October 2019 chemo starters

[Shi]

❤️Mai7, May17 and july17 threads guided us through back in oct17 as you will do to threads that follow you ❤️❤️ mai7, blog is amazing please read it ❤️ good luck today anyone who’s jumping in the boat with aj, get your par ready 👍💕💕✨✨Shi xx

[Mai7]

Glad we have a few of you helping each other now.  Shi was an Oct 17 starter and has lots of good tips as she was looked after by our May 17 starters.    I created a blog to share.  It has all of the tips we gathered so I wouldn’t have to keep saying the same thing over again.  Here it is if you want any suggestions for chemo prep: http://lifeafterlola.com/

Hope all goes well.  Just take it one step at a time.  You can do this. I had 8 rounds of chemo and I’m still here! Just be vigilant with your temperature and don’t hesitate to call the chemo helpline at your hospital if it spikes.

[Jencat]

Thinking of you all as you start chemo, I was in the Oct'17 group with Shi. One thing that I found that worked for me was wearing the travel sickness bands during chemo and for a few days afterwards x

[Shi]

Aj 👍 you’ve jumped in front seat of the boat for the Oct 19 crew, who’s next jumping in with aj 👍 bit of old Hawaii 5 O theme tune playing in the boat, oars at the ready 👍 Drink lots of water, keep vigilant, ring your units if you don’t feel right even with no temp 👍 rest when your body tells you to and anyone still with rapunzel tresses, think about donating your hair to little princes trust they make wigs for children ❤️❤️ 💕💕✨✨Shi xx

[Rubyblue2]

Hi Purpletrunks, my login wouldn't work this morning so I'm now Rubyblue2! 

My daughters are 10 and 7 so pretty much the same as you 🙂

[aj72]

Hi Everyone

So had first FEC today.  Had to wait an hour or so over appointment time but once we got started it was fine.  Saline drip whilst waiting for the anti sickness meds to kick in. Then 3 syringes of a pretty red drug then 2 of a milky substance and then a drip bag of the third drug for 30 minutes finished off with a 10 minute saline flush.  Altogether about 2 hours. 

When the drugs were syringed in I could feel the liquid go up my arm - it was just a cold feeling tho not painful in any way. 

Left then hospital and went to the pub for tea. 😀

All in all it it wasn’t a bad experience and the staff were lovely but as we know it’s the side effects rather than the actual infusion.  So bring it on let’s get this October party started. Hair loss will commence in around 2 weeks time but I’ve made the decision to shave off my ‘mum bob’ much to my daughter’s delight and she can’t wait to do it 🤣🤣🤣. 

I feel fine although a little tired but it has been a long day of sitting around and waiting. Off to bed now - let’s see what tomorrow brings !!!!

Goodnight and good luck October ladies. I’ll check in again tomorrow - we’ve got this

💪💪💪💪

[Purpletrunks]

Weds 0915. Nerves are getting up, but I just want to get on with it  

---

@julesintheweald wrote:

Hi Lou

when do start your treatment?

best wishes

jukes

x

---

[julesintheweald]

Hi Lou

when do start your treatment?

best wishes

jukes

x

[Purpletrunks]

Hi Rubyblue,

I'm 41 with two kids two. Mine are 8 and 10 ... how old are your daughters?

[Rubyblue]

Hi. I'm 41 with 2 young daughters and was diagnosed with IDC at the start of August after finding a small lump- it's ER+ PR+ HER2- . I had surgery at the start of September and although it was only small was found to be in my sentinel lymph node so I need the full works of treatment starting with chemo- no date yet but my appointment with the oncologist is next week. Dreading chemo I have to say with fear of the unknown I think as much as anything but I've been reading up on lots of tips from other threads on products to use for nails etc and started buying a couple of bits. Got an appointment for a wig fitting at the end of the week to make sure I'm prepared xx

[julesintheweald]

Hiya !

good luck with your treatment today I am starting tomorrow with the targeted drugs and the chemotherapy on Wednesday I am apprehensive but just want it to happen now so we get this gone.  

I am am going to try the cold cap but if too uncomfortable I am going to embrace my bald head. I have the wig lady coming round this pm to discuss one but I have ordered some nice beanies & scarfs.

lets kick this ladies ! 

