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March 2020 Chemo Starters

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Re: March 2020 Chemo Starters

Thank you Ju72 

 

It is all so overwhelming at times. So much info to take in and an emotional overload. I did need to take some time out today. I visited a fantastic Macmillan drop in centre and they were so lovely. 
I do hope it all goes well for you on Thursday and Friday. One appointment one day after another without much time to process so take care of yourself. Feel for you already.
It really did help me to post on here today so thank you everyone. Feeling more positive again.
Sending love and hugs 🤗 💕 

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Re: March 2020 Chemo Starters

Hi Shefgirl 

thank you so much for your reassuring message. I did feel like hiding away today but I did go for a long walk and felt a lot better afterwards. You are right though. I just needed to get it out. 
Good luck for you with all your treatments. I hope you don’t feel too battered along the way. Sending love and hugs 🤗 💓 

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Re: March 2020 Chemo Starters

Hi Salsa

Feeling the way you do is perfectly normal. The fear of the unknown really messes with your head. We all need time to process the information and we all have set backs. I've powered through my diagnosis and accepted all the treatments but not without a few major meltdowns. 

I'm feeling positive currently but yet to start chemo,  which is this friday. I have a meeting with my oncologist on Thursday so I'll probably be feeling exactly like you do. 

Give yourself time to process the information given and I'm sure you'll come back stronger and ready to kick a$$. 

Take care 

Julie x

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Re: March 2020 Chemo Starters

Hi Salsa

All your worries and fears are completely normal and we all have off days when it seems overwhelming but you will get there. 

This is my second lot of BC and one of the main lessons I’ve learnt is not to ignore those fears and emotions. I powered through my treatment in 2017 and then hit a brick wall emotionally. Forums like this helped me massively plus the BCN Moving Forward course. Also doing a bit of regular exercise when well enough. 

This is a scary time when everything is being done to us and we can feel powerless but you will get to a point of taking back control and looking forward again. Hang in there and use this forum to express your fears and seek help and advice. 

Take care xx 

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Re: March 2020 Chemo Starters

Thank you so much. It is all a bit overwhelming. I’m going to my local Macmillan drop in centre I think for tea and sympathy and then I’m going to treat myself to a lamb dhansak while I can still taste anything. Sending hugs and love to all of you. 😘

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Re: March 2020 Chemo Starters

Salsa140 

I’m sure everyone on here would agree that the whole way through this your emotions change all the time.Remember you are given such a huge amount of info at these appointments and it’s understandable to feel emotional.Take one day at a time and we are all here for each other.Sending lots of hugs x

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Re: March 2020 Chemo Starters

I am about to start and had the introductory briefing yesterday. My brain was completely fried at the end of it. After two other medical appointments later it I got home feeling a total emotional wreck. I was eager to have the surgery and I know I want chemo to be able to say everything was done to reduce the risk of it coming back, but now I’m terrified and just want to cry all the time but can’t . Feeling numb I think. 
I want to feel positive about things and was doing so well but right now it doesn’t feel so great. 

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Re: March 2020 Chemo Starters

Thanks Jowels. Nervous but eager to get it started at the same time just so I have a better idea of what the side effects are like. Good luck with starting yours next week. I’ll let everyone know how I get on. Tracy

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Re: March 2020 Chemo Starters

Hi Helen, I’m nervous but just want to get it over with so I can see what side effects I have to deal with. It sounds like you’ve had a stressful week with the misdiagnosis. Sounds like you’ve got the same treatment plan as me. I’m not looking forward to the herceptin because it’s injected into alternate thighs and I hate/am frightened of needles. I wonder if you’ll still have a PICC rather than a cannula as it’s every 3 weeks now. I’m having 3 weeks of radiotherapy about 6-8 weeks after chemo finishes. I’m grateful my husband is coming with me tomorrow for moral support. Don’t think I’ll get much sleep tonight.

 

Look forward to hearing how you get on. We can do this! Tracy

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Re: March 2020 Chemo Starters

Hi Wildspur20, I’ve read somewhere that something light like toast a couple of hours before chemo helps. So I’ll be trying that tomorrow morning and hope it helps. I’ve been told I’ll be given anti sickness stuff before the chemo. The nurse who did my pre assessment told me I’ll be kept supplied with tea or coffee, snacks and they provide a sandwich for lunch. Only hope I feel like eating. I’ve got a 9am appointment so have to drop my daughter at breakfast club before school so I can get there on time. 
I’ve bought some ginger biscuits to help with nausea just in case. Also some queasy drops (sweets). 

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Re: March 2020 Chemo Starters

Hi everyone 

just wanted to say good luck for those of you starting chemo this week.Im starting next week and like you all I just want to get on with it now. 

so sending big hugs to you all,remember one day at a time,we can do this.

