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April 2018 Chemo Starters

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Re: April 2018 Chemo Starters

Hi everyone chemo was Sat and feeling shivery and nauseous today. Took antisickness pill this morning. Guess it's just a question of drinking lots of fluids
Community Champion

Re: April 2018 Chemo Starters

Hi mustardandgrey
Welcome to the thread. By all means join in whenever you need to chat or want advice. It definitely is a good idea to prepare as much as possible.
I will start a May thread nearer the time.
Sue xx
Member

Re: April 2018 Chemo Starters

I think I'm going to be a May atarter, waiting for an oncologist appointment which I've been told will be
in about three weeks, so I'm watching this thread with interest as I'm very nervous about it.
Sarah xx
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Re: April 2018 Chemo Starters

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
Member

Re: April 2018 Chemo Starters

Hi  there,

Thanks is good to hear that all is going well. I am getting nervey, my first chemo is 11 tomorrow, .

Tell you more after. x?x

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Re: April 2018 Chemo Starters

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
Community Champion

Re: April 2018 Chemo Starters

Hi Saffyron

Welcome to the thread.

I was told that chemo needed to start within 12 weeks of surgery, so you are within the recommended time.

I can't help re. cold cap, as it's not something I did, but I'm sure someone will be along soon. If not, ask your chemo team before starting. You will still have some hair loss with the cold cap, so you need to weigh up what's best.

Best wishes

Sue xx

Member

Re: April 2018 Chemo Starters

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?

 

Community Champion

Re: April 2018 Chemo Starters

Hello lovely ladies,  just wanted to send you all my best wishes as you start your chemo.  I finished all active treatment in January (8 rounds of chemo, mx surgery, radiotherapy).  Its all doable and I hope I can show you a light at the end of the tunnel.  Here's my blog which offers lots of tips which I learned along the way:  http://lifeafterlola.blogspot.co.uk/  xxx

Member

Re: April 2018 Chemo Starters

JUST BEGIN TO PANIC. I have chemo on Tuesday ( 4 fec then 4 T). What comes next
Member

Re: April 2018 Chemo Starters

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
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Re: April 2018 Chemo Starters

Hi Wildshell I am from the January thread, I've not got a line and boy os it gun finding a vein each session but lots of the other ladies on our thread have and none seem to have had any issues. Feel free to pop in and ask any questions I'm sure one of the ladies would be more than happy to help if you have concerns xxx
Member

Re: April 2018 Chemo Starters

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
Member

Re: April 2018 Chemo Starters

Hi Kentish Hop, I'm from the Oct group and had FEC-T. You will be given anti-sickness tablets to bring home with you after chemo and if they don't work, the hospital can give you something else to help. I felt a little bit queasy a few times, but I wasn't sick at all, so hopefully you won't be either x

Member

Re: April 2018 Chemo Starters

Hi this is so nice and helpfu. Thank you from a nervouse ninny. The rollercoaster starts Tuesday, my first chemo (fec )
Member

Re: April 2018 Chemo Starters

Hi I've resisted the urge to shave , but have had a short pre chemo. Best wishes. I fec on Tuesday
Member

Re: April 2018 Chemo Starters

Thanks I think that does help , I will be able to say more after the first fec on tuesday.
Member

Re: April 2018 Chemo Starters

Hello all you lovely ladies that are joining the rollercoaster chemotherapy ride.  I have just popped over from the January chemo starters thread to say hi and to suggest you pop in and have a read as you will find loads of tips, reassurance, and also exciting stories of swimming, life rafts, toilet humour, romance in fact all life can be seen here, sharing the good times and the bad.  If you can be bothered to go right back to the start, you will see that we were very much having the same conversations as you are having now.

I am due my second T tomorrow (already had three Fec and one T) so the end of the chemo ride is in sight.  I had a dx mastectomy in Nov last year and my recon (if I decide to go ahead) will probably be late this year, early next year.  

I started my pre chemo big dose steroids today, which does make me slightly 🤪🤪🤪🤪 but have also been out for lunch with my two best girl friends, so I am feeling good.  I braved the shave very early on in my treatment and today, for the second time, I went out without hat,scarves or wig and it felt GREAT. 

If I can offer one piece of advice, it is that while waiting for chemo to start is scarey, personally I haven’t found it quite as bad as I thought it would be.  It is doable and even if it gets tough (and it can) remember that you are strong, and it absolutely does get better, especially with the support on here. 