Jules

xx

[aj72]

---

@Purpletrunks wrote:

Good luck for tomorrow Amanda, let us know how it goes 😊😊😘

---

---

@Purpletrunks wrote:

Good luck for tomorrow Amanda, let us know how it goes 😊😊😘

---

Thanks Lou 

Had a busy weekend disinfecting the house to try and lower infection risk. 

Hubby and I went for a ‘new patient’ chat at the chemo unit on Friday and all went well. Nurses were lovely.  Room was very relaxed and patients who were having treatment seemed unfazed by it all. 

I’m starting to feel nervous but more about the side effects than the treatment.  Just wish the first one was over so I know what to expect next time.  

I’ll report back tomorrow evening and Tuesday to let you know if I’m beginning to experience anything strange 🤣

Good luck ladies. We’ve got this 💪💪💪

[ClaireL]

Good luck everyone else here too. 

Just for those who night already know, how do you even go about getting a wig? I'm trying the cold cap but my hair is fine and falls out anyway so I'm not holding out much hope! 

[Jencat]

I'm from the Oct'17 group with Shi. Thinking of you all and just wanted to confirm what Shi said about the travel sickness bands. I wore them whilst having chemo and for a few days afterwards and wasn't sick at all. I don't know if it was definitely due to the bands, but they might be worth a try x

[Shi]

Hi emzlew ❤️ Loose comfy clothing, sleeve that will easily roll up, all ask to soak your arms in warm water in sharps bin if your trusts don’t do it and ask for heat pad on arm while they administer it 👍 I sucked ice lollies while they put the red one in, it helped preserve mouth for me but others didn’t do it and we’re fine. Drink water and then get 2-3 Litres through a day during chemo. The red one will turn you wee pink for a bit, if it’s pink still be next day just ring your units to check 👍 chemo is an extra dr on the inside 💪💪 if your antisickness meds don’t work, ring your unit, they will try different combinations till they get you sorted, main thing is to do everything your teams tell you ❤️ They know exactly what to do 👍👍to help you navigate through 👍👍 you can take a magazine, but you find you’ll chat to others having it too and before you know it, the nurse says done and off you go home 😁 you’ll find it’s more like having a get together each time with friends as you all chat away each round in your trusts 👭👭❤️❤️You’ll meet amazing people and make some fabulous friends ❤️❤️ 💕💕✨✨Shi xx

[Emzlew]

Hello again !  

How are we all doing? ❤️

This week has been a strange one.  I've been a bit wobbly, a little up and down with my emotions.  I guess it's just starting to get a little closer to beginning treatment and the magnitude of what's to come is a little more real...

I had my ECG and echo on Thursday last week and I'm having my PICC line attached this Tuesday.  I will be beginning FEC-T on Friday the 4th.

I have babysitters organised for both days and now just anxious to find out how I will be after treatment?! 

I'm collecting my wig on Tuesday too for just incase.. 

I will have a go with the cold cap but seeing someone with it on last week made me think I'm really not so sure I want to bother?!   

Can anyone tell me what I should take to my first session?  

I've had a lovely chemo gift bag given to me which was really thoughtful but what do I actually need with me on the day apart from a puzzle book or my iPad?! 

I'm so anxious but I'm still super positive!!  💪🥊❤️

Lots of love and strength being sent to us all xx

[Guest user]

Hi, I'm 61 and married with two sons of 21 and 23. I was diagnosed in July with invasive breast cancer ER - HER2+ .

I had SNB and WLE in August with clear nodes and margins. The tumour was only 7mm but high grade so I have to have chemotherapy. I start soon on Paclitaxel every week for 12 weeks plus  Herceptin for a year. Got heart scans and pre-assessment booked for the next week or so. No date but it will be October.

