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Starting Chemo in Nov 2011

Lulu34
Member

Re: Starting Chemo in Nov 2011

Awww gill sorry your daughter is poorly. I'm so glad I have a supportive family to help me out.

Hey everyone else Iv been having a pj day today and vegging out. Tongue gone scabby and fat again and taste buds gone. Can taste minty things.... Yum to after 8s and mint kit Kats but savouries taste naff unless covered in salt. My family look horrified at the amount if salt I put in my food.

I see some of you are worried about treatment and Chemo regimes but there is no standard treatment what the nice guidelines state is if you have early node positive disease you should have a taxane. Some Onc will give as standard regardless of node involvement. My nhs surgeon is very up on research does loads fir breakthrough. Also is involved in treatment research too and address conferences across the world. If I could have him or harley street doc I choose him no questions. I think he is more up to date than some private docs.

With regards the Chemo debate there is actually evidence that 4 cycles is more than enough to treat cancer but they give 6 to be on the safe side. Previously it was 6 but 8 to be on The safe side... I'll if I can find out more into or a link.

I see a few are worried about the future too and when I was first diagnosed I was worried about cancer coming or progressing and then three years later it did come back and was really terrified at that point and worried that was the end for me. But I know a lot more and although nobody can predict the future I'm not scared of cancer. I have freinds who live with secondaries and yes it has an impact on their lives but they are living with the disease so I'm not gonna worry about something that 1) I dont have ant control over and 2) that night never happen especially when my mates are living what I thought was my worst nightmare. It's not that I dont think about dying because it does cross my mind but I think when I was younger I always wanted something sudden just to take me out... no pain no worries.... But now I prefer it was something that wasn't instant that I would get a chance to do things I want, that get to make arrangements and say good bye properly. Have no intention of popping off anytime soon... It's there at the back of mind in wee box along with a lot of other stuff I will deal with or have dealt with in the past and it's only coming out it's box like the Xmas decs when it's actually required.

I know we are all different and if you are finding your diagnosis, treatment and life after cancer very difficult do speak to your GP or bcn and get some help.

Hope Iv not made you all morbid.

Love lulu xxx

gill13
Member

Re: Starting Chemo in Nov 2011

oh the joys of being a parent, my 6 year old was complaining of tummy ache, so did the usual go to toilets, settling back in bed, and then she is sick! she is standing at top of stairs calling me, and is sick again, all the way down the stairs and over me too 😞 urgh
so its a change of bedding and pj's, then she's sick again.
Change of bedding and pj's, and fingers crossed that's it
its now i wish i had an OH living with me, i'd defo play the "C" card cleaning that up

Night all

Gill x

Daysie
Member

Re: Starting Chemo in Nov 2011

Hi Audrey,

I've been feeling the same way as you today, bit weak and low energy if I stand too long, haven't got much of an appetite yet, I can never decide what to have for a light meal, I don't really fancy much during the first 3-5 days after chemo then appetite returns. Everything seems such an effort in week 1 post chemo, cooking, washing up, shopping, I just cba lol

I have 3 days worth of Odemet anti-sickness tablets after chemo, then a pack of Domperidone to take on an as and when basis, I only need one last time round.

Think I'll go back to bed again 🐵

Night all

Paula x

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Re: Starting Chemo in Nov 2011

Gill

Just noticed you will be on no 3. So will behalfway.

A

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Re: Starting Chemo in Nov 2011

Gill

Good luck with bloods tomorrow and chemo on Thursday. Which no are you on?

I noticed today that I am starting to lose my lower eyelashes on one eye.

I had 3rd FEC today. I feel a bit weird and slightly sickly so have taken domperidone, I also have emend. But I have been able to eat a good tea. Nibbling on ginger biscuits and drinking ginger ale. Have spent all evening sitting in the chair with my feet up. Feel wobbly and weak when I move.

Will go to bed in a bit.

A

Pleasant1
Member

Re: Starting Chemo in Nov 2011

Sue, defo not 'there' with any 'stages' – other than a lot of flatulence. Hope I can contain it at the school play tomorrow afternoon… There will be much clenching of buttocks!
Tips – err, PG? No, I hate them. Mine are walk in the woods whilst deep breathing and stretching; keep looking ahead and behind to make sure you are alone for fear of being branded a nutter. I bought some high strength Vit C fizzy tabs and drank beetroot juice today.
Anyone up on wheat grass powder, or know how best to take it? Seems to be more palatable than slippery elm.
I'm meeting a stranger on Friday. Tall and dark? I'll let you know! She's been through BC and I was given her number by a lady I randomly met – you guessed it – in the woods.
So, my main tip is to remember, although we never know what is round the corner, often it's a type of guardian angel in the form of a very helpful and well-meaning human being. So yous lot, may your guardian angel arise. Oh, and I have a small healing angel in my back pocket. It must be suffocating, due to my…! x

gill13
Member

Re: Starting Chemo in Nov 2011

evening BBB's

its not a good idea to miss a couple days on here! i've had a quick look at post, but will go back and read properly after this,

Lulu - Love your picture!! couldn't see the pink shoes tho 🙂

Kym - my wash in & out dye was fine, not adverse effects, hair still as it was, just the one patch which seems to be a bit thinner than others, but it hasn't got any worse.

i do seem to have a tiny bald patch on one eyelash, anyone else loosing eyelashes?

Bloods tomorrow for me ready for no 3 on thursday

hope everyone doing ok

Gill x

Daysie
Member

Re: Starting Chemo in Nov 2011

Hi Jackie

Well done on your 1st FEC last Friday, I had my 2nd FEC that day. It also made me feel a bit lightheaded only for about 5 minutes, my legs started trembling as soon as I sat down, I was like one of those shivery little dogs lol.

