December 2017 Chemo Starters

[Dramaminx]

Hello everyone! I too am starting chemo on 30 November after a never-ending round of scans and nail-biting appointments. They are putting me on an accelerated course of chemo which basically means I have it fortnightly for 16-20 weeks so I don't get the third healthyish week - great! It's second time around for me having had it in 1998. Someone obviously heard my plans for celebrating my 20th anniversary next year and thought they'd pull the rug out from under me. But in a way I hope some of you find some comfort in how long it has been; I was in my 20s first time round, had a WLE and radiotherapy but managed to dodge the chemo. Going to have the full works now though and believe me, treatment has moved on hugely since I was last diagnosed. It's like they create a bespoke treatment just for you depending on what type of tumour you have, rather than one size fits all. Last time I was oestrogen receptor ++, this one is triple negative, but they always have a plan. I'm also waiting for a genetics test to come back so that may have implications further down the line. But let's just get the chemo sorted first. Sorry to blab on, just wanted to introduce myself and wish each and everyone of you the very best for this unexpected road trip we're going on together. We can do this! Xx

[AnnaKarenina]

Hello Kirsty, welcome. I have only had one cycle of chemo (like you, I am doing it before surgery, then rads, endocrine tx) and was keen both to work and exercise. I managed both, although days 1-3 were less easy. I still did get out for a walk and did some reading/emailing. I find exercise a huge boon to physical and mental health. I would say be kind to yourself, listen to your body and try not to worry too much (daft thing to say I know). It was not as bad as I'd feared for me and I also found the support/community here brilliant for mood and my soul. Wishing you all the best and looking forward to getting to know you better. x

[AnnaKarenina]

Hello Lesley, I could have written that post and we are at exactly the same point. I am due for chemo 2 next Thursday. I am trying to work (I am an academic in a medical school) from home, but found days 1-3 less easy. I wouldn't say I did my best work, but it was good enough. You are so right about the getting outside/walking - it has been vital to me. I also do a bit of exercising in front of the TV - dancing, yoga, aerobics. With the curtains firmly shut obviously! 

I will be thinking of you on Thursday and wishing us both bon courage for round 2. 

[lesley62]

I've only had one cycle, next one next Thursday. I mainly work from home, email and phone based. I have cut out all but the absolutely necessary client visits. I had my treatment on the Thursday and sat in the unit doing emails etc. Thursday evening to Sunday afternoon was then a write off. The following week I was 'worked' a bit of every day but normally did a few hours, rested for a few hours etc.
I would agree, that the best way to combat the fatigue is gentle exercise - I struggled with the fatigue but did feel better for walking around the block/village, and also nibbling helps the nausea.

[Shi]

Hi, everyone copes different with the chemo, some are able to work through others rest more, there are no hard and fast rules, you do what you need to do for you and days 7-14 on a 21 cycle are when you are nadir and most at risk of infection. Your onc teams should advise you of this. 💕💕✨✨shi xx

[Sue C]

Hi

I can see the logic in having chemo on the Thursday so that you have the weekend, however many ladies find that they need at least a week to recover. Only you will know how well you cope after that first cycle. I didn't have any sickness, however I found the fatigue challenging and I couldn't leave the house for a week. I just wanted to add that note of caution!

Best wishes

Sue xx

[drbexl]

Anyone using apps to keep track of Meds - there's a Macmillan one, but I'm finding Medisafe works well (it's free!) 

[drbexl]

I work at a university, and they have let me work at home, according to my energy levels, whilst recovering from surgery. We're just discussing what's going to happen with chemo - HoD trying to make me do less, I still want to work on my research so long as I'm feeling up to it - sounds like they're prepared to be flexible, but he said you're entitled to 3 months sick pay, so take more rather than less! Obviously the university is a hotbed of germs, so no teaching. I read in another forum that someone managed to do chemo on a Thursday, and go back to work Monday throughout ... and I'm also not clear what the 'cycle' is for the weekly drugs! I do the work I do because it's important - plus just me at home, so a good distraction, although I'm defo going to take some Netflix time! 🙂 

[KirstyH]

My ocnologist told me she does not recommend the cold cap with my type of cancer so I didnt ask any more and just took her advice, so I just made the app for the wig straight away. Plan to also wear my buffs on my head.

