November 2015 chemo starters Please join!

[Tracy Johnston]

Hi again November ladies,  at last had some great news, my CT scan came back clear, no spread !!  Phew !!!  Chemo start date 16th Nov,  4 x EC then 12 x Taxo ( i think thats right).  a little break then for lymph node removal, a little break again and the radio therapy ( its nice how they call them breaks isnt it, just like having a holiday, yeah right !!)  I know that being tested and poked and prodded and them finally diagnosed is absolutely horrible, but when you have been given your chemo schedule, its sort of another road and you've somehow moved on from that initial diagnosis era and start to concentrate on the treatment, the side affect, the hats, bandanas, wigs etc.  ive been on ebay and bought loads of beanies and yes I also bought a russian hat (as mentioned in a threat below).  Tommorow I am going to a place called Dimples, they sell wigs, hairpieces and strangely enough stick on eyebrows !!.  Its clear from the recent messages on this thread that losing our hair is a major worry, but at least we are going into winter where nearly everyone will be wearing a hat !!   Is anyone considering a Cold Cap ???

[JenJen]

Janey x it'll be nerves I get like that just want to scooch down in a hoodie under a duvet and still feel cold. xx

[Kazzer52]

Just popped over from the October 2015 thread to wish everyone good luck thats starting their treatment this week. I'm having my second TC chemo tomorrow so sending virtual hand holding to anyone starting tomorrow. I can honestly say that the nurses in the chemo units are fantastic and it isn't half as bad as we think, I was a nervous wreck beforehand but came away thinking 'that was ok what was I worried about'. Good luck x❤️ 

[Janey1973]

Ah thank you Jen Jen. Getting nervous now and feel really cold and shaky this evening. Just can't get warm - I am so hoping it is nerves and not a cold!! I don't know what I'd do if there was a delay

Good luck raiti and Jen Jen. Your so right we can do this and we will!!

Lots of love XX

[JenJen]

Janey x love and hugs for tomorrow, ratti love and hugs for the 4th we can do this!! xx

Im starting the 9th now

[JenJen]

Marie I have appointments galore between now and the 3rd and my brain is fried so may take a tech break so if I dont get on before xx big hug for your first session xx

[Babypink]

I got two wigs yesterday one long one mid length. I love the long one been practicing putting them in and off

Investing semi permanent eyebrows found a lady that does work for NHS for breast reconstruction and chemo treatment. It's a bit expensive but she seems spot on and comes recommend

Don't get me wrong I felt rather conspicuous with my wig on but we had a laugh in the shop. The really expensive one was sort of 1977 flick type looked like a park star lol. But I did like it. So went for one not dissimilar but with a fringe and a bit shorter. But don't look like a porn star (I hope)

[Janey1973]

Thanks all for the advice going for my onc nurse appt and bloods at 10 this morning so will may sure I pop in to see after. I sure I remember seeing the shop there at my last appt. Any excuse for a bit of retail therapy 😉.

[waveylocks]

Re hats & scarves -look for Headlines -they are based in your cancer hospital or local cancer support centre. They have very cheap scarves (3.00) Which are 100% cotton (sit firmly and don't slide and warm but not sweaty on your head), and other head ware. Will give advice on fitting. In my area first scarve was free. 

You can use scarves or beanies under hats -give extra warmth when outside and also if you go back inside you can simply take hat off and still have another hat underneath if you don't want to expose head. (A friend of mine forgot about that and wore a lovely Russian type fur hat but then went into a pub and cooked as she didn't want to take her hat off as nothing underneath) I was told layering is the way to go.

I also used little straight narrow oblong scarves to tie or twist round scarves to jazz up and ring the changes. I wore beanies indoors but cotton is best and seamless so you don't sweat/itch where seams are. There are some great styles out there. I also used badges or brooches on my beanies to jazz up -looks great.

 Pretty sure Breastcancercare.co.uk have a list of different stockists. 