I would be surprised if the chemo nurse pushes the drugs through fast, mine went through faster this time because she found a good fast vein just up from my thumb and it naturally went through faster, but it still took the saline an over an hour to go through.

My scalp became sore 14 days after the 1st FEC, then during the last week most of my hair has combed out or came out when I had bath/shower, in a week it has almost all gone, so that just over 3 weeks since the 1st FEC, the speed of hair loss has surprised me, but at least the wig fits better now.

I have just bought a 'halo' of hair with detachable frings lol, I wanted some hair at the back of my neck so when I wear a hat I don't mess my wig up. I got the halo from Frobishers in Scumsville (Ipswich lol), it's a lovely shoulder length bob with highlights and the hair fits on an adjustable band, leaving me bald on top, which is ok so long as I don't take my hat off which would make me look like a Monk! lol.

Linda - I have also been in and out of bed al weekend, feeling very tired like you, and feeling sick, not actually being sick as I think it's supressed by the anti-sickness medication. My boob/lumps also feel soft and smaller.

I have managed a couple of slices of toast today and some fresh fruit, cheddar tomatoes and crackers and lots of water.

On the poo front...lol...the Senokot worked a treat this morning! lol

Hope everyone is taking things easy

Paula xx

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Re: Starting Chemo in Nov 2011

Hello ladies,

Thank you L4W for adding me to the chemo date list and good luck to all of you going through it this week.
I washed my hair this morning and lost about half a head-full!! Took me ages to clean up and even had to hoover the bedroom floor! I'm really looking forward to shaving the whole lot off on Thursday but don't want to do it before then because that's when I get my wig! My mum is 87 and says her hair is falling out too. I've told her I'll give her my wig when I'm finished with it and she'll look like the trendiest 87 year old in town! L4W, I had a craving for cheese too and also salted peanuts. I think we must crave the salt because we've lost some of our sense of taste. Mind you I can still taste chocolate 🙂

Guest user
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Re: Starting Chemo in Nov 2011

Hello All

Had FEC3this afternoon. Sucked kiddies sweets (party mix bought fromLidl) one after the other whilst having C so didn't notice the horrible taste it gives.

I was given a cup of tea and a mince pie whilst I was having chemo.

Sitting at home now in my chair with my feet up, just feeling a bit weird and my head feels a bit funny.

Hope everyone is doing ok.
A

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Re: Starting Chemo in Nov 2011

Hi ladies,

Well fec 2 done, was a long day as Friday my bloods were too low so had to have them done again they had gone from 0.9 to 5.8.

Feeling ok got a slight headache but drinking lots of water. Had my first outing with my wig today it's a little big so will have to get it adjusted.

Hope everyone is doing ok?

Hugs to all xxx

italia03
Member

Re: Starting Chemo in Nov 2011

Good Afternoon Ladies
Well i know ime a liittle way behind you all due to cancellations but i had my 1st Fec last Friday and Back again for Fec 2 on 28th Dec.
it did make me feel a bi wierd and shaky and suddenly come over very light headed . ime wondering if it was because the nurse said she was going to try and push it through quicker to get me out a bit earlier but because she only got a little vein it didnt work . can anyone tell me if this is mormal practice . apparantly she said shes wrote it up for the next nurse to find i bigger vein , ive been thinking it about this over the weekend and it worries me a bit .
That said i havnt had to bad a weekend , not much sickness but just very tired .i am being careful what i eat though and drinking plenty .
i havnt had my hair cut yet its a longish bob , how long do you think ill be able to hang on to it . I do have a wig ready but i must admit ime not looking forward to it .
Goood luck with everyone having treatment this week or next
Love and Hugs
Jackie xxxx

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Re: Starting Chemo in Nov 2011

Finally got round to updating my profile with a proper photo of the baldy heid as OH has taken to calling me.

I also considered going private as had cover through work, but it's a bit basic. I think it would have put me through all the treatment except maybe recon over the first few months, but was worried I'd be cut off if I had any complications or found out it had spread and I was looking at years of treatment. I hadn't taken it seriously before first appointment with breast clinic as didn't think BC could develop so fast and by the time it sank in I felt the NHS staff seemed like such a well organised team I didn't want to take any risks. Only worry was that I might have been further along in my treatment, but probably not by enough to have made any real difference to the future outcome - I hope.

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Re: Starting Chemo in Nov 2011

Good Afternoon ladies

Im afraid I had FEC no 3 on friday and it seems to have knocked me for six this time around. I have spent literally all the time since having it in bed, and if I am honest feeling alittle sorry for myself. Gosh I hate feeling poorly when I have so much to do. My OH had even booked today off for xmas shopping and I have managed a 22 min trip to Asda...

With reference our treatment plans it looks like we have to trust our surgeons and oncologists. My surgeon wanted me to have chemo first before lumpectomy so that he knew the chemo was working ,which thankfully it is (I can hardly feel the lump anymore- though it could just be hiding !! He did say tough it had now gone soft and smaller so I am forever hopeful)

I too had the choice to go private however I have found the NHS service really good, there is always someone I can call if I am worried and when I have had my treatments someone has always been with me. I certainly cant fault worcester for the treatment I have received.

Does anyone use any of the complimentary treatments available to us ? My Chemo nurse has given me information on Snowdrop who are part of the St Richards Hospice and they seem to hold some great talks and complimentary therapies ? Not sure whether to go or not ?

Well I am going to see if I can manage a slice of toast for tea... seems to be my daily limit at the moment ..

I will write back tomorrow when hopefully in a much better frame of mind.

I hope those having their treatment today goes well and any side effects to a minimum..

Linda
xx

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Re: Starting Chemo in Nov 2011

Hi Pleasant - you kind of reminded me of something...
last night as I went to bed I thought to myself "gosh, you haven't thought about dying all day" - then I realised what I had just done and spent the next couple of hours trying to change the subject in my brain.

