Hi Lil H
Thanks for that - be interested to here of others who may ahve tried either the Brewers Yeast or the Life Mel honey.
Which Chemo are you having and are you going to use the cold cap. I have decied not to as I heard mixed reports about it so decided to just go for broke, lose the lot and then have a nice even new lot of hair when it grows back.
I had BC 14 years ago aged 31 - had a lumpectomy and sample ndes taken - all clear so only had radiotherapy.
Diagnosed again 7th Jan with new primary in other breast. WLE again and sentinel node biopsy - 1.2cm tumour, good clear margins and no nodes involved but grade 3 so recommended chemo this time as well as radiotherapy. Pretty terrified of the chemo and wish I could just get started on it so I can get it over with.
Good luck with the chemo.I was told that taking a brewers yeast tablet every day helps too? Anyone with any experience of this? would be interested to know about the honey you mentioned also.
Having hair cut Wed (day before 1st chemo),don't know how short I'll go,I've had long hair for many years so it's gonna feel abit draughty!!
I am about to start FEC x 6 on 19th March and I am anxious to do everything I can to help myself through what will undoubtedly be a difficult few months. I heard about Life Mel Honey being good for the immune system and wondered if any-one else has used it during chemo and whether or not they found it effective.
It is very expensive and I don't want to buy in a lot if not helpful.
I'm having something called EC-accelerated Taxol chemotherapy,they're gonna try to shrink the lump before removing it,I had a sentinel node biopsy 2 weeks ago and fortunately it hasn't spread to the lymph nodes.
I've got 4 lots of epirubicin + cyclophosphamide then 4 lots of Taxol.It's kind of a waiting game now,I'm just wondering how my body's going to handle it all,not to mention my head!
Let me know how you get on next week,and good luck!
Love Helen x
hi Little H - me too!! I start next wednesday, I went for an assessment for a PICC line where they put a line into your arm to use for blood tests & chemo etc as I have hopeless veins so I have to go in on tues for that and then wed for the first dose - do you know what you're having? I'm due 3 x FEC and 3 x Taxodere....mary x
My first chemo is on 5th March,now I've got an actual date feeling very apprehensive.I've got to go in a couple of days before not sure what that's for really other than signing a consent form.
Dreading the needle part,they always seem to have a job with my veins and end up ferreting around for what seems like ages.
My appointment's at 11am,I know I wont feel like breakfast but I'd be grateful for any advice on how best to prepare myself. Also how long does it take?
Best wishes to everyone
I'm from shropshire/powys border area,nr shrewsbury, not sure for def when I start but saw the oncologist last week and he said in the next 2-3 wks.....just want it to get going now....mary x
I am from Southampton, what about yourself? When do you start your treatment?
lynne - me too, I will prob need a line and am waiting for assessment and then get started.....like you say lets get it goin'....where are you from Lynne? Mary x
Your more than welcome. If you need any more info, just ask and if I can help, I will.
Yes I know what you mean about all the needles during the surgery, you even end up getting a bit blase about them after a while!
You'll find once your treatment actually starts, you'll feel more in control and it's a relief to be out of the 'wondering and worrying' stage of this bit of the treatment.
It's hard to explain to people sometimes that it's not only the physical side of this that's hard, it's also tough psychologically.
Good luck with your treatment too chuck and you take care
Love Sue x
Thanks so much for your response, am thinking of asking them to do the same for me after my first treatment. It was pretty rubbish when I was in hospital having a surgery, after they had finished putting holes in every place you can imagine, I was afraid to have a drink in case I leaked!! lol
I must admint that I am now getting to a place where I just want to get it started, sooner it starts sooner it is over.
Thanks again and hope all goes well with you
I have had 2 lots of FEC so far and I too have poor veins.
My Hickman line was fitted after the first chemo and just before the second.
To be truthful the actual fitting of the line was a bit uncomfortable but not painful - the benefits though once it's in, far outweigh the initial discomfort and definately makes your treatment a lot easier - mainly for you but also for the chemo nurses.