Jowels x

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Re: March 2020 Chemo Starters

Also quick question. Is it better to try and eat breakfast before chemo or will it just make me feel sick? Do they automatically give you anti sickness tablets? TIA

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Re: March 2020 Chemo Starters

I just wanted to say hello to everyone and thanks for the advice so far. Chemo #1 tomorrow for me. Helen x

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Re: March 2020 Chemo Starters

Good luck for C#1 tomorrow tmmorriss. How are you feeling? I just want to get the show on the road so I know what I am dealing with. It was a strange week last week as I had numerous hospital appointments - one with my oncologist who told me I had been misdiagnosed! So, I went from triple negative to HER2 positive/ER negative/PR negative. Same as you I think? This all came about because I signed up to a clinical trial and when they tested my tumour they said it wasn't HER2 negative. So now a totally different treatment plan which is better in a way! So I start EC tomorrow every 3 weeks for 9 weeks, then Taxol every week for 12 weeks, Herceptin alongside. Then radiotherapy I assume. So much to take in. I haven't had my PICC line put in yet either. Its going to be a long day at hospital tomorrow. I will let you know how I get on. Take care, we can do this! Helen

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Re: March 2020 Chemo Starters

Hi Julie

Thanks for the info. Will have a look on the NHS site you mention. 

My chicken noodle soup worked well at lunchtime...thankfully

Good luck for your treatment on Friday xx 

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Re: March 2020 Chemo Starters

Hi Shefgirl 

Glad you are managing the side effects and your first session went ok. 

I read they recommend the Mediterranean diet on the nhs website or check the eatwell guide out again on the nhs website. 

Your doing the right thing though from what I've read , eating little and often.  I suppose it's best to eat what you fancy. 

As I've not started chemo yet ( this friday is my first session ) I cant really recommend anything yet. I have batch made some veg soup and frozen it down so if I'm feeling rough and dont want to cook I can just grab it from the freezer. 

Hope you continue to cope well with the SE . 🤞

Take care 

Julie x

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Re: March 2020 Chemo Starters

Hi Julie and everyone starting chemo this week

I had my first round of FEC last Weds and managing the after effects ok. Found the anti sickness meds very effective but did knock me out so stopped taking after day 3.

Biggest change is what to eat and when. Feel like I have constant morning sickness and the body is craving white carbs e.g.pasta, rice, porridge,chicken! Everything plain and bland with some dried fruit thrown in. And need to eat small amounts throughout day. Making myself a chicken noodle soup to try and reintroduce some veg and colour to my diet.

Be interested to know how you all get on and what foods work for you?

Managed to take a walk to the shop but forgot my purse! Early days!

Take care everyone xxx 

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Re: March 2020 Chemo Starters

Thanks for the info Edinbird x Hopefully I'll be ok at swallowing them too! I did ask if they could operate on my sternum as the spread there is so small, but apparently it's a big operation and my onc hadn't seen it done successfully. So, yes I should imagine I'll be on the tablets after chemo and maybe indefinitely, which seems a bit daunting. Perhaps it all depends on how I react to the IV chemo. I keep jumping ahead, which I shouldn't do!

Your thumb sounds sore, I hope it heals quickly x

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Re: March 2020 Chemo Starters

It’s two weeks on one off so about 10 weeks to go. Yes the tablets are big but actually I manage them fine, I always used to struggle but I think these have helped me manage all tablets better.

 

They generally only give TN girls it if you have residual tumour left after chemo and in lymph nodes too, in case there are any cells floating around that haven’t been got. You’d need it since they can’t operate on the sternum can they. If there’s no evidence of spread they tend to avoid giving extra chemo for the sake of it. My stomach has actually been ok on my 4 off days so far! But my thumb is being a pain it split open and keeps bleeding periodically I just need it to settle down

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Re: March 2020 Chemo Starters

Thank you Shi for such kind comments xx and please thank the Oct'17 girls for continuing to keep hold of my gold hot pants! :heart: xx

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Re: March 2020 Chemo Starters

Thank you very much Edinbird for taking the time to reply to me. So you've got 3 more cycles to go? Is it 3 weeks on and 1 week off? I wonder why the tablets not given as a matter of course to all TN's as we can't take Tamoxifen etc to give a bit more protection? Bit worried you've said the tablets are quite big, I even have to break a paracetemol in half to swallow it! I don't know definitely that I will be having chemo tablets after this chemo, but I should imagine I will be to keep the small spot in my sternum stable. Sorry that you've had some problems taking the tablets and hope the issues around them will clear up as soon as you finish xx

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Re: March 2020 Chemo Starters

Hi Jencat ❤️ You’ll be big resource of help for the March thread ❤️❤️ March thread Jencat is a beautiful lady who was on our oct17 chemo train 👍👍 and we’ve still got hold of her kylie gold hot pants 👭👭 she’s amazing ❤️ Those of you coldcapping, even if you do thin on it everyone who’s continued all the way through with it have been pleased they did and I’m sure some will pop on with tips and tricks for you on coldcapping ❤️💕💕Shi xx

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Re: March 2020 Chemo Starters

Hi Jencat xx Susie told us Feb 19 girls that you’d had a recurrence 😕 hopefully you’re doing ok.

