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October 2019 chemo starters

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Re: October 2019 chemo starters

Thank you for everyone’s kind thoughts. 
Emzlew - you are absolutely right to adopt a fierce attitude about hair-loss. We need to look after us, not worry about the impact of how we look on strangers! Go you!

And I sympathise with lack of sleep Claire. Waking up in the night is a lonely experience. I am using podcasts as distraction. I have found a very dull sci fi series works wonders for me. Anyone got recommendations for when I finish it?

kath

x

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Re: October 2019 chemo starters

Hey everyone!

I'm in the midst of no sleep and shedding like a Labrador so I won't hang about today.

I had microblading done a few weeks back just before I started treatment. you can absolutely go ahead and do it now. It just might take a little bit longer to heal than usual. Mine are fine with no issues. I went to people that specialise in hair loss because of this **bleep**ty situation. 

Thank you everyone for picking me up in the past day or so. I know I have literally nothing to moan about given what some people are going through but I know you guys get it. 

Im thinking of you all, keep talking and I'm keeping everything crossed for you guys still waiting for biopsies and results. 

 

Xxx

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Re: October 2019 chemo starters

Hello again..

Can you have microblading once you've started chemo or have I missed the boat for that one?? x

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Re: October 2019 chemo starters

Hello lovely ladies ❤️

 

Had my second round of FEC yesterday, happy to report no sickness this time for me either...so far. 💪

 

Rubyblue..  Once you get started you will feel better.  The whole wait and build up is the worst part!  You will feel better knowing you have started the treatment to evict the A****OLE that decided to join you uninvited!! 

You've got this!! 💪🥊 

 

ClaireL

 

I felt so much better when I shave my hair.  I spent 2 days fretting about my hair and that I had things to do before I was ready to lose it... The day before I was so scared to have a shower as I knew it needed washing but I didn't want it falling out whilst I was home alone with the children.  I need to wait until my wife was home.. 

I just got fed up with feeling so worried about it.  Sunday I washed it and it matted into a dreadlock instantly.  I could feel it happening as I washed it?  It was so bizarre.  There was nothing to do other than brave the shave! I had all my children with me when I did it and my wife filmed it so I could send it to family and close friends.  At least it's less of a shock for them when they do see me in all my bald glory!!

It felt so liberating to do it!! 

I've been wearing beanies on the school run but I've been braving shops and hospital appointments without any cover.  It's not our fault we are in this position!! If people don't like it then bloody look away!! 

We are warriors 💪❤️🥊🥚👨🏻‍🦲

 

I've been thinking of you Kath everyday and hoping for a good result.  You cry as much as you need to!! ❤️❤️❤️❤️

 

xxx❤️xxx

 

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Re: October 2019 chemo starters

Welcome Rubyblue

getting started with chemo is so daunting but i think we all found it better once we were over that first one and could feel the relief of getting treated!

 

Sorry to hear of people’s challenges. It is tough, in so many ways.

 

 I have been so tearful the past few day. Biopsy on lung Tuesday. I just dread the outcome. 

take care all

kath

x

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Re: October 2019 chemo starters

Hey rubyblue ❤❤

 

So I'm doing ok. 3 days post 2nd treatment... not been sick this time 🎉🎉🎉, but slightly more wiped out this time. I'm expecting the FEC train to hit tomorrow. My lungs have been affected again, but as I was fully tested last time I'm not so worried this time.

 

Sorry to hear your hair is getting to you claire xxxxx mines all gone now, but it does feel lovely... like a little velvet mole. That was very insensitive of your friend... so much of other peoples reaction is about them I find! A friend asked me what stage I was, and when I said 3 ( I think?!), she burst into tears and I had to comfort her! 

 

I think we all know in here that we would rather lose our hair than our lives! I think of it as a stripping back, a paring back of the irrelevant. I just know the stronger me will emerge from the baldness... more connected to my true self. Well, on good days anyway. Other days I think what's the bloody point!!!!