Also it eliminates all that routing about for veins at each treatment (not nice).
Just make sure to keep it nice and clean and after the first week following the fitting it heals up nicely and you do learn to live with it quite easily.
Good luck with your treatment and try not to be nervous - you'll find that the anticipation is worse than the actual treatment!
You'll be absolutely fine honestly - hope this has reassured you and keep your pecker up!
Love Sue x
Have really found this thread so helpful, I start chemo next Tuesday the 24th, FEC x 6. Have really poor veins so will have to have a line put in. Noticed some one else mentioned this, has anyone out there had one?
Was feeling really nervous today, had my hair cut off yesterday and all getting to me a bit, so reading this today was useful and made me smile too.
Will check in as I progress
Hi poppet, thanks for that I was dreading feeling as rough on the CMF as I do on the epi, it just drains me, I can do about 1 hour before I need to sit down and have a rest, this is for about a week, after that I start to feel a little more human again and ready to get back to work. Still every chemo cycle completed is 1 nearer to the end of the line and the radiotherapy then I hope a normal life again.
Best of luck to you for the rest of your course
I can tell what i have in the way of se on cmf i am now on my 2nd cycle of cmf 2 left as you say its given day 1 and 8 i find i only have nausea for a day dont even take sickness tabs having experinced the fatigue i had with epi as i could not get of settee with the epi and my head never felt right but on cmf been able to be more myself again for most of the time eating and drinking well the ony prob is wbc on the boarder but still managed to scrape in and have chemo.
Hope this helps a bit
HI Ladies,well 2nd chemo went ahead yesterday, I had a word with the nurse re anything I could take to boost white cells, but unfortunatly she couln't advise anything so will just get into the suggestions you have given me re teas etc, now getting as much fluid down me as possible to flush out of my system. Only trouble is I have allergy to penicillyn so the anti biotics they give me means I can't have dairy products 4 hours after taking tablets, and I eat loads of yoghurt, pro biotics etc to try to boost immune system, anyway nothing else we can do appart from plod along, I will try eagting liver and spinach this time to see if that will help at all. Anybody know how the CMF makes you feel after the epi cycle, I know its given on day 1 and 8 but will it flatten me for 2 weeks instead of 1? any comments gratefully received.
I too have had 2 cycles (out of 4) of chemo delayed because of low white blood count. I have another 4 cycles to go and like you just want to get on with it. How long was yours delayed? Wish there was something dietary wise to help boost it.
Ihave had chemo delated twice so far as blood count to low.Did your doc give you G-CSF injections for a couple of days?They are pretty good @ boosting immune system.
Diet wise not entirley convinced that anything helps ...You could try battering into manuka honey,leafy green veg..more red meat .
Take care & happy eating
HI, I have just had my second EPI delayed today as blood count to low, anybody got any ideas on how anything can help to increase blood counts? I just want to get on and get course over with as soon as possible without too many delays.
hi, I have just had my chemo 10days ago and due again soon i was told to drink alot as much as you can 48hours after and kept up with the antisickness and wore my sickness wrist bands and hoping to do the same for the second jackie
i start chemo not this week but the next and if i hadent read this comment page i would be totaly cluless thank you all yvonnexx
Thanks for all the useful post,i start my chemo friday 6th feb have to have 6 x FEC followed by radiotherapy for 1 month allso been asked to have a trial drug called Avastin for a year has anyone else had this?
Because of a phobia of needles and very bad veins i have asked for picc inseition to be put in and having that done this monday has any else asked for this to be done? if so what was it like?
Hopfull someone can put my mind at ease
All the best
Thanks for all the useful posts here-start 6xFEC tomorrow so may well be referring back to this thread often over the next 4 months.
All the best,
Just another newbie... Diagnoses confirmed 9 Jan. My 1st FEC is 3 days time so thanks to all (especially Jo and amandajane) as I now feel like I can go forward with less of a scowl on my face and a few questions answered.
