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November 2020 Chemo Starters

jomich50
Member

Re: November 2020 Chemo Starters

Thank you Jo got it first thing tomorrow so very nervous

half term felt normal again too 

why does it take two hours so you have x rays etc as well husband dropping me off 

now we lockdown first I panicked then thought maybe better fir us as we all isolating more together but just sad can’t see friends now 

hope all your ladies who started are ok with side effects and those about too good luck xx

Jojo1447
Member

Re: November 2020 Chemo Starters

To one Jo from another

Re your Picc line.  I am a total needle phobe and cried more when they said I would be having a picc line fitted than when they told me I have cancer.  I turned up to my appointment a total wreck, but they were brilliant.  They sat me down, explained everything step by step whilst the numbing cream was doing its magic.  I didn't for one minute think it would be as easy as it was.  I lay there and laughed and joked with the 2 ladies fitting it and I can honestly say I didn't feel a thing.  The whole process took a couple of hours but the actual fitting about 10 mins.

You'll be fine.  Let us know how you get on.

Jo x

ELLEGEE77
Member

Re: November 2020 Chemo Starters

Glad it went OK. Take it steady and look after yourself, keep us in the loop. 

Good luck with the wig. I'm not getting one, hats and bandanas will get me through. They did last time, I had a wig but I didn't feel comfortable in it, but that's just me!

I have heart scan and pre chemo meet on 9th, hope to start soon after, altho need a PICC line.

Good luck everybody, we'll get to the other side, it helps so much with your support xxxx

Shi
Community Champion
Community Champion

Re: November 2020 Chemo Starters

❤️Keep the fluids up 👍 flush things through 👍😘💕💕Shi xx

enem76
Member

Re: November 2020 Chemo Starters

Morning Charlotte 

so far so good just a slight headache this morning and not a lot of sleep but nothing major , I feel the same about the wig but think I’m going get one just incase and I’m the same not much of a social life either lol , here’s hoping it stays the same , would fancy wearing a wig In this weather it’s blowing a gale here 🙈have a lovely weekend xxxx

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi Fiona 

it all sounds as though it went really well. I hope your side effects don’t happen and the steroids do their job 👍. I wasn’t sure about a wig but wanted one just in case of one off social events (not that my social calendar has much in bc covid times 🙃) take care you’re doing great 💕💕

enem76
Member

Re: November 2020 Chemo Starters

Hi ladies

Hope your all keeping well, I had my first chemo session today and all went well so far so good no side effects yet it’s as if I waiting for something to happen only thing is I’m not tired 😓 obviously the steroids are kicking in as I’m normally can’t keep awake during day I’ve became very lazy since this all started love my wee afternoon naps , I didn’t get the option of cold cap so was there roughly 2 hours had a lovely wee lunch and cup of tea while relaxing I know it’s early days but here’s hoping the next few weeks are the same going book my wig appointment this week , really don’t know how I feel about wearing one but best to get one just the same , hope you all have a lovely weekend and enjoy Halloween as best as we can during these crazy times love to you all 

 

fiona xxx

charlotte3112
Member

Re: November 2020 Chemo Starters

You’ve got a busy week next so hopefully everything will just fall into place. Your bound to feel anxious I’m the same it’s like it’s happening but it’s not real!! I’m booked for a wig fitting next week, flu jab dental check and chemo pre-assessment my social life has just disappeared 😂 good luck next week 👍💕💕

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi Jo

It sounds like you’re ready to get started like me. I’ve had my lumpectomy and full axillary clearance already so my chemo is for mopping up those stray cells looking for a new host as I had 9 nodes positive. There’s a few ladies on here who are lobular queens so I’m sure they’ll be able to help with concerns with lobular and chemo response pre MX. I’m due an MRI in Dec as a precaution in case bilateral because lobular is sneaky. Good to hear you’re having your genetics done (I was low risk so went private) I’ve just had my results back and I’m carrying the BRCA2 gene. I’m 6 cycles FEC-T starting 10th but like you just want to crack on and get through it, there’s a few of us now in the group which is good because I’m sure we’ll all experience different side effects. Good luck with your first chemo 👍💕

MayC
Member

Re: November 2020 Chemo Starters

Jomich50 - I think we're on a similar path too!

I'm (still!) 49, diagnosed 22nd Sept, TN, Grade 2. I have anxiety anyway so first two weeks were hellish. Diazepam became my new friend...