I did the LGFB on Tuesday as well and was really good, need to practice eyebrows x

[drbexl]

Thanks 🙂 They managed to get some blood out of me for the blood tests this morning - I was only in for about an hour which was nice, as managed to get out in time for lunch with friend! Being fitted 8am next Fri, then onto chemo in the afternoon! One day at a time! 🙂 

[drbexl]

I was really impressed with LGFB too, and have been practicing my eyebrows! 

[drbexl]

I feel like I should go and check out wigs. I've got another appointment (consenting) next Weds, so might call in then! I had lunch with a friend organised today, and wanted to get back and check my heading/hot water were working again - they are! 

[drbexl]

I found these sheets helpful and not over-complex (though as always the side effects are a bit terrifying!) -http://www.christie.nhs.uk/patients-and-visitors/your-treatment-and-care/patient-information/patient...

So, EC is Epirubicin & Cyclophosphamide, then tax is Paclitaxel (Taxol) for me. 

[drbexl]

I'm going to try the cold-capping, although I am balking slightly at the realisation that with weekly Tax I'll have to have it 12 times altogether - but think will kick myself if I don't try. Got fine hair, and it's been cut pixie-ish now ... 🙂 

[KirstyH]

Thanks Ladies for replying and your advice, it is good to hear how people have been. It seems common that the first week is the worst then not so bad after that, fingers crossed it is the same for me & I will do what I can. 

Yes Ruth, things have happened so fast, with being diagnosed as such a shock 3 weeks ago,  (I am only 34 & fit and healthy - until this that is!) to stage testing, hearts scans wig appointments and everything else, but I am glad it is moving fast as I feel i just want the treatment to start asap to stop it getting worse.

Good to know we are not alone x

[Chaffinch17]

Some people are affected by SE more than others. I’m 3 cycles into 6 FEC and I find the first couple of days are a total right off but I still try to get up and walk about the house enough to do the minimum recommend 250 Fitbit steps an hour. I feel better if I can move about even if it’s the last thing I want to do. After that I usually try to get out for a walk of up to a mile then gradually get back to my 10,000 steps as soon as I can.
I also work in a small office but only work a couple of days a week normally and so far I have only worked in my last good week before each cycle. It takes a lot out of you and there is the infection risk if there are people in with coughs and colds etc which has stopped me a couple of times. It is lovely to have a bit of normality though.

[Ruth07]

Hi Kirsty some thoughts on your exercise question. I find that after my first bad week I feel reasonably strong during my next two weeks and able to do yoga and things (I just bought a bouncer to be able to do cardio without leaving my back garden) but I get tired much more quickly and physical recovery takes a lot longer. So if you are quite fit going into chemo you might find that you can still exercise on your good days but just be kind to yourself and allow more time for rest and recovery than you are used to ♥️

I am a bit limited by being post surgery and my PICC limits using my arm for strength stuff (no press ups!!) but you may not have those limitations

Good luck and so sorry to hear that you are so fresh out of your diagnosis things happen so quickly which is a good thing but sometimes I feel as if I am still trying to catch my breath and I was diagnosed at the end of July xxxx

[KirstyH]

Hi Sue, thanks for the advice, I work in an office and it is small & they have been really good about things so can hopefully dip in and out and do what I can. I will make sure and listen to my body and alter things to make them less intense, I have read a lot on the benefits exercise can have throughout treatment, but will not over do it. Good to know there is somewhere to ask questions here as well 🙂 x

[Sue C]

Hi Kirsty

Welcome to the forum and the thread.

Generally with chemo, the first week of the cycle is the worst. So if you want to continue working, the following 2 weeks are doable. Having said that, it's impossible to predict how you will react and so this first cycle is a real learning curve. If you work in  public place, eg, in a school, it is not possible to work throughout chemo because of the risk of infection.

In the first week, some ladies like to get out for a short walk each day and find that helpful. After that, I would just do gentle exercise. If you push yourself too much, it can make the fatigue worse. Like I say, it's a learning curve, so just listen to your body and take things steady.

Please come and chat whenever you like.

