October 2019 chemo starters

[KathCurtis]

Hi all

i am having a scary time again. My “chest infection “ hasn’t shifted at all on the most recent scan so now they wonder if it is lung cancer. I am without words. Loads of tests to go through (PET scan, biopsy, brain scan being the most daunting). So i might be missing for a week while we establish what’s going on. 
take care all

kath

x

[Cherryp]

Thanks everyone. So nice to have this group to consult with. We will all beat this together!

[Shi]

Cherryp 👭 if you feel strange please phone your rapid response, best to get everything checked with you being diabetic too, keep safe 💕💕✨✨shi xx

[jasmine1897]

Well done Claire 2 down now! 
rest up xx

[ClaireL]

Round 2 done!! 

I get sleepy almost straight away with one of the anti sickness drugs. 

I then have brain fuzz for about 5 days. Like I can't always find my right words and forget what I'm doing. 

Off for a quick nap before the boy comes home. Hope everyone else is ok x

[Purpletrunks]

Hi Cheryl. I felt fuzzy headed day 3, and I got worse to the point I couldn't really lift my phone. No way I could have driven. But I just gave into it and it was ok. Xxxx

[KathCurtis]

Hi Cheryl

The weekly Chemo has a weird effect on thinking and tiredness for me. It’s like you are tired and wired at the sounds time. It’s such early days for me yet and it sounds like the same for you. I guess we will have to keep adjusting to how it impacts us. On the upside I feel pleased that the drugs are killing those damn cancer cells! 
kath

x

[Cherryp]

Hope everyone is doing well. I’m certainly trying to look on the bright side and read the positives into everything I find. Occasionally a bit of poor me creeps in but I’m not going to give myself a hard time about that. 

Had my first EC on Friday and anti sickness and steroids have done the trick so far but does anyone else feel extremely fuzzy headed ? Feel like I’m doing everything on half speed. I don’t think I should drive like this. Temperature is OK and as a type 1 diabetic I’m on double dose insulin to deal with the steroids making me insulin resistant which might not be helping. Just wondered if anyone else felt this way?

[Shi]

Claire l, the book gave me hope after a tn diagnosis back in June 17, also survivors of tn like Patricia herself, Shannon Doherty, robin Roberts and Joan lunden. Everyone navigates the whole journey their own way in their own time and by doing what ever it is they need to do, there are no right or wrong ways to navigate through. I 💩 myself when I was told I had tnbc and just grabbed hold of everything positive I could get my hands on, but that was just how I navigated through and with a lot of ❤️👭❤️From beautiful kind people on here, some no longer with us and a lot who still are 😘💕💕✨✨shi xx

[jasmine1897]

Good luck to everyone having chemo tomorrow and this week. Xx 

Thought I’d update as I posted about my mum having her first chemo on Wednesday. she is feeling okay so far. She had her injection for wbc tonight first time so will report back on this!

She has said her scalp has started to hurt (sort of like when your hair pulls after it’s been up all day in a ponytail), painful jaw and general aching (she also suffers from lymphedema in arm & neck so a lot due to this) 

MRI on liver Thursday (CT showed small area they need to look at, unsure at this stage) x

[ClaireL]

As a warning, I stopped reading that book very quickly because some of the statements made me feel quite rubbish about everything and questioning some things. It may have gotten better so may be worth it but thought I would warn you. 

[leaw]

Thanks very much ladies for the warm welcome. SHI - I’ve just ordered the book you recommended, thanks. Yes we sound very similar Claire, I’m going to give it my all, and remain positive whenever possible. I hope the rest of the week goes well for all you ladies who are already smashing your way through your chemo ❤️❤️❤️🙌🏻🙌🏻🙌🏻

[ClaireL]

Thanks Kath x

[KathCurtis]

Good luck for tomorrow Claire. Soon be another one done and closer to the end 😊👍

kath

x

[KathCurtis]

Hi Grassy

i have weekly Paclitaxel plus 3 weekly Carboplatin for triple negative bc on Fridays. Just had second dose of first round. Paclitaxel alone seems to give less side effects than the two together. 
kath

x

[Shi]

Hi Leanne a good book that helped me when diagnosed tn in June 17 was surviving triple negative breast cancer by Patricia prijatel. I was 45. Glad you’ve jumped on thread 👭👭 plenty of tips and everything as you’ve probably read already and the red one will make your wee pink for a bit after, just keep plenty of fluids flowing through you during chemo, ring your rapid response for anything, the main thing is to get through chemo safely, get your kylie gold hot pants on like us oct17 chemo thread did and 💃🏻💃🏻🕺💃🏻💃🏻🕺 your way through 😘get your look good feel better booked through your local Macmillan 👍 free makeup and tips on how to do your makeup 😁 👭we are all here ❤️💕💕✨✨shi xx

[ClaireL]

That sounds familiar. I was diagnosed in July and had my lumpectomy in September. Margins and lymph nodes clear but tumour was twice the size they expected. Stage 1, grade 3. 