 

The tablets aren’t that bad, I can definitely tell they’re building up I’m on my off week cycle 5 so three more cycles to go. I’m feeling pretty bloated all the time and my stomach is a nightmare - not diarrhoea but if I eat I need the loo about 10-45 mins after so I have to plan what I’m eating when and where. Off weeks had been worst I’d get cramps from leaning forward ever so slightly or curling up in bed, if I straighten out it subsides fairly quickly though but I have to sleep like a stiff board! This time I’ve been ok off week but I discovered if I lay off cheese it helps. I’ve got the tiniest bit of hand foot syndrome the tops of my thumbs are peeling, right one is particularly sore but it’s not spread over the past two months and nothing on my feet. I don’t moisturise much because I have sweaty hands and feet so it’s hard keeping the thumbs ok and I actually made it bleed at circuits earlier! 😬

 

I feel a little queasy sometimes and I’ve not been sleeping well because of my stomach. Sometimes I wear myself out and take myself off to bed in the afternoons but I don’t tend to sleep then either. I’m just trying to keep busy doing at least one thing every day. I’ve been going to yoga and circuits twice a week.

 

The tablets are quite big and I find it a pain to have to get up to eat and take them if I don’t want to get up! You just have to. Off week is better but I have to be up for yoga on a Saturday and bloods on a Monday so I don’t get as many chances to stay in bed!

 

With IV chemo you’d know you’ll have a few bad days then get a bit better but this is constant and I’m not sure how I’ll be when I wake up. But it’s manageable for sure, just a bit demoralising when it’s longer than IV chemo. I had 6 rounds of that and 8 of this.

 

Don’t want to put you off! Some people on my Facebook group have all sorts of issues but you can get a dose reduction, but loads of others have no issues at all xx

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Re: March 2020 Chemo Starters

Hi Edinbird, I noticed that you said you're on chemo tablets. I think I will probably have to have them after chemo because of the small spread to my sternum. Just wondered if you've found there are many side effects with them or are you able to carry on more or less as normal? x

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Re: March 2020 Chemo Starters

Hello March ladies, I will be joining you all sometime this month, but I don't know when yet! I was part of the lovely Oct'17 group, who are still supporting me. I was diagnosed in June'17 with TN bc and had a lumpectomy, chemo (FEC-T) and rads. I had a clear mammogram last August, but unfortunately I was diagnosed with the same bc in January and after staging scans, they found a tiny spread to my sternum.

At the moment I am waiting to see if I can have a new chemo only just approved by NICE. I was told last week that I have been accepted to have it, but my biopsy has to now be analysed and my oncologist said I've got about 40% chance of being a match, so fingers crossed! If not, I will be having Carboplatin on a 3 weekly cycle, but I don't know how many. 

I'm 60, so a bit older than you and I've got two adult daughter's. My eldest has come home to look after me whilst I have chemo! :smileyhappy:

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Re: March 2020 Chemo Starters

Hi I started this journey in November . Stage 2 grade 2 , invasive lobular bc 25 mm, had  a lumpectomy and sentinel node biospy in December . I recovered well from the op. Results from biospy showed 2 nodes positive so I had full level 3 anc on the 14th jan. Again recovered well although underarm is still numb and I've been told this may improve but not totally go for life. Had ct scan and full body bone scan both clear ... phew what a relief that was. I'm having 3 cycles of ec and 3 docetaxel starting the 6th march. I'm a single parent with 2 boys or should I say men age 22 and 17. They've been amazing so far. I'm going with the cold cap I'm determined to struggle with the 15 mins of pain until my head goes numb ( this is what I've been told ) in preparation for this ive had my hair cut short ( was shoulder length ) as again ive read that the cold cap may work better with short hair. I'm prepared in my head for this not to work. I've bought a very funky wig from headscarf by Ciara, should I need to use it. Deep cleaned my house and insist on everyone washing hands when they walk through the door and then use anti bac gel. A little ott I know . Really nervous about the coronavirus as a few people are being treated in Sheffield hospital. To which I'm only 15 miles away. I eager for chemo to start so I can get on with the rest of my life. Although I am starting to feel a little nervous about all the side effects etc. Like everyone else is. 