[Purpletrunks]

Good luck for tomorrow Amanda, let us know how it goes 😊😊😘

[Shi]

A thermometer too keep a check on your temperature during chemo. Any pee burning but no temp ring your rapid response, it’ll be a uti and will need treatment, no drinking a bit of cranberry juice not while on chemo. If anyone gets thrush mouth (lots of us had it from the chemo) make sure you get fluconzole don’t get fobbed off with drops. Always ask your oncs when you have appointments for bottle of difflam too. If you get sickness, then ring your unit, they will tweak meds till they get combination right for you, no need to try and battle through. Others have had seabands and it’s worked fine. The girls on the thread I was on that cold capped only washed their hair once a week and both did well 👍this is your journey you do what’s right for you every step of the journey. Trust your team, they’ve seen it all before and they will take care of you and support you. ❤️💕💕✨✨Shi xx

[ClaireL]

Thank you! I've got to get a shopping list together next week I think!! 

🙂

[Shi]

Hi Claire, sorry you find yourself on here. A good book I had was Patricia prijatel surviving triple negative breast cancer. Please use the someone like me option and ask the nurse option on here it will help about your little boy. There have been lots in same place you are right now and they will be able to help 😘 keep of dr google. Get your teeth seen to before starting, tell dentist you are starting chemo and they will get you in. Oral hygiene is important during chemo. Get soft toothbrush, some difflam, baby bum wipes, anosol, senokot or movicol or something as the steroids block you up on ec or fec then on t you can get hurricane bum. Please don’t worry 👭👭👭great people on this thread will 👭👭👭you through all together because together you are 💪💪💪💪. Get yourself booked on a look good feel better at your Macmillan centre too gives you something nice to look forward too and about £200 free makeup and how to apply lesson from a professional 👍💕💕✨✨Shi xx

[ClaireL]

Hi everyone,

I'm 35, married with a two year old son. I was diagnosed with idc in July 2019. It was by complete luck that I found it. It was the other side I was initially worried about! 

I've had a lumpectomy and removed 5 lymph nodes. Margins and lymph nodes have been clear which is great. Unfortunately mine is triple negative. I had a meeting with my oncologist yesterday and we start an accelerated regime (14 weeks) of chemotherapy on 7th Oct (EC and taxol). 

I'm planning on trying the cold cap. I'm having my portcath fitted on the 7th too so it's going to be a busy day. 

Biggest worry is how my little boy will be and how much I will be able to look after him. 

Dreading the whole process to be honest. 

[Purpletrunks]

Gosh, you have been busy with treatment already! 

This will be my first treatment... so the damn thing is still in there 

[aj72]

I too just want to get it started !

I’m 47 year old, married and mum of an 18 and 16 year old. Hubby, kids, family and friends have been great about my diagnosis and are all very supportive.  

I found a lump and was diagnosed with a Grade 2 IDC in May. Had a lumpectomy and SNB in June then further surgery to clear the margins in July. Saw surgeons in August who said tumour site was clear and was then referred to Onc in mid September.  The time between each follow up appointment has been 3-4 weeks so it seems to be dragging on. 

I am ER+ and HER2+ and need 6 cycles of FEC followed by 4-5 weeks of radio with Herceptin injections every 3 weeks for around 18 months; then anti hormone tablets. 

I have a heart Echo and bloods to be done tomorrow the visit to the Chemo Unit on Friday morning. No doubt I’ll be given loads more information to digest over the weekend 🤪🤪🤪

We’ll be fine once we get that first session under our belts !!!! 💪💪💪💪

[Purpletrunks]

Hi Amanda,

Good to have you here! 6 days to go huh? How are you feeling?

I worked out all my dates earlier, and if they stick to every 3 weeks my 5th chemo will be on Christmas day!!!  

Really wish I could just get on with it, although dreading it at the same time!

Lou x

[Shi]

Right looks like aj72 is jumping in the lifeboat first for oct19 thread 💪💪💪 bit of n-trance set you free on chemo jukebox to get you all 💃🏻💃🏻🕺🕺💃🏻💃🏻 Through 😘💕💕✨✨Shi xx

[aj72]

---

@Purpletrunks wrote:

Hi,

Anyone starting in October? I couldn't see another group?

Lou x

---

Hi Lou 👋 

I’m actually due to start FEC on 30th September but thought I’d join the October group rather than join the September party really late !!!!

Amanda x

[ruthie2]

Just jumping in here - I didn’t get a list of chemo no’s or yes’s of any kind so have carried on as normal, including swimming. No problems to report.

