June 2020 chemo starters

[ann has cancer]

Hi Iam477, I am astonished you are still working, well done you and I can only see a pretty lady in your pic so unlikely to scare anyone.  I am not as brave as you, I have just let it all fall out leaving me with about 10%, I sent my wig back and bought a bucket hat which covers all for hospital visits.  Love aNN

[Jo77]

Good morning 🌅cactus queen and everyone else ! Hope your all feeling ok today ? 

I had my second cycle of Fec on Friday , my veins collapsed after the first tube of poison this week and now have to have a PICC line put in in a few weeks 😣 I’m absolutely dreading it , I can’t watch any of my treatment .., I hate needles. Wondering how anyone else is finding it ?

I’m am using the cold cap 🥶 but have had rather alot of hair coming out over the past 5 days and gone rather thin , but not too noticeable.... just praying it stops. Anyone else the same or is it working better ?

Ive had bad feeling of nausea after both treatments which have lasted 24/48 hours and generally off my favourite foods but not too bad . Have a pleasant day ladies x

[ann has cancer]

Hi Tara, I know nothing about children but I did wonder whether your stepson after being rejected by his Mum was worried about loosing you to cancer.

[ann has cancer]

It shows off your face beautifully, I thought you said you were going grey?  Lovely strong features, you don't need a wig.

[CactusQueen]

Good morning everyone 

I’ve been awake since four o’clock listening to the crazy stormy weather. I’ve just read all the posts from yesterday, all so very thought provoking. I also have found myself thinking in a positive way about relatives who are now longer around. I thought I was going a bit crazy, now I know it’s normal. I’m definitely going to think about my grandma when I have my next chemo on the 15th.

Cecilia, I wonder why they want you to have a PICC line now so far into your treatment. I had mine at the beginning with very little information as to what it was. I was just told I was having it. When I went to have it fitted the doctor took time to explain it to me, and then asked if I wanted it. It felt good to be in control. It is useful to have for blood tests and to administer chemo. I bought a Limbo protector to wear in the shower as it can’t get wet.

I’ve lost track who is using a cold cap for their treatment. If you are how was your hair loss after the chemo session? 
Have a good day everyone.

 Love CactusQueen 

[lam477]

Thank you horseylass but I think I look like an alien.  I’m slightly confused as well..... I’m naturally a ginger so no idea why the little bit of stubble is black 🤔🤔

im sure you will rock the bald look when it happens, others see something completely different to what we see ourselves xx

[Horseylass]

I have to say ladies that I think you are both rocking the bald look. I think you both look beautiful. 👍🏻👍🏻👍🏻
I’m still convinced I’m going to look like an alien. 🤣🤣

Sleep well everyone. xx

[lam477]

Oh I don’t know how to turn the picture 🤔 it’s scary I now look like my brother lol 😂.
well my brother and his lot came over tonight and I didn’t scare them away 🤣. Let’s see what the office staff think on Monday 😬

xx 

[cecilia]

Evening ladies good evening ladies

 Hope that you're all well I've been booked in for a picc line on the 15th of July 

 I'm thinking of declining it only because I'm a bit worried about it

And as from the 15th I only have three chemo section to go so I'm not sure if it's actually worth it 

it's so true about how cold your head gets without hair on it

I'm having to wear a hat to bed and my head is so prickly 

i'm slowly getting used to my alien hea

It is such a shame that we don't all live near each other and I'm sorry I don't get to write as often as most people it's only because I don't know what to say

I have been very lucky to be sick but from the very first chemo session I had-

And this is nowFirst cutbut stay positive everyone 

[Horseylass]

No I didn’t go for the cold cap.i really didn’t want each session lasting longer than necessary and I just didn’t really fancy it. I think it’s just hanging on in there for now. 
For those with cold heads in bed, I have got some of the sleep caps as I was warned my head would get cold. Hats4heads had them. 