I don't think I can get beyond this stage until after chemo & rads - does anyone else think they are there already? Is it just chemo giving me more time to dwell on things as I can't get into work at the moment? I was really positive and upbeat (most of the time) during diagmosis and surgery but am struggling now.

Any more tips? Usually at this time of year I'd be sorting out my training/events diary for the next year - at the moment I don't know if my next surgery will be in six months or a year. agh!

Sue
PS might have just done an unecessarily stroppy post in reply elsewhere - if I do that to any of you, please forgive me

Pleasant1
Member

Re: Starting Chemo in Nov 2011

Dear all
Once again, it was very late when I wrote last, and I'd had a couple of nights of the pub disco until midnight; although I fell asleep before the last one ended and imagined I could actually feel the drum and base energising my soul! I'd also had my three step-children over, together with our three smaller ones and we'd made a star costume for the school play. Luckily ancient half-sisters are very arty and together we turned out an impressive star.
So, aren't the various regimen fascinating and bothersome at the same time? I can't help but get the feeling we're all in a bizarre lottery with lots of fingers crossed and people believing we will live on and transcend this nightmare because breast cancer is the one they have more success with overall. This is somewhat comforting but, akin to you all, keeps me awake for hours every night and won't leave my thoughts during the day. Part of what Sue says was said by my nursing friend only this morning, i.e. we all cope with things in our own way, eat differently, have different genetics, etc, etc. Many mention similarities between coping with pregnancy in that some people have a terrible time of it and are constantly sick, whereas others go into earth mother mode.
All we can do is quiz our oncologists and report back. I see mine next Tuesday.
I really feel for you Christine, being far from home and family, getting this and believing you would experience better care elsewhere. One of my sister's is near Aberdeen and misses her home area terribly. I don't know what call I would make. I've tended toward the martyr role, which has rendered me so low at times. However, having witnessed total selfishness wreaking havoc on others, realise major decisions are rarely straight forward.
This cancer's making me not want to live on with regrets so one thing I'm going to be very mindful of in future is exactly how I'm using this precious life and to factor in time for self when things return to being stupidly unbalanced, i.e. sourcing some kind of work again.
Good luck Audreytoo and Dotflott today. I hope it goes smoothly for you and everyone else back on the intravenous this week. And, well done L4W on your meticulous lists!
Meanwhile I've got more noisy pub nights to look forward to Thursday, Friday, Saturday. Thank goodness I'm not on the juice this week.
Small boy running down path. Must GO be unselfish. PS Keep meaning to mention, this Dobby is constantly collecting odd socks! x

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Re: Starting Chemo in Nov 2011

I have to agree with you Sue, we have to have faith in our onc's or there is no point in going through all this treatment.

All doctors have to keep up their self development under the current KSF contracts and will attend conferences and training often during each year. This is also due to how much things change in medicine every year, to stay up to date they have to attend these things and from my stints working for both the senior hospital and consultant section of the British Medical Association and the NHS I can confirm that this happens, in fact the oncology committee at the BMA was one of the hardest working committees I worked with.

Things have changed a lot since the NHS started and we do now have the right to ask questions and expect an understandable answer but always remember that the doctor does know more about the subject than we do following the small amount of research that we do and s/he has our best interests at heart.

Always remember if you really are not sure about your care or the answers you are getting you can ask for a second opinion.

Jean xxx

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Re: Starting Chemo in Nov 2011

Hi all
I thought I might try and shed some light on why we are all on such different chemo regimens and yet obviously our oncs will have decided they are the best for us. I'm not an expert in chemo, but I do know about pharmaceutical research and I am sure the same applies in areas I do know about e.g. diabetes to chemo.

Firstly - the drug companies may set up their studies to compare against whatever treatment they like - not necessarily the treatment that oncologists may think is the best. So the study may say regimen XYZ is better than ABC but actually the oncologist was using ABZ so doesn't know if things have improved or not. Similarly with doses, duration and types of cancer targeted.

Secondly the people recruited to the studies may not represent you and me - they could all be very young, very old, very fit, very ill etc. They are often from a different oountry e.g. would a Japanese study be relevent to us? The BC and drugs may be the same but the patients genetic makeup, lifestyle, diet etc may be totally different and these may make a difference. There is a whole book to write here, so I'll stop!

Your oncologist makes a judgement call - and will also use the opinions of colleagues and national guidance - but it is still a combination of art and science. You have to have some faith in them, but they are the experts and I'm sure they do what they think is in our best interests as individuals.

My onc told me he had taken the nastiest drug out of what would have been my regimen because the benefits were tiny - and I have had milder s/e than I expected - so I'm happy with that.

Hope that wasn't too lecture-like, but helps understanding & confidence

Sue

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Re: Starting Chemo in Nov 2011

christine, i'm so sorry my post has worried you. i really think that the german research was all about testing whether the lower doses, weekly, was as effective as the higher doses, three-weekly.

that's the trouble with these forums i suppose. none of us are experts and there's probably more to oncology that deciding between 6 and 8 FEC-Ts. i mean there must be other factors, specific to our own particular cases, that influence their decisions. and as much as it's good to ask questions i think we have to acknowledge a degree of expertise on their side.

but talk to your onc about your fears.

x

3network3
Member

Re: Starting Chemo in Nov 2011

Hiya again I just pop in from the Dec Darlings

Judes and Pleseant1 I'm more than interested in what you're saying. I have thought about Judes post re German research all weekend and given my hubby a bit of a hard time last night. I'm German and have this prejudice (excuse my spelling!! please!!) and suspicion all the time that I could get better treatment in Germany. I'm from a big city in the south of Ger and there is a specialised breast clinic in one of the hospitals where I would be treated if I were there and can't stand the thought I sit here in a country hospital in the Highlands with a mean NHS in my neck. My husband is Scottish and he is very much against moving to Ger as he can't speak German and is really scared moving from his beloved Highlands. I used to say it's OK living here as long as I'm healthy and now I have got cancer, never thought this would happen to me. I'm a nurse and when I came over from Ger to work here I noticed that a lot of things were not so up to date as I was used to. I hope I offend no-one, really don't mean to, but I feel I want to go home as deep down I believe I would get better treatment. Reading your posts now re not so much diff treatment after all calms me down a bit. I'm actually wondering to pay a 4th session of FEC and TAX privately, just in case it might be better. I have to speak about this with my onc, but she will tell me anyway that she will do the best blablabla.