Went for MRI, which showed 'mass' to be slightly larger then initial scans; a total of 2.8cm. Sentinel node biopsy on Mon 19th (my boob is still blue...but my wee has returned to normal, or is that too much information...??!!) but results showed no node involvement. DNA work done, no direct family involvement, but waiting on results. 

I'm due to start Chemo on Nov 3rd. 4 cycles of EC 3 weekly, then 4 cycles of Carboplatin, also 3 weekly, but with Paclitaxel running weekly too. 

I'm trying to find humour in stuff (if I loose body hair, does that mean I'll loose those annoying little chin hairs too...?) but am quietly terrified.

My Nurse reckons lots of people find chemo a bit of an anti-climax, so here's hoping we fall into that group.

May

Felinefriendly
Member

Re: November 2020 Chemo Starters

Hello everyone 

I had my mir scan yesterday morning

And met the chemo team and dept in the afternoon

They were very nice and gave me a book to take home and mentioned vouchers for a wig 

I have ordered a thermometer which has been delivered and some avenno moisturiser.... 

She ga e me anti sickness tabket to take at home hour before my 9 am appointment on 3rd

I more worried about being sick than anything as i had one bad pregnancy whilst i was sick the whole way through and in hospital with it. 

Feeling more prepared but still anxious 

Have to have blood test monday and everytime u have chemo bloodtest beforehand 

Gave me hot line number 

Having heart scan in morning of 3rd before chemo appointment 

Then ct scan on wed 

Hope everyone feels ok ❤️❤️❤️

Its good not to feel so alone with this 💜🤗🤗🤗🤗🤗

 

 

jomich50
Member

Re: November 2020 Chemo Starters

Hi All

The forum is now building up with us for November start.  I have Picc line Monday quite worried about that be pleased when that is done, then my first pre meet with Chemo nurse on Thursday with a view to get going the week after as really want to start now.  Was very thorough for me, diagnosed two days after 50 mid September at first mammogram which thankfully was not delayed with Covid.      Diagnosed 30.9 devastated and not expected at all as not felt anything, yet after biopsies, ultrasounds, MRI CT scan I also have Charlotte Multi focal, and main lump around 23mm is IDC and another one only spotted on MRI is lubolar! Plus some auxilliary involvment!  There is a also a potential tiny one so lucky I wasn't delayed. Also triple negative.   Have family history aunts, cousins (which I was told a few years ago was low risk for...) so doing the genetics testing and my chemo is full on Carbo/Taxol weekly then EC over six months, then MX and node clearance I imagine..   Just want to get going now and get rid of it. 

Does anyone know much about lobular I have stopped googling, I understand it is sneaky so you cant feel it as a lump but odd site mentions it doesnt always respond to chemo hopefully that is not the case..

Jo x

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi EMarple

Yes my situation was very unusual but fortunately instinct kicked in! I was referred by my GP who was brilliant on 2Wk referral pathway, I had ache on and off and lump/thickening and sent to the local breast clinic. I had an examination and ultrasound scan but wasn’t given a biopsy as they believed it was just ‘fatty tissue’ and diagnosed glandular breast tissue and was sent home with a leaflet to be breast aware fortunately I was very breast aware as my father had a mastectomy!  I just knew my body and eventually rang the private local hospital to see a breast consultant who diagnosed immediately. I have both Lobular and ductal mix, apparently lobular can be very difficult to detect on mamo and sometimes ultrasound and was just that unlucky that they were having an off day and didn’t do a biopsy. But because I’m living proof that these mistakes can happen, although very rare, If you’re in tune with your body and know it doesn’t feel right physically and mentally you push hard to be listened to ask your GP to refer you back. Now I’m going through this whole process I can’t emphasis that enough. Good luck with your journey and I hope you are listened to and shout again if you’re not😘💕💕