It is really nice to have this space to talk to people who understand what we each are going through, I agree. I like the point about us all being on different treatments as they know so much about our respective cancers. That does make you feel like we are getting the best that is available to us. 

Keep smiling ladies, we’re beating this awful thing one horrid chemo at a time!

xxxx

[ttyler]

Hi Anna,

I am also sorry to hear that you were sick. I have emend to take for the two days after chemo and steroids 3 times a day. I also have domperidone not sure that is spelt correctly. I take these 3 times a day if I feel sick.

 It can be hard with the children. My hubby is here but he too works so you are doing a fab job! My two are oblivious to how I feel and still have their arguments etc. Just shows we are doing a good job at keeping things as normal as possible. My 18 year old step son is the worse. Very mouthy and he has just got himself a 24 year old girlfriend which has been a challenge. He disappears off and is not back when he says he will be so I worry he might have had an accident on his moped. My husband has told me to lock him out now, but I won’t do that. He also speaks to his girlfriend til 2 in the morning and it keeps me awake. Although we had to have a heart to heart on Thursday because he was sacked from work due to being tired in the job. He had a lot of issues from his mum abandoning him at 9. She did not want him only his sister. He does not have much respect for women. Feel like I do all I can for him and he could be a bit more courteous. But hey ho. Like I said things can’t seem too much different to them or they would behave more should we say?

 I am so glad we have each other and can share our problems and experiences whenever we like. I have made some lovely friends on here. 

thank you all

 Tara xxx

[Anna45Anna]

Hi Lam, I did speak to the chemo helpline about the nausea although it was about 5am one morning when I couldn’t stop being sick - so it was a team covering overnights. They changed the anti nausea meds and it got better, but I think next time they will probably give me more up front. 

It will be fine 😛

[Anna45Anna]

Take care, Tabs, and be nice to yourself - those days are hard ones in my limited experience. 

[Tabs]

Well done for keeping going Anna, that sounds like a really hard week with the picc line and the kids but it sounds like you're on the other side. I'm on day 6 of cycle 2, a bit tired, woozy and sore but just trying to keep my head down and hope that this will be the worst of it for this cycle. I'm looking forward to being half way through my EC. It's a big comfort to know we've got each other for support on this journey. 

[lam477]

Anna45anna sorry that you have been feeling so unwell.  Did you speak to your oncology team about the sickness?  Glad to hear that you are feeling better though.  I know what you mean about the exhaustion of parenting and I’ve got my hubby to help.  He’s at work during the day so it’s all down to me, they have been good but my daughter who’s 14 had the attitude and it’s exhausting.

haha Tara it’s just like brain freeze isn’t it 😂. Maybe we will get used to the cold or I hope so anyway. 

ive got my brother and sister in law and their kids coming over tonight for an hour and it will be the first time they have seen me bold, let’s hope I don’t scare the kids 😂 xx

[Anna45Anna]

Hello Lam, Tara and others,

I’m checking back in on day 12 here. Feeling heaps better after a rotten first week. After 5 days of nausea and vomiting, I got a clot in my Picc line so was in and out to hospital last Monday and Tuesday and now taking Clexane injections each night for 6 months. But since then I’m feeling well and it’s amazing how some days of feeling well helps even mentally to get you strong for round 2. There were days early in round 1 when I just felt so lost and miserable - and it’s nice that it lifts and life can feel normal again. 

I’m a single Mum to 3 children (10-14 years) so they went to my in-laws for the first week till we saw how I got on with first round. They’ve been home with me since Wednesday and although they care about me I have to say the parenting can be hard going - I lost my temper over screen time on Thursday and almost collapsed with the instant physical effect of stress on the body. So I’m taking help from anyone who offers and sometimes just get into bed and forget about it all. Today I have just one child at home and that’s quite manageable 😀

I've marked the calendar with the 5 further chemo dates and will be a bit gutted if any dates have to slip - but apparently it can be common enough to have to wait a week or two for example  because bloods don’t come back to normal in time? 