On another note, I get a CT scan to see if it has spread (grade 2, stage 2 so far, diagnosed Nov 11) 2.5 weeks after my first FEC. I wonder if this is not so good and doesn't help to restore faith in my local hospital.

Love from Christine xx

Daysie
Member

Re: Starting Chemo in Nov 2011

Judes, you are indeed a BBB! your story made me laugh, I can't think about food too much this morning, ugh, my OH made a greasy omlette yesterday and I couldn't bear to watch lol. I have been nagging him quite a bit about his eating and drinking habits, lol, my way of venting my own frustrations! lol.

I can't bear the thought of letting anybody see me almost baldless, it's only been a week, and I'm still shocked at the sight of me, it looks hideous.

Well I'm out of bed and again, and don't feel too bad, decided to have long hot bath and and lazy day.

Also decicided to have a Marks and Spencers ready prepped Xmas lunch, it will be nice and relaxing hopefully. I've got 2 events this Saturday, my brothers having a house party in the afternoon and then we're going to a Blues Brothers Tribute Xmas function, just the thought of it all exhausts me today, but hopefully by then I will have re-grouped the troops!

Kym - hope you're feeling well and getting used to your new wig. How's your hair doing?

Paula x

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Re: Starting Chemo in Nov 2011

morning all

i'm still celebrating injection free mornings, somehow makes it easier to get out of bed.

i have to confess i used my cancer yesterday, was quite fun. i'd booked a table for 12 at a nearby pub that does great sunday roasts and is always heaving on weekends, we could only get a table at 3pm (and i must admit there was much changing of numbers during the week as people joined in then pulled out then others came) but when we got there, starving, the people on the table that was to become ours were just ordering desserts and the staff were a bit huffy really, saying there was nothing they could do and we'd changed our booking so many times they'd done their best to accommodate us, we'd just have to wait. so we waited a bit and i thought, bugger this, and took off my hat and told the waitress, in a soft voice, that i was having chemo and didn't have a lot of energy so couldn't really wait around long. next thing they reorganised the tables and we were all sitting happily. of course when i was still there drinking wine four hours later they may have wondered a bit about my low energy levels.

was really hot in the pub and i sat hatless the whole time. got plenty of looks but i think more out of curiosity. i just tossed my head at them, and my friends were all lovely.

on the treatment, i have private health care through work and decided to use it to speed up surgery and scans etc. i think it makes it a bit easier and more comfortable, but basically the treatment is the same. to be honest i think the fact that my consultant works at UCH is more important than that she works in harley street. the NHS consultants are really more likely to be plugged into the latest research etc, and be doing research themselves, than ones who work only privately it seems to me. if i was in the NHS i'd have the same consultant and the same regime, except that i'd have my 12 tax as four higher dose ones. spreading it out is thought to reduce side effects but is not expected to make it more effective. so i wouldn't worry about your NHS regime pleasant. seems that some consultants prefer one over another, but as lulu says there is research showing that 6 FEC-T is as effective as 8 FEC-T. my consultant obviously doesn't buy that research and i have faith in her, doesn't mean it's the only way tho.

but as filisofie says why not ask if there would be benefits to having 8 FEc-T? i'd be interested to know what your onc says. i've also been told i'm high risk of all that stuff, that's why we do this!

i'm quite interested tho in the surgery first or last thing. i'm a bit preoccupied with wondering how they will know if the chemo is working for me, if it's killing off those escaped cells. seems there no real way. can't help being a bit envious when i hear people who've had chemo first reporting that their lumps have shrunk, or worse people who's lumps haven't responded so they've switched chemo drugs. i'm going to ask my onc about this next time.

Daysie
Member

Re: Starting Chemo in Nov 2011

Good morning everyone,

I have been awake every 90 minutes due to drinking so much water, still feeling sicky on day 3 after 2nd FEC, hoping it will pass after some toast later. Feeling wiped out and not wanting to do much today, probably go back to bed soon. I felt the same after the 1st chemo.

L4W - well done in compiling this weeks list!

Jean - I've got the usual 3 days worth of anti-sick tablets, it's just sometimes I get the sickness wave that passes over me, then it goes away, think the tablets are doing their job, although I think I sicked my tablet up with some water this morning and it went down the plug hole lol whoops!

Fileosofie - I'm having 6 x FEC-T once every 3 weeks. 3 x FEC first then 3 x T. Seems like we all have difference cocktail mixes, I haven't questioned mine that much, so long as it does the job!

Best wishes to Audreytoo, Dotflott, Pink Princess and Soapflake for chemos today.