 

Stay strong lovelies xxxx

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Re: October 2019 chemo starters

Hey claire

 

im in a good week but still get wiped out. Don’t feel down. It’s all just a phase that will be over as quick as it started. Have you made any plans for sans hair? I’m with you. I’m dreading it too but need to embrace it. My husband looks better in my wigs than I do 🙄!!

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Re: October 2019 chemo starters

Welcome ruby 🙂

 

Been having a crappy day because my hair is starting to go. Really been dreading this bit. A so called friend said 'i'd rather die than lose my hair' in a message yesterday which just put me on a downer. 

Also doing the washing wiped me out today. Stupid really. 

Other than that all ok here. How is everyone else doing? 

 

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Re: October 2019 chemo starters

Good luck Ruby. We have got your back and all feel the same xx

 

how are people getting on with hair loss? I did the cold cap and still seem to be hanging on in there although I’m only day 15. Other areas are departing rapidly 😳 if you know what I mean. 

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Re: October 2019 chemo starters

Hello ladies, well I wasn't sure if I was going to make it into the October group but I've just snuck in - starting on Monday with first FEC. Nervous is an understatement although pleased to be getting started!

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Re: October 2019 chemo starters

Morning ladies!!!  Hope you're all taking care and staying well ❤

 

Just following on from posts re: dry skin.  Randomly as an eczema sufferer my chemo has totally cleared my skin 🤷🏼‍♀️ weird although I'm advised that it will likely return following treatment 👎

 

Any hoo . Back to my post. I know at this particularly unpleasant time we need to pamper ourselves however let's spend our pennies wisely. 

 

Aqueous Cream - cheap, unscented moisturizer that can also be used in the bath and shower as a cleanser ( just be careful getting out as it can get slippy 😂)  also great for keeping bald heads supple.  Don't forget sunscreen/facial moisturizer with decent SPF tho if going out uncovered !!!!

 

Available from most supermarkets for £2-3. 

 

Amanda 👩‍🦲💪

https://www.google.com/search?q=aqueous+cream&safe=strict&client=ms-android-ee-uk-revc&prmd=sivn&sxs... 

 

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Re: October 2019 chemo starters

Thank you very much Lou. I will try that, it sounds exactly what I need. It’s very kind of you. 
kath

x

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Re: October 2019 chemo starters

Hi Bevrax,

 

Welcome to the group. I dont know much about Iberance, but good luck with it - do let us know how you go.

 

Both you and Kath must be finding it hard to know where your brains can go to find peace with all the talk of spreading, new treatments, and changes of plan. 

 

Have you read Exhart Tolle's The Power of Now? I listened to it on audiable a year ago and it's my favourite book. And that was precancer! You could read it hardback, but the beauty of listening is he reads it himself and has a beautiful meditative voice. If you have never used audiable I can gift you the book for free. It's all about finding peace in the present and how to not dwell in the past or the future.

 

The Power of Now: A Guide to Spiritual Enlightenment https://g.co/kgs/ciXtAZ

 

With much love, from steroid-frenzied, sleep-devoid, Lou. 

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Re: October 2019 chemo starters

Hello all

So much going on for everyone. This is a tough ride.

welcome to this lovely supportive group  Bev. Very sorry to hear you have found yourself with bc a second time. have primary aggressive triple negative and now being investigated for lung cancer. Shocked to my core. Had a PET scan yesterday and doctor says balance of probabilities say it’s lung cancer but we need a biopsy. So I have to miss chemo this week to build my white cells and protect against infection from biopsy. I don’t know the chemo you refer to - ibrance? Is that for breast and lung? Let us know how it goes. Very much thinking of you 

Kath

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Re: October 2019 chemo starters

Hello everyone,I am starting Ibrance orally tomorrow,I have been on Letrozole for the last month and seem to be ok aside from hot flushes.This is my second time with BC,the first was back in 2002 and I had a lumpectomy,removal of lymph nodes,Radiotherapy and Tamoxifen and was discharged after 5 years.This time I had gone to my GP with pain under my left armpit and shoulder,she sent me for a mammogram & ultrasound.Something was picked up in the same area of the left breast I had 17 yrs ago,they did a biopsy then and there,which came back malignant.The original plan was to have a mastectomy,before that I had to have a C T to see if it had spread.Just got my head round that only to be told it had spread to my lungs,shock was an understatement.