Crunchytoast
Member

Re: November 2020 Chemo Starters

Hi

I hope I'm posting on the right forum! I'm 64, married with two children and three grandchildren aged two, one and 6 months. In February this year my routine breast screening appointment was cancelled due to Covid.  I was invited back at the beginning of August which revealed a 13mm tumour. Following surgery at the end of September to remove a 25mm tumour, and 5 Sentinel lymph nodes I discovered that I had grade 2 cancer ER and Her2 positive but lymph nodes were clear.  Starting Herceptin targeted therepy (18 sessions every 3 weeks) together with Chemo (12 x weekly) on 11th November following insertion of Picc-line. Feeling calm and positive at the moment but reckon my anxiety levels will increase dramatically nearer the date! Don't think I will go for the cold cap as I've already had my hair cut extremely short and purchased some beanie hats in preparation! It's a small way of me taking control! NHS has been absolutely amazing, feel so grateful for everything which is being done for me whilst knowing that my chances have been increased for a successful outcome by having targeted therepy for the HER2 - this is clearly one of the things research has achieved.  Glad I've found this forum as I don't know of anyone who has had BC and an feeling a bit isolated.  

 

EMarple
Member

Re: November 2020 Chemo Starters

Dear Charlotte,

Hope you don't mind me asking a question. I noticed that you mentioned a false negative from NHS. My GP mentioned this to me as a possibility after she found an area of thickening. I had an appointment with her due to ongoing pain in left breast and arm.

enem76
Member

Re: November 2020 Chemo Starters

Hi My names Fiona 

hopefully I’m posting in the right forum , I’m 44 and was diagnosed with grade 3 Her+, I had lumpectomy back in Aug nodes all clear but oncotype score high so I’m about to start chemo this Friday , ec then d , radiotherapy and hormone therapy after up until now I’ve been pretty positive but nerves are starting to kick in and I’m sure it’s the unknown hopefully we can all share our tips with each other an have laugh along the way, nice just to chat to other people going through the same take care xxxx

Jojo1447
Member

Re: November 2020 Chemo Starters

Hi Charlotte 

just wanted to jump on here to reassure all new comers

I started my journey being diagnosed end of September.  I had my first round of ec 2 weeks ago.  I was positive and just wanted to get the ball rolling.  Had the 1st round on the Friday.  Was fine Friday night and Saturday, Sunday hit me just drained the whole day no energy, didn’t feel I’ll/sick just no energy Monday a little better just tired Tuesday back to normal.  
just listen to your body and do what you have to do, if that’s chill and eat ice cream do it.

i too have a picc line fitted which I was terrified about as a needle phobe but didn’t feel a thing and makes treatments so much easier.  Just a pain changing the dressing weekly and showers will never be the same lol.

i am due my second round next Friday, how I am looking at this is have a tick list and each step in a step closer to the end.

I purchased a wig before treatment began and to be fair it’s nicer than my own hair.  It’s classed as a gym/swim wig if you want to google them.  Not worn it yet as still have hair but expecting that to all change after second round.

so good luck to all you fabulous brave new starters, everyone is here for you.

Jo x

Smilodon
Member

Re: November 2020 Chemo Starters

Hi - I'm starting chemo Nov 9th. I am Her+/HR- having 6 mo chemo before surgery then more chemo. I am late 50s, married with a 15 year-old daughter and 2 cats.

I am resigned to losing my hair but as someone else said - much more shocked abut possibly losing my nails! I have ordered some Polybalm - I'll try it and see.

I just got my schedule today so I'm feeling a bit relieved - the waiting is very stressful. I have a low bar for good news these days.

I work PT and will just see how I go - hoping I keep keep going until surgery. 

I've been very anxious about treatment but it's happening and I think I've just exhausted my fear response. I'm doing it the other way around to some - Herceptin first then EC.

I remember when I was pregnant I was in an online group due in the same month. This is rather different but sort of familiar....

Shi
Community Champion
Community Champion

Re: November 2020 Chemo Starters

Clare ❤️ Be kind to yourself it is a lot to process being told you have bc and then you are sucked into appointments and treatment planning and being given leaflets and a little wallet and rapid response card and all the while you feel like you are in a bubble while life is carrying on. Take it one day at a time and one treatment at a time, do everything your way and what’s right for you ❤️ Use the threads lots of info and support on here, use the ask the nurse facility and the someone like me option too. Always ring your unit even with no temperature during chemo if something doesn’t feel right, don’t leave it help your team get you safely through, they don’t mind how much you ring them, they would rather you did ❤️ 👭you will get each other through 👭 and do what other threads have done have a big meet up when you are all through (I know Covid has stopped thread meet ups this year, but I know our thread oct17 looked forward to when we had ours it gave us all 👭👭) 💕💕Shi xx

marblecake22
Member

Re: November 2020 Chemo Starters

Sorry that last post wasn’t so good 

having a bad day today - I’m still in that horrible in between stage and suffering with ‘ScAnxiety’ 
hoping we can all keep each other going through this.  