Best wishes

Sue xx

[Ruth07]

Hi Ladies just popping over from the October thread - as Meesh says taking a diary or notepad to all your appointments is helpful for keeping all the info together. When tracking meds I use reminders on my phone but Sue one of our ladies writes everything on a calendar which is also a great way of keeping track. The hospital may give you a sheet of your meds but that varies as mine does not.

Like Lesley I also delayed getting in touch with GP as I was ill over the weekend but needed my sickness meds tweaking and had further changes for cycle 2. I had rotten morning sickness so am definitely susceptible. I also had acid reflux as a result and am on lansoprazole which made a huge difference straight away so do let you GP know if you get reflux as it is very common to go on a PPI during chemo.

Good luck everyone - so sorry you are on this journey too - but we are all here for you ♥️🦄✨

[KirstyH]

Hi ladies, I am new to this site and so far have only been reading lots of threads, but wanted to now join this thread as I too start my chemo on 30th November. This is also my very first treatment as just diagnosed 3 weeks ago and having chemo first, then surgery then rads then tamoxifen. I am having 3 x FEC then 3 x Tax + Herceptin. I have been at work since I found out, apart from days spent at the hospital for all the tests! But I am hoping to still be able to work as much as I can throughout treatment, I also do a lot of exercise so hoping I can keep some of that up as well, dependant on side effects. We will need to wait and see. Be good to hear how others are getting on throughout the treatment and any tips. Kirsty, x

[Chaffinch17]

The key thing or infection and bloods seems to be your neutrophil level. These are the white blood cells that are our first line of defense against infection. Normal levels I believe are around 5-6 most people in chemo have levels 2 or less and units vary on their cut off point for chemo to go ahead some like mine will do it at 1 others need 1.4. Some people are given a precautionary course of antibiotics along side chemo if there is a suspicion of infection before a treatment. Hope this helps

[Chaffinch17]

Make sure that your team are aware of this because I think that they tend to start low on anti sickness meds because not everyone is badly affected. I am very like you I hadn’t been sick for about 10 years until about 6 months ago when I had a reaction to some oysters then I was sick twice first cycle but Now had 3 and although the nausea has been pretty bad for the first 48 hours I’ve not actually vomited.

[lesley62]

Hi Nikki, I can't help with the infection issue very much, but my understanding is if there is sign of infection they will delay a week. But your onc should be aware of your history. Have you had your chemo assessment yet? As for nails, yes I think you need to get it removed. Best advice is to wear black or very dark nail varnish during T as the ultraviolet reacts with it to bugger your nails up. To be belt and braces I am wearing dark nail varnish throughout to try and preserve them. But you need to be carful of products, they need to be on the gentler side of things.
xx

[JC1262]

Hi Sam, I was given 3 different anti sickness drugs. 2 to be taken on days 2-4 and the other on days 5-9. I also wore the travel sickness bands for the first week. It's important to take your medication as advised. I had the feeling of nausea, a bit like morning sickness, for about 5 days. If your medication isn't working for you then tell your team and they can alter it for the next time.
I found I went off milky drinks so drank ginger tea, with ginger biscuits. I also sucked gin gins (Holland and Barrett, Amazon) but some people prefer pineapple cubes, pear drops, murray mints, riccola herbal sweets.
Good luck with your treatment 🤗☄💫

[lesley62]

Morning Dec Ladies

I am from the November thread.

I can only echo the advice that you have already been given.

I am on the FEC-T cocktail with a side order of zoledronic acid for 3 of the 6 and then every 6 months for 3 years.

The only things I would add is around your medications.... as has been said, take everything and if it isnt working.... let everyone know about it.  I suffered for 5 days with nausea, I was sick on day 1 and day 2 and then the hospital meds stopped, the nausea for me was overwelming.  I wasnt sick again but it is still debilitating.  I tried to 'work thru it' and 'not bother' anyone, which in hindsight is absolutely ridiculous!  When I did contact the unit, they advised me to contact my GP to get alternate meds.  Within 90 mins of ringing the GP surgery I had new tablets and was feeling better than I had for 3 days.