All the best,
Diagnosed November. Having 3 FEC then 3 Taxotere, before surgery. Trying to avoid mastectomy if I can.
I have a needle phobia, but good veins luckily. Unfortunately, blood clot in 2nd week following 1st FEC. Found like many people that I liked salty things, like ritz biscuits. Told not to have unpasteurised dairy. Used to like salmon (fish eating veggie) but now cannot look at it long enough to consider cooking it! Advised not to eat old favorites if not appealing else risk going off them forever.
Find some foods give me a gullet pain, bit like heartburn. Gaviscon extra is ideal, as coats it in soothing covering.
Like pineapple juice, and green seedless grapes. And for constipation, eat homemade museli with dessicated coconut, nuts and cranberries, with shreddies added. Get from docs prescription for dioctyl (docusate sodium) and take 3 a night throughout chemo. Prevention is better than cure. And vasoline smeared you know where to avoid the soreness and piles.
If like me you bruise easily, don't worry about nosebleeds if minor, just don't blow too hard, and use beconase nasal spray if you already have perenial rhiniitus, especially when nasal hair falls out. Nose runs so much more quickly so hankies at the ready at all times. I found the FEC - probably the C - made my nasal sinuses very sore instantly on the C going in, so for the second cycle I was given a second steroid IV along with Piriton antihistimine. This had a marked sedative effect, so a friend (my mum on this occasion) had to drive me home and stay with me 2 days. No sign of nasal probs and best night uncongested sleep in ages. It is also true to say that the additional steroid and antihistimine will have had something to do with the issue of the blood clot as much as being given to alleviate the nasal symptoms.
Got an incredibly cold wrist and forearm while the chemo was being administered this time, although heat pack given and arm put into bowl of hot water prior. Nurse kindly got me arm heatpac to help this, but nearly fainted with antihistimine sedative effect combined with cold arm and needle phobia. Am being referred for hypnotherapy and CBT to help with needle thing, mostly cos having to have daily heparin injections into tummy for the clot.
Told not to trust takeaway food (as cannot vouch for cleanliness) and not to go swimming (lots of bugs in a pool area).
My hair started to come out more noticeably on christmas day, staying with friends. Had had it cut to a number 3 so only about a 1.5 cm lengths. At first chemo session, appliance officer came into unit and gave me a letter to get a wig free on the nhs from the shop I chose. Went there 5 days later, and chose a lovely wig that is very natural, coloured and styled beautifully and makes me look 10 years younger I am told. Mostly wear scarves, but now that hair is mostly gone, really not bothered (but it had worried me more than the diagnosis originally). For the last week, got 4 slugs of hair from the sinktrap with every shower. Only fine down left now, so like a newborn (in that respect anyway!)
Recommend a prepay prescription cert this month only, as will last until April, and then they are free for cancer patients. I have had 7 prescriptions already in the last 4 weeks. That has included injections for clot which most people will not have. Please do give your cancer group a go locally, as I found out lots about what to expect from friends I have made from there. Due to my clot, staying in for injection, and thick snow, I couldn't make it to the group this week, and they sent me a card which was SUCH a lovely thing to receive. Get all the support you can! Good luck.
I have posted this for new user Diane
This has been a great source of info and inspiration for me. I am new to this website and was a little hesitant to log on as feared that there may be a little too many bad days described. I'm 36 and was diagnosed 4 weeks ago, have had a mastectomy and start chemo next Tuesday. I have been fine with the mastectomy and because I knew exactly what was happening I found I wasn't nervous at all. Even my 4 year old girl has taken it all in her stride - although she was very disappointed that Santa hadn't delivered the new boob and that I'd have to wait till next year! (Better be a good girl then!)
I can't say the same for chemo however - I think its because everyone has a different experience and I am just hoping that the effects won't be too severe. I have to admit that my first question when told about chemo was about my hair - have quite long hair which my daughter loves and uses as a comforter when I cuddle her in at night so my main concern is what her reaction is going to be if I loose it. Guess I'll deal with that if and when it happens.