((delicate hugs)) Paula x

filosofie
Member

Re: Starting Chemo in Nov 2011

Pleasant I don't think these regimens are really that different. The main difference seems to be 6 vs 8 doses and there is some evidence that fewer doses are as effective. Judes is having weekly Tax, which I believe is mainly to reduce side effects. Paula seems to be having all her chemos at once (is that right or have I misunderstood?). Whereas instead of FEC I'm having just the E to begin with and then the F&C after the Tax in a combination called CMF which has Methotrexate which seems to be one of the oldest chemo drugs and CMF is the oldest effective combination; I don't think it's used that much anymore (except in Birmingham maybe). The most coherent answer I've had as to why I've been given this regimen is that the different drugs target different stages of the cell cycle. Also I was given the distinct impression that first set will be horrible, second set (Tax) will be really horrible and third set will be not so horrible. So perhaps they think that if I wimp out of the Tax, there is still something else up their sleeve (or up my sleeve). Anyway, in terms of doses of each of the drugs I don't think we are all that different. However if you are worried why not say to your onc that you have come across women on other regimens and want to have more information on how yours was decided. The people at BCC might also be able to give you more information.

Libralady
Member

Re: Starting Chemo in Nov 2011

well just back in from my evening dinner had a great time, my mates are sooooo funny. I was so happy to be able to drag off the scarf and just be me....but with no hair and have no one blink an eye lid. I wish I had the guts to go out like it as I have seen a couple of chemo women come and go from the unit with no covering. Plus its just tooo darned cold at the moment.

Funny - my mates partner is bald (by choice) and we were sitting there comparing head shapes and the best shaving equipment to keep a smooth non prickly head! lol.

Much love to everyone on Chemo this week - another one ticked off eh.

Got a bit of a headache just now so ive popped an ibuprofen and im orf to hit the mattress.

Much love one and all

Lisa
xxx

Lost_4_Words
Member

Re: Starting Chemo in Nov 2011

Evening Ladies

Well the chemo fog has descended once a gain and apart from a little bit of housework I've spent most of the weekend on the sofa.

Next weeks round 2s and 3s:
No.3s
Audreytoo Mon 12 Dec
Dotflott Mon 12 Dec
Chelle4 Wed 14 Dec
Lizzy1977 Wed 14 Dec
Butterfly61 Thur 15 Dec
Gill13 Thur 15 Dec
Paf Thur 15 Dec
ChloeM Fri 16 Dec
Gingerrizzie Fri 16 Dec
Sheepfarmersotherhalf Fri 16 Dec

No.2s
Pink Princess Mon 12 Dec
Soapflake Mon 12 Dec
Jaxette Wed 14 Dec
Jmk30 Wed 14 Dec
CaroleW Thur 15 Dec

Good wishes to all and wishing you all teeny weeny SEs.

LL hope you enjoyed your meal and Yes I think your friend was right, but the boot on the other foot and ask what you would have done if it had been her 🙂 Sometimes we have to just let others put us first.

Shelle, can I borrow your daughter please 🙂 Might be best waiting for the porch till the nose hair grows back, cement crows don't sound very pleasant 😉

Mabeline, Hi and welcome to the Nov Gang. I'm the chemo date stalker so I've added you to my list. I haven't gone off anything yet but am finding I fancy the strangest things at the strangest times (3am cheese and pickled onion butties, yummy). I have to say though I'm avoiding chocolate because the thought of going off it is just not a risk I'm prepared to take 😉

Kym, my wig feels more comfortable the more I wear it although I can't stop fiddling with it. It's certainly better since all my hair went.

Paula, I'm now craving crisps and all the shops are shut!! 😞 Glad you had a nice time. Be bold 🙂 I didn't want my OH to shave my head and had a hat on when he got home but it irritated me so I just reminded him that I cut his hair before I did the unveiling and now I'm like Jean forget that I've not got it on 🙂

Hope everyone else is doing ok and busy preparing for the coming festivities (2wks and it will all be over!!)

Night all, sweet dreams
L4W

Pleasant1
Member

Re: Starting Chemo in Nov 2011

These different regimes have really got me going. I now want to find out WHY some of us are on one regime and some another. I wonder whether dose levels are different depending on age, obviously they are for your 12 weeks of Taxol Judes. I know they go on weight, but what else? Your oncologist sounds more on the ball, with a Harley Street background, but we all seem to have to put too much faith in whatever NHS hospital we live near. I'm after more than a soddin' French shrug! And Judes, are you going private or NHS? I wonder what regime Jennifer Saunders and Kylie Minogue were on; or anyone rich, famous and 'important' for that matter!
So, here's me, a Grade 3, 3 lumps, 11 of 16 nodes were positive and
the surgeon couldn't even guarantee he'd got all the nodes as he said if he'd gone any higher he'd have been into my neck area. So then I get a nice letter confirming in black and white I'm 'very high risk' of the cells having gone further than the lymph nodes – although the CT-scan was clear; but it doesn't pick up everything – and 'high risk' of recurrence (and that's the bit that bothers me the most). To say I'm bricking it is an understatement. But I'm on the totally standard 3xFEC, 3xTax, a month break, followed by three weeks of radio, then Tamoxifen for five years.
Also, almost exactly two years prior to my Mastectomy I was scanned at Salisbury Hospital and they sent me away with a pat on the head and a breast care leaflet; then wrote a letter to my doctor saying I had benign malcalcifications and they'd 'reassured' me! So this just illustrates how quickly this cancer moves and I can't help constantly wishing I'd not believed them and gone back a year later for another scan…

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Re: Starting Chemo in Nov 2011

Paula you made me laugh about not letting your OH see you without wig or hat, I tend not to wear anything indoors then when someone knocks of course I forget and just open the door then they are so shocked they start stuttering and I laugh. But certainly don't think I could go out without anything so quite glad it is winter time really lol. Can your chemo unit not give you something extra for the nausea?

Kym found my wig more comfortable without hair but like you have to keep tugging at the back and sides to make sure it is down!!!