This was in August,I have since had an MRI,Petscan & an EBUS where they took biopsy’s of the lungs,it has been a traumatic couple of months.I don’t understand all the abbreviations used on here but am sure I will be an expert soon!I am terrified of starting 

the Ibrance tomorrow which is why I am writing this to get as much info as I can.

Thankyou for reading my story.

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Re: October 2019 chemo starters

Just do what’s right for you to get through ❤️ Like I’ve said before we all do it our own way, there are no right or wrongs ❤️ When any of you switch to the t a good cream for the dry skin you might get is udderly smooth with extra urea from Amazon ❤️ This was tip passed onto us, so passing it on if anyone starts to struggle with dry skin ❤️ 💕💕shi xx

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Re: October 2019 chemo starters

Great point about the does shi. Thanks!

 

I also have been eating beef this week.. I'm vegan but decided my health came first during this period. So beef chicken and fish are in for chemo period only. My iron is low, and I'm on omeprazole for digestion problems which lowers b12. So beef it is, dont even enjoy it! 

 

 

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Re: October 2019 chemo starters

Purple trunks ❤️ Just remember your lower dose could be someone else’s full dose, it’s all tailored specifically to you. I had my dose reduced after 1st one put me in casa nhs, so after 💩myself, I was scraped off the ceiling and took the lower dose ❤️ Thought getting some in was at least getting some in 👍 I went on life Mel honey and a steak a day too after 🤣😂🤣😂 and kept out of casa nhs for remainder of chemo 👍 💪💪💪 you are all doing amazing ❤️👭❤️💕💕shi xx

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Re: October 2019 chemo starters

My second FEC went ahead today. My onc is concerned at how strongly I have reacted to chemo, particularly my neutrafils levels. They are upping my antisickness and bone marrow growth injections, but if I respond as sensitively this time they will have to lower the chemo dose because they have to balance my health and actually get me through it. Really dont want a lower dose! 

 

The excellent news is that he felt the beastie and thought it was the same size but less dense. I also think it feels spongier! Which means it's working 🎉😭😊. Feels like the first good news since dx (just like you leaw) so I'm taking it and nailing it to the forefront of my mind.

 

Knocked for 6 this evening, worse than last time but hopefully the sickness wont kick in like last time.

 

Went for my look good feel good this avo.. was a lovely thing to do. Definitely book in if you havent yet  ❤❤

 

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Re: October 2019 chemo starters

Great to hear your positive Leaw ❤❤

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Re: October 2019 chemo starters

Yes it is a relief, feels like the first bit of good news in the last 6 weeks. I’ll keep in touch with how the picc line goes tomorrow.

 

hope-everyone else is doing well today 💪🏻

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Re: October 2019 chemo starters

Leaw 

 

Good luck for tomorrow and Friday.  Let us know how you get on.

 

Amanda 👩‍🦲❤

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Re: October 2019 chemo starters

Leaw, must be a relief about the MRI results and that lymph nodes are clear. You can now focus on starting treatment 🥊 🥊! Good luck for Friday x

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Re: October 2019 chemo starters

Deana please mention to your team before chemo about nose etc, let them make the call they are the experts ❤️💕💕shi xx

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Re: October 2019 chemo starters

That’s great Claire, glad your side effects are a bit more settled this time.

 

my nurse called earlier with my mri results, no additional concerns from the mri, just the one lump we knew about, which has now grown a few more millimetres (which I knew as I could feel it was a little bigger) it’s now just over 2cm. So pleased it hasn’t spread and lymph nodes are ok! Picc line on Thursday then chemo session 1 on Friday x

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Re: October 2019 chemo starters

My round 2 yesterday went better too. No nausea or sickness like last time and just tired today. 

Fingers crossed we are all settling in and getting the better of this. I'm even contemplating going in to work on my week off of treatment to keep some normality. Just a few hours a day maybe. 