I’m a mum of 2 - my daughter is 21 back from uni and doing a masters at home. My son has just started uni - it’s been tough telling him and knowing seeing him is going to be extra hard now due to treatment / Covid. Just started a new job which I was loving until this came along! 

marblecake22
Member

Re: November 2020 Chemo Starters

Hi my name is Clare

i was diagnosed with breast cancer last week - I’ve got tests still to be done but I’ve been told I’ll be starting chemo in November, 5/6 months Chemo then surgery and hormone treatment after. I turned 50 last year and wasn’t expecting to start this decade battling cancer. My head is all over the place and I’m so scared it’s not going to be treatable. I’ve got a second ultrasound tomorrow on my other breast as the mri has showed something and CT scan a week on Saturday. 

Felinefriendly
Member

Re: November 2020 Chemo Starters

Thank you

 

Hi everyone im going to the chemo room tomorrow afternoin to sign forms and everything before 3rd November 

 

In the morning im having mir scan

I was originally down for lumpectpy on 3rd but they have changed it to chemo first 

After reading posts in here im not going to do the cold cap thing... I hate being cold ❄️

I do have anxiety over it all but trying my best 

I didnt introduce myself very well on first post

Im 44 and have 4 children... 2 older lads and a 9 and 10 year old daughter 

I have 3 cats and currently not working as im main carer to my 2 children who diagnosed asd... Also used to care for my dad and previous to that my mum ❤️❤️

I think this forum will be a great source of support for us all ❤️👍

 

jomich50
Member

Re: November 2020 Chemo Starters

Hi 

I know but I have found a fab Facebook group for triple negative and it seems fairly usual especially with auxiliary involvement.    Wit this group and that hoping will keep me going.  Just dreading going into Xmas now like this but doing lots of pre planning while can !

 

will let you know how my picc goes and pre apt good luck to you all be better once we all had our first one ! 

jo xx

Shi
Community Champion
Community Champion

Re: November 2020 Chemo Starters

Uv light 🙄sorry text gremlins 🙄💕💕Shi xx

Shi
Community Champion
Community Champion

Re: November 2020 Chemo Starters

Hi Charlotte black nail polish works too preserving nails, protects from us light, keep them short too ❤️💕💕Shi xx

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi Jo 

that’s a whole list of treatment sounds like they’re throwing everything at it, I’m 54 and like you wasn’t expecting to be here on a forum talking about breast cancer it’s bizarre but I’m glad I’ve found the forum. Keep us posted on how you’re getting on my pre-asses is 5th so hopefully your first treatment won’t be long after👍💕💕Tracey x

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi Felinefriendly

Its good to know there’s a few of us in the November group. You’ll be one of the first to get your chemo in the group. I hope it all goes ok for you and you’re mentally prepared as you can be on the 3rd 👍💕💕

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi Lou and all other November starters.

Had my apt with Onc yesterday and I’m starting 6 cycles of FEC-T my first chemo is on 10th November. I’ve got bloods and Pre-assume then I’m good to go. it’s all a bit overwhelming but like you just want to get started. It’s Chemo then Radio and then some bone injections.  I’m starting to plan now the Onc said I’ll definitely lose my hair and she also said one of the drugs in the FEC doesn’t give good results with cold cap. So I’m now preparing to sort a wig and a few more hats/turbans and a few bamboo sleep caps Etc. I’ll also get my meds cupboard stocked with a million things to combat side effects. I’m ok with losing hair but the effects on nails was a shocker 😳I’m now looking for a good ‘water based’ nail polish I don’t want my feet and hands to look like trotters 😂. I’m nervous but mentally I’m getting myself prepared because we can’t stop this journey. Good luck with the PICC fitting and keep us updated on your dates to start on your journey 😘💕Xx

ELLEGEE77
Member

Re: November 2020 Chemo Starters

Hi all

Havent got an official start date, Onc said prob 2 weeks. Got to have a heart scan, see chemo nurses and have a PICC line fitted first.

Will be have 3 x EC and then 12 x paclitaxal followed by radio.

Just want it to start to get it over with!!!!

Charlotte3112 how did you get on?