The list has been very helpful and thanks for the heads up about the constipation - as someone who has suffered since the surgery - it is good to know I may have to up the medication when required!
I hope that a positive attitude is going to get me through this - along with the odd glass of vino.
Best wishes to everyone.
Sandyb, what a great post. I totally agree about the positive thing - I panic when I read some of the horror stories around but now just try and keep an open mind about my treatment and take each day as it comes. The hair thing is really bugging me. I'm having 3xFEC - 2nd one due on 5th Jan, the 3xTaxotere. I have ordered a wig, but still keep panicking when I think of being bald! It's driving me nuts! I can joke about it til the cows come home with everyone else but I'm just dreading it soooo much. But good to hear it all comes back and some people have said theirs had started to grow even before chemo had finished so anythings possible!.
Best wishes, Pat x
Dear Ayojoy, Ive just read your post and I too had chemo before my op. (I was diagnosed in December 07). Here I am I year on on my way to recovery. I met lots of other ladies over the year who had the chemo first and are all doing fine. Infact we had a celebratory day out a couple of weeks ago. We drank lots of wine and cried alot ....tears of happiness I might add!! You will be there in no time. Stay positive and surround yourself with people that love you and people you can laugh with. I met a great lady during chemo and we made a decision to only listen to positive information (some people just love to tell you horror stories!!) Im sure its what helped us through this.
With regards to your hair I can absolutely understand why it is so upsetting at the thought of losing it. I like you had really long thick, dark Diana Ross type hair. It was my trade mark!! When my consultant told me I had cancer all I could think about was being bald. My consultant told me this is a really common reaction and to not feel silly that you are feeling that way.
Not everybody loses their hair. I tried the cold cap but unfortunately for me it didnt work However, I met ladies that didnt lose any hair and some that their hair just thinned. Everybodys different. Once I had actually lost all my hair I was ok. It was the process that I found distressing. But again, here I am one year on and my hair is growing back like wildfire!! (it took a couple of months to get started....a bit grey and fluffy at first) but now theres no stopping it and its even nicer than it was before!! You will be ok. I know its easy for me to say but I promise you before you know it you will be looking at youself and everything will be growing back.
Good luck and please let us know how you are getting on. love, Sandyb x
How all these comments bring back memories of last year. Best wishes to all who are still on treatment this Christmas.
A cold Guinness had the same effect on me, SuperS. Though I don't think it's recommended!
BUT also drank lots of water during/after chemo...and even now drink much more water than I used to, pre-chemo.
I recommend a small glass of fizzy wine in the form of Cava or, even better, champagne after every chemo.
Reduces nausea and lifts the spirits.
As we could not go on holiday I splashed out on a comfy sofa (our old one was second hand, small with wooden arms) It meant that I did not have to go to bed if i was tired. Overwise it was just to tempting to spend the day in bed. It is still great a year later.
Good luck to anyone about to start
Agree linseeds are useful - I think the golden ones taste nicer.
You can smash them up a bit in a blender and then sprinkle them on cereal, if that makes them easier for you to take.
I also used to add them to the mixture when I was making fruity flapjacks, which are already high in fibre.
Hi narnia, you'll have to confirm the treatment regime with your oncologist, but in my case, I have 6 cyles as well, every three weeks (21 days) and it's one dose given on the one day. There's no way my body could handle six or seven treatments in one week!! I'll be having surgery on Jan 8 and radiotherapy afterwards....I only hope the radiotherapy is not as horrid as the tax....
well, here I am in the chemotherpay suite...............................news yesterday was the cancer was in my sentinel node, so now facing chemo sometime in January.Will meet the oncologists soon, but probably after christmas now.I'm told i will have 6 cycles, once every three weeks, but does this mean one 'dose' every three weeks, or is every day of that third week? I see some of you have problems with constipation............senna never works for me, i could take several and nothing happens! So, when needs must, i use Dulolax,very efficient stuff. I'm also going to have radiotherpay, all prior to the node clearance, and then surgeon says he'll tidy up any wobbly bits of my scars while he's at it
I'm had my 5th chemo on Dec 1st (3 FEC + 3 TAX). Was dx back in August for BC.