Good luck to everyone starting chemo this month , I hope we can be a great support to each other. 

Julie x

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Re: March 2020 Chemo Starters

Hi Shi 

oh yes you are right -I’ve already found that out about certain “friends “,luckily I have my true besties how are truly supportive.The world is sometimes a strange place! However Im learning to let it go and using all of my energy on postive things.
thanks for the tips they all add to the stuff I’ve learnt so far.Glad you doing ok now 

hugs 

Jowels x

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Re: March 2020 Chemo Starters

Jowels 👍❤️That’s fantastic ❤️ I was oct17 chemo thread. 👭we all still speak daily and get your meet up planned when you’ve all 👭😳😁😂🤣😂💃🏻💃🏻🕺🕺💃🏻💃🏻Got each other through, it’s so lovely when you meet up ( but do over pm on here) the threads are open to the world, keep safe. We had 5 star afternoon tea in London 😁 it gave us something nice to look forward to when we’d all finished treatments ❤️ Pace yourselves 👭focus and you’ll get each other through. Don’t be surprised if people you thought were close friends disappear during the journey, it can happen, they have a beam me up scotty moment like it’s catching, then when you are through they beam back down again 🤔 just wanted to tell you all so if it does happen you won’t be confused or hurt ❤️Just take care of yourselves and each other and do everything your own way and in your own time ❤️ 💕💕Shi xx

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Re: March 2020 Chemo Starters

Hi Shi 

yes that’s where it’s going I have  the form and envelope ready.My hair is long so it will help them I think ❤️
like you say a positive ♥️
hope you doing ok x

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Re: March 2020 Chemo Starters

Jowels ❤️Please think about donating your hair to little princes trust who make the wigs for children ❤️ I did with my hair, made it not feel like a waste and doing something positive for others and gave me bit of control ❤️💕💕Shi xx

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Re: March 2020 Chemo Starters

Hi Tracy 

I completely agree the breakfast and after school club is a god send in this situation.You just never how you feel one minute to the next.It is so hard with such a young child but also that’s what keeps me smiling ♥️

i start week after next and have woken up with a cold -no clue how as my house is like a hospital with hand gels,cleaning products  and I have avoided mixing with people shops etc.Unfortunatley I have very changeable Asthma so I’ve had to increase my meds for that so I can shift it by chemo.You  just couldn’t write it could you!

i havent been given my wig voucher but am booked to cut my long hair next week and will donate this.I will be cold capping if this is available but told them I don’t want to delay my treatment any longer.Ive been off work 4 months (due to a delay in diagnosis)now so keen to keep moving forward.

so pleased your daughters school have been supportive.My sons school have also been and keeping close eye on him too.I read mummy’s lump to him and have been honest from the beginning.It is hard though for sure.

Ive ordered a huge shop from asda with foods I may eat when having chemo so I’m as organised as I can be.Want to get on with it now.I keep telling myself the sooner I start the sooner I finish !

im going to get a little white board and write the dates of cycles down and mark them off one by one.In the interim im clinging onto any normality I can find (sometimes hard).

sending a hug for Tuesday and lots of luck .Let us know how it goes.

hope everyone else is doing ok 

jowels x

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Re: March 2020 Chemo Starters

Hi Jowels, 

I start FEC-T chemo on Tuesday. Nervous but at least once it starts I’ll know what to expect and also how my body reacts to the chemo. I’m 53 years old with a 5 year old daughter. Bulldozed really does sum up a cancer diagnosis.

 

I’m lucky that we’re able to use breakfast club at short notice for my daughter if needed so I can get to medical appointments. We also send her to wraparound every day (after school club) so hubby can pick her up on his way home from work. We thought that would make things easier for me if I was suffering from fatigue. She absolutely loves it which is reassuring for me and makes me feel a bit less guilty. Her school have been really supportive and I’ve kept them up to date throughout my cancer journey.  They’re keeping an eye on her but so far she seems to be coping really well. 

Sending you and everyone else a big hug xx

Tracy

 

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Re: March 2020 Chemo Starters

Hi Shefgirl,

At least you gave the cold cap a try. I’m too much of a coward to even think about it. I had my hair cut short into a pixie style before mine starts so it won’t be as upsetting when it starts to fall out (in theory). 

Your hubby was right not to be too hard on yourself. There’s such a lot to take in and it’s understandable some stuff will get forgotten along the way. (I had a text from my daughters school because I’d forgotten to order her school lunch - and I haven’t even started my chemo yet!). Well done you on going ahead with it despite the four attempts to find a vein. 