If you are given the injections then a possible side effect can be  severe joint pain.  However, if you take Clarityn - the over the counter hayfever tablet one a day alongside the injections, it does help to counteract the pains starting.  I took the Clarityn in the morning and did the jabs at night just before bed and only had one episode of pain on the last day which was relieved with 2 ibruprofen.

The other thing you will find that might be puzzling/alarming/worrying is that although we are all on very similiar chemo treatments, the bits that go with these treatments can be very different from one trust to another.

Some only give injections if your blood count is low - some give for 10 days, some for 5.

Some give sterioids and anti-emetics prior to chemo, most seem to start on the day and send you home with a large goodie bag.

Some trusts give Vit D and calcium tablets to run throughout chemo - others dont do anything.

So dont worry if people are talking about stuff that you aren't aware of.

And finally, use the forum.  the October ladies have supported us so much thru the beginning of November, and we have walked in your shoes as you build you to your first session.    No comment or question is too stupid.

Really sorry to have 'met' all you girls ..... but always here for you!! 

xx

[Mamadeacs]

Oh I’m having FEC btw.

[Mamadeacs]

Morning ladies...I have a couple of questions.
I keep getting infections (started one yesterday, last one two weeks ago), they dipstick like a urine infection with protein and leukocytes sometimes blood and temp but when sent to lab they say not a urine infection. My GP says clearly there is infection there but they don’t know where. Trimethoprim generally clears it. This is 8th bout since end of June. GP didn’t want to send me to urologist while cancer treatment going on. Would this affect my bloods during chemo do you think?
Second question simpler...do I need to remove shellac during treatment?
Nikki xx

[Sue C]

Hi Sam
Sickness can depend on the chemo that you're having. I had TC and wasn't sick at all. Also there seems to be a correlation between chemo sickness and sickness during pregnancy. You will be given medication for it. The trick is to take it regularly even if you don't feel nauseous at the time. Unfortunately the first cycle can be trial and error, so if you have problems, let your chemo team know and then they can try something else. Some of the lades on here are also using a sea band, so I'm sure someone will come along shortly to tell you about that.
Best wishes
Sue xx

[SamH87]

Hi everyone. I have a real fear of vomiting ( either me or other people around me) — I also know in the grand scheme of things that this is a small price to pay over the next 6 cycles!!
Is it inevitable that I will be sick or are the anti sickness meds generally pretty good? I know everyone is different but is there a general feeling?? Xx

[Meesh73]

Hi December ladies, not wanting to bombard you with information and advice but a couple of other tips. Keep a journal that way you can record everything in one place and refer back to it through the cycles as there is often a pattern to the SEs and how you feel, it also helps you see that there are good days which can be a positive thing.

Lots of us from the October thread have bought and worn travel bands/ sea bands to help with the nausea, we're not sure if they work but I wear mine for about a week after treatment. Oh and don't eat your absolute favourite thing on chemo day as it'll put you right off it!

The waiting and not knowing is the worse, the administration of the actual treatment is relatively simple. Once you all get going with it you get to know the SEs and how to handle them and get into a bit of a routine. I've also been doing a bit of yoga and meditation each day which is also supposed to help with fatigue and mood.

Oh anyone cold capping? I usually take paracetemolx2 and ibuprofenx2 about an hour beforehand. The first 5-10 mins are the worst after that it's ok. Make sure they get a good tight fit. Treat your hair gently, I wash mine day before chemo and then just once a week using warm water with a jug. I style daily just using my fingers. I would recommend a shorter cut as you will still lose quite a lot and it can become matted.

Good luck to you all🍀🍀🍀🍀🍀⭐️🌟⭐️💫🚂🌟⭐️💫✨

[JC1262]

Hi Bex, I've just had a portacath fitted as my veins are narrow. It's under my arm - hopefully they be using it on Friday for my 2nd chemo.
The insertion wasn't too bad, the prep & paperwork took as long as the insertion (around 2 hours). They couldn't take my blood from it today as you need a trained nurse.
Good luck with everything & well done for starting this thread 👍
🤗☄💫

[JC1262]

Hi December starters. I'm a November starter just about to have 2nd FEC on Friday  ( I am on 6 cycles  of FEC-T, these are my prescribed chemo drugs). This forum is  a great place to chat to others going through a similar journey to you. You will experiencing all sorts of worries, but you're not on your own  - we've all been there.  If you have any thoughts or questions just ask them here because someone will be able to help you.