At day 12 my hair is hanging on strong. I kept giving it a tug at the back but so far all there. I had long hair so got 12” cut and donated it, so now I have a short style for another few days. I’ve been practicing with beanies from AnnaBandana, in my favourite colours and that feels good. Not comfortable with my wig yet - felt really ill on the day I chose it and hope I didn’t make a mistake! 

Long message 😖 Take Care, all. 

[ttyler]

Hi lam,

You are not being morbid at all it’s just nice to feel close to people when we are feeling poorly ourselves. I totally get it!

I too gave my hat on at the moment as my head goes cold. It’s like you have brain freeze when you get out of the shower 😝 I sometimes wear it to bed but have to be careful my head dies not get too hot. Sometimes when I lie my head on the pillow it is like stinging nettles. Mind you I think silk pillow cases are supposed to help. 

 I had a chemo pack off a  local charity called ‘balls to cancer’. In that there is a gel pillow in there as well as other goodies such as a disabled toilet key, not that we can use it at the moment and am travel sick hands. I might try the pillow later!

 Tara xx

[lam477]

I’m the same my hair started coming out about day 10/11 but day 15 I had a couple of patches so took the plunge in shaving it off.

i totally understand what you said Tara about getting support from people who are no longer with us.  We lost my father in law at Christmas through pancreatic cancer, when we had him cremated I had some of the ashes made into a pandora charm (sorry if that’s morbid) but I wore my bracelet when I went for the chemo and took comfort in knowing he was there with me and looking after me.  We were really close when he was alive.

I can’t wait to feel back like myself after all the chemo then radiotherapy but as hard as it is at the moment we are all having this treatment for the right reasons so we can actually still be here.

im feeling the cold with this shaved head and sat in my living room with a woolly hat on lol 😂 kids find it amusing 😂

xx

[ttyler]

Hi 

Horseylass, did you cold cap? Because if you did you may not have any hair loss. Mine started to come out bad at day 14. Like other said I suppose at least we know the chemo is working.

 Lam, it would be nice if we could all live around the corner from each other wouldn’t it? It would be lovely to meet up for a cuppa and even something stronger when we are over this 😝 

 I totally understand what you mean about people not really knowing how you feel. People care so they have nice things to say to encourage us, but until your body feels it you realise that all you have ever been to people that have had cancer is a person of kind, positive words. I said to my mum the other day I don’t think I have had it too bad, especially not as bad as my Nan 26 years ago but I wonder how long it will take after the treatment for me to feel like me again. 

 I tend to work myself up before treatment which doesn’t help. On Thursday when I had my 2nd round it was 12 months to the day that my mums partner had a brain bleed and died at the age of 57. I was really dreading going to chemo Thursday but asked my mums partner to hold my hand in my mind and this really helped. It was not too bad. I know everyone has their own beliefs and I do not go to church and do not think that I am highly religious but I feel comfort in knowing I have the support of people dead and alive.

 Sorry to be morbid but what I am trying to say is that if we grab strength from wherever we can get it we will get through this. You ladies are give me so much positivity and I truly thank you for this!

 Tara xxx

[lam477]

Ann you are so right about the support this group gives.  I don’t know about anyone else but I try not always very well but I try to put on a brave face for everyone and stay strong but in here you can be completely honest as like you say we are all in the same boat.

Don’t get me wrong my husband, kids and brother and sister in law have all been amazing and I couldn’t of got though it without them but like they have said they can only try and understand.

thank you to all of you lovely ladies for your support and encouragement through all of this.  Shame we don’t all live down the road from one another we could of all had a socially distanced cup of tea 😊 

xx

[ann has cancer]

The family situation makes you realise the support that this group offers.  Here we can be completely honest and we all understand, anyone who has not been through this cannot understand.  What is also facinating is that we all have breast cancer but we are all getting different regimes for treatment, shows how much they know about our cancers.

