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May chemo starters 2018

Shi Community Champion
Community Champion

Re: May chemo starters 2018

Hi tracymac, a lot of us got a support type vest thing from m&s and h&m so we didn’t feel too naked and they were good because no chaffing like a bra would, keep your skin moisturised, slap it on in the loo at work, I know I sound 🤪🤪🤪but it will help, what cream have you gone with? Linda sounds like you have a plan there darling, 💪💪💪did you check the pub out? 💕💕💕✨✨✨Shi xx
Member

Re: May chemo starters 2018

Thanks Shi,
This is really helpful. Just left work to attend my 2nd session. I can't go braless whilst at work (well I could but may get some stares), so will do this at home as much as I can xx
Member

Re: May chemo starters 2018

Managed to arrange echo for Friday where I'm having op. Had mrsa swob today again & got blood test on Monday. Also having blood pressure done on Friday. May stay over on way back as seen a nice pub.

Shi Community Champion
Community Champion

Re: May chemo starters 2018

Hi traceymac well done getting first rads ✔️ off 👍👍 try and get as much air to your skin as you can while at home, keep cream in fridge and handbag and keep slapping it on, keep your fluid intake up too, it’ll help with fatigue, still pace yourself. Skin can start to sizzle a bit by week 2, your rads team will keep eye on you but if you have any concerns raise them with them straight away 😘😘also go bra less while on rads, this is where loose scarves come in hand just wafting down the front of a blouse or jumper 😘😘can you have music playing in your unit while it’s being done? Found shutting eyes and pretending to be on a Sunbed on the beach helped 😁😁💕💕✨✨Shi xx
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Re: May chemo starters 2018

Had my first radiation treatment this afternoon.
Can I ask you ladies who have finished ypur rads how it all went?
Member

Re: May chemo starters 2018

I just sent you a private message.

 

Many thanks!

Member

Re: May chemo starters 2018

Ellen I have had 7 cycles and my legs are weak now I have noticed. If you send me your e mail address I can add you to the facebook group.

Member

Re: May chemo starters 2018

I've been absolutely fine on that front until now - but glad to hear it's normal.... I am going to go part time at work until after surgery - mid-November..
Member

Re: May chemo starters 2018

Would it be possible to join the Facebook group?

 

ktk
Member

Re: May chemo starters 2018

That is normal Ellen. Even the slightest effort leaves me exhausted. I do about five minutes of housework then have to lie down for the rest of the day!! Kx
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Re: May chemo starters 2018

I have now had 7 of 8 sessions (which started in May) and am really noticing lately that I'm very tired as I get to the end.  Is anybody else noticing this?

 

 

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Re: May chemo starters 2018

I can't send you a message but if you can send me your e mail address I can add you to the facebook private group.x
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Re: May chemo starters 2018

I am having surgery on the 22nd and am also on the October surgery thread. Not sure if you will be on this thread though as I was having op 4 weeks after last chemo but its been postponed due to bloods. We have set up a FB group so you can join that?

Member

Re: May chemo starters 2018

Hiya.  I'm triple negative so my chemo is taking longer as well.  I did 4 ACs (every 3 weeks) and have now done 9/12 weekly Paclitaxel / Carboplatin and will end 23rd October. Then a 4 week break followed by an elected double mastectomy.  

Member

Re: May chemo starters 2018

Hiya.  I'm triple negative so my chemo is taking longer as well.  I did 4 ACs (every 3 weeks) and have now done 9/12 weekly Paclitaxel / Carboplatins and will end 23rd October. Then a 4 week break followed by an elected double mastectomy.  

Member

Re: May chemo starters 2018

Hello - I am new to the forum and started the first of 8 sessions of Chemo in May - I have now had 7 and will have my 8th session on 17th October.  The Tumour Board will meet on 18th October and then they will decide on which operation I will have - either masectomy or lumpectomy.... is there anyone out there that is at the same stage as me?

ktk
Member

Re: May chemo starters 2018

Glad you’ve got your date sorted. Let me know how you are getting on. Kxx
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Re: May chemo starters 2018

I have a new date now in a couple of weeks so at least I know the reason it was cancelled now & have a date to work towards. Need to get an echo done as chemo can damage your heart & a blood test a week before surgery. May need to go back to the hospital in London but am hoping not. Also need an MRSA swob.