Xx

Felinefriendly
Member

Re: November 2020 Chemo Starters

Hello everyone 

Im new i hope im posting this in the right place 

Im starting nov 3rd

jomich50
Member

Re: November 2020 Chemo Starters

Hi all 

 

I will be also starting in November.

I was diagnosed end Sept had loads of scans etc and I have multi focal with auxiliary involvement.  Also triple negative 😔

My picc line fitting is 3.11 and pre meet 5.11 so hopefully first one will be following week. They have been super quick and thorough but like you all waiting and worrying been awful with mri ( which was amazing as found the multi focal ct scans etc ).  Mine was found from my first ever mammogram two days before I hit 50.   I also worry re covid and any delays etc.

my onc thinks I am young and healthy so has suggested weekly carbo /taxol then EC over a long 5-6 months ( have significant family history) 

terrified but just want to get on this rollercoaster now.   Masectomy and guessing node clearance will b after due to triple negative

good to have others to chat to going through similar experience jo xx 

 

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi Lou

Its rubbish that you’re here doing the chemo journey again! I’m not looking forward to any of what’s to come In the next few months but going through it twice must be hard for you. Good luck for tomorrow and keep us posted on how you get on 😘💕Tracey xx

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi Jane

It sounds like you’ve been on a rollercoaster with the ongoing waiting. I completely understand about worrying about spread because of delays but I think our minds are working overtime. I Initially thought I’d be starting chemo in Sept but because of more surgery everything was delayed due to the healing process. My BC nurse reassured me that any delays are factored in to the overall treatment plan And like you I’d started to get really down with the whole waiting periods. But we’re on our way now another few weeks and we’ll be chemo’d and blitzing this so stay positive 👍💕💕xx

aqua76
Member

Re: November 2020 Chemo Starters

Hello!

Think i'm now going to be a November starter as well.

Was due to start chemo this coming Tuesday but i had to get an emergency op re an unrelated issue but i think they are now going to delay to give me some recovery time.

Have generally been positive since my diagnosis at end of September, but having awful fears about things spreading with chemo being delayed!

I was supposed to have mastectomy, which was postponed for HER2 result, then another postponed as HER came back positive!

Anyway, my treatment plan is EC for 12 weeks, then Pertuzumab & Trastuzumab for another 12 weeks, then surgery at the end of it.

Jane x

ELLEGEE77
Member

Re: November 2020 Chemo Starters

Hiya. 

I too have an appt with my onc on Monday. I have triple negative cancer, had a mastectomy and full clearance in Sept. Unfortunately I've been down this road once already 14 years ago, so not sure which chemo will be chucked at me (it's another primary exactly same type of cancer although is smaller and only 1 lymph node out of 16, had 3 out of 8 last time). I'm waiting for results from genetic testing.

I think I will be starting Nov too. Let me know how you get on!!! Good luck. 

Lou

Xxx

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi I’m finally having my first apt with the Oncologist on Monday so I’ll probably be an early Nov Chemo starter. It’s been a long wait since finding the lump in lockdown then 2 X surgeries first one was August with Lumpectomy inc. full axillary clearance with 9 lymph’s positive, ER+ Hers- ILC with some IDC, then again for margins. I’m not sure what will happens at the first Onc apt but I’m keen to get started which seems strange but I’m thinking the sooner I start the sooner I’ll finish ready for summer (hopefully with hair) The surgeon said we’re treating it aggressively which was a bit daunting but said we’re throwing everything we have at it. I was ready mentally for Chemo but the bone injections every 6 months has come out of the blue. He said my Onc will go through my treatment plan and to get any questions answered etc but I’ve not thought of any questions to ask it’s like going into the complete unknown 😳. I’ll be back with my dates to start and hopefully there’ll be others starting around my times xx😊💕💕

Mai7
Community Champion

November 2020 Chemo Starters

Hi 👋

 

This thread is for anyone due to start chemotherapy in November 2020.  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 and get a thermometer and check your temperature every day.

 

Here is the BCN guide on chemo:

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-...

 

Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo: https://pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/

 

Here are some apps which can help to keep you on track: 

https://breastcancernow.org/information-support/support-you/becca

 

https://www.nhs.uk/apps-library/owise-breast-cancer/

 

https://www.careology.health/

 

I finished my chemo in October 2017 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/


If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in.  Your conversations can be a real comfort to others.