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October 2019 chemo starters

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Re: October 2019 chemo starters

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 

Member

Re: October 2019 chemo starters

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

Member

Re: October 2019 chemo starters

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

Member

Re: October 2019 chemo starters

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

 

Member

Re: October 2019 chemo starters

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 ...

9B47DD7B-0C8C-4FEE-BFDA-8CE3C4CEB325.jpegHubby and I

 

E1E590CC-D36E-4240-A474-C9AAC65B7343.jpegMe wearing ‘Frenchie’

 

BB6C59FE-02A7-46DE-9C91-276FBC23F7D2.jpeg

 

Member

Re: October 2019 chemo starters

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

Member

Re: October 2019 chemo starters

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. 

 

 

 

Member

Re: October 2019 chemo starters

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 💋💋💋

Member

Re: October 2019 chemo starters

Hi AJ

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

love

Kath

Member

Re: October 2019 chemo starters

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

Member

Re: October 2019 chemo starters

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

 

Member

Re: October 2019 chemo starters

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 

👩🏼✂️👩🏻‍🦲😀

 

 

Member

Re: October 2019 chemo starters

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. 

Member

Re: October 2019 chemo starters

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

Member

Re: October 2019 chemo starters

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

Member

Re: October 2019 chemo starters

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

Member

Re: October 2019 chemo starters

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

 

Member

Re: October 2019 chemo starters

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...? 

Member

Re: October 2019 chemo starters

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

Member

Re: October 2019 chemo starters

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

Member

Re: October 2019 chemo starters

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

 

 

Member

Re: October 2019 chemo starters

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...

 

Xxx

 

 

Member

Re: October 2019 chemo starters

I've gone the other way I think. I'm expecting mine any day but no sign yet. I have bloods tomorrow so will mention it then. 

 

Good luck for the head shave tomorrow!! 

 

Claire x

Member

Re: October 2019 chemo starters

Sorry AJ i am post menopause so haven’t paid any attention to this issue! Hope you have a good oncology nurse you can ask?

kath

x

Member

Re: October 2019 chemo starters

I think I read somewhere that they can be affected and that some in between spotting is possible. Bleeding and bruising is a possible side effect though so probably best to check with your hotline. 

Member

Re: October 2019 chemo starters

Hi all

 

random question-has anyone else’s periods been affected? I am not due and was expecting everything to stop but I seem to be evidencing there start of something?! Sorry if this is tmi xx

Member

Re: October 2019 chemo starters

Thank you Kath.

glad you got it looked at and good news about the port (I have heard good things) 

that’s good about the injections, my mum was hoping she could do them herself 💪 

hope everyone is keeping strong x

Member

Re: October 2019 chemo starters

Hi all

so pleased things went well for your mum Jasmine 🎉.

 I had the injections for 3 days and they were fine. Very easy to do yourself too, which was a relief. 
saw a nurse today who thinks my arm has phlebitis as a reaction to Taxil in the vein. Going to look into having a port.

love to all

Kath

x

Member

Re: October 2019 chemo starters

Hi Kath,

 

The lorazepam worked well so she was able to have treatment yesterday (herceptin and docetaxol). We were in from 9-5pm with monitoring as it was her first one. She slept mostly and felt fine. Bit of heartburn when she got home but think that was the roll she had laying down! 
slightly bloody nose today and altered taste to water etc but other than that successful first treatment. We got given the injections to start on Sunday - what’s everyone’s exp with these? (Sorry can’t remember what they’re called but they’re for white blood cell count)

 

Kath does your arm feel hot? I would ring the unit just to make sure it’s not the start of an infection or something, I’m sure it’s fine but it’s best to double check. 

x

Member

Re: October 2019 chemo starters

Looks like on the whole everyone is doing OK this month. Hoping I can report the same next week. 

 

Does anyone take baked goods into the ward with them? First session tomorrow and needing some distraction so thought making up  batch of ginger oaty crunch might be good. Don't want to leave it all at home though as then I'll eat it all! 

 

Think I'm all set to get started. Had an Echo today to baseline my heart as epirubicin has previous when it comes to heart damage. Yikes! At least they found one and it seems it's pumping fine. 

Member

Re: October 2019 chemo starters

Just a quick note to remind anyone with concerns (no matter how small) to contact their unit.

 

One of my side effects (and I have been very lucky) has been a dry/tickly throat and cough which is 100% worse at night leading to separate bedrooms, aching ribs and many sleepless nights. My unit were great advising throat lozenges and lots of water. Sadly this didn't help

much. 

 

I visited my GP on Tuesday simply to get my chest checked for my own peace of mind. My chest was clear however as a precaution he prescribed antibiotics and asked that I update my unit.  This I did and they asked I pop in just to get checked out. So bloods were taken and it turned out that on Day 17 I was neutropenic even though I felt absolutely fine  (other than the damn cough) and didn’t have a chest infection.  Antibiotics (as a precaution) and cough linctus prescribed.  As I felt okay and had no other symptoms I was allowed to go home on the understanding I returned the following day for further blood tests. This I did yesterday afternoon and again returned home. I received a call later that evening to say my bloods were ‘going the right way’ and ‘not to worry’. 

 

Hoping all should be good for bloods tomorrow then Round 2 on Monday 🤞🏻🤞🏻 

 

Moral of the story is that you may feel okay on the outside but be vigilant of what’s going on on the inside. 

 

On a lighter note, my hair is starting to ‘thin’ out but luckily being blonde I’ve lots to spare.  Trying to wash, dry and brush hair lightly so as not to turn up bald to my head shave tomorrow evening - that would be embarrassing 🤣🤣

 

Take care and stay well ladies 💋

 

Member

Re: October 2019 chemo starters

How is your mum Jasmine?

