendation, I will continue anyway.
Had a meal when I got home and OK night except for insomnia (I’m not a great sleeper anyway so used to it) and hunger in the night. What I found that worked for me on Wednesday was frequent small meals / snacks. I ate every 2-3 hours. Again, probably dexamethasone but as soon as my stomach rumbled I ate, if I don’t eat I get queasy. I even have a bag of crisps on my bedside table in case I need them - other half might not like the crunching but hey …
Couple of other minor things (so far), eyes a bit sticky when I do sleep so using gel tears night and morning, and using a chapstick lots of times a day to help with dry mouth. I went for a 20 minute walk yesterday but also rested when i needed to - get those standby boxed sets downloaded!
Didn’t do cold cap. My attitude is if it’s a side effect necessary to beat cancer, so be it. That said, when I shave it off in a few weeks I might feel a different emotion. We’ll see.
Later today I start the GCSF injections. Co-codamol was recommended to me if needed for pain relief. We’ll see how it all unfolds over the coming days.
Sorry for the long post but hopefully somebody will find something useful.
I start my FEC chemo on April 11th and I am really anxious about feeling sick and being sick ! Sounds really silly but I just can’t handle vomit.
Hi all I’m joining your thread, chemo starts tomorrow. I was only diagnised on Thursday and 8 days later I’m having chemo so it’s still quite a shock, that’s if you ever get used to it! I feel scared that my health service are rushing me through because they think it’s really bad but I’m also relieved it it happening quickly. It’s just all the not knowing. At yesterday’s appt the doc said I would be having 3x fec them 3x T but later in the day my HER2 result came back positive sobshe said I’ll be having Herceptin which I think changes the treatment slightly but to be honest it’s all such a blur, I’m just going with the hope that they know what they are doing. Any tips, advice, comfort welcome. Best wishes to everybody else who finds themselves here xx
Hi Michelle
I’m glad you found us, and welcome to the thread.
You will get lots of support and advice here.
Don’t read too much into getting fast treatment… I think you’ve just been fortunate that your team our on the ball. Sometimes it can just be down to staffing levels.
Please read through the thread… There are some tips further down. And if you have any specific questions, just ask.
Hugs
Sue xx
Hi I start chemo on 18th April I’m having to have a pic man line in I’m more nervous about that than chemo.Anyone else had a line in
Hi wildshell I’ve a pickman (I’m from Jan thread) it’s fab. It didn’t hurt to put in. I sat upright on a trolley under a blanket with my arm out. He popped some local anaesthetic in and used an ultrasound probe to direct where it was going. It was very relaxed and easy. And I curl up to sleep and find it’s no problem.
I have tubigrip to cover it and have just bought some tattoo sleeves for when I want to wear a short sleeved top.
Honestly I am so glad I’ve got it. It makes the chemo much easier. I had one chemo through a cannula and the vein is knackered. I’ve got what they call cording in it. Dread to think what I’d be like have 8 without my picc
Xx
Hi Girls,
Starting chemo tomorrow April 9th, 3 cycles of FEC and 3 cycles of Docetaxel (Taxotere). It’s been 10 weeks since my surgery which seems a long time so I’ve been a bit worried about not having any treatment for this length of time.
I’m going to try the cold cap tomorrow but wondering if it could trigger neuralgia as I had Shingles in my eye, face and scalp after the surgery ( it is common to suffer from neuralgia after shingles). Anybody have any experience of shingles/cold cap combo?
Hi there all
I had my first chemo on Friday. I think I’m first for our thread so just thought I’d give you a brief rundown.
I spent Friday, Saturday and Sunday feeling quite tired but energy levels better today. I have also felt quite queasy at times haven’t actually been sick. Everyday I feel a little bit better and I am hoping this continues. The experience itself wasn’t too bad, I don’t dread going back anyway, although not looking forward to it obviously!
I haven’t had surgery yet or shingles but I did use the cold cap. To early to say if it has worked. Good luck to all having their first chemo this month, we are walking the path that thousands had tried before us and we can do this. Let’s all keep in touch and let each other know how we are getting on. I’m sure we will be an amazing support for each other xx
Good luck Sally, I will be thinking of you, I’m sure all will go fine. I’m sure you’ve read all this already but drink lots and lots of fluids, rest when you need to. Look forward to hearing from you when you’re up to it xx