I’d read about the pink wee but didn’t realise it would happen so quickly. Thanks for the stay well hydrated and ice cubes tips. I hate the thought of being sick but haven’t been given anything to take prior to treatment. I start FEC-T chemo 3rd March. 

Take care and stay in touch xx

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Re: March 2020 Chemo Starters

Hi Wildspur20, sorry it’s taken me a little while to reply. I spent half term feeling rotten with a cold and chesty cough. Not what I needed with chemo looming. At one point I can remember thinking how will I manage chemo if I feel this lousy with a cold.

 

How did your pre assessment go? Mine wasn’t quite what I was expecting and the nurse who took my bloods was quite new to the unit so said she’d have to ask one of the other nurses if I had any questions. I got my wig voucher at least which means I can go ahead with my wig consultation which I’ve already booked for 7th March. I did get shown around the chemo suite though which was reassuring. I wasn’t given any sickness meds to take prior to my first session though. So I’m waiting until my first chemo on Tuesday this week to ask any questions. I was hoping to come away with some useful hints and tips of how to get through chemo but I’m making do with what I’ve read myself in the Macmillan and Breast Care Now publications. I also hadn’t realised that the flu jab is recommended before starting chemo but when I asked at the pre assessment I was told not to worry about it as we’re almost out of flu season. So that’s left me feeling a little anxious. 

 

I’m feeling a little more positive as my hubby is coming with me to my 1st chemo session. I’d already been given information leaflets on FEC-T and herceptin when I met with my oncologist at the beginning of February and I know that I’ll be having chemo every 3 weeks. I think it’s the fear of the unknown and how I’ll react to the chemo that’s playing on my mind at the minute. 

On a positive note I really recommend the Look Good, Feel Better workshop. The goody bag provided by the beauty industry is amazing but also I was surprised by what a difference it made to me emotionally after spending an afternoon with other ladies going through cancer treatment. A bit of make up really did make me feel better. The ladies who run the workshop were really helpful and tea or coffee was provided by Macmillan volunteers who help facilitate it. 

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Re: March 2020 Chemo Starters

Hi Helen

thanks for your reply and sorry not to respond sooner. 

First bc in left breast and needed lumpectomy and rads and tamoxifen. 

2 years later a new primary in other breast was er and pr negative but HER2 positive; in other words a completely different type of bc. Didn’t know that was even possible!! Found during my annual mammogram- despite being 3.5cm I didn’t feel it and no symptoms! Thank goodness I was in the system as Grade 3. Hence need for chemo. 

Feel very lucky they found it and it is treatable. Nasty shock for me and my family but trying to be positive and take each day as it comes. Hope you are ok? 

All the best

Ange x 

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Re: March 2020 Chemo Starters

Hi everyone 

hope you don’t mind me jumping on this thread-I’ve moved from January surgery to here.

hope you are all doing ok,managing in whichever we can.

im starting FEC 6 cycles in a weeks time.Had a wide excision,mamoplasty and SNB jan 14th.

I’m 40 and my amazing son was 4 when I was diagnosed after being told I had a cyst that required regular drainage for weeks.Trying to make the best of it all but as you all know quite a bit to get your head round.

im keen to start chemo but equally dreading it.Im also a nurse which I think in this situation is not helping!

ive been reading all your posts which are helpful.Im hoping to try the cold cap and have super long hair so getting a bob next week.

i have an amazing support network which  so grateful for.My husband is my complete rock.Hope you all have someone looking out for you.This group is a real help as we all know how it feels to have your life bulldozed.

Sending everyone a big hug 

Jowels x

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Re: March 2020 Chemo Starters

Thank you so much Shi - you got me 😉 I like to take control and have things done with ASAP... I will take one thing at a time - but already have in my list to do  to stock up senokot tablets 😉 😘 

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Re: March 2020 Chemo Starters

So started chemo on Weds with round one of FEC. Forgot to take my anti sickness meds one hour before treatment and felt really annoyed with myself! Hospital were great and sorted me out and hubby told me to stop being so hard on myself. 

Next issue was finding a vein which took 4 attempts! Going to wear gloves and take a hot water bottle next time. Nurse also said I need to be well hydrated. She also advised ice cubes to suck as metallic taste with one of the drugs. Oh and pink pee almost immediately! 

Anti sickness meds very effective and no actual sickness so far but feeling a little dizzy and a touch of indigestion. Having to have an afternoon nap too as fatigued. The weather is horrible but think a walk and fresh air will help. 

Ordered a wig as decided cold cap not for me. 