Keep strong girls and no matter how trivial, keep posting when you can please.

Love aNN

[Horseylass]

Hi ladies,

Sorry, I’ve been quiet too. 
Tara, so sorry that you’ve had nausea again.

I haven’t yet got to the hair loss stage but I’m only on day 12 of my first cycle. I am thinking about getting my husband to shave it off before it starts falling out just to make it easier. As someone said earlier on this thread, I think, at least you know your chemo is working. 
I don’t really know how I feel about it, I’ll let you know!

Gosh Ann, 2 days in a row. I suppose at least it gets you through it quicker. I am finding that the time is dragging until my next cycle.

Much cooler weather here too which does make life easier on the whole but a little warmer would be nice. It is July after all!

Enjoy your weekend ladies. xxx

[ttyler]

Hi Ann and Lam,

Sorry I have not posted until today my head goes a little fuzzy after chemo and I find it hard to look at screen on phone. Hope you are okay Ann? It has been quiet in here hasn’t it?

 Lam, it is hard when you have to shave off your hair. For me it was a relief because it just kept falling out and it was so hot on the day I did it I couldn’t stand it anymore. My husband was reluctant to do it as he thought I might cry. We have a funny relationship though and always tease each other so he laughed at me like he does and that mad me feel better. He said I look like my grandad Barry and calls me big, bad Baz now 😝, however I can appreciate how it may have upset you. But remember it will grow back. It’s just hair! In the grand scheme of things it’s small with how strong you are being with your fight! You go girl x

 My dad just came over to drop off my birthday cards and he said he would not be able to go through the treatment that I am. I told him I want to live so this is what I do. I sent my auntie a picture of my shaved head and it upset her my dad said. She has not spoken to me since the text but that is her problem not mine. I just wanted to let people see I’m good and feeling quite alright. I can do this! It is nice that you have your sister for support and I’m glad you feel you can chat to her.

 Hope everyone else is feeling okay. 

 Tara xx

[lam477]

Hello everyone.  Tara hope the sickness passes for you.  I’m due my second round on Thursday and I’m dreading it with how sick I felt before.

i had to take them plunge and shave my hair last night, more and more was coming out everyday and I kept letting upset, then I found two bold patches and typically they were right at the front so couldn’t hide them.  I sobbed like a baby when hubby was doing it.  (Think he had a little tear as well behind my back).  Still a bit emotional today especially when my sister told me she’d been crying for me as she felt hopeless and there was nothing that she could do (she doesn’t realise how much she is helping just having a cuppa and chat)

hope everyone is ok xx 

[ann has cancer]

Gosh I thought I had left the group by mistake, nice to hear from you Tara.  I finished my 3 x EC last week and start a new chemo next Thursday, 2 days in a row that should be fun!!!!!

[ttyler]

Hi ladies,

Hope everyone is feeling okay today.

 I had my second round of fec Thursday. Side effects not too bad just feel a little nauseous, but sick meds seem to be keeping it at bay.

Think my eyebrows are coming out now as my mum said they looked like they are thinner this morning. Not too worried though as I h Ac be big bushy ones normally 😝  

 I have got a slight rah on both arms, little round brownish dots that look dry. I have a similar rash in my belly and have had this before when I have been away on holiday. It looks like a sweat rash. I have no temp but will ring the unit to find out what it might be to see if I need some cream.

The weather here is much cooler but it seems to help when it is cooler especially with sleep.

