Community Champion
Posts: 1,762
Registered: ‎19-08-2016

Re: April 2018 Chemo Starters

Hi PositivePants

Thank you for sharing. All advice is great.

Hope you are coping ok today.

Sue xx

Member
Posts: 4
Registered: ‎21-11-2017

Re: April 2018 Chemo Starters

Thank you ladies for all the tips, tomorrow is THE day
Member
Posts: 3
Registered: ‎05-04-2018

Re: April 2018 Chemo Starters

 Sorry Kentishhop again just blurted out my anxieties and didn’t even introduce myself! I am a bit of a techno dinosaur and have never been on a forum before!!

i was diagnosed in November and had a lumpectomy in December, unfortunately I did not get a clear margin so had another op in February. I feel I have been waiting ages for chemo but now the date has arrived I am very anxious. First fec-t is on April 11th. Would love to hear tips on surviving chemo. I have decided to shave off my hair after the first treatment ( many of my friends are horrified) as I feel this will allow me a bit of control as I don’t think I could handle it falling out in handfuls, also husband jokingly said he didn’t want to wake up with a beard!

I will also be having a Zometa infusion with first treatment.I would love to hear from others having same treatment.

wishing all you lovely ladies starting your treatment this month all the very best,

 

Member
Posts: 3
Registered: ‎05-04-2018

Re: April 2018 Chemo Starters

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.

Member
Posts: 1
Registered: ‎05-04-2018

Re: April 2018 Chemo Starters

[ Edited ]

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.

 

Member
Posts: 1,750
Registered: ‎21-06-2017

Re: April 2018 Chemo Starters

Hi NoahandWillsMummy, I'm from the Oct thread. I've finished chemo and now waiting to start radiotherapy. I teach in a school, 4-7 year olds and my oncologist wouldn't let me work during treatment (I'm still signed off) because of the risk of infection, so yours will probably say the same and I think you're right about not being at school during SATs anyway!

Hope your appointment goes well next Tuesday x

Community Champion
Posts: 1,762
Registered: ‎19-08-2016

Re: April 2018 Chemo Starters

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
Member
Posts: 18
Registered: ‎04-03-2018

Re: April 2018 Chemo Starters

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.
Highlighted
Member
Posts: 37
Registered: ‎10-03-2018

Re: April 2018 Chemo Starters

Thank you for this information, It is handy to have ideas of what to take, and more importantly what to expect
Member
Posts: 21
Registered: ‎06-03-2018

Re: April 2018 Chemo Starters

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
Member
Posts: 37
Registered: ‎10-03-2018

Re: April 2018 Chemo Starters

Thank you for all the helpful advice, I feel I am having the chemo with a group of friends

 

Member
Posts: 209
Registered: ‎11-01-2018

Re: April 2018 Chemo Starters

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
Member
Posts: 209
Registered: ‎11-01-2018

Re: April 2018 Chemo Starters

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
Member
Posts: 174
Registered: ‎03-04-2018

Re: April 2018 Chemo Starters

Thank you Whyte Fawn
Member
Posts: 174
Registered: ‎03-04-2018

Re: April 2018 Chemo Starters

Thank you Sue
Member
Posts: 75
Registered: ‎16-02-2018

Re: April 2018 Chemo Starters

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
Member
Posts: 209
Registered: ‎11-01-2018

Re: April 2018 Chemo Starters

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
Member
Posts: 4
Registered: ‎21-11-2017

Re: April 2018 Chemo Starters

Thank you for all the tips. I find this forum quite difficult to navigate so apologies to all x
Member
Posts: 688
Registered: ‎09-08-2017

Re: April 2018 Chemo Starters

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
Member
Posts: 209
Registered: ‎11-01-2018

Re: April 2018 Chemo Starters

Hello ladies, I’m from the December thread & just wanted to answer your cold cap questions Sally & Kath. I had a local recurrence in a short space of time. The first time I had 4 cycles of AC chemo & I was told by my unit the cold cap probably wouldn’t work so I didn’t use it. That chemo finished in January last year so when I had to start docetaxol & carboplatin in December I thought I’d use the cold cap. It does add extra time onto your chemo day. Depending on which chemo you have the cap goes on anything from an hour before & will need to stay on for up to 1.5hrs after the chemo has finished. I did keep most of my hair 😊 It will still shed, I finished chemo 6 weeks ago & it’s still shedding. The cap is very cold but after 10/20 minutes you do get used to it. It will feel very heavy & made me feel dizzy. My unit provided blankets but taking a scarf helped. Others say hot drinks but I found it hard to eat or drink with the cap on as it’s so tight. They say to say to wash your hair with tepid water & ph balanced shampoo with a jug, not the shower, no heat appliances. Also a silk pillowcase. Because my hair was still quite short & curly/messy from losing it, I gently used straighteners to try & make it look presentable & it was ok, although they say not to! It’s hard not being able to colour your roots & I found that as awful as the cold cap!! After losing my hair, I’m so pleased I used the cold cap this time. They do say the docetaxol is kinder to hair than the EC part.

I think someone said when do you start to feel ill. The sister in my unit says it follows a pattern & having been through it twice, it really does! Everyone is different with side effects but what you have the first time will generally follow on subsequent treatments. Good luck to you all xx