Starting Chemo in December.2012

Going through breast cancer treatment Chemotherapy monthly threads
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I have had 5 x FEC and still have plenty of hair using the cold cap - yes it is a little sparse on the crown but that is where the cap doesnt fit tightly but not a prob as I have perfected the comb over!

Silk pillow case has really helped I think as hair not stresses when you twist an turn during the steriod nights!

My hair started to shed the day before FEC2 and has shed some everyday since, sometimes more than others but, as I say, still plenty left although to be fair a lot thinner than it was (don’t really notice when it thins gradually) and have not had to wear hats, wigs or scarves.

Good luck to all trying the cold cap.

Jayne x

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Cybele-I have been eagerly awaiting your rat story. Excellent-we need a good horror story at this time of year.
I live in a very average mid terrace house but we regularly get mice under our floor. When we first became aware of their presence my husband used humane traps. Half way through the night they’d scamper into the trap then rattle around, clearly in distress whereupon my husband got up, took mice out to rehome them at the other side of a distant river. Obviously this didn’t last very long and we now have regular visits from the mouse man who puts poison down. Unfortunately the mice in these here parts have gotten wise to the poison and they store it rather than eating it.
I can just about tolerate mice-they’re field mice and quite cute really. Well, they’re cute nibbling on an ear of corn outside, not so cute in my kitchen cupboards swinging about on my swingy pot holder thing. But RATS! God I would freak. Maybe your sister should stick some epirubicin into the poison. See how they cope with that! Right enough it would probably cure their rat cancer and we’d all be overrun with them.
Cressida-I really, really feel for you. I’m only one chemo down and having a mini breakdown. I find myself tearing up just thinking about people’s sympathy. I took myself off to the doctor’s surgery today beacuse I’m so paranoid about my mildy sore throat. I’ve conjured up a pretty picture of me sitting in a hopsital bed on Christmas day phoning my husband to tell him where I’ve hidden all the goodies and insisting “No don’t visit, you and the kids have a lovely day”! I’ve also composed letters to my kids in my head in case I inadvertently die. AND I’VE ONLY HAD ONE CHEMO!!! I really think you were quite entitled to have a breakdown. You are also entitled to rip hospital curtains down, beat your breast and smash up all the nasty vials of poison. A full on psychotic episode is called for. I think you’ve shown remarkable restraint.
Anyway my trip to docs resulted in a blood test just to see if my wbc is on the way up or down. This has given me massive peace of mind.
Wendy-Good luck with your results today. I am really hoping you get good news this close to Christmas.
Mandy p, thanks for the info on drug amounts. Quite similar to mine. I’m 5 foot 3 and was about 69kg when weighed but I’ve lost a bit of weight and was hoping they’d adjust my quantities cos it seems like loads. Even though i’m carrying extra weight I do have a small frame-underneath the blubber- so feel the epirubicin has been a bit brutal. I was peeing red for about 4 days.
Anyway. We’re all still here, despite chemo and today’s non rat apocalypse. Only a few more days till Christmas. I will def. be raising a glass to all us wee Crackers on the big day. xxx.

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Maire - re epirubicin - I only peed red once, right after the chemo. Just looked for first time at the details, and I had 145mg of Epirubicin, and 1200mg each of the the other 2.

Jayne, that is very cheering news about the cold cap, makes me feel a bit more hopeful. fingers crossed!
BTW did you post something in the middle of the night and the ndelete it? I could have sworn I saw another post by you, and am now wondering if the lorazepam or theCyclizine are making me hallucinate…

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Wish i could understand these dosages. I seem to have more epirubicin but less of the other stuff. Wonder if it’s also to do with the size, grade/lymph node involvement.

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Hi Caroline - I wondered where that went! Yes, I posted a thanks for your blog, it cheers my up every night and so well written so I sneak into your thread for the link! Thank you xx

Re the drugs, I am on 6 FEC and have 200mg Epirubicin and 1000mg of the F and the C (all of which is called FEC100). I asked my onc why such a high dose as I was node negative, ER+ clear margins and 2.5cm lump and grade 2 (all of which I am told is about as good as it gets for IDC). He said that he gives the strongest that he believes his patient can stand based on health, weight, height and how they tolerate it and as I have coped well, he has kept me on that dose - also he mentioned that as I am not having Tax, he felt I would cope with the stonger dose of FEC.

Not sure if that makes any sense but like you, I had the same queries.

Jaynex

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Back from onc app. I am absolutely overjoyed could have kissed him. Bone and CT scan clear which is really good because as they keep reminding me I do have a large tumour… Just waiting for snb results which will determine 4 or 6 chemo. So bring it on I now feel ready for battle on 31st bring out the Tax. Might not be saying this at the time !

hope everybody else gets a little bit of hope for Christmas it sometimes feels like all bad news

Hugs

Wendy

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Wendy, I am so pleased for you. That is fantastic news. An early Christmas present.
Jayne-You’ve had similar diagnosis to me. I was 2cm, didn’t get clear margins but next time they went in the extra tissue was completeley clear. No auxilliary nodes affected (1 breast node was) er+ but also HER2 +.