Take care everyone and keep in touch xx 

 

 

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Re: March 2020 Chemo Starters

Juliana 👭❤️ You are doing amazing, you found something and got it checked out and your team will have seen it all before and know what to do. Just take things one treatment at a time, it is 🤯 when you get diagnosis but lots of ❤️👭and might not seem like it right now but you will have a lot of 🤣😂🤣😂between you when you end up sharing botty block tips (it will happen the steroids will do it) nothing that but of senokot, movicol or prunes won’t take care of) ❤️ Use the threads ❤️ The ask the nurse and the someone like me ❤️ Always ring your rapid response ❤️ You are in control, might not feel like it but you are 💪💪💪 look out for mountain lion story by strawberry blonde it’s inspirational 👍💪💪👍👍👍💪💪💪😘💕💕Shi xx

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Re: March 2020 Chemo Starters

Hi all, 

I’m 44 years old, mother of a 14 year old daughter, 12 and 7 year old sons. I live in Harpenden, Hertfordshire and I’m having treatment at the Luton & Dunstable hospital.  

I’ve found a big lump on my left breast on the 2nd of December and on the 16th December I received biopsy results-  grade 2 invasive ductal carcinoma (both oestrogen and progesterone positive  and HER-2 negative), and they also detected DCIS on right breast - MRI did not detect the cancer in the lymph nodes, and size just above 3cm. I was in shock, but also determined to have a good time during Christmas!  I then had a bilateral mastectomy on the 23rd January and results then were worse than I (and the doctors!!) expected.... not a good time at all (I feel some tears coming as I’m writing about it) - the tumor is actually grade 3, size 5.5 cm, and has spread to one of the two lymph nodes that were removed on the left side. Skin was also involved and few margins very small....  needless to say it has been a whirlwind of emotions but I’m feeling better now that I’m not too sore post operation, and trying to remain positive! I like to believe that I’m a positive person! I have been given a date for the first chemo session - 12th March and will have a pre-chemo appointment on the 6th March. My treatment will be 3 cycles every 3 week of EC, then another 3 cycles of docetaxel every 3 weeks too. This will then be followed by surgery for lymph node clearance and decide what to do about the skin - going flat with later reconstruction or only remove part of the skin and see what tests says. Well, that’s a conversation to have with the surgeon in 6 months...

I’m glad I found this group, and the tips and messages on previous posts have already helped me a lot! 
I’ll give a go with the cold cap - I’m dreading it as I’m always cold.... but will try. I used to have wavy long bob hair and decided to curt it much shorter - if hair falls out it will come back to normal sooner, right?! 😉 and I was even told I look younger 😉 I think for me it is all about taking control (when I can...) 

I’ve had a wig consultation and will order a short straight bob if my hair falls and right now I’m feeling good and even went to the gym with a member of the Well Being team supported my McMillan - it was great! I guess I’ll do that as much as I can now and will try to exercise everyday 😀 I’m hoping I don’t feel sick and will definitely going to let my nurse know if I do!! The list of questions for the pre-chemo appointment has been very useful - I’ll ask many of those questions too 

love to you all, let’s our journey begin....

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Re: March 2020 Chemo Starters

Sleep on and off... I’m definitely finding the tablets harder but it’s doable. Look forward to your message 😊

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Re: March 2020 Chemo Starters

Hi Edinbird

 

Thank you so much for replying. I’ll private message you re meeting up and your support group sounds like a lovely thing I would like to be part of.

 

Hope you managed to get some sleep in the end! x

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Re: March 2020 Chemo Starters

Hi Bel007 xx I’m from the February 2019 group, one of my fellow year ago pals spotted you and let me know so thought I’d say hi as I too am in Edinburgh and I did Cardiac Care and needed a clearance. I’m still on chemo albeit tablets as I’m triple negative so chemo first which didn’t get a complete response so this is the only mop up available I can’t have letrozole or anything like that. So your treatment is totally different but you’re not much older than me (I’m 40) and you’re local! I stay in Liberton although I’ll be moving to Danderhall soon. Cardiac Care was easy although I did have to have my pills reduced as I nearly passed out in the shower! 🙄 but the benefits were definitely worth it and I hope to do the aspirin trial once I’m done chemo. The nurses in ward 1 are absolutely lovely. There’s a social group called Shine which is for people in their 20s 30s and 40s who have/had cancer it would be lovely if you wanted to be part of that we are pretty new and always looking for more people! Just meet up for drinks/coffee every few months and the charity buys the first round! Of course we understand that people won’t always feel up to it if having treatment but hoping to get more members.

 

If you fancy meeting up for a chat I’m happy to try and answer any questions, I cold capped too if you’re thinking about it I got my wig but never needed it and have plenty of hair a year on although it’s all different lengths! Drop me a personal message if you want to catch up in person or let me know on here if there’s anything you want to ask openly. My oncologist is Dr Hayward and I have Miss Yip for surgery.