Starting to shed body hair now though so a tough few days coming up for me. I hope the boy isn't too scared of bald mummy 😞 

 

Night all x

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Re: October 2019 chemo starters

Had problems with the account and have re registered. A bit concerned as I’m got a blocked nose and sound like I’m full of a cold but feel absolutely fine and no temperature, hopefully won’t get turned away. Just want to get going so fingers crossed x

 

Deana

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Re: October 2019 chemo starters

So Round 2 of FEC yesterday. Steroid insomnia last night but otherwise so far so good just a bit queasy but taking extra anti sickness meds which are helping. Waiting now for steroid munchies to kick in 🤦🏼‍♀️

 

Hope everyone is doing ok.

 

Amanda ❤

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Re: October 2019 chemo starters

Kath ❤️❤️ We’ve got hold of you 👭👭👭 this Oct thread is 🥊🥊🥊💪💪🥊🥊💕💕💕 everyone is pulling here kath, you keep hold tight too ❤️ Please let us know when you get chance ❤️❤️We all care 😘💕💕shi xx

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Re: October 2019 chemo starters

Welcome Redfos and hope tomorrow goes well. The anxious wait is the worst but once number one is over it's just getting the best out of your day. 

Always here with an ear x

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Re: October 2019 chemo starters

Thinking of you Kath. Sending a virtual hug 🤗

 

Amanda 👩‍🦲

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Re: October 2019 chemo starters

Thinking of you Kath xx❤️xx

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Re: October 2019 chemo starters

Kath,

Just a thought but when I was being tested for Mets, the nurse told me they have a very low threshold for brain scan. I.e. they dont have to think it's in the brain to scan, they just do so at the slightest change. Im sure it will be the same with lung. Hopefully that might give u a whisper of comfort. Thinking of you, we all have you held really tightly while you wait 😘😘😘😘😘😘😘😘

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Re: October 2019 chemo starters

Hi Redfos,

 

You are very welcome here xxxx I'm dashing to onc appt but wanted to say hi

 

❤❤❤

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Re: October 2019 chemo starters

Everything crossed for you Kath. You must be feeling very concerned but hopefully it’s nothing they can’t help you beat. 

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Re: October 2019 chemo starters

Thank you for your kindness 

kath

x

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Re: October 2019 chemo starters

Good luck Kath, we will be thinking of you x

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Re: October 2019 chemo starters

Hello everyone, 

 

I’m due to start my chemotherapy tomorrow and have been told by a friend how important this forum was in getting them through their treatment a couple of years ago.

I found my lump in August and didn’t anticipate it being anything other than a cyst- as did my GP so was knocked sideways when it became apparent that this wasn’t the case.

 

Had my lumpectomy 6 weeks ago and am due to have 12 weekly sessions  of chemotherapy followed by a further three cycles of a different drug on a three weekly basis, radiotherapy will follow. Not looking forward to tomorrow but just want to get started now as this seems to have been going on forever.

 

I’m married to a wonderful man who has been amazing, I don’t know where I’d have been without him and have two boys, 20 & 23 who have continued to make me laugh over the last few, at times rough, weeks.

 

Went back to work for three weeks after the lumpectomy as it wasn’t doing me any good being at home on my own and finished again yesterday so have a list of things I need to do/ buy today in preparation for tomorrow. Keeping busy will hopefully keep my mind off what’s to come which, fingers crossed, won’t be as bad as anticipated.

 

xx


@Mai7 wrote:
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


 

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Re: October 2019 chemo starters

Oh Kath, you must be very scared. Much love ❤❤❤❤❤❤❤❤❤❤❤

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Re: October 2019 chemo starters

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

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Re: October 2019 chemo starters

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

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Re: October 2019 chemo starters

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

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Re: October 2019 chemo starters

Well done Claire 2 down now! 
rest up xx

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Re: October 2019 chemo starters

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

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Re: October 2019 chemo starters

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

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Re: October 2019 chemo starters

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

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Re: October 2019 chemo starters

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?

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Re: October 2019 chemo starters

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

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Re: October 2019 chemo starters

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