[Bibi44]

Hi Janey Just popping in from August. Most of our hair didn't start to shed until day 15-20, so plenty of time for your fitting.  Also most felt normalish again after 5-8 days, so you will be fine to go week 2/week 3. All the best with everything ladies. xx

[Ratti]

Hi Jenjen,

Is it a bit surreal when you get the actual start date isn't it? I have got my meeting with Onc twenty minutes before my first FEC to discuss test results, hopefully all is well and it has gone no further than Lymphs, great to hear that yours has not gone any further. Will be having a realxing and chilled out weekend to prepare myself for the start of treatment, a little retail thereapy perhaps!

Spoiler

[JenJen]

Annabandana for cheap but pretty scarves and hats which come quickly x I then went to e*ay for some cheaper but servicable ones coming from china so I got sensible black and Navy from annabandana then crazy ones from china some of those arrived superquick too. If you have pashminas you can look on youtube how to tie them a friend gave me some elastic headbands (they look like a normal bobble only longer) i practiced last night and used a scarf to make a bun then held it together with the "bobble" it looked good x hubby pointed out I am sort of "lucky" as its hat season anyway as there are hats in the shops and everyone will be wearing them soon so I though oooh yeah and bought some beanies from pr*mark too!

[Janey1973]

Hi all just wondering about scarfs/wigs/caps etc. start chemo Monday and appt for fitting not happened yet. Concerned I won't feel well enough to go but know I'll need to sort something to help feel a bit better. Any advice to start me off? Thanks all xx

[JenJen]

Got my start date today 9th Nov eeek 3 or 4 EC (started at 4 but he said he would review at 3 and maybe stop there) then 12 weekly taxol with herceptin. CT reduls today were good no spread past lymph nodes so Just got an echo to get out of the way before treatment starts then wig fitting booked for week after.

[Bobbie1975]

Hi all, I work as a TA in a secondary school and have been told to avoid anyone with an illness. Pretty difficult when you are in the firing line for every germ going!!. So I won't be working while going through chemo. Our headmaster told me I should stay away to avoid picking up any infections too. They are very supportive. I am hoping to go back between the last chemo and radio though on reduced hours just to get back into the swing of things again. It will be exam time shortly after that so I hope to be back to help with exam invigilation cus it's always very stretched. 

I have had a week free of appointments this week but the hospital have made up for it next week. I have my pre chemo appointment, hair/wig appointment and an ECG booked on the Friday.  Can only hope that means it's all systems go for the following week but should get my start date on Tuesday. 

Take care ladies x

[riversidedawn]

Hello again ladies. Regarding work, as Wavylocks says, it really depends what you do and how you react to treatment. I worked reduced hours (2-3 a day) throughout my treatment - FEC 3 weekly and T weekly - from October 14 to April 15. Personally I found it helpful to have a routine (I also did yoga 4-5 times a week) rather than sitting in my PJs feeling sorry for myself. I was fortunate to be able to work from home and juggle my hours to suit my energy levels - I don't think I could have gone into the office.

You have to have some contingency plans and be open with employers, and do whatever feels best for you x

[waveylocks]

Hello girls,

Popped in from the November starters, last years lot.

It is possible to work during chemo but it does depend on what you do and the likely hood of contact with infection -especially during the winter months you really need to avoid it. My oncologist said absolutely no to me as I work in multiply settings with a wide range of children. So I didn't work -actually in reality I don't think I would have coped -all that driving in/out of places equipment to lug. I tired really easily during chemo (FEC-T three weekly)even on good days -but everyone's different!

I did meet someone who had worked throughout -taking a few days off each round to cope with the se's. So my advice is to be open to the idea but also realistic. I found the few days I felt better I needed for housework, laundry, food shopping and restocking of easy meals.

Good to plan something nice to do to  in that little window, something to look forward to. 😊😊

Also just looked at one cycle at a time, ticking of each day and not looking ahead -helped loads!! 