Finally (I do tend to go on) Kentishhop, I am having Zometa in addition to the chemo.  I have only had one infusion so far (first was cancelled as I had had to have three teeth out) but I didn’t really notice anything over and above the usual side effects from Fec.  I understand that I have to have it for three years so my portacath will be with me for sometime to come.  

Dont forget to pop by ladies but if I don’t see you.......... the very best of luck and stay 💪 💪 💪 

Community Champion

Re: April 2018 Chemo Starters

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
Member

Re: April 2018 Chemo Starters

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
Community Champion

Re: April 2018 Chemo Starters

Hello Kentish hip

And welcome to the thread.

If you read through this thread, I've put some tips on here which helped me to survive chemo! I hope they help you too.

Please come and chat whenever you need.

Sue xx

Community Champion

Re: April 2018 Chemo Starters

Hi PositivePants

Thank you for sharing. All advice is great.

Hope you are coping ok today.

Sue xx

Member

Re: April 2018 Chemo Starters

Thank you ladies for all the tips, tomorrow is THE day
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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,

 

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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.

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Re: April 2018 Chemo Starters

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.

 

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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

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

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
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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
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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
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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

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
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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
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Re: April 2018 Chemo Starters

Thank you Whyte Fawn
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Re: April 2018 Chemo Starters

Thank you Sue
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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
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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
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Re: April 2018 Chemo Starters

Thank you for all the tips. I find this forum quite difficult to navigate so apologies to all x
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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
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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
Community Champion

Re: April 2018 Chemo Starters

Hi NoteRed
Sadly I think people don't really know what to say.
Please come and chat whenever you want..... There will always be someone here who knows how you feel.
Sue xx
Community Champion

Re: April 2018 Chemo Starters

Hi Kath
And welcome also to the thread.
I didn't cold cap, so can't help you there, but I'm sure someone will be along shortly. If not, there is a thread on the Chemotherapy section that might be worth a read.
Hugs
Sue xx
Community Champion

Re: April 2018 Chemo Starters

Afternoon Ladies
Apologies if my replies on not in order today and there is some repetition...... I was having problems posting and tried several times!!
I'm glad my advice got posted eventually!
Hugs xx
Member

Re: April 2018 Chemo Starters

Thank you Sue - its so nice to talk to someone who understands- today I was at work and I felt that everybody said "everything is gonna be fine " but no one looked me in the eyes...
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Re: April 2018 Chemo Starters

Hello,

 

I was diagnosed one month ago and I'm starting EC Chemo on April 19th. It's so good to see this forum and the support provided. Feeling much better after reading some posts. :-)

I'm going for the cold cap and wonder if there are any tips to take care of the hair between the cycles. I have read about washing hair only with room temperature water and also washing it only 2x week. Anything else?

 

Also read about the possible loss of sensitivity on the tips of fingers and toes so ice on those areas during chimo also advised. Does that make sense?

 

Thanks in advance! 

Love, Kath

Community Champion

Re: April 2018 Chemo Starters

Hi Sally and Gygi

Welcome to the thread.

I seem to be having problems posting today, so hopefully this goes on and I'll try a longer message later!

Hugs xx

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Re: April 2018 Chemo Starters

Hi everyone I've just found out starting chemo on Saturday 7th April. Thought I'd join you
Community Champion

Re: April 2018 Chemo Starters

Hi Sally sorry to see you are starting on the journey that so many of us have made!
Regarding the cold cap I can’t answer as I didn’t have it. However it does take longer and you do get cold I have seen ladies have it!
It’s hard to pinpoint exact times as we are all different. As a guide line my chemo took about 3 hours. Following the first one I was out about 4 times to the toilet in the night as they also wash saline through you before and after! I felt a bit tired the next day and a bit nauseous. This lasts for about 3-5 days and then you pick up and can function more normally!
Essentials water, magazine and or puzzle book maybe a snack.
Good luck you will soon be on your way and you it’s a relatively a short time in the grand scheme of things!
Member

Re: April 2018 Chemo Starters

I start chemo on 10th April, so now I'm at the what next stage?

 

How long does the chemo take to adminster?

If I have the cold cap, do you get cold? ia it worth having scarf and gloves with me?

How long after the chemo do you start to feel Ill, ?

What are the esensials to bring to chemo sessions.

 

 Thank you  Sally