Jean xxx

Daysie
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Re: Starting Chemo in Nov 2011

Hi everyone,

I'm managed to get through the last couple of days ok, after my 2nd FEC. Have the same sick feeling as last time, same tummy full feeling, and tired. Not had a poo since chemo, but that's the same as last time lol, I am prepared this time with some Senokot - the comfortable version lol 🐵

I've had a busy day, despite not feeling up to much, I managed to go shopping this morning and spent the afternoon in the pub round the corner with some friends, they had a live band on, it was very noisy and I felt sickly all the time, but was determined to stay put and not let 'the thing' win! Had a packet of crisps for lunch and several mineral waters lol. My bro and his wife turned up with presents this evening and now I am so glad to be in my nightee and ready for bed.

The usual ritual of combing the remnants of my real hair, taking anti-sicky tablets, taking temperature, oral hygiene etc etc.

Kym you will find the wig to be a lot more comfortable without your own hair underneath it, mine feels much better now almost all my hair has gone, I can't believe that in a week my hair has virtually vanished, it's scary to see, but least of worries, and it will be back eventually. I won't let my OH see me without wig or sleep hat lol, he says he loves me whether I have hair or not - bless, but I look such a fright, maybe I will get more bodacious as time goes on lol!

I hope everybody else is doing well, I have lost track a bit of who is doing what, will catch up when fog lifts.

Nite night everyone

Paula x

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Re: Starting Chemo in Nov 2011

Hello Ladies,

Paula - hope you're still feeling ok after your second FEC! My second one will be on the 19th if everything is ok.

Libralady - like you, I've never really asked questions either. I know I'm having radiotherapy after my mx, but I have no idea for how long for. Some ladies even know how many minutes of it they're having every session! I'm seeing my Onc on Tuesday, so I'm going to ask questions!! (I've never asked because I'm a wuss and didn't really want to hear the answer!) and please don't worry about hurting your friends' feelings. I'm sure she wouldn't have been at all offended - and imagine how much worse she would have felt if you HAD caught a cold from her little boy! And like Jean says, little children can get quite bored going to tea at mums' friends' house!

I went to look around the Christmas markets in Manchester this afternoon, it was lovely! I decided to give Esmerelda, my wig, a trip out because I was too lazy to wash my hair. It couldn't have looked too bad because my OH and son were quite happy to be seen with me. But I just didn't feel too safe in it, it didn't feel secure enough on my head, even tho I'd twiddled with the straps inside to make it tighter. Maybe it's because I still have hair. Every time I caught sight of myself in a shop window, it looked like I was wearing a bearskin, and it felt like it was riding up so I kept yanking the fringe back down. But nobody sniggered or looked at me funny. One stall holder kept me chatting for ages, talking about the X Factor, and I was eager to get away coz I was convinced as I was talking, Esmerelda was trying to make a run for it and lifting off my head. I was also paranoid that it would get caught on someone's coat coz it was absolutely heaving with people! Still, baptism by fire! If I can survive a trip into the middle of Manchester, guess I can just about wear Ezzy anywhere else! As soon as we got back to the car I whizzed it off and stuck a hat on instead.

Best of luck to all who are having chemo tomorrow, and may everybody's SE's be small and manageable!

Kym x

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Re: Starting Chemo in Nov 2011

LL I wouldn't worry about the little boy if the truth be known he probably was pleased not to go so enjoy your evening.

Mabeline if I remember rightly Green Tea is very high in antioxidants.

Hope all those who had their first or top of "knights on white chargers" this week hope you are all doing well.

Good luck to all those who should be having theirs next week.

Jean xxx

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Re: Starting Chemo in Nov 2011

Josie 1 - Keeping my fingers crossed crossed for you as well for Thursday.

LL - Enjoy your meal out.

Shelle - If I was in your position then I would delay buidling the porch, I just wouldn't want to take any risk, but then that's me. Have you discussed this with your BC Nurse. Good luck with your decison.

Had a busy day today trying to get things done before my 3rd FEC tomorrow.

All the best to everyone who is having treatment this week. I hope all our side effects are little ones.

A

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Re: Starting Chemo in Nov 2011

By the way, on the subject of Yorkshire Tea, I've been drinking green tea. According to Google, it's got cancer fighting properties and is a bit of a wonder tea! Doesn't really taste of much so I make myself drink three or four cups a day. Can't do any harm.

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Re: Starting Chemo in Nov 2011

Hi everyone,

Great to read all your posts. Took me ages to get through them all! Daysie, if you are interested in mind over matter, you may be interested in Joyce Meyer's book, "Battlefield of the Mind". She also has a nightly show on the God Channel and Inspiration TV. She does come at it from a biblical angle, but she is really down to earth and makes you feel there is nothing you cannot get through with the help of God. Hope I don't sound like a religious nutter here, I am definitely not, but I do believe in God and praying to him to stop me worrying and give me strength has definitely worked for me! By the way, I say a prayer for all of you anyway, even those who don't believe!
Good to read all your wig experiences. I am getting mine on Thursday and can't wait as my hair is falling out at quite a rate now. Can't run my hand through my hair any more! If I can just keep what I have until Thursday, then once I have the wig I'll get my husband to shave off what's left. Doesn't bother me at all, but I do worry that it might be emotional for him, although he says it's not. Think he is just trying to be brave for my sake.
After my first chemo (24th November) I came home and had two lovely big bowls of home made soup. NOT a good idea. Now I can't for the life of me even think of soup. My next FEC is due on 19th December and I am going to eat nothing but toast that day. Maybe if I ate nothing but chocolate, I would go off chocolate for life?

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Re: Starting Chemo in Nov 2011

Hi Audreytoo
Well have been resting alot ,the hospital have said they will try second bloods and chemo on thursday so am keeping my fingers crossed i will be ok , hope all goes well with you.
Just feel with this bl---y cancer there no let up .
But on a good note my daughter has just got a puppy so feel brighter today love to everyone xx

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Re: Starting Chemo in Nov 2011

LL - You have every right to protect your health just now. Sounds like you've got a good friend there and you can make it up to them another time.