Member

Re: May chemo starters 2018

Part of the top layer of my nail has come off. I stopped using dark varnish last week which was 3 weeks post final chemo. Does anyone know how long I will have to wait for my op to be rescheduled? x

Member

Re: May chemo starters 2018

Hi Tropic_al
Just sent you a message 😊
I’ve still got nail varnish on- nurse and I decided 6 weeks- no scientific reason!
My nails are still there😊, the pain in my fingers is slowly going so I think it was nerve damage not nails.
Einstein is a great description of my hair too.it’s not sure what colour to be- currently have white, grey, blonde and brown! One of my children has ‘golden ginger’ hair - they hoped it would come back the same as theirs- would have been lovely. Eye lashes just starting to grow back- oh I am looking forward to being able to wear mascara once more and look less like a chemo person😊.
Take care xx
ktk
Member

Re: May chemo starters 2018

Hi Tropic. I’ve had the nail varnish on for five weeks. Took it off for a few days prior to final chemo and had them redone yesterday. Seem ok. I’ll leave it on until the end of the month I think. Let the chemo get out of you system. Just guessing!!! Kx
Member

Re: May chemo starters 2018

Hi all,

so sorry for my radio silence. I had my planning scan then decided to nip off on a few days away in the sunshine in Dorset and to Bristol to see family to celebrate finishing chemo and having a short break between treatments 😎. So nice not to be worried about temperature fluctuations etc. Just what the doctor ordered. Back on Sunday for Herceptin, permuzutab infusions yesterday so back to earth with a bump, although I seem to be ok on these. Taste buds returning although can't seem to enjoy some foods since chemo that I liked before..hopefully that will change. 

I still have my dark nail polish on..no problems with nails..not sure when to remove it but desperate to take it off and air and oil my nails..anyone know?

 

My hair is starting to grow..I look like Einstein with mad white hair! Keeping it under the bandana till I can have a decent cut.

 

 

I start rads next Monday..looking forward to it in a strange way as just want to get on with the treatment. It finishes two days ahead of my 50th birthday at the end of October. No massive celebration planned yet, a small one hopefully, but will plan some belated ones down the line for sure when I have more energy 🎉.

 

I hope everyone is getting on ok now with op plans, treatments etc..and holiday plans!

 

I'll look at my message now and hopefully join the FB page tonight to see your lovely faces 😁.

 

will be in touch soon,

 

Tropic xx

 

 

 

 

 

Shi Community Champion
Community Champion

Re: May chemo starters 2018

Hi Linda, sorry ops been postponed, it’s good they are keeping you safe and not taking any chances 💪💪💪you can do this easy after the chemo ❤️❤️Trust me 😘😘😘and great you’ve done your reason, lots of us have so hopefully it will secure funding so vital for all of us and future generations 👍👍👍💕💕💕✨✨✨Shi xx
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Re: May chemo starters 2018

My op has been postponed as blood test results are too low. Wbc are 1.99,  haemoglobin 101 and neuts were 1.36! X

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Re: May chemo starters 2018

I am 19 days post last taxotere and still feeling the fatigue and achy legs. I am wearing the dark nail polish and still have all my nails so far although one or two feel slightly different, a little numb in the fingertips.

How is everyone doing? How are rads going? I start my 15 sessions next week so looking forward to an extra week with no treatments.
Member

Re: May chemo starters 2018

The NHS are deciding how to spend 20 billion pounds so please go to the Breast Cancer Now site to add your reason if you think it should go to BC. Sorry I can't copy the link. I have done this already.x

Member

Re: May chemo starters 2018

HI, Jem!

 

I have just sent you my fcebook link in the message box xx

 

This is my last week of radio before moving on to the boosters week on Monday.

Another CT scan tomorrow as so far I've been using the breath hold technique but they don't use the breath hold for boosters, so need knew photos.