 Have a good day all

Tara xxx

[Tabs]

Hi Susan, 

• That's interesting about the brows, do you use the drops before you lose them, once you've lost them or after the last chemo cycle? My friend who went through chemo in December said to get them microbladed before treatment but that wasn't an option as all the salons are still closed. I just picked up a synthetic wig from the hospital over lunch so that I've got it for zoom meetings when my bloods are low next week if my hair keeps coming out at the same rate. Outside, I think I'll probably just use a scarf rather then the wig to protect it from the sun. Having had long blonde hair, I thought I'd fork out for a similar natural one but they take a lot more styling and looking after than synthetic ones and I was rubbish at looking after my old real hair and I've got clothes moths in my flat so they'd probably have the wig for midnight snacks. Your wig looks lovely though Tara, really natural. I ended up getting a really short one that goes tight to the nape of the neck which feels really nice. The wig consultant at the hospital was really helpful. When we ordered the first three to try, one long, one bob and one short, I hadn't had my real hair cut short, so none of the wigs felt short enough and I hadn't trusted her on the colours of the shorter ones so she ordered 2 shorter ones in. This one was £74.40 with NHS discount. It was a Raquel Welsch one and is quite a good compromise. I may buy the other one that's slightly neater in 4-5 months when I'm allowed to get another discounted one. I've got a pink Lazytown Stephanie wig somewhere in the kids dressing up stuff along with an orange plaited Pippi Longstocking one. I'll have to dig the lipsticks out too. Tabs

[ttyler]

Hi Jo,

You really are welcome. 

 I have my 2nd chemo tomorrow. I chose not to wear the cold cap so knew it would come out. Sorry it has not worked for you.

 Good luck for Friday.

 Tara xxx

[cubot]

Hello lovely ladies

I'm totally on the 'balding is beautiful' bandwagon too - I only put a scarf on to leave the house. Though recently with the rainy weather I've had to put a beanie on to keep my head warm, I know it sounds stupid but hadn't realised how warm hair keeps you until now 🤣 My best friend sent me six amazing lipsticks so I've been wearing a different one each day for a small glam/silliness boost (today's is 'crushed rubies' and it's INTENSE! 💄). Obviously only works at home because lipstick + mask = mess...

I'm day 6 after second cycle of FEC and although I was much pukier on the day of chemo this time the side effects seem to have passed quicker. Not sure whether it's a physical thing or the emotional aspect of knowing what to expect that makes it better. But anyone who's worried about their second round of chemo I can honestly say this time has been much better for me, I didn't need to nap and the nausea/achiness has been less - hopefully will be better for you too 😊

I know this is a chemo thread but for anyone who's thinking about not having a reconstruction/waiting for a delayed reconstruction I was told about this charity https://www.knittedknockersuk.com/ who knit you your own fake boob for free! They're not currently taking orders due to COVID but I've emailed to ask when they think they might start. I also found this new company who I don't think have entered production yet but their stuff looks cool too: https://www.wewearboost.com/ I never thought I'd get so excited about different colour fake boobs but...here we are 😂

Tara, hope your chemo goes well tomorrow (and ❤️💙💛 the styling on your wig!) and hope everyone else is doing OK and feeling as well as you can. xxx

[Jo77]

Thankyou Tara !

My hairs started to come out .... only had 1 chemo .... and used the cold cap .... 2nd session Friday . I have got a wigready  “ in case “, but looks like il need it !

I got it from Trendco, But through the hospital but I’m not entirely happy with it. It’s shorter than my hair , darker and just doesn’t look right but I saw the photo of yours and it looks just like my hair , so il look into getting one of those ... thanks for the info and all the best through your journey x

[Susanmanchester]

You may not lose all your hair I did not I kept about 50 percent didn’t even notice it thinning was v gradual -  it just didn’t replenish after 12 sessions however there was still enough to cover up so do not lose hope.Eyelashes and eyebrows is a downer though make sure to get drops from pharmacy - your hair will recover ! Mine thicker than it was year down line x ps never had to wear my wig returned it to hospital 

[ttyler]

Hi Jo,

I live in the Midlands so typed into the internet wig suppliers In Birmingham as this is my closest city. Trendco is where I had it from. If you type in Trendco wigs Birmingham the website will come up. A lovely lady called Julie did a WhatsApp call with me to see if real hair would suit me and also to recommend wigs that best match your hair. You will have to measure your head yourself but she will tell you how to do it, that is if they are not open now and you could visit if you live nearby. I had the diamond wig, in ash blonde. It was much longer when it came I’ll send pics to show you and after 2 cuts from my hair dresser I have it how I want it. They are happy to cut it for you if you want it like your hair but my best friend does mine so I wanted her to do it. Also my friend found it easier to cut it whilst on my head.