Just trying to keep the bugger away now. 

Youve got this though, and any day you haven't, we are here. Except tomorrow when I plan to go to bed as soon as I am home to avoid nausea and sickness!!

Good luck to everyone else for tomorrow and this week xx

[leaw]

Thanks Amanda, I’m so ready to start chemo on Friday and begin the journey of kicking cancers ass 🙌🏻🙌🏻 I’m 38 married with 1 son who’s 10 and I live in the Lake District x

[leaw]

Hi Claire, mine is FEC-T. 6 sessions 21 days apart ( 3 x fec & 3x T) followed by lumpectomy upto press. I’m going for clip/marker fitted this week, then picc line on Thursday as I have rubbish/invisible veins 😂🙈 dr assessed my cancer as stage 1, grade 3. Biopsy from my armpit we’re cancer free. Lump was around 15mm, although I feel it’s grown ( dr said it would as it’s aggressive grade 3). I found the lump on 17th September so I feel like it’s been a whirlwind xx

[Emzlew]

Another FEC-T here!  2nd round on Friday all being well.. 

Shaving my hair tonight. 

Hope all goes well for you everyone this week! Sending lots of love 

Emma xx

[aj72]

Good luck for tomorrow Claire!!!

I’m second round of FEC tomorrow all being well 🤞🏻🤞🏻

Let me know now how you get on. 

Amanda 

👩🏻‍🦲💋

[Purpletrunks]

Hi Leanne and Grassy!! 

I'm er+, her2+ and on FEC-T every 3 weeks.

 Dose 2 on weds.

Lou xx

[aj72]

Welcome Aboard the October boat Leanne !!!  Grab an oar !!!

Are you having treatment before or after surgery ? 

There are a couple of triple negative ladies on here who should be able to help you with any questions or concerns. 

Be assured tho that the treatment itself isn’t so bad, we just have to manage the side effects. No matter how big or small your worries are please contact your unit. 

I’m all set for my second round of FEC at 12 noon tomorrow as long as my bloods are okay. I’ve got everything crossed 🤞🏻 

I’ll come back on after treatment to let you know how it goes. 

Take care and try not to worry, you’ve this and we’ve got you !!! 👊🏻💪🏻

Amanda 👩🏻‍🦲💋❤️

[ClaireL]

Hiya,

I'll be starting biweekly paclitaxel after my EC. Three more EC'S to go before I start. 

How are you finding it?

X

[Guest user]

Hi there, is there anyone else on weekly Paclitaxel? I started on 8th October and am just coming up to my third dose.

[ClaireL]

Hi Leanne,

Welcome!!

That is my diagnosis too. What's your treatment plan? 

I am on my second dose of EC tomorrow. 

Claire x

[leaw]

Hi I’m new, I start chemo next Friday 25th October. Triple negative breast cancer.

leanne x

[jasmine1897]

Thank you Shi, that’s very helpful! I don’t think you can ever be over cautious with this stuff! It’s a good tip about tracking your temp too 💕 x

[Shi]

Jasmine you take your temperature as you like. Because I had a graph chart with each week of my cycle day by day, I tracked mine through the day and night, it was just what I found to be useful, I put on the graph when I’d taken tablets and done injection too, chemo brain fuzz can get you a bit confused. Don’t forget though not having a Temperature doesn’t mean nothing is going on, if you don’t feel right but no temp phone rapid response, if pee burns and no temp phone rapid response (I had 6 days casa nhs after first round, burning pee no temp, luckily I rang the rapid response because I was nadir and neutropenia) also any thrush, mouth or otherwise it’ll need antibiotics not over the counter cream. Thrush mouth is common during chemo ensure you get fluconzole 👍 hope this helps 💕💕✨✨shi xx

[jasmine1897]

Annie, I asked the oncologist how often you have to take temp, she said only if you feel unwell (not very specific!) or before you take paracetamol. Although saying that I’ve heard people have been told to take once in the morn to monitor it.. don’t think you’re a nuisance, they’d rather you let them know than sit at home and worry XX 

[ajatron23]

Lovely to see so much positivity on here. You ladies are rocking fundraising, awareness and hairloss!!  

My injections are nivestim. I had the searing bone pain in my jaw and back. It’s still lingering but my god. It was like early labour pain 😩

is anyone else constantly taking their temperature 🤒? I’m getting through those covers like no ones business!! And my ears differ quite a bit in range. 