Good luck!! I'm a woose and got there 😊😊 xx 

[Janey1973]

Hi Babypink

I have be wondering the same - I am planning to try and work or at least give it a go. I work in a Secondary school but have my own office I have hide away in and it isn't a role that I'd be in contact with kids and I can also work from home aswell. It's a really good point re knowing your limits and learning to say no. Not my strong point. I have been in 2 minds as it is also quite a busy role and I work on my own but it's that whole thing if keeping some normality if that's possible. I will give it a try during first cycle which starts on Monday morning. Pre appt on Friday morning for bloods. I'm sure I am fighting off a cold keeping anyone away who isn't feeling well. So hard when it's your daughter tho! Got to keep the positive thoughts going.

Jane xx

[Ratti]

Hi Babypink,

I intend to be working, I am also three weekly and will be haveing treatment on a Wednesday so am hoping to return to work the following Monday. Luckily for me I have hospital grade hand sanitiser on my desk! The owners of my company are Doctors and fully understand what I am going through and my team are already keeping their distance if they feel unwell!!

That being said I do know of someone who worked through out their treatment, they just had to work flexible hours and obviously take time off when needed so it is possible depending on how you feel. I think the important thing is to know your limits and not try to work when you are too poorly.

[JenJen]

Hi Babypink I work in a hospital so wont be working during chemo as its a total bugfest over the winter,plus lots of other people rely on my doing what I do right first time and if im off my game it impacts on patients so its a few months of box sets on bad days and walks in the park on good days for me I think some people manage to but I guess it depends on your job and how at risk it puts you of infection. My BCN said my onc didnt mind people working during chemo but they couldnt work specific days in their cycle and it depended on what they did for a living. My previous job in the NHS would have been fine small team of 4 not in a hospital none of us in contact with patients and my own office to quarantine myself in

[Mariej2205]

Hi babypink I'm starting chemo weekly on Thursday Nov 5th so I hope to have Thurs-Sun off and work Mon-Wed I have been told side effects are less when having it weekly but I do have to be careful of infection as I have a public facing job... I think from what I have read it's s bigger dose 3 weekly so may be harder to do and it all depends of your job and risk of infection. X x x

[Babypink]

Out of interest did or is anyone working throughout their chemotherapy

[Ratti]

Hi SuzyEB,

Thanks for stopping by, yes I will be on FEC T. I will look into the drops, hope your treatment is going well. xx

[SuzyEB]

Hi Ratti, just popping in from Sept ladies. Are you having FEC T? The FEC does make your nails dry and ridged, so keep them well moisturised. Bibi recommended Onciolife drops and they are very good. A bit expensive but worth it. The Taxotere part of chemo can destroy your nails and they do become light srnsitive and discoloured. That's why the dark nail polish. It is best to start looking after them early. All the best with your chemo. I am halfway through and it is doable. xx

[Ratti]

I wish I had time to have a holiday, enjoy Babypink!

My appointment was fine yesterday, still waiting for my Bone Scan results but BCN thinks it will be fine as the CT scan was ok. Unfortunately I have a sinus infection and am on anitbiotics! So fingers crossed I will be ok to start next week, the waiting is getting on my nerves!

My Chemo nurse mentioned that if I wear a thick dark nail polish it will help protect my nails during chemo, has anyone heard of this or tried?

[JenJen]

A nice holiday before starting will do you the world of good Babypink 🙂

Ratti hope work and appointment went OK.

Love to all x

[Babypink]

Just had a call from my BCN and my pre assessment is 12 Novvember and chemo starts 13. At least I have a holiday coming up on 1 November for a week

[Ratti]

Good morning all!

So after a hectic week I am back to work for a few hours before seeing my Chemo nurse, so be the end of today I should have confirmation of start date and whole lot of other information that I will not retain!

Jenjen, I agree it is the best course of treatment just dreading the unknown world of chemo, I don't react well to over the counter drugs! I am glad to have the support of everyone here, it does make a big difference! xx Hugs to all.