The tips are great, thanks. Especially about taking senna before the constipation starts. I'll definately do that for the 6th and final one on Dec 22, which means I'll feel horrible for Christmas. This constipation is the most horrid thing ever! I took the maximum strength senna last night and it hasnt quite kicked in yet...I pray things will improve by 2moro.
Does anyone experience crippling and throbing pains in the lower spine when u try to sit or stand and legs feel like they are going to give way?
Just to add to the previous post about wobbles. I had mine after chemo No.3. I really had no idea how I was going to find the courage to walk back into the chemo suite but did and have coped better ever since.
Sorry, I can't remember who it was who said she was very weepy at 2nd chemo and thought it was cos hair falling out - my breast care nurse said a lot of people have one really wobbly chemo emotionally - with some it's 2nd and some it's 3rd - just so you know what's causing it as well as hair-loss-distress! - with me was 2nd and I was all for finishing treatment, but the lovely breast care nurse was so gently caring that I did go back for the rest (in part, not to let her down!).
Advice I had from the team was also - soaked linseeds to help with constipation as well as the drugs - if you can manage to get 'em down - I'd soak em in juice and not always managed to get em eaten.
And the biggest advice, was to drink LOADS (2L/day) water (tonic water, flavoured water etc, ) to flush away the toxins - cells killed by the chemo. This also goes for radiotherapy, and makes a difference on how tired you feel going through that. Drink lots = less tired. Really worked for me. Drink less = feel c r a p.
The waterworks do adjust after a week or two, up to a point...
Great, useful thread, thanks all.
I was diagnosed with IBC on fireworks night! a date i wont forget for a while.
A good tip i had for constipation was to start taking senacot the day before Chemo and you can get lactoluse from Boots if the senacot need extra help.
I've avoided to much hair loss by using the cold cap, it has thined a bit but hopefully it wont desert me completely.
My first Chemo wasn't to bad but my 2nd (yesterday) has pretty much wiped me out, listen to your body is the best thing to do, if you feel tired, go back to bed.
I've got plenty of meals prepared just in case and have found fruit jelly to be lovely when your mouth is feeling icky.
All the best to eveyone
Hi, could I add that keeping your chemo arm warm before treatment helps when trying to find veins, i used a heat pad on the way to the hospital. Essential oils for aromatherapy during treatment and after when visiting the loo are also really good for getting over the nausea. Relaxation tapes during treatment(on an MP3) and for going to slepp are great.
I am so glad i found this list its saved me some work as i was just about to do a 'TIPS' list for my friend who starts chemo tomorrow. Will just copy and paste the tips from here instead.
Oh that constipation i remember it well. Infact i still suffer from piles as an after affect from it all.
Ayojoy1 let us know how you are and also how the hosp appt goes on Monday. its so AWFUL when you are first diagnosed infact its all AWFUL but heres hoping the chemo shrinks things. One of my friends had to have chemo first and is very well 10yrs on.
Hi everyone, the one thing that I remember worst about the chemo is the terrible CONSTIPATION i suffered the first time - so when i went through the second lot I made pretty dam sure that I took Senna tablets before I got the constipation and although I had it a bit - it seemed to work, so rather than wait till you get the constipation sort it out before the horse has bolted if you know what I mean!
Hi all I was only diagnosed last thursday 27/th Nov 2008 , there was a lump I didn't know if it was a lump or not at first but as soon as I knew it was deffo a lump I got to Drs the next morning ! ( which was good ) the Dr said has it been hurting ? I said yes it has been like a stabbing in it ( not all the time ) he said that was a good sign ! . Got my appointment for hospital the next week ! . I thought it wouldnt be cancer as no body in our history ( as far back as 5 generations ) has never had it !