 Ladies the synthetic hair wigs don’t always look like Barbie hair, infact I have one of these on order from the hospital supplier. My friend that I met at chemo has a synthetic one and it looks real, honestly. I have a thing about my hair and panicked when I knew I was going to loose it so my husband got me one. To be honest I am sat here now with my bald head and only wear the wig when I go to shops or appointments. I do my daily exercise with just my cap on.

 Let me know if you need any more info  

Tara 😘 

[Jo77]

Hi , Could you tell me where you got this wig, name of style and colour ? 
I got a wig a few weeks ago but I’m not happy with it and this one looks good x

[CactusQueen]

Dear ladies

A very belated Happy Birthday to Horseylass and welcome to anyone new.

Ive been reading all the posts since my first round on the 23rd, thanks for keeping me going.

I survived the cold cap, the first 10 minutes was the worst. I kept my eyes closed for half an hour and concentrated on breathing. I had EC injected through a PICC which took about half an hour. Then another 90 minutes of cold cap. Next time I will take pain killers when I get home as I had a headache and was a bit sick. The nurse told me that anti sickness tablet she gave should last for three days so I suffered through the first day feeling awful before I rang the helpline who said take them three times a day. The weather has been crazy this week, first it was absolutely boiling which I can’t cope with, then we had torrential rain. I haven’t had much fresh air so need a walk. The highlight of the week was the district nurse visit who came yesterday to check the PICC line! Lol. I was so looking forward to seeing someone different. She brought a student with her so I got to talk to two people-yay!

I ordered a wig yesterday as I know I will loose my hair even with the cold cap. I thought it would take up to 14 days but it’s coming today! I know it’s going to look like cheap shiny dolls hair. Tara your wig is beautiful.

Take care

CactusQueen x

[ttyler]

Morning ladies,

 My gosh I have been so tired today only just getting up. Every time I have tried to get up I drop off and wake myself up 10 minutes later snoring. I think I’ll get up in a minute but drop off again lol. I’m exhausted and have round 2 tomorrow lol 😆 

Lam, my wig was from the diamond collection. They are the longer real hair ones I think amber is shorter.

 Claire, I had spits in my hairline like teenage spots I put sudocream on them. I also got instead bites on my bum and without being too crude one on the lip of my lady parts. They were really itchy. Rang the unit and they told me to keep an eye on temp and if they filled with puss to go in. I was also told to take piriton. As it was they went down after a couple of days no puss or high temp. Nurse said they must have been gnat bites or spots. I also put sudocrram on these.

 Hope everyone manages to feel well throughout the day today. 

take care, love 💕 Tara xxx

[lam477]

Tara it shows you get what you pay for with the wigs, mine were cheap ones and you can tell.  I will have a look at the company you got yours from.

claire I’ve got spots as well but at the minute only on my face, I’ve never suffered with spots so feel like a teenager now.  I’ve got one just on my lip line and now my lip is really swollen 😢 at least I think it’s a spot.  

horseylass I hope you enjoyed your walk, it’s raining here at the moment so my doggy will just have to wait for now.

love to everyone x

[Horseylass]

Tara the wig looks great. 

Claire, mine are just on my face for now and seem to be normal spots. If I were you I’d ring your team just for advice. I was told that there was nothing too small to ring them about and that it would never be wrong to call. 

Just had another lovely walk with my dogs. 

Have a good day ladies. xx

[CDLucy]

Thank you all for your lovely responses and guidance. 

Tara the wig looks amazing. I have an appointment next Tuesday to go and find one. I'm hoping my hair holds out until then !! 