[JenJen]

Read a few girls blogs who suggest not using toiletries you love during chemo as your brain associates the smell with that time in your life since I know for a fact my mind works this way as everytime I smell Vics vaporub it takes me to one particular place and time im currently stocking up on products that are as unscented and natural as they can be. Bought some Dr Organics manuka honey hand cream and foot cream at weekend got it home I dont like the smell of it much but its apparently really good stuff so I will be a good girl and use it all up i suppose im off to a good start as I wont be using that post chemo!

These forums can sometimes over complicate your thoughts and everyone has their must haves that got them through so its just a case of picking what you want and ignoring what you dont want or cant afford my cousin got through chemo with just good old e45 and gallons of it and eating her normal way with few changes but I can afford a few treats so I may as well get em.

[Mariej2205]

Another statement i read from previous threads... Chemo is our friend x x x x

[Babypink]

You are all fantastic

[JenJen]

Thanks riversidedawn x

[riversidedawn]

Hi ladies, sorry you're all struggling with the info and the unknown. Once you get underway it really isn't as bad as you anticipate. Remember, not everyone gets all or some of the side effects but it's useful to be prepared. Your hospitals should give you everything you need - if they don't, then you must ask. Remember you get free prescriptions now.

Regarding all the info you are bbombarded with, you can take someone with you to appointments as a scribe, or ask if you can record the meetings on your phone or tape etc.

I got frustrated that I didn't know what was happening in the next bit of treatment, but my onc used to say he'll tell me what I need to know at the time otherwise I'll forget - and sometimes things change!

You're in the right place with this group to get an idea what to expect, but everyone's treatment and reactions are different.

I found fizzy water better than normal, and fennel tea very soothing.

Re transport, jenjen, iv'e also heard that hospital transport can be inconvenient but you need to see how you cope. I found friends and neighbours really bent over backwards to help me with appointments when I couldn't drive. Accept offers of help - see if you can get together a few people so you are not asking the same one every time. Depending on your treatment, its only 6 trips over 4 or 5 months. Speak to Macmillan financial helpline to see if you can get help with benefits.

Sorry, I'm waffling on - luckily verbal diahorrea was the only sort I got!!!!

Try not to worry too much about the next stage, take baby steps and as one previous group used to say last year "one sodding day at a time"!!

Thinking of you all xx

[Babypink]

My goodness it's overwhelming the information I'm going to have to really study it

[JenJen]

Hi Baby pink normal gingernuts work for morning sickness so should work 🙂 i decided to buy some posh ones but only because hubby had his debit card in hand and was paying I got some good old mcvi*ies ones too though:). If you are struggling to remember what the docs or nurse say to you then ask them to write down the key points or to point out to you when you need to write something down, they are used to people being not with it when they explain things and will always explain again or simplify if they can my BCN wrote everything down for me

Im having neoadjuvant so not sure but from reading on here its usually 4-6 weeks gaps between treatments


Hubby found a mockito recipe yesterday so if they cant sneak me the real stuff through the cannula I can quaff those 🙂

Ratti sorry you have joined the club x I sometimes feel left out in the neoadjuvant club but its the best treatment for the individual in Oncology and the MDT have decided thats the way for us.

Hello and love to all x

[Mariej2205]

Hi baby pink I think my break between chemo and radio is 4-6 weeks if I remember correctly what my onc said xx

[Babypink]

It's an enormous and emotional hill to climb. Every aspect of being a woman is taken from you. I've been trying false lashes I look so stupid. There sticking to my fingers. Can't get them on my lid and when I do the lashes are so long the do look false!

I'm going shopping this week for snacks and ginger. I'm into camomile tea and the ginger tea too

So do I get normal ginger nut biscuits? I've tried peppermint tea and it's vile lol

Also can you have a break between chemo and radiotherapy?