 

Lots of love, it’s so daunting at the start so happy to help 😊 I’m up as I don’t sleep well on my tablets my tummy is always complaining! xx

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Re: March 2020 Chemo Starters

Hi all

 

I was diagnosed back on September 17th 2019 (that date will be etched on my mind for ever!). It was ER positive so I was started on letrozole and zoladex as peri-menopausal. Staging tests showed suspicious growth on ovary so I had full hysterectomy and removal of tubes and ovaries in December...wham bang into full menopause! But the silver lining was that I no longer need to be on zoladex as don’t have any ovaries 😊 Turns out the growth was not malignant which meant I could then get on with treatment for breast cancer. I had axillary node clearance on 6th February and went to clinic today for my results. 


6 out of the 15 nodes were positive so I’ve to have chemo and radiotherapy. They could never find the primary tumour in my breasts despite multiple MRIs and biopsies so it was only today that I finally found out that it is invasive lobular cancer, grade 2 that I have.

 

They said chemo would start in about two weeks so I figured I’ll be in this March thread 😊 I’m to have Epirubicin and cyclophosphamide every 2 weeks for 4 cycles, then paclitaxel every 2 weeks for 4 cycles. They are going to give me biphosphonate infusion half way through first group of cycles as they say it not only strengthens bone density which the menapoause has weakened it also reduces risk of recurrence in bones in future. I think they said that will be very 6months for the next few years. 

I’ve agreed to join a trial that monitors heart muscle throughout chemo as I figured I’m happy for them to monitor anything if it might help in the long run. 

I was given a prescription for a wig so that’s top of my list to go see about and I’ve emailed my local Maggies centre to see if I can attend their next ‘look good, feel better’ session. 

Once chemo finished I’ve to have radiotherapy. 

I am 46yr old mother of one, live in Edinburgh. 

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Re: March 2020 Chemo Starters

Hi Shi, thanks for your message. The questions are the questions that I will be asking today! I posted them for Tracy who also has her pre-chemo appointment....Just comparing notes 😊 But thanks for your comments 😘

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Re: March 2020 Chemo Starters

❤️Wildspur ❤️ all questions you need to ask your unit as first point of call ❤️ and the ask the nurse facility on here ❤️ everyone has different chemo treatments, it is tailored to your bc by your onc. Treatment times can vary too it all depends on which chemo you are having and if you are having anything else alongside it depending on which type of bc you are being treated for. Cycles can vary too, some are on weekly cycles and some on 21 day cycles again your onc will advise you. Your on will give you antisickness meds and any tuning else to take too, you might also have to do daily injection to boost white blood cells, but again these depend on your treatment plan from your onc. If your antisickness don’t work, let your unit know they don’t want you struggling through if they don’t work they will tweak if they need to till they do the trick. I’d get another check at dentist if I were you they will get you straight in when you tell them you are starting chemo. Your bloods will take less than 5 minutes to take and you should see your onc before chemo, they will keep eye on everything during chemo.  Get thermometer to keep temp with during chemo, anosol cream, senokot tablets your bum will block with steroids 😳 look after your skin during chemo moisturise. Oral hygiene is a must, difflam mouth wash too. You should get a wig voucher from your trust and you can check out your Macmillan at hospital for pre loved wigs or you can coldcap, discuss with your unit also others in here will give you tips in coldcap. Supplements and exercise discuss with your unit ❤️book your look good feel better sessions with your Macmillan units ❤️ if you work in a school again discuss with your unit and follow their advise, germs are a big no no when on chemo ❤️ I painted nails black during chemo to preserve nails, others used a nail treatment you need to protect from uv light. I know others have had ginger nuts for sickness and sucked frozen pineapple for sore mouth, I was lucky no sickness or sore mouth. Did get uti after first one, burning wee but no temp so rapid response were called and in I went to casa nhs for 6 days because it needed immediate antibiotics. You can’t be blasé during chemo you need to be vigilant and keep safe ❤️❤️ just pace yourselves take it one at a time 💪💪💪you’ll all get through together, if anyone has long hair, please think about donating it to little princess trust, they make wigs for children and give them to them free👭❤️big ❤️❤️to March starters 💕💕Shi xx

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Re: March 2020 Chemo Starters

Good luck for tomorrow Tracy. 

 

Sorry for the late response. We have just got back from skiing today - with a 24 hour delay in getting back. My son was delighted he got to spend the day at the airport rather than school!

 

So, these are my questions, not in any particular order...some will not be relevant to you!

 

Chemo Questions!

 

 

• If I am not chosen for the clinical trial will my treatment plan change?

 

• What drugs will be used for my treatment and when?

 

• How long is the actual treatment?

 

• Please explain ‘cycles’!

 

• What drugs will be prescribed to take before treatment? Steroids / Anti sickness?