I'm also fond of Yorkshire tea. Hope there isn't a researcher about to identify a link to BC out there.

Lulu - They brought me in a bit earlier last time, so I was wondering whether it was in case they needed to repeat the bloods.

Judes - I might be on 8 as well. Waiting to see what my onc says on the 19th. I think she must be a bit on the fence with the 6 or 8 debate just now. To be honest I'd rather do 8 if 6 is enough, than do 6 and find out it's not the hard way later on.

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Re: Starting Chemo in Nov 2011

Afternoon
Libralady, enjoy your meal without the little boy! its not worth the risk and your friend understands anyway so don't feel bad about it. Put your self in her shoes what would you feel.......................I know just from reading your posts what a kind hearted person you are and you would readily agree to leave your child behind in the same situation.

I feel better today, The house is decorated lovely, my daughter has just left (after having made a massive Shepherds pie for us) and the world just seems a nicer place today.

I do have a question........... we want to build a porch in the new year and I was advised that building works were a no no due to cement and dust etc............its only a small one (will take approx a week) any thoughts regarding this? would you risk it or definitely put off the works? any feed back gratefully received. Shelle xx

Libralady
Member

Re: Starting Chemo in Nov 2011

Wishing you all a very blessed Sunday. Prayers going up for all of you today.

FiloSofie - glad your dose went well yesterday and praying SE's are non existent or minimal.

I'm getting together today with my close friends and thier families for an evening dinner. Really looking forward to it. I however feel terrible that we've had to ask if anyone is sick to consider me due to my low immunity and one of my friends little boy has a cold so she is leaving him behind with his big brother (who wasn't coming anyway) I feel so bad about this. My hubby has a minor sniffle at the mo but my friend who is an RGN said last night that the thing with kiddies is colds often present with other infections and because kids are not vigilant about hand washing,nose wiping etc etc! In theory they present more of a risk.

I just feel terrible but I will feel even worse i end up with an infection being due for chemo no.3 in a week from now.

Help me out girls.......what should I do? My friend is perfectly ok with it,but my caring nature is giving me a right old rollicking.

filosofie
Member

Re: Starting Chemo in Nov 2011

Evening everyone

I had my second dose yesterday. I'm on 9 dose schedule: 3 epirubicin, 3 tax and 3 CMF with 15 rads in between the 1st and 2nd CMF (there's some evidence that doing rads during gives small advantage. My nurse yesterday actually asked me why I was on such a horrible chemo schedule when I had a stage 2 & grade 2 tumour, but I had 8 positive lymph nodes so I guess that's why. Looking through the trial results there doesn't seem to be much benefit of various combinations though tax does seem to make some difference with positive lymph nodes. One thing that varies between us is whether we are having chemo before or after surgery. Obviously after surgery they have a much better idea of nature of the tumour and lymph node involvement so try to ensure we are not over or under treated. On the other hand chemo before surgery gives a much better view of how effective diff chemo is on your tumour, and they have further treatment in hand post surgery if necessary. A lot of these marginal differences come down to clinical judgement. Both my BS and Onc are very research active so I think they're making the right decisions.

Decided to give the cold cap another go yesterday and it wasn't as bad as first time, partly because I knew what to expect and partly because nurse tucked some gauze in to protect my forehead. Still have bruises from chin strap though. Not sure I'll do it again though. I have my very expensive European hair wig reserved and know I will need it eventually as I'm losing strands of hair pretty constantly. It's only because it was so thick that I can still get away with it. I'm saving the hair that falls out at home. Is that weird? I suppose I feel it gives me some idea of how much I'm losing. Perhaps I can weave myself a memorial garment at the end, or perhaps I'll donate to the birds for nest building material next spring.

No SEs yet. At least the low neuts last week and the hair loss shows something is happening. I begin to wonder when I see what some of you guys are going through - my inability to taste olives seems a bit feeble by comparison.

Jackie I'm shocked at your neglect by staff in your unit. You should have a nurse keeping an eye on you all the time even if s/he is looking after other patients as well. We have people coming round with sandwiches etc and drinks. There is also a hot drinks machine in the waiting room which is free for patients. They also offer heat bags etc. I think taking someone with you if you can is good advice, even they can't be there all the time. If the staff and volunteers aren't attending to you then a friend is very useful for chivvying them up or fetching things for you. Let's hope it was just a one-off. Maybe they were a bit stretched that day which combined with your first time nerves would make you feel more neglected. Next time you go in why don't you ask them at the beginning where and how you can get a drink and something to eat. This might prompt them to make you feel a bit more comfortable.

Ah well better prepare for another steroid fueled restless night.

bgboo
Member

Re: Starting Chemo in Nov 2011

Hi Ladies
I don't often post but I do log in every day to read all the posts.
I was supposed to have 3 Fec and 3 Fec-T then Herceptin for 12 months then rads and Tamoxifen for 5 years.
I have a major needle phobia so had a picc line put in before I started chemo.
I have been so worried and scared of having injections when I start on the Fec-T that I had a bit of a breakdown when I went for my 3rd chemo last Wed. I told them that I wasn't going to have anymore treatment because I just cannot handle the injections. ( 7 years ago I suffered a heart attack when a nurse was going to inject me in the stomach with an anti blood clotting drug, after a hip op).
Anyway the Onc said I will now have just the Fec for the remaining 3 and then the Herceptin, Rads and Tamoxifen.
I would like to say thank you to everyone for your posts, I am so glad I found this site.
Denise xx

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Re: Starting Chemo in Nov 2011

Hi Josie1

Just take it easy and get plenty of rest. Have the hospital said when you can have your next chemo? I know what it feels like to have your chemo delayed. I should have had my 3rdFEC last Monday but my white blood cells and neuts were too low. I had my blood test taken yesterday. I rang the hospital for the results and I can have my 3rd FEC on Monday. I have been so disappointed all week. I really feel for you, so just hang in there and get yourself well enough so that you can have your next chemo soon.