I was recommended to drink 2l of liquid on the day before, day of chemo & day after. I also have a spoonful of manuka honey daily. It's also important to try and go out for short walks as this helps fight off fatigue . Take all your anti sickness medications as advised and remember your chemo team are there to help you. They will give you a 24 hour helpline number, just call them if you need to.

Sending you all hugs and I wish you well on your journey

🤗🤗🤗   💫☄💕

[Chaffinch17]

Another October starter here. I’m 6 x FEC then Herceptin and rads.
My advice, don’t suffer in silence, if you are sick after first treatment contact your team and they will sort you out with extra anti sickness and mention any SE to your oncologist or chemo nurse at next appointment and they will tweak your meds.
I had low neutrophils (white blood cells)after first cycle and was only just borderline for having treatment 2. I’d heard that Manuka honey can support your immune system because if it’s anti bacterial quality. I have had a teaspoon of the Tiptree 10+ sold in Morrisons morning and night during cycle 2 and it seemed to help because my levels were much better before cycle 3.
The best advice of all I would say though is just take it one day at a time because really bad days are often followed by really good ones so don’t look at the whole daunting journey just live in the here and now.
Best wishes all x

[scooterbek]

Thanks Shi for all the top tips. I'm just putting together a shop list for Boots chemist & Holland & Barratts. Luckily a friend of a friend works at H&B so will get 50% discount in December.
I went on LGFG course last week & was so impressed with the way it is run & all the lovely products as gifts. I have been practicing applying more makeup for when I really need the confidence boost.
Scooter

[Shi]

Another thing if you are not already aware get signed up for a look good feel better day, your Mcmillan centre should be able to book you onto this, you get beauticians giving you makeup tips and you also get a bag of goodies to take away. 💕💕✨✨shi xx

[Shi]

Hi Dec starters I’m from Oct thread, few things to get before starting chemo, silk pillow case gentler on head and scalp, biotene dry mouth slosh, sudocream, anusol, senokot (usually start these day after chemo to stop steroids backing you up) always drink over 2l fluids a day really important. If on fec, then ice lollies while they put the red one in, helps preserve the mouth. If you get sore mouth get onc to prescribe difflam mouth wash. When going onto t chemo paint your nails with black varnish and keep skin moisturised, I use acqueous cream and for nail beds vitamin e oil. Just a few tips I hope you find useful and take it one treatment at a time, there is a lot of love and support on these threads and we are all in it together, we have ladies mentoring us on our thread and you will too. Wishing everone 💕💕✨✨shi xx

[Otter65]

Hi December ladies

I'm from the November group on this 🎢🎢🎢🎢🎢🎢 I had a WLE in September and after original begin told I wouldn't need Chemo after a Onotype test results I did😹 I'm having my 2nd FECT tomorrow

These threads will help you get through this🎢🎢🎢🎢🎢🎢🎢 and are a great place for advice or just to have a rant

My advice is make sure you drink plenty the day before and on the first few days after to help flush it out keep on top of your anti sickness meds 

[scooterbek]

Hello & Good Evening ladies. Bex thank you for starting off the December thread. I also begin my chemo 1st Dec. 3 EC 3 Docetaxal & Herceptin. I had a lumpectomy in Sept, 2nd WLE to gain clear margins & lymph node clearance in Oct. Trying to get myself organised before 1st with haircut & wig fitting appoint'... I have followed Oct & Nov threads & thank all the ladies on there for sharing your journey so far.
Scooter X

[Meesh73]

Sam, TC, FEC and EC are all types of chemo you'll probably also hear Fec-t as that's another common one.

mamameacs, sounds like you've found your local centre. I would advise anyone to ask bcn what is available in your area as you can often access complimentary therapies which are usually free (I'm having 6 sessions of reiki). The centres also usually organise the Look Good Feel Better which are free workshops where they show you how to do make up and you get a goody bag worth about £250 all high end products. It's something nice to look forward to during treatment. If you haven't got a local centre you can go on the LGFB website and find out where they hold it near you.