 

• What should I buy to prepare myself for any symptoms?

 

• Can I take paracetamol?

 

• Dentist. Had a check up on 5th December - do I need to go again? 

 

• See hygienist every 3 months - should I cancel until after chemo?

 

• Menopace - confused about soya isoflavones and link to breast cancer. Should I stop taking?

 

• What supplements can I take/can’t I take? Multi-vitamin?

 

• How long is appointment on a Monday to take my bloods before my Tuesday chemo?

 

• PICC and exercise - what can’t/can I do? Weights? Yoga? Pilates?

 

• School and germs! Should I go in the classroom?

 

• Cold cap instructions / wig

 

• When can I lie on my side with the scar?

 

 

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Re: March 2020 Chemo Starters

How did your appointment go today Shefgirl?

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Re: March 2020 Chemo Starters

Hi Shefgirl, so sorry to hear your breast cancer came back. I’m 53 with a 5 year old daughter. Hopefully we can all support one another and keep our spirits up as we start our chemotherapy journey together. 
Take care, Tracy

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Re: March 2020 Chemo Starters

Hi Wildspur20, 

 

Sorry for not replying sooner. I had a cracked tooth removed under general anaesthetic at my local hospital on Thursday 13th February. I’m a nervous patient so need sedation or general  anaesthetic to get any dental work done apart from a check up. I’ll lucky that the dental team pulled out all the stops to get the treatment done as soon as possible so that there’s time for it to heal before my chemotherapy starts on 3rd March. 

I was diagnosed on the 17th October 2019 and had to put a smile on my face at my daughter’s 5th birthday party on the 25th October. Christmas was also tough because I knew I had the lumpectomy on the 2nd January and I was terrified of the surgery. I was worried in case I didn’t wake up from the general anaesthetic and even went so far as to buy my daughter a heart bracelet to remember me and also chose  the music and readings for my funeral. I smile when I think back on it now but at the time it gave me the reassurance that if the worst happened my husband knew what I wanted. It must have been a really tough Christmas for you being diagnosed just beforehand. 

My daughter was conceived naturally and if I’m honest she was a lovely surprise as she wasn’t planned but we were both over the moon when she came along. I got a few looks being a first time mum at 47!  I bought the Mummy’s lump book but adapted it and put it into my own words rather than read the actual book to her.  I told her that Mummy had a naughty lump that needed to be removed otherwise it would make Mummy really sick and she’d need to be careful just to hug me on my ‘good’ side as the other side would be sore after the doctor operated on it.  I told the school early on about my diagnosis and they’ve been really supportive and are keeping an eye on her. I haven’t felt up to announcing my breast cancer diagnosis in the school mums WhatsApp group although I’ve told a couple of the mums whose children are good friends with my daughter. I’ve got my wig consultation appointment on the 7th March and am taking my daughter along so she’s involved in choosing a wig so hopefully it won’t seem as daunting to her. I’ve also bought a night time beanie to wear in bed once I start treatment so that any hair will come off in the cap and hopefully won’t be as upsetting as seeing it on my pillow when I wake up. I’ve decided I’ll probably wear a wig to do the school run as I don’t want her classmates to ask what happened to my hair and why I’m wearing a hat or headscarf.  I like the fact you’ve already started wearing something on your head to get other people used to seeing it like that though. 

I’ve got my chemo pre assessment the day after yours on 26th February and it would be nice to share any questions. I’ve made a start but have got some more information leaflets from Macmillan and Breast Care Now to read through before my appointment. 

My oncologist didn’t mention the menopause so that’s something I’ll be asking about at my assessment meeting. Part of me thinks ‘great’ menopause symptoms as if cancer treatment side effects aren’t bad enough!

 

I hadn’t thought about getting the flu jab so I’m pleased you mentioned it. 

My op site doesn’t seem to be as sore after the 2nd lumpectomy although I did have a PICO dressing after the last operation. I’ve still got 3 paper stitches that need to be soaked off in water though. I’ve got a full range of movement back after the sentinel lymph node biopsy. No blue skin but I did have an allergic reaction to the blue dye so they might have tried to flush it out of my system to ease the symptoms. It’s just over a month now since my operation. 

I enjoy bullet journaling (think mix of to do list and traditional diary/journal) and have started a separate cancer journal to capture my thoughts and experiences along the way. I’m finding it quite therapeutic and it’ll be interesting to look back on in years to come.  I’ve also set up a private blog on Caringbridge website/app so that I only post once to update all my friends and family as sometimes even now I struggle to remember who I have and haven’t updated. One less thing to worry about once treatment starts in earnest.

 

I hope you enjoy your half term holiday and look forward to sharing questions with you when you get back. 

Take care, Tracy