[JenJen]

Hi all x big hugs

We are all obviously worried about chemo as its an unknown but the ladies on previous months threads and the lovely ones who have popped over to this one are proof it is doable and they are a mine of informatio

My mam hasnt ever had chemo but she has seen family and friends go through it she just said something that sums it up. Deal with it when you have to prepare for the side effects but dont expect them everyone will have a different experience just deal with them if they happen. So stock up on tasty sweets and ginger stuff and immodium and whatever else you have chosen from the lists on the forum then pack it away simewhere easy to get to out of site till if and when you need it.

My main worry about chemo randomly is logistics I dont drive and wont have anyone to drive me so its a £20 taxi fare each way .I know from experience at work that patient transport makes an already long day even longer so I doubt I will be asking to use it. my hubby works 250 miles away and will need to continue to work

Had tooth out last week pre chemo, to those that havent been for a dental check up please do so , its easier now than when treatment is underway. I needed an extraction so had to call BCN to ask Oncologist if OK pre treatment and was told yes but within next 2 days, usually really scared of the dentist but explained I was going to be having chemo and he was lovely.

Hugs and love to all
Jen x

[Bobbie1975]

Hi babypink, sorry that you too are having to go through this too. There are some great tips through this thread to help with chemo treatment and side effects. I am hoping to start my treatment in a couple of weeks, i have my pre chemo appointment on 3rd nov. In preparation, I am drinking green tea with lemon and Manuka honey to up my antioxidant intake, I have started having an actimel to boost the good bacteria in my gut. I had my hair cut short to make losing it less stressful, still unsure on wearing the cold cap as don't really like my hair now it is short and I also get migraines. I was diagnosed way back in August now. Seems like an age ago and hospital appointment seem to have taken over our lives. I had my 2nd operation 3weeks ago and healing well.

Normally really positive but have had a couple of really low days last week, since cutting my hair. I guess having body part that make you feel womanly removed then having my long hair cut was just too much to take.

Just taking each each day as it comes, along with the wave of emotions than come with it.

Hope you are all coping well x

[Babypink]

Sorry I should have added I just turned 50 and work full time and live on my own. It was a shock to learn about this and my feet have not touched the floor since. I'm also dealing with Colitis and a stoma. Up to 2013 I was as fit as a fiddle never I'll. But here we are today as a different person

What peroration did you do for the first chemo session and bold cap? What can do to ease the potential side effects during each session which for me is in three weekly cycles

Thank you ladies

[Babypink]

Hello everyone. I'm due to start my chemo in November 2015 and whilst I'm ok I think once it starts I will battle to stay positive. I'm apprehensive too. I'm going to try the cold cap treatment but still buy a wig just in case

I'm not sure how long the chemo lasts think it's about 5/6 months. I'm sort of living in a bizarre world

[riversidedawn]

Hi Janey (and all!) I'm a year ahead of you ladies - started 31 Oct last year fec-t (t also stands for paclitaxol also known as taxol which is given weekly by some hospitals.

My kids were 9 and 12 when diagnosed and have coped and grown up admirably. We didn't hide anything from them and I had chemo and cold capped at home. I think it's important to involve they - they came to my wig fitting although I didn't need it in the end - although very handy when going out as no need to spend hours doing your hair!!

[Mariej2205]

Hi Janey welcome to the party that no-one wants to go to although you will find amazing support and information here and you are a very welcome in the November starters. Feel free to ask anything and to rant whenever needed. Kids are amazing aren't they mine now 26 and 25 are the best support ever. I'm going to try the cold capping I start chemo weekly on November 5th lumpectomy already done then 4 weeks of radiotherapy. It's a long road but step by step. I too am very positive and try to keep life as normal as I can. Good luck with your treatment keep us posted x lots of luck and love x x x

[Janey1973]