About spots !! I've never suffered from spots but I have now got loads . Around my hairline , on my face , shoulders and this morning on my back. Should I ring the team ?  It sèems such a minor thing to call for . I keep putting sudocreme on them but some of them are quite sore . 

Still feeling ok and legs seem to be getting better . Hoping it lasts !! 

Claire xx

[ttyler]

Hi lam, 

I brought the wig from Trendco online. The lady Julie did a video call on WhatsApp to help with the fitting. It was £408 as it is real hair but well worth it.  When I got It, it was really long so my hairdresser cut it without it on my head the best she could during lockdown, but it annoyed me today when I wore it to my blood test. I thought it was too heavy and I could not get it to fall right so I went to my hairdressers house. She is my best friend and I got her to cut it whilst on my head. She put the plait in the front to hold the hair off my face. It is so much better and feels better on my head. I made sure I used sanitiser and got changed as soon as I got home.

 I have a free wig coming from the hospital, but this is not real hair although I have to say the ladies on the unit that have had wigs from the same place look great and you can’t tell it’s not real hair. I just panic brought the one I have because I can’t collect the one from the hospital until the 22nd July. When I was first diagnosed everywhere was shut and I did not think I would cope without one, although I quite like being bald and just wearing my cap. This is a nice style too.

 Tara xxx

[lam477]

Tara the wig looks amazing you can’t tell it’s a wig.  Where did you get it from? As I said mine were awful the kids and husband nearly wet themselves laughing at me 😂 xx

[ttyler]

 

[ttyler]

Hi Claire,

I’m Tara, welcome to the train.

Like the other ladies have said drink plenty and contact your team with any issues even the tiniest as they will often be able to sort them.
 I am on FEC-T 6 rounds, due my 2nd round in Thursday. Had my bloods done today so fingers crossed all will be okay.

 It is brilliant you weren’t sick. I felt sick but luckily was not sick.

 We are all here to support one another and get each other through. Together we will do this 💪

 oh ladies I had my wig on for half an hour today and it was so heavy and I could not see in front me. I took it to my hairdresser tonight and got it cut differently. Feels so much better and more like me.

 Hope everyone sleeps well!

 Tara x

[Horseylass]

I’ve not had any injections either and I’m on EC. Perhaps it depends on your pre chemo blood results? I’m not sure what the injections are soo don’t really know. 

[Tabs]

Hi Claire, 

I'm sure you'd have been given the syringes to self injected if you were meant to. Maybe you'll get them when you move on to EC. That's brilliant about your lack of nausea even without the medication, it sounds like you're doing really well. Check with your consultant when you move on to EC as it may be that nausea is more likely with EC, I think hair loss is more common with epirubicin too.

Stay well! Tabs 

[Horseylass]

Hi Claire,

Welcome to our little gang. Sorry that you find yourself here too. 

I had my first cycle of EC on 23rd June and am having 6 cycles of EC. I had surgery, lumpectomy, breast reduction and axillary node clearance at the beginning of May. I’m having radiotherapy after the chemo and a reduction on the other side after that. 
I too have been ok so far. I had a little nausea but the tablets have helped I’ve also had some heartburn but not badly so. I’ve been tired and tried to have a half hour nap on an afternoon and trying to walk and get as much fresh air as possible too. 
I have noticed that I seem to have come out in spots over the last couple of days too, so I look a bit like a teenager! I’ve not lost my hair yet but it won’t be long I don’t think.

The hydration is really important, I’m trying to drink 2+litres of fluid a day and keep checking by doing the skin pinch test on my hand. I’ve also started taking a teaspoon of manuka honey everyday. 
I was also told not to take paracetamol if I think my temperature is going up.  
I can’t think of anything else except we’re all on similar journeys and are all here to help and support each other and it is nice to have others who get what we are going through. 