[Purpletrunks]

Got my dates today..

1st Fec oct 2nd 😬😬 

3 x FEC then 3 x something else with herceptin/pertuzumab.

Feel like the lump has grown today, but maybe it's because I've come off my period and they are less swollen. 

[Shi]

I painted my nails black during chemo as did mai7 and we kept our nails ok, the chemo can impact your nails, other ladies have used a cuticle oil (sorry can’t remember name of it) but that’s worked well too 👍💕💕✨✨Shi xx

[Shi]

You all need to check with your onc’s too About supplements, I had to stop turmeric, match powder (type of green tea), rosehip tablet, so please check with your oncs what you can and can’t take during chemo 👍 💕💕✨✨Shi xx

[Purpletrunks]

Thanks for caring Shi ❤❤. Already got swimming on the NO list for chemo time. 

[Shi]

Purple trunks please check about swimming while on chemo ❤️Keep safe 💕💕✨✨Shi xx

[Purpletrunks]

Morning Emzlew,

Wow, how utterly gorgeous and chaotic to have twins after two other lovelies. 

Isn't this a weird limbo time waiting for it to start? I already feel below par, not ill just very tired and low in resilience. Not sure if it's the stress or the cancer.

I am meeting my oncologist today to find out my dates... bit nervous although I dont know why. 

I have to have a marker fired into the lump on weds... did you guys have this? I dont remember my biopsy as they had just told me it was cancer, but I have really struggled to recover from it. Still cant swim 2.5 weeks later. 

[Emzlew]

Hello all

I found a lump on August 6th and was diagnosed with stage 3 BC that has spread to my lymph nodes.  HER2+ 

I am 42, married to my amazing wife and we have 4 children.  18, 5 and almost 3 year old twins. 

It's such a rollercoaster of emotions.  I am so positive and yet it still hits me like a runaway train. 

I am having my PICC attached on the 1st and my first chemo on the 4th.  I'm having 7 rounds HEC-T with Herceptin and Pertuzumab for a year. Followed by mastectomy and radiotherapy.

I have already cut off my hair in preparation and ordered a wig for any bad no hair days. 

I've got most of my chemo kit together (apart from the wipes and anusol 😳)  I'm pretty overwhelmed at the magnitude of it all at the moment and the amount of help I'm going to need with my youngest pair but i'm ready for my fight!!  We've got this!! 💪💪 xx

[Shi]

Hi purpletrunks, Chemo caddy shopping list as well as baby bum wipes and anosol, thermometer, silk pillowcase if not cold capping, get some lip balm and udderly smooth with extra urea cream from Amazon, it was only thing that quenched dry skin caused by chemo for a lot of us. I did graph chart and monitored my 3 weekly cycles, some people use travel sickness bands. Difflam mouth wash, soft toothbrush, I had a scalp care kit from beauty despit cancer, just one of the many tips mai7 👭passed onto us that were oct17 thread. The look good feel better session is where you get a bag of makeup and a beauty expert in at your Macmillan centre and they show you how to recreate brows, lashes and other great tips too all for free. 💕💕✨✨Shi xx

[Purpletrunks]

Lovely to 'meet' you jules! I wish it was under better circumstances. It would definitely be good to keep in touch through this crazy time we will be sharing! 

I'm not 100% sure about work, hopefully I will be able to do a bit from home as I love what I do. Do you work? 

I have my appointment with my chemo consultant tomorrow, so will get my treatment dates. I thought my surgeon said the her/pe would be weekly but I wonder from what you said about 18 lots being a year if I will have 3 weekly injections. 

@Shi thanks for the wipes/annusol tips. I have my friends pulling together a list of survival tips and products so I will tell them to add it.

What's the macmillian feel good session? Will my BCN tell me about it? 