And how is everyone else doing?

 I am feeling pretty good today- 6 days after first chemo (sadly next one is tomorrow). But where canular was attached i have a very painful red patch under the skin on my arm from wrist to elbow. It feels kind of bruised. Someone told me that a nerve might have been damaged when canular was put in . Anyone else had this?

Member

Re: October 2019 chemo starters

So pleased you haven’t had nausea! Hopefully it stays that way for you, good luck for Friday it’ll soon be another one ticked off x

Member

Re: October 2019 chemo starters

The Calm App is a good one! Only one treatment down, next one Friday. But no nausea and only a bit “knocked out” so quite a good start. Long may it last. Let us know how your mum does tomorrow! 
x

Member

Re: October 2019 chemo starters

Hi Kath,

 

thank you for the reply, brilliant advice as I actually mentioned the ‘calm’ app and I do believe it helps. I think as it’s the first proper treatment fear of the unknown always surfaces. 

how far are you into your chemo journey? Hope everything is going well x 

Member

Re: October 2019 chemo starters

Sorry to hear about your mum Jasmine. Unfortunately it isn’t anything I have come across (still very new to chemo myself) but I do know stress and worry won’t help bring the heart rate down. I guess you can only try to calm and reassure her - has she tried any meditation apps? 
Really sorry if this feels flimsy advice, i do feel for you both 

kath

x

Member

Re: October 2019 chemo starters

Hi everyone,

I hope Tuesday is treating you well.

 

after my mums initial dose of Pertuzumab yesterday, today’s dose of docetaxel & Herceptin was due. Unfortunately due to her heart rate being too high and not enough time to lower it we got sent home and told to come back tomorrow. Has anyone had this happen before? She’s got lorazepam to take in the morn before to hopefully bring the heart rate down. Tests were done and heart is okay but they obviously don’t want to take any risks due to Herceptin's risks. I think she’s worried it won’t go down and she won’t be able to have the treatment. 

hopefully more to report on her first cycle tomorrow Smiley Happy

Shi Community Champion
Community Champion

Re: October 2019 chemo starters

That’s why we did August, we had all done and got some nice coverage on the bonces 👍the ladies who cold capped were back to lush locks by then too ❤️ Don’t bother with the ritz, they said they couldn’t accommodate us at any time. Fwaahhh fwwaahhh so we went to the Arch, had our own room with beautiful afternoon tea our own waiters and the room had separate bit with sofa too so we had more natter after and a dance too one of the ladies took her speaker for her phone and did a play list - oct17 we had a tune a day on our thread. Whatever you do it’s just lovely when you meet up ❤️❤️💕💕✨✨shi xx

Member

Re: October 2019 chemo starters

Yes I see what you mean. And the thought of really being at the complete end of the process is so appealing !

 


@Purpletrunks wrote:

Actually, although may seems ages off, it is nice to have a point in time to think about when this is all over. 

 

I agree that finishing chemo is something to be celebrated, but my surgeon indicated there would be as small a window as possible before lumpectomy, so getting this small window lined up sounds tricky 


 

Member

Re: October 2019 chemo starters

London's cool with me. Easy to get to and I'm often up there for work. 

Member

Re: October 2019 chemo starters

Actually, although may seems ages off, it is nice to have a point in time to think about when this is all over. 

 

I agree that finishing chemo is something to be celebrated, but my surgeon indicated there would be as small a window as possible before lumpectomy, so getting this small window lined up sounds tricky 

Member

Re: October 2019 chemo starters

Thanks Shi, good to have a realistic goal. So maybe that will be May.

x

Shi Community Champion
Community Champion

Re: October 2019 chemo starters

We were all done ops rads etc by about the May after starting chemo in the Oct and we had our meet up in the August just to give you bit of idea for timings. We had an apartment and all stayed together too, bit like a school trip again it was brilliant 👍 and planning it kept us focusing too ❤️💕💕✨✨shi xx

Member

Re: October 2019 chemo starters

Lovely, but I would also happily travel if we find we have a few of us in one spot. Anyone finishing chemo later than March?

 I have my tick chart now up on the fridge. One down and seems like hundreds to go! 

Love to all

kath

Member

Re: October 2019 chemo starters

I’ve had my surgery. Chemo should be done by March then radio. I’m Lincolnshire but happy to travel to the big smoke as trains are direct x 

 

Amanda 

Member

Re: October 2019 chemo starters

Hey,

Not entire sure of timescales but should be done around Feb time I think. 

 

I'm in Hertfordshire (Stevenage).

 

Claire x

Member

Re: October 2019 chemo starters

Hi Lou

yes I will also have surgery and radiotherapy after chemo, but just getting the chemo done is probably worth marking. I am North/Central London based.

kath

x

Member

Re: October 2019 chemo starters

I finish chemo in Jan, if no delays. But then have surgery and radio. I havent been given timescales for these but could probably find out. 

 

Where do you all live... I'm gloucestershire

Member

Re: October 2019 chemo starters

That’s a great idea Shia. I wonder when we are all done? End of February for me!

kath

x

Shi Community Champion
Community Champion

Re: October 2019 chemo starters

The beautiful friendships 👭you are all making on here as you 🥊🥊👭👭💪💪💪through are another thing you never expect from this but it is something beautiful that comes from something that isn’t meant to be beautiful ❤️Get your get together planned for when you’ve all finished your treatments. Us oct17 had weekend in London and a 5star afternoon tea at The Arch, it’s was beautiful to be able to hug finally and just have a special treat that we looked forward to ❤️❤️💕💕✨✨shi xx