Member

Re: May chemo starters 2018

My neuts and wbc`s are low so having another blood test on friday before i have op. I wonder if time of day makes a difference? x
Member

Re: May chemo starters 2018

Hi Tanya how are rads going for you ? Do you finish this week?
I’m day 3 of rads- going ok.
I’ve sent you a message re Facebook - look in message box at top of this page. If you need me to resend just let me know. Hope you can join us soon xx
Member

Re: May chemo starters 2018

Hi Tropic_al how are you? Hope nails still behaving - I’ve still got the dark polish on. How’s you legs? Walked 3km today - I’m determined to push through to 5 a day but t my legs ache,
I’ve sent you a message re the Facebook page- look at top of this page and click on message box. If you can’t gind just let me know. Hoping you can join us soon xx
Member

Re: May chemo starters 2018

Hi Sarah
Have you finished rads or is it your last week. Hope all is continuing to go well.
I’m doing ok- 3 down. The treatment is in a very small place and I same people treat me each day. I’m quite emotional but I think everything has caught up with me. Just taking 1 day at a time.
I’ve sent you a private message re Facebook page- let me know if you need me to resend - look in your message box at top of page- hope you can join us soon xx
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Re: May chemo starters 2018

Leanne fantastic news 😖🎉🎉 enjoy Majorca🏖 and take it easy xx
Member

Re: May chemo starters 2018

Hi Linda
My nails started to flake at the tip and were peeling in layers so I’ve cut them very short and will probably keep them short now until I fijnish chemo in December. I do miss them. Fingers crossed for the third.
X
Member

Re: May chemo starters 2018

Still having toilet issues/pain when go to the loo & my nails are looking like the top layer may fall off! Am on day 21 now & getting worried I won't be right for my op on the 3rd. I havn't called up yet but have a picc line appointment tomorrow/blood test so will discuss then as the nurse is really helpful. Maybe I have been over doing it although yesterday I had a massage & she suggested drink more water as constipated & got aching thighs.

Shi Community Champion
Community Champion

Re: May chemo starters 2018

leanne ❤️❤️❤️👍👍👍👍Blooming marvellous news darling have a wonderful holiday in beautiful Majorca it’s such a beautiful island and we’ll be raising our virtual glasses to toast you 🍾🍸🍷🍻🥂😘😘😘💕💕💕✨✨✨Shi xx
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Re: May chemo starters 2018

Great news Leanne, enjoy your holiday 😎
ktk
Member

Re: May chemo starters 2018

Well done Leanne. Enjoy your well deserved holiday!! Kxx
Member

Re: May chemo starters 2018

Well had appointment with oncologist this morning. That’s it for me. Just tamoxifen for the next 10 years and to ring if I have any concerns as I had bilateral mastectomy don’t need regular checkups. He said he will write to see about me having the genetic test. Then next year a few tweaks and nipple tattoos.
This time in 2 weeks I will be in Majorca celebrating the end of my treatment!! Yay 😁 xxx

Hope everyone is doing ok xxx
Member

Re: May chemo starters 2018

I always ask for anti sickness drugs so should be ok but ta 4 tip Shi. Hets how old r u? Nice to see photos on fb. I now have a sore bottom when go to loo so going to take a laxative. Should have taken 1 yesterday.x
Shi Community Champion
Community Champion

Re: May chemo starters 2018

Jem, please don’t worry about rads, make sure you air your skin at home and also go bra less for duration of rads and after for a few weeks, carry cream in handbag as well as keeping in fridge and keep slapping it on, dr organic aloe Vera gel with tea tree gel was good and also moo goo from Amazon, think other ladies have used e45, Aveno too. Oh yes and mission for your rads club will be to get your fellow rads people up for a dance every session 😁😁😁😁💃🏻💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻 As we all waiting in the Sunbed Louge 😎😎😎 🤪🤪🤪🤪💕💕💕✨✨✨Shi xx
Member

Re: May chemo starters 2018

Hi Jem!
I'm two weeks in and have no burning or discolouration at all.
I'm using E45 cream once a day, twice if I remember.
The only side effect I have from radio is fatigue, which has got worse in the last three days, but part of that could be due to the chemo...or the very early mornings.
Please don't be anxious...after chemo rads is a walk in the park Smiley Happy

Sarah xx
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Re: May chemo starters 2018

Sarah what an awful time you’ve had today. I’m pleased you managed to get another oncologist to look at your situation.
I’m only having 15- I queried if needed 20 and he said I didn’t as no node involvement. I’m 48 so under the 50 year mark- all seems so confusing.
How are you finding rads ? Are you suffering with fatigue or burning? Beginning to get anxious once more.
Have a good weekend Jem xx
Member

Re: May chemo starters 2018

@JemPD  New Year meet up sounds perfect!

I will send Facebook details now.

 

As for finish date...well that was a traumatic radio today!

 

Ever since my meeting with the radio oncologist in August I have had in my head 7th October as a finish date - 3 weeks radio followed by an extra booster week. However, at a routine review meeting with a radio nurse, when I mentioned that two weeks in I was happy to be at the half way point she said ''oh no - you've only got one week to go, not two - the oncologist cancelled the booster week after the radio planning session three weeks ago!!!''