Sending you big hugs
A

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Re: Starting Chemo in Nov 2011

Hi ladys well been in bed all day trying to rest as blood platlets low and hospital told me to rest but i felt ok on first chemo so just got on and did what i normaly did also couldnt say no to anything or anybody , but feel like i should be doing something its so hard but realy just want 2nd chemo and and be ok for xmas for everyone .
Am so glad i found this site as most of the time i just read most of the forums as there so helpful and think that there are so many of us with so many storys that make me sad and happy but most of all so very very hopeful xx josie1

Daysie
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Re: Starting Chemo in Nov 2011

Hi Audrey - yes I love the heat pillow, have that as well and the bowl of water, think my hands were extra cold lol

x

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Re: Starting Chemo in Nov 2011

Good afternoon ladies.

It has taken me ages to read all the posts.

Lulu - I love the pink wig

L4W- After my last FEC (no 2) I suffered dreadfully with indigestion and wind. I took rennies (which I do take on occasions) but they didn't work. I had some lansoprazole in the house which I had taken previously when taking ibuprophen as ibuprophen upsets my stomach. I rang the unit to check if I could take lansoprazole, they agreed but told me to speak to my ONC who I was seeing 2 days later. My ONC said that I could take lansoprazole right through my chemo whenever I thought I needed it. The lansoprazole worked for me. Therefore I suggest you ring your chemo unit and ask them if they would prescribe you lansoprazole, they may refer you to your GP which they wanted to do with me until I told them I already had some in the house.

Jackie - That's a long time to go without a drink. I am really suprised that no one even gave you a glass of water. My hubby comes with me so he can always go and get me a drink. There is a free drinks machine for the patients in the unit's waiting area. Chemo buddies can go around the corner to the little cafe and get themselves a drink and anything to eat and bring it back into the unit. We are provided with sandwiches, crisps, jelly, ice cream and bananas if we are there over lunch. This is brought round by a macmillan volunteer, who also brought round tea, coffee and biscuits mid morning. I must admit I wouldn't want to go for chemo on my own, everyone seems to have someone with them. No one seems to speak to anyone else they all keep themselves to themself. There are also men there having chemo as well.

Paula - I wear gloves when I travel to chemo and try and keep myself warm by wearing an extra cardigan. Before I have chemo, I have to soak my hand in warm water, then when I am hooked up and having saline my arm and hand has an electric heat pad put around it.

Have been busy today so tired now. Just going to go out to the local craft centre for a coffee and cake and to have a look around the gift shop.

Hope you are all having a good day today.

A

Daysie
Member

Re: Starting Chemo in Nov 2011

Shelle - I'm with you on the Yorkshire Tea, it's my fave the Yorks Gold blend, lovely! Thankfully my taste buds and smells have so far remainded normal!

Judes - thanks for the link, I am interested in the mind over matter stuff, I think if we can learn to control our minds more the worries calm down.

Jackie, I got the 'jitters' yesterday when I sat down in the chemo unit my legs were shivering a bit like jelly and I noticed when my chemo was going through and I lifted my hand it was also jittery. I think it's the fear of seeing the tray of drugs, once they had all gone through I felt a little light headed, but it passed after a half hour or so, feel a bit tired this afternoon, but think that's because I've got the heating on full blast and having a nice relaxing day.

The chemo nurse gave a handy Tip, she said all those going for chemo when they are in the car travelling to the hospital to wear gloves and keep them on, also take hot water bottle in the car and keep hand on it as it helps when they give the injection.

I've got 6 x FEC-T once every 3 weeks on a Friday. The Oncy said to allow up to 8-9 depending on how response is after scan at half way. My next one is 30th Dec which will be half way! Mastectomy around March time, then 3 weeks of radiation (15 times) at 2 minutes a go. My boob seems to have gone smaller than the normal one, I think it will be like a shrivelled up prune by the time I'm finished, which is probably why they are going to cut it off lol.

Think I'm going to book a luxury holiday for next summer 🐵

Paula x

Libralady
Member

Re: Starting Chemo in Nov 2011

Gurrrrrlllll - I have plenty of fat for all of ya'll

Libralady
Member

Re: Starting Chemo in Nov 2011

Hey Kym

Im the same as you x4 FEC then x4 TAX then x15 rads over 3 weeks.

I too wondered why many have 6 and im on 8 and also wondered whether my Onc isnt telling me something - damn demons!! I hate the dark thoughts. Sometimes I get scared and dont ask. Im still all new to this and I think Ive had so much info thrown at me in recent weeks I cant handle anymore just yet.

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Re: Starting Chemo in Nov 2011

just done my 10th out of 10 injections. yay. i thought i'd try under my belly button, just for a change, but it was way more sensitive. tip: stick to the fatty adjacent areas (not that any of you have fat stomachs, of course).

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Re: Starting Chemo in Nov 2011

good wig paula x

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Re: Starting Chemo in Nov 2011

hey, thanks lulu. my onc is supposed to be a real hotshot, works at UCH and harley street, publishes loads and everyone speaks of her in revered tones. i'm actually having 4 FEC then 12 tax in lower doses, weekly. she said it was the latest 4GL (?) regime, based on research in germany and increasingly used in america (or something). i did ask why i was having more and she said it's because i'm young and healthy and can tolerate it, and maybe because i have grade 3 tumour, multifocal, with 5 nodes affected. she said she wanted to give me the best chance. and i trust her, so am ok with it, although it's six months of chemo and does feel like a bloody endurance test.

i have an old red party wig somewhere in my cupboard, going to dig it out.

xx