I think I have spoken to the unit at least once a day since I started. I feel like im being a nuisance. But I’ve ended up in a and e twice already. It’s going to be a long 6 months ...

it’s good to see some smiling faces on here xxx

annie

[KathCurtis]

Good to hear pain passed now Emma. So sorry it was horrid!

And AJ you look brilliant- go you!

Had second of my weekly chemo yesterday- just the taxil this time and I feel pretty fine. Must be the Carboplatin that caused some of the unpleasant effects and that’s only once every three weeks so I feel it’s a bit more manageable than i first feared. Genuinely the waiting to be treated bit was the worst time.

wish you all a happy weekend 

love

Kath

[ClaireL]

You look amazing with no hair!! Well done!! 

[aj72]

Emma

Theres still time to do a fundraiser.  All of October is Breast Cancer Awareness month !  

I went straight in for a Grade 0 - no messing about !! 

I think it can add pics. Let’s try ...

Hubby and I

Me wearing ‘Frenchie’

[Emzlew]

Hello ladies! 

Very well done on your successful head shave!  Brilliant of you to turn it around into a positive and raise money and awareness! ❤️

I'm thinking I will have to shave mine later today.  I'm shedding lots now.  Did you just do a grade 4? 

I'm excited and nervous. I'm kicking myself that I didn't turn it into a fundraiser like you! 

I believe my injections were called Zarzio?! 

I didn't have a problem with them until the last one.  The following early hours I was in so much pain in my lower back.  I've never experienced anything like it.  It was such a deep painful throb!  I had to have a hot water bottle and some paracetamol.  That helped.  Then the next day it was gone and I've been fine since?! 

Emma x

[Purpletrunks]

That's amazing AJ72, what a fundraising result!! Glad your buzzing about your baldness. Have you felt rain on it yet? Very curious sensation!!

I found shaving it off very liberating. My daughter had two lovrly little girls over to play yesterday. When I took my hat off in the car they stared hard and one, in the earnest way kids do, said " people will see you, you could get a wig". The other thought hard and said "you look better with hair". Bless them. I think I probably do look better with hair!! But I'm good without it, and I'm good not looking my best. Because I'm alive! And I'm enough just as I am.

That said, I was rather inspired seeing Tilda Swinton looking bald and beautiful in Marvel's Endgame. I thought I might embrace the look and dress up as a wizard for 6 months. The kids didnt think it was such a good idea!! 🙄🤣

I had no pain with injections but was warned of very bad bone pain. Call the helpline though, just in case, and to get pain relief.

And I dont think we can share photos on here, which is a shame but I guess it's a bit public. We would have to move onto whatsapp/facebook for that. 

[aj72]

OMG ladies - head shave done and a massive success. £403 raised on the night and currently £200 on our Just Giving page.   Absolutely overwhelmed by the support of my friends.😊❤️

Had a fantastic evening and my hubby shaved his head too 👩🏻‍🦲👨🏻‍🦲

Spoke to loads of ladies (and men) about checking themselves regularly, which was my main aim of the evening, so success all round. 

Absolutely buzzing and being bald is bloody great. I love it !!!!!  Embrace it  ladies, we are all beautiful 💋💋💋

[KathCurtis]

Hi AJ

i had no pain with injections and that doesn’t sound right. Do give your emergency number a call!

love

Kath

[ClaireL]

Which injection? The immune booster? 

I was ok with mine but I would call the unit to make sure. 

I hope it feels better soon x

[ajatron23]

That sounds amazing - good for you! 💕

has anyone else had searing pain after their injections. I’ve taken my last one and I feel like I’ve been hit by a train. Searing pain in my jaws and back

[aj72]

Hi ladies 

My venue is all decorated ready. I’m shedding like a shaggy sheepdog so can’t wait to get rid of my hair now. Head shave at 10pm tonight after an evening with friends and family for drinks, laughs and raising awareness. My kids (18&16) are having a go with the clippers too and can’t wait ! 

I called into my work today and they are taking part in Wear it Pink and had raised over £100 in support !!! Also I called into a Currys today wearing a slogan T-shirt and pink tutu and one of the salesmen gave me £5 for the cause!!!!

Does anyone know if we can add pics on here ? 

Amanda 

👩🏼✂️👩🏻‍🦲😀

[ClaireL]

Apparently there are some brilliant adhesive ones!! My hair lady said she uses them and she has alopecia. Hypoallergenic too! I'll see if I can find out the name. 

[Emzlew]

ClaireL 

I would love to have my eyebrows done but just cant afford it.  

I've asked some of the mums at school to check my eyebrows when I start to pencil them on to make sure they are in the right place..!! 🤣

My wig lady told me it would be the 18th that my hair would start and she was spot on!  