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Maire, you and Chers relationship keeping us All amused Need a name for mine so any suggestions welcome don’t know how to put picture on but its a full bob with movement apparently! straighter and shorter than my normal length andthan my normal curly frizz but looks like it does when I have been to hairdressers . I am glad first treatment over too but am I having epirubicin, don’t think so but what do I know brain turned to mush today.
Lolly, thank you so much and please don’t worry about spelling just great to hear from you all .
Mandy I am still taking sleeping tablets as at least it gives me just a few hours of sleep where I am not crying, stressing, but give it a go well done you .
Cress sorry you had such a horrid day but welcome to diazepam club, they seemed to have taken anxiety levels down a little and my doc said they are ideal for this kind of crap we area dealing with so while we need them let’s have them. Hopefully we will be zonked out with them for some of time at least, give it a go. At least you are doimg Christmas thing I panicked and woosed out and haneed responsibility to 82 year olds mother in law who has a heart of gold but slightly deaf ad can’t see well, and my 25year old daughter who is quite stressed as it it. Oh we’ll it’s one day and my husband is working Christmas Day so we will do it when all this nastyness is over.
Wendy yes we will get through this together and thank you for being so positive. When sometimes we can’t be, good days and notso good days. Had my PICC line dressing changed today that went well so another positive.
cress chin-up we are all with you.
love and hugs to you all
cathie xx

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Jayne - thank you!! It’s lovely to have positive feedback on the blog - it’s up to about 3,500 hits now, after 10 days, so I’m really pleased!

It never occurred to me even to think about the exact dose of the chemo drugs until it was discussed on here.I will ask my oncologist about it when I see him on the 31st.

i had 2.7cm tumor, grade 2 ductal invasive, clear margins and one micromestasasis in the sentinel lymph node, which was why I had to have the chemo. It was either that or full node clearance OR rads on armpit, and I REALLY didn’t want a full node clearance because I am a swimmer and terrified of losing mobility/lymphoedema, and decided that chemo would be harder , but would be OVER in 4 months, whereas lymphoedema could last for ever.

Having been HUGELY resistant to having chemo, I then ended up in a position where it was clearly the best option. Also my surgeon found me an academic paper on a big study in Holland, where they compared women with micromestases in one node who had chemo, to those who just had rads.
There was an increase in disease-free survival over 5 years of 10% for the women who did have chemo. It’s only one study, and there haven’t been many done yet because they’ve only recently developed the technology to identify micromestases, but it was a big one, and a 10% increae is statistically very significant.

The 10% is obviously an average, but my oncologist reckoned that for me, with my particular tumour (ER+ PR+ HER-), ‘favourable’ tumor characteristics, not aggressive, the chemo added around 7-8% to my chances of disease-free survival for 5 years. So it seemed worth it. It’s also really important for me to have the Tamoxifen, because my oestrogen receptivity is 6/8.

Sorry, I’m digressing. My FEC is 75, the slightly lower dose. I will ask him t ogo into the dosage in more detail, though.

In other news, I just said 'B***er chemo! and B***er infection risk, and braved the crowds in M& S to do a little therapeutic Xmas shopping. We now have delightful gold and white Xmas napkins, loopaper and kitchen paper, with reindeers on , to cheer up our Chemo Christmas - totally absurd, but as far as I I’m concerned ,the more Magic and Sparkle the better!

bTW I am feeling very dopey today after taking a Lorazepam last night to help me sleep. They DO knock you are out, but you’re like a zombie the next day - they’re awfully strong. I’m quite reluctant to take one unless I absolutely have to.

You all seem to be taking Diazepam - what does that do to you? Does it help you sleep?

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hi christmas crackers, just a quick question, how do you go about getting a wig, as i have heard nothing from anyone, do i just go out and buy one or do you get one on the NHS , if so do they give you a prescripton or somthing i start my chemo on the 31st and would like to get wig sorted before hand, as there is not much time with xmas shops being closed, does anyone know?
lolly
x

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ps Wendy - BRILLIANT!
xxxxx

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Lolly - in my case a blokefrom the hospital’s preferred wig supplier came and talked to me about wigs while I was actually having the chemo, and he said they give you a voucher for I think 90 quid, and you can get one for not much more than that, but that a better big would probably cost about 100 quid more’
The nurse was meant to be giving me the voucher afterwards, but she forgot.I don’t know about other hospitals, but at mine no one said anything about wigs until day 1 of chemo. it seems to be the responsibility of the chemo nurses, not the Breast Cancer Care nurses.

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Lolly, I got a wig token when I saw the chemo nurse the day before my first chemo. She gave me a list of wiggy shops in my area and I chose my wig from them, handed the token over and that was that. I think you should phone the hospital where you’re getting chemo to clarify as it might be a diffrent procedure (I’m in Scotland). I would really advise getting wig before chemo. I was quite groggy and emotional the day I picked my wig. Had I felt better I may have had a bit more wiggy fun. Might even have had a glass of the sparkly stuff before I went shopping.
Good news for me today. My wbc is back up so I will def be partying at Christmas. Feel so relieved and so glad I went to docs today. Doctor and receptionist were really nice and I didn’t feel too much of a fraud.