[Shi]

And book your look good feel better session with your Macmillan team ❤️

[Shi]

Hi mai7 ❤️ I met mai7 2 years ago oct17, she was finishing chemo and I was just starting and she guided me to the forum and her and May17 girls took care of us on oct17 thread. Get a thermometer to keep track of your temp during chemo, keep your units advised if you feel funny or anything during chemo, and on to the lifeboat as mai says, hang onto each other and you will get through and as unlikely as it sounds with a lot of laughs too. Get your wig vouchers from your trust, check out your Macmillan centres they have pre loved wigs too. Get your teeth checked before starting chemo, get some baby bum wipes and anosol (sorry to be so graphic) but the steroids can make it a bit 😲 keep 💪💪and keep 😁😁😁you can do this 🥊💕💕✨✨Shi xx

[Mai7]

Glad we now have 2 people to share the October lifeboat!  I’m still in contact with my chemo buddies and we’ve met up too.

It is a rollercoaster of emotions at first and there is so much information to get your head around.  I think we are sometimes afraid of hope but at the same time we cling onto it.  This is why I share my story because I want you to know that even with an ugly diagnosis people do survive and get back on with life again.  The treatment regime feels overwhelming but just take it one step at a time.  Xx

[julesintheweald]

Hi Lou

i have only just decided to post on this forum, as it’s taken some weeks for me to come to any sense of what’s happening and strength to do this.

i totally am with you with all your fears and daily struggles.

i had my first mammogram in February this year which came back clear.  This is my 50th birthday year, so I had been enjoying holidays with friends and family, great family and home life, and career.  My husband and I celebrated out silver wedding anniversary in July so us and the kids went to Antigua at beginning of July - life was fantastic....

came back from holiday and I discovered a lump above my right nipple, which the GP thought was a cyst I was referred under two week wait ..ultrasound and biopsy a week later I was told I had 1.2cm invasive ducal carcinoma triple negative .... I was devastated.

since that time I have had the most excellent care by my hospital trust, MRI,s, bone scan, CT etc etc, then told that I am not triple negative but HER2+ I am starting chemotherapy x6 sessions on 1st October and like you herceptin and Ptuzamab x 18 my consultant says my diagnosis is excellent which although I keep telling myself is really hard to sink in to my brain every test is a torture to wait for result. I will have surgery at the end as the consultant has a pro active approach to reduction in surgery.

I think like you when you have been such a strong, positive and pro active person with your life in control something like this has such a massive impact.

i have spoken to ladies who have been through this and they are so encouraging and said you will get through this & some have no problems ... as we are starting our treatment at the same time  we should keep in touch ?

what is happening with work ?

with best wishes

jules

xx

[Purpletrunks]

Good morning 

Seems like it's just little old me at the moment.

21st aug my husband (🙏) found a lump, I didn't worry at all but happened to be seeing my gp that day. She wasnt worried either but 14 days later I was lying, still not worried, on the sonographer's bed and heard the words "looks like blah blah blah I'm afraid". BOOM! God knows what she said, but I had cancer and my life was over. I'm sure everyone reading this has experienced that moment too... when you are catapulted into acute fear, disbelief, shock. You are a million miles from home without a map, and it feels like you will never get home. 

2 weeks of scans and contemplating the worst  led me to  my consultants waiting room and the words "its cancer, it's in the lymphs, it hasnt spread". I have a 5.2cm Er+, HER2+ cancer in my left boob. Treating with 'curable intent' (I wrote that down) with 6 x chemo, herceptin/pertuzumab 12months, lumpectomy, Radiotherapy, hormone therapy for 10 years.

I am exceptionally grateful that my cancer hasnt spread, but totally and increasingly overwhelmed at the treatment pathway. I'm exhausted, cant seem to do anything, have 0 resilience/patience, and frightened. 

I'm 41, and married with two small children in Gloucestershire. I own my own businesses as a fundraising consultant, which I will temporarily close, and a property investor. My business partners and staff will keep this one going and I will dip in and out from home as I feel I can. 

[Mai7]

Hi

👋 

This thread is for anyone due to start chemotherapy in October 2019.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.

Here is the BCC guide on chemo:

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

I finished my chemo over a year ago and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum: http://lifeafterlola.com/

Best wishes xx

[Mai7]

This thread is for anyone due to start chemotherapy in October 2019.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.

Here is the BCC guide on chemo:

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

I finished my chemo over a year ago and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum: http://lifeafterlola.com/

Best wishes xx

[Purpletrunks]

Hi,

Anyone starting in October? I couldn't see another group?

Lou x