[Sue C]

Hi Sam

Good question!! It is possible to look this up. Go to the bc websites only though, dont google. There does seem to be different names for different drugs. Treatment is totally individual depending on your BC. 

The most common seems to be FEC, but mine was TC. Do you know what you're having?

Sue xx

[Mamadeacs]

Hi all...I start my chemo 30th November too. I have had two WLE’s and SNB and having 6x FEC, followed by Herceptin, radiotherapy and hormone tablets (don’t know which ones yet). Had 5 inches cut off my hair last night...have been worrying I am really vain bothering so much about losing my hair but now realise we all go through the same sort of emotions. Today I went with a friend to the shop in the oncology unit that organises the wig appointments (booked in next week) and bought two skull caps then over to the Maggies Centre and promptly dissolved before I even said hello. They were amazing and clearly very used to that sort of entrance and took me off to a lovely little quiet area...lots of questions, suggestions and follow up. Totally lovely, next time I promised not to grizzle and stay for cake! XX

[SamH87]

Thanks for the tips ladies! And good luck to all of us starting over the coming weeks.
I do have a questions and please forgive me for my ignorance!! I keep hearing TC , FEC, or just EC etc... what do these stand for?? My medication doesn’t seem to fit some of these abbreviations??
X

[Meesh73]

Hello December ladies, I'm from the October thread just thought I'd pop by to wish you all luck🍀🍀🍀🍀 with your treatment. I had chemo 3 last week and am halfway through fecx6, I'm also cold capping so feel free to ask me any questions if there are things you'd like to know I'm not an expert but I'll try to help if I can as I've found the forum invaluable for support, tips and laughs. Feel free to pop along to our October thread and post on there we're a friendly bunch.

I've been relatively lucky so far re SEs and have got off lightly compared to some so you'll probably find it may not be as bad as you think. I hope the chemo treats you kindly and you suffer minimal SEs.

First tip for you - if you're suffering or unsure of anything call your chemo number straight away, they can give advice or meds to relieve things or just put your mind at rest. I called nearly every day for 4 days after first chemo, nothing serious just small worries which they confirmed were all normal things.

[Sue C]

Hi Ladies

Just popping in to welcome you all and thank you to Bex for starting the thread.

I had chemo last year, so if you have any questions please ask.

My general advice is to prepare for that first week, when you may get sickness and fatigue. Stock up the fridge, sort out the washing and have all your meds at hand. Then just sit back and rest. If anybody offers help, then say yes! It's time for others to look after you!

I will pop in from time to time, but if I miss a question, please feel free to PM me. I might not know the answer, but I can point you in the right direction of someone who can help.

Best wishes

Sue xx

[rabbit28]

Hello ladies, I will be joining you in December have my chemo induction on 1st Dec then they will give me a start date to start a few days after the 1st.  I had lumpectomy beginning of October, will be having 6 x TC with Herception then 12 herceptin injections, another op after chemo, then radiotherapy, then Tamoxifen.

I think everyone is aprehensive and the waiting is the worst bit. Once we all get started and help each other along the way hopefully it won't be as bad as we imagine!! xx

[drbexl]

Hey Sam. Everyone says 'it's not going to be nice, but take one treatment, any side effects, one at a time', and most say they are surprised at how fast things go. Ask for meds for every side effect... 

Sure we'll grow more tips as time goes on! 

[SamH87]

Hey! I’m starting mine next Thursday 30th so Can I please join this group too. I’m super scared as I have been told by the oncologist that the treatment is a tough cocktail of different things... so any tips will be most appreciated!!!
My chemo is before my surgery.. so next week is officially the very start of the treatment!!

[drbexl]

Hi all

Can't see a thread for this, so hoping good to start one! Just confirmed yesterday that my chemo starts on 1st December (the Christie, with Dr Chittalia), after having had mastectomy towards end of September. Kicking straight off with a portacath insertion as twice I've been sent home from scans as unable to get a cannula in. Will have 3 x EC, and 9 x weekly paxatol...

Joined Optima trial as was hoping might be one of the lucky ones to avoid chemo, but nope. Blogged a bit about some aspects - http://drbexl.co.uk/! 

Bex