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hi marie & cybele,
thanks for your replys, i will look before i buy now ,at least i can sort one out before i start chemo, then when i get my token i can get it, at least like you say i can enjoy the expereance before i start chemo, i am going to try the cold cap but very nervous about it.
thanks again very helpful

Marie,
so please about you WBC how we are so happy about the things we didnt even know about until this nasty BC

lolly
x

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‘Whatever Gets You Thru the Night…’:

today’s post on [color=#290cd4]http://chemonights.blogspot.co.uk/

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Just bought myself a silk pillowcase. Very little hair left but want to be gentle to the bits that are left and, who knows, this may help keep new hair snag free when it comes through some time in 2013.
Hope you’re all having a good day. It has rained incessantly where I am. Keep thinking of Cybele’s sister’s underfloor companions.

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Hi ladies i hope your all well-ish?

Well its DAY 4 for me still feeling quite good, but still feeling a bit sick. My body does feel tied. And i have got this funny mouth thing i think its where my taste buds are going. (i supose the metal taste) I am off a few food things and have been craving jam on toast. It is like being pregnant!!! Smells also turn my stomach.

My hair is awful i have washed saturday and today but with no products and hairdryer it is such a mess. I might not even do the cold cap next time. 2nd one is on the 9th.

I want to wish everyone a HAPPY CHRISTMAS and i hope you all have a lovely day what ever you are doing. Xx
Good luck for anyone having any appointments between chrismas and new year. Xx

Lots of love Sharon Xx

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Day 12 and my hair is still attached to my head - no sore/itchy scalp or any signs of it’s imminent fall out yet. Wondering if I can get past Christmas Day before it does a runner? Have felt tired and a bit achy last day or so - kept checking temperature and it’s normal so guess my bloods are just low and that’s making me feel a bit rubbish. It’s really hard not to worry about every little ache and pain though (there’s that paranoia again).

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Hi everyone,
cybele I have find diazepam helpful they take a little of the anxiety away and don’t make me too dopey I blame chemo mush brain! Also seems to lessen sobbing episodes slightly I have not taken lorazepam but I guess they are all designed to help us cope just a little better, go with what works.
Lolly re wig I go my form couple for weeks prior to when thought treatment was starting from although chemo was delayed a week due to infection so had first on 20 December Thursday. Got form from my breast carE nurse who sorgandie it there and then and told me to go to Wills Wiggs in Bromsgrove or Rackhams but I am in Kings Norton and so went to Wills Wiggs who were lovely at what a very emotional time I hardly said a word but my husband came with me. They just took form from me and it was all free the wig I had would normally cost £120 so I did buy a couple of hats and scarves from them . have also visited Macmillan Headstrong who gave me free scarves and tried to teach me how to wear them and I did cry there,
Lots of people also suggest night cap ha ha but apparently our new heads will feel the cold and you can get them on Macmillan website for about £3 I believe . Good luck and remember we will get our hair back.
Maire sounds great iidea about silk pillowcase will send family member or out for one immediately!
Saron, cold cap not for everyone but it was only your first one it works for lots of ladies. I declined it as I am prone to migraines and did not want to add to feeling rubbish as well with chemo but that’s just me. You will know.
Shelllebelle oh I am with you on paranoia. Have sent already worn out daughter for several more antibacterial hand gels and antiseptic wipes for door handles, taps etc as well as surgical Masks that II already have in stock. Taking temperature several times a day so you are not alone.
Happy healthy Christmas to you all and thanks for being there. I have to go for PICC line flushed next week ONC and bloods 8 January and all being well second dose of FEC on 10th Jan. Here’s to us all. Thinking if you all.
lots of love
Cathie xx

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evening crackers, sorry I havnt been on for such a long time , my 3 yr old does not allow me time for such things as Internet and when he’s in bed I’m attached to the settee and tv until I’m in bed not long after, ill do a quick history, my little bugger was 4.5 cm, and triple negative, I’ve had WLE with one undefined margin so a scrape is in order after chemo, I also had bilateral breast reduction , no node involvement , I was due to start chemo on 20th but had cold so it has been delayed until 4th jan, I’ll be having taxotere and the long one beginning with c, I’m also trying the cold cap but the nurse on chemo ward was abit negative but I’m still giving it ago , I stupidly put a colour on my hair and now read I’m not supposed to so let’s hope it doesn’t make a difference , it’s took me 3 days to try and read everyone’s posts , I’ll try and keep up so I know what everyone’s doing and remember everyones names, I just love Cher , she made me chuckle I hope she is fairing well and not too wild still , loving the colour as well , I’m like everyone else absolutely dreading chemo, I’m on my own with my little boy so I’ll be moving in with mum and dad for a few days after to see how I am as my little cherub is a hyper little bunny who does not sleep , he does not get his energy from me ! All the ladies using cold cap did you get dressed like an Eskimo whilst it was on , does it make you really cold , and I was told ill see my wig women on day of chemo where I’ll pick a style and colour then they deliver it the wk after , what joy! I will be giving it a little pet name , Settee is calling with a glass of wine before I’m being poisoned with the rest of you and won’t want a drink , love to everyone , xxxxx