When the consultant exanined me she drew on me , then she drew on me again ( I knew this wasn't a good sign ), I said to my hubby " I think they have found another one " then went for a mamogram ( which wasn't as bad as I feared ) and that nurse said " you have a lump on your left breast I said "yes" then she said " you also have one in your arm pit " so I said " well I didn't know about that but I figured it out when consultant drew on me". so then I went for a scan and also a core biopsy ( which surprisingly was not as bad as I feared )! I had 3 from my breast and 4 from my armpit . Then I was taken to a quiet room with my hubby , the consultant came in and said " you actually have 3 lumps ( I thought oh my god ) then she said but 1 is a cist ( a small snippet of good news I suppose ) but we think the other 2 are cancer ( bombshell or what ). I asked might the other 2 be a cist she said deffo not.
But she did say I dont want to overwhelm you with too much information at the minute but she said I have chemo first to try and attack the small one in my arm pit as that is a enlarged lymph node !
Then surgery .
Do all people who have chemo loose their hair?????
It is sods law ( honest ) I have never had my hair long my mum wouldn't let me, So ths is the longest I have ever had it ( I am 41 now)
God why am I even bothered about my hair ( it should be the last thing on my mind )!!
I am going back to hospital on Monday to discuss treatment and such. so thats where I am now !
cheesed off to say the least my poor kids are deverstated as is my hubby.
Also I did want to make the point that a young girl who posted yesterday ( I couldnt log in ) said her dr said it was good if her lump hurt I don't want to frighten her if she reads this but mine was hurting well it was like stabbing every now and then and also tingling sensation.
The consultant told me it is a myth about it's nothing serious if it hurts.
I would like to say I'm sorry if I have posted on the wrong bit this is my first time here !!!
and may I say GOOD LUCK TO US ALL AND GOD BLESS !!!!!!!!!!!!
The hospital bag is a very good idea, as if you're about to be admitted you certainly won't feel like packing one. I recommend taking some Dettox wipes for the hospital bed, mine has had someone else's blood on it the last 2 times I was in.
You're absolutely right about Crocs not being so good for this weather, Julie!
However, I've just seen some new winter 'furry' lined ones, which might suit some people
For sore feet whilst on taxotere, smother them with E45 (or cheaper acqueous cream, which is just the same as far as I know). Someone else recommended Crocs, which are great but not ideal in this weather. I have found the Ugg type boots fabulous - soft and warm, and still fit when your feet are sore and/or ankles are swollen. Mine are the cheapies from Primark (Â£6!), but I imagine the real ones would be even nicer.
I've had FEC in 2006/7 and was really sick for the first few cycles until I asked them to prescribe a newish antisickness drug called Emend. You take it 1 hr before your chemo, then 1 at the same time the next two days. It's been brilliant for me. I finished 8 sessions of Taxotare from Jan to June and had it with that and am now on another chemo regime 5FU over 72 hours and Navelbine. Again I've insisted on Emend and touch wood no problem with sickness at all. Ask or insist on it. You'll be much better I'm sure. It's bad enough going through it all without the dreadful sickness. makes the other effects easier to cope with I think if you can sort the sickness out.
Good luck. Hope this helps.
Just signed up to this site - it has helped enormously readings some of the comments and particularly the above tips about chemo.
I had my first FEC on 17th Oct and have never been so sick or felt so awful in my life. The anti-sickness drugs had no effect - not that I could keep them down!! By week two I felt much better and tried to make the most of these good days. I felt very anxious prior to my 2nd FEC on 7th Nov - but this was so different. I told the nurses about the sickness and asked if I could try suppositories in stead of anti-sickness tablets. They seemed to have helped coupled with the fact the FEC was delivered far more slowly and the lovely nurse let the saline drip continue to run whilst she was writing up my notes. Have felt very tired and weepy this time - had my last wisps of hair shaved off today so think that's made me emotional. I don't feel so alone now reading all your comments.
Does anyone else have a problem eating dairy products? I just can't seem to stomach milk so can't drink tea or coffee and herbal teas taste pretty foul too. Orange juice isn't pleasant either - but pineapple I love.