Hi all - have been reading all your tips and hope ok to join the party no one really wants to go to! All the info has been so helpful. I'm Jane 42 with 2 children 12 and 8 who are currently coping so well with my crappy news. I was diagnosed in Sep 30 and start chemo on Mon 2nd Nov. I'm having FEC-T before surgery as am having genetic testing to determine surgery route. Have struggled with knowing nothing as started to get rid of C for the last month but am trying to be as positive as you can be going into chemo. Awaiting appt for my temp hair - had considered cold cap but decided against can never get my hair right anyway! Looking forward to swapping notes over coming months. Sending lots of luck ladies

[Ratti]

Hi Jenjen,

I am 45 and will be going through the same treatment and you, I due to start chemo on the 4th November. On Thursday I had an ultrasound and a little coil inserted into my tumour at 11.30, then straight in for a ct scan 12.20, that was way more fine than it should have been! Except for the metallic taste the warming feeling from the meds really relaxed me! After that was an Echocardiogram so a very busy day and then I had a bone scan yesterday.

I have been advised that most likely I will have only have the lump removed so am hoping all tests results are normal.

Hope your tests go well and look forward to swapping chemo notes with all in the group.

[SuzyEB]

Hi there
FEC is 5 Flouracil, Epirubicin, Cyclophosphamide
FEC T is the same but the T is for Taxotere also called Docetaxol.
Hope that helps. These are all lovely forms of Toilet Duck designed to kill off the aliens in our breast.
Hope you have a restful weekend. xx

[Mariej2205]

Hi everyone hope your all doing okay. Can someone please tell me what FEC stands for and also FEC -T? Been racking the brain but it's not coming to me!! Xx

[Bibi44]

Thanks. I sort of thought I've never cut under my arms in the last 30 years, legs yes when younger, but pits no. On the FEC-T the FEC will be 3 weekly, but the T can be given 1, 2 or 3 weekly. I have gone for weekly because the SEs are minimal compared to 3 weekly from what I've read on previous threads. Also it's 45 mins administration compared to 3 hours & our unit wouldn't let me cold cap because total time would be 5 hours, which they consider too long (I have seen others doing it though). As I've kept most of my hair (back from ears down has thinned by 1/3 where cap didn't fit so closely) through FEC I wanted to carry on primarily to speed regrowth. You are lucky you have the option of weeklies, a lot don't.  Write down any questions for the nurse. You won't get all the SEs, if you read the last few you can see what usually comes up. All the best. BBxx

[Bobbie1975]

Ok so oncologist appointment yesterday was a bit mind numbing. So many possible side effects to watch for!! So I'm having FEC-T with herceptin injections from cycle 4. He said I could have treatment weekly but not sure if that is just the herceptin or the T part too (my brain had stopped by this point!)

I see the pre chemo nurse on 3rd November and could start as soon as they can fit me in as my wound is healing nicely. Oncologist thinks about 2-3 weeks. Waiting on a call to get an appointment with the hair/wig lady too so moving forward.

Totally overwhelmed though at the moment by all the information. I thinking need to do some morereading and try to proccess it all.

Also, Bibi, I did a bit more research and found out that you can't use the NoNo on scars or sores as the thermacon pulses can cause burns or blisters so probably not a good idea as the skin is delicate anyway. Can't find anything else about it in regard to cancer patients and the health professionals I have asked know nothing about it. TBH I shaved very gently in the end.

[Bibi44]

Hi All Sorry to see people all lining up for another month's thread. You will find this a good outlet for support/a moan to to very sympathetic ears. I am from Aug 2015, so feel free to pop in & ask us anything anytime. We are all about halfway through now & so will you all be soon. All the very best.  You can do it ladies. BBxx

PS Bobbie I was wondering about getting a NONO so please post if you find out. I've been a bit naughty & started shaving again 10 data after op. You will find you on't need to shave much from about week 2/3 after FEC (not sure about the rest)anyway, nor file your nails, so do make sure you keep them supple, because they might not grow for a while. Best is onicolife, but also expensive. Next best is horses hoof/ thick nail oils.