[lam477]

Hi claire

welcome to the group, I’m having 6 rounds of FEC so different to what you are having.  I had my first round on 18th and due my next one on 9th July.  
All I can say is make sure you drink plenty and rest when you need to.  I was really sicky after the first round and the ladies in this forum were all amazing and told me to speak to my oncology team and they have agreed to alter my anti sickness meds so fingers crossed for next time.

I wasn’t given injections and asked and not everyone is given them so don’t worry 😉 

i hope it all goes well for you 

Leanne xx 

[CDLucy]

Hi Tabs 

Thank you for the info . 

I've been drinking loads of water ( I usually do anyway as I was a runner ) and I'm sure it's helping . 

I haven't been given injections to give myself . Is this normal procedure ? I was given anti sickness tablets and told to take them if needed but as of yet I haven't felt sick at all . I'm really surprised how well I've felt . 

I've been having baths with Epsom salts to ease pains in my legs , my nurse said this was ok . Again I used these before anyway due to running . 

I decided in the beginning not to have reconstruction. It wasn't an option at first because of Covid but then they offered me partial before my op but I declined . I wanted to be in and out of hospital in a day , which I was . 

Thanks for your response 

Claire 

[Tabs]

Hi Claire, 

I had my second cycle of EC yesterday, I move on to 3 months of paclitacel at the beginning of September and then like you radio and tamoxifen or some equivalent and hopefully some surgery to adjust my wonkiness. I've gone full circle from wanting both breasts off on diagnosis to reconstruction on the right side which was changed to implant because of covid and then full mastectomy and being distraught about losing my nipple and skin and desperate for reconstruction (and tummy tuck) to now just wanting my left breast off to match. I'll probably change mind again though. With regards to your chemo you may be better talking to the other girls on paclitaxel but I think the one thing we all agree on is drinking lots of water and taking the full course of anti sickness medication. I've also recommended regular gargling with salt water as that was the solution for the sore throat that I developed on day 4. Soaking my bottom in salt water in Bath, bidet or clean washing up bowl also worked for me from day 5. I think it's really important to get outside in the morning, even for just 20 minutes in a mask with a friend in case you unexpectedly need help. Your body will tell you when it wants to lie down. One final tips that I got from my consultant last week is to take a paracetamol (if you're not allergic) an hour before you self inject yourself with the thing beginning with f that helps the white blood counts not dip too low. Apparently it's common for it to cause a temperature. Nb. When I called the hospital on day 6 because I had a sore throat and 6 hours of a slight temperature (37.6°C) they said not to take paracetamol as it would mask the symptoms if I did have an infection as I wouldn't know if my temperature would have carried on increasing otherwise if that makes sense). Feel free to set me straight on anything I've said or add anything, especially if you've got Nb-paclitaxel experience. Good luck, it's much better once you've got a cycle under your belt. I was pretty much OK from days 8-21 if that gives you something to look forward to. Tabs

[CDLucy]

Hi everyone .

I'm Claire and I had my first chemo on 26th June so unsure if I should join this thread or the July one ??

I was diagnosed late April with invasive ductal and lymph node spread. I had a single mastectomy in late May and full node clearance. The results came back as 35mm invasive ductal along with 30mm DCIS ( non travelling ) , 18 lymph nodes removed and 2 cancerous , Grade 3 .

I'm having 6 rounds of chemo . 3 Nab-paclitaxel (Abraxane) , 3 EC. Then radio and Tamoxifen . 

I had my first one last Friday and so far feel ok , just quite a bit of tenderness/pain in my legs which my nurse told me to manage with paracetamol/ibuprofen . I'm not getting too confident as I'm expecting it to hit me anytime. Any advice greatly received . 

Thanks

Claire 

[ttyler]

Morning Tabs,

 The hair is a pain but your right it does show the chemo is working.

 I do hope everything goes well for you today I am with you all the way. Please do take everything the give I do. It seemed to work well for me last time.

 Sending lots of strength and love 💓  
 

 Tara xxx