It's my eyelashes falling out that is scaring me sightly.  Does anyone know if you can use any falsies or are there specific ones? 

xx

[ClaireL]

Hi all,

Just had bloods ready for second go on Monday so spending this weekend with my family. Baking with the little one with puddle stomping and playing trains 🙂 

How was the headshave today??

I'm a bit behind you guys but am expecting the hair loss from next week. Eyebrows have healed nicely so at least I won't look like an egg!!! 

Have a great weekend everyone. X

[KathCurtis]

Hi all

i am on the second of my once weekly today. So probably sleeping most of the weekend 😝

Take it easy everyone. 
kath

x

[Emzlew]

I LOVE boxing!  It's such a tonic after a rubbish day. I wanted to go this week but I've had a stinking cold. Hopefully next week..

Well done on 15 mins!  That's amazing! 💪💪

Do you still have a PICC?  It doesn't bother you whilst punching? 

I'm planning on taking the little ones out this weekend too.  Mine all starts again next Friday.  I know you are a couple of days before me so I knew my hair would start very soon after seeing yours had started. 

I will see how much falls out after a shower later to determine when I will shave it?! 

I will get the kids involved too ☺️ 

This all really sucks but it makes the special moments even more special!! ❤️

Enjoy every moment of your weekend 🥰 

Em xx

[Purpletrunks]

Hi Emma, 

Another martial arts fan eh? Nothing like punching something really hard for stress relief eh?! I managed 15 mins today 💪💪🤣

Mine started falling out on weds, so I got the kids (8&10) to shave it with clippers. It was actually quite fun. They shaved me a silly style first. I wasnt sure how I would feel but actually I'm ok with it. Except I just walked out in the rain and the feeling was very odd! 🤣🤣

This weekend is my 'good' one before it all starts again next weds. So I've devoted it to making sure my family have a really good time. Playdates and sleepovers for the kids, and I've shipped the parents in laws in so my husband can go to a really exciting martial arts event. Seeing them all happy will make me very happy. And I think I will do some cooking cos that makes me happy too. 

What's everyone else up to...? 

[Emzlew]

Amazing idea with the kickboxing!!  I go to box fit and I didn't know how id be feeling..  I've had a stinking cold this week so I did go but I'm hoping to go next week! 

How is everyone?  

My hair has started to fall out today.  I wasn't sure how I'd feel about it but yes, I'm a little freaked!  I'm enjoying having short hair again and quite like how it is at the moment but nope.....I will have to shave it before I look like a carrot half scrope (as my mum would say) 😁

I keep catching my 5 year old little man looking at my hair.  I think he thinks it's going happen all of a sudden.  Bit like a Christmas tree. Shake me too hard and it will all fall out like pines off the tree!! 🤣🤣

This time next week I will be on my second treatment.  Am I allowed to ask for stronger anti sickness meds?  

Does anyone have anything exciting planned for this weekend? 

Emma x

[jasmine1897]

Purple trunks, that’s good that they don’t hurt too much, and I have heard side effects can be quite painful.

i find uti’s very sneaky, often lingering for a while before showing symptoms. I’m glad you got checked out though and you’re feeling better! 
my mum actually started her period the day on treatment (before). She was thinking It may be her last due to the same thing (she’s 45). 
that’s an amazing idea about the kickboxing, looking forward to hearing more about that! X

[Purpletrunks]

Evening!

@jasmine I had the injections. They prick slightly but dont hurt as long as you plunge very slowly. I really hated doing it though. And I had side effects, but I'm generally sensitive to medication. 

I am due on this week and have had a tiny bit of spotting but consistency and volume are different. I'm watching for a few days before getting it checked out. 41, so expecting medical menopause. 

Two trips to the chemo helpline this week. Sat because I had a uti and then a sore throat.. they discovered I was severly neutrapenic.. 0.09!! That was terrifying, but all has been fine. Weds I was back in because I have a red rash appear.. they weren't too worried but I was thrilled that my nutrafil were already back up to 0.7. So still neutrapenic but going in the right direction!!

This week I have been to yoga at Maggie's and today I managed 10 minutes kickboxing... that's a result as I'm still pretty weak!!! My husband owns a martial arts club and we have decided to start a free weekly 'kick cancer' session for anyone affected by cancer. It's very good for physical and mental health and it's really hard to find aerobic excersise that's suitable for cancer patients. Idea is to let those whosoever ones have cancer come too. No doubt ( one of my professions is a fundraising consultsnt) I will squeeze some fundraising off the back of it too... maybe a kickathon of some sorts. 

Anyway, this is my 'good' week before round two next week. So I'm trying to do normal things! 

Oh and my head hair is coming out now... really hope the lady shaving her head keeps the thick blonde hair until the shave... good luck.. you have my full respect for making that so public!! 

Xxx