I was completely thrown by this as when I'd queried the extra week at the time he'd said it was because I was young (!) pre menopause and it was a grade 3, in his words, ''particularly nasty cancer''

The nurse couldn't understand why it had been cancelled and not discussed either and the consultant is on holiday.

So another nurse brought some paperwork where it was apparently noted that the consultant had assumed I was younger than I was - 51 - and cancelled the booster when he realised as the cut off is under 50s!!!

The other reason was clear margins, although they weren't clear after the first op so I had to go down again.

It was all quite traumatic and I was shocked...I felt I'd been given the best treatment option only to have it taken away with no explanation - but the upside was that after an extra hours waiting another consultant was really appologetic, said in her opinion a grade 3 cancer with positive lymph nodes almost always requires a booster week and reinstated them.

 

Sarah x

 

 

 

 

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Re: May chemo starters 2018

Is it possible to do group private message group on here?? X
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Re: May chemo starters 2018

Oops Mayor not major!!!

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Re: May chemo starters 2018

Good morning lovely ladies, another windy day here- hoping Audrey behaves. I'm off to an opening of a new sensory garden at school with major and the paper coming - please don't abandon me Audrey!!!

ive sent messages to you all - if your look at your messages tab at the top of this page. 

If I have missed anyone huge apologies, please either private message me or post on here. Looking forward to sharing next steps with you all on Facebook.

when will everyone finish their active treatment? I finish on 12th October. Perhaps we could think of a meet up in the new year?

 Jem xx

Member

Re: May chemo starters 2018

Morning all .. firstly jacq sorry that you have more chemo to come but those docs have a plan .. good luck .
I have been given my plan this week . Scan was good news so i am having a therapeutic mammoplasty ( lumpectomy) on both sides . I was a bit surprised by this but i think its because i am quite a big cup size on top and would leave me lopsided. So I will have smaller manageable breasts i think. I think the theory is if what is taken is tested and proven i need more surgery ie mastectomy then the ‘ok’ breast will be smaller in comparison. I will also have complete node removal. It was all a bit to take in . I also found out that following rads I will have no further treatment except for three weekly heceptin. So no tamoxifen. I was hugely shocked by this but because my cancer was er negative ie had no ostrogen so therfore it didnt require tamoxifen. I knew I was her2 positive but hadnt realised about the ostrogen negative . You take so much at the beginning. I think my brain had been programmed to taking a tablet for the next five years and that would help with reoccurrence. I think they need to give me an asprin everyday so i will think that taking a tablet everyday is doing something ... ( brain melt!) ..Anyway concentrating on getting better for op in three weeks time . Still sleeping a bit during day post chemo but hoping to pop in to school unofficially for a few hours to keep in touch . Will scare everyone with my appearance. My short hair is thinned and completely grey and I would love to dye it but I know I have to wait👵 ! Hope everyone doing ok xx
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Re: May chemo starters 2018

Hi Jem thank you for the encouragement, it really helps 😊 I did get answers yesterday about my weirdly shaped boob but also discovered that I have cancer in five of the lymph nodes removed, so need the four more chemo and an urgent scan! Hate the use of the word urgent as that’s what my mind has fixated on 😟 So glad that Audrey stood the wind test, it’s a nervous time of year for us follically challenged ladies! 💨 💨 💨 Looking forward to the FB group. Will you be messaging us via email or on this forum?
Jacq x
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Re: May chemo starters 2018

Jempd i am having a therepeutic mammoplasty on 1 side which is breast conserving surgery with a lollipop scar so hoping to heal fast all being well.x
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Re: May chemo starters 2018

Hi JacqB I hope you got the answers you needed today.
When does part 2 of your chemo start ? We are all here cheering you on to the finish line.
Linda- some good ideas, as always, from Shi . To add to it- I had a small zippy bag/make up bag that was easy to reach with wet wipes, lip balm, mints, phone charger. Are you having reconstruction at the same time ?
I’m starting to send messages to you all re Facebook - look out for those messages.
In the wind today I was a little worried ‘Audrey’ would make a bid for freedom in the school playground!! Tried to casually run my fingers through Audrey but was trying to hold on to her without looking slightly wierd! The good news we remained together and no one looked at me strangely!
Xx