Starting Chemo, June 2010

Public Archive
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I’ve just read the entire thread and it’s been interesting to see the various experiences everyone is having. As I haven’t posted here before so quick introduction.

Dx date: 31st March 2010 (aged 35 just two weeks before my wedding!)
Dx: Grade 3 IDC (15mm), Triple negative (ER-, PR-, HER2-), stage 1 (T1c-N0-M0)
Current BC journey status: Chemotherapy FEC-T, cycle 1 3rd June 2010, next cycle is 24th June 2010

I’m recently married and don’t have kids yet (which adds a whole other layer of complexity to this whole thing). There is a family history of BC and Ovarian Cancer and I’m currently awaiting my genetic test results which will determine the remainder of my treatment plan after chemo.

I’ve been signed off work since 26th April (had lumpectomy and SNB) and don’t intend to go back until after the chemotherapy is all finsihed because I’ve not done very well with it in terms of the SEs. So much so that of the first FEC cycle I was pretty much bed-ridden for 10 of the 21 days and my exercise was going from bed to the sofa to the downstairs bed to the toilet, etc.! It’s difficult to know wheter that is from the chemo or side effects of all the other drugs!

DRUGS I’M ON
3 x FEC then 3 x docetaxel (FEC-T)
I’m having Zoladex injections to try and protect my ovarian function because we haven’t started a family (were due to this year but cancer had other plans!).
I have Dexamethoasone 2mg tablets for the three days after chemo for the reasons someone else already stated (as well as infusion pre-chemo).
Metoclopramide 10mg to take as needed for the nausea but these didn’t seem to touch it all so they’re giving me something else in addition to this on my next cycle.
Lansoprazole 15mg for the heartburn/indigestion which I take daily.
Tevagrastim 30 MIU/0.5ml (Filgrastim) injections daily from day 2 to day 11 inclusive of the cycle to keep my white blood count up (district nurse came daily to do these).

In terms of side effects I’ve had a pretty rough time. Despite using a soft toothbrush, toothpaste with flouride and bicarbonate of soda and corsodyl mouthwash I still got awful mouth ulcers which made it hard to move my tongue and eat. Not that I had much of an appetite anyway due to the nausea. Best way to describe my days 1-10 would be ‘zombie’ (some days I literally wished I were dead) :slight_smile: I have done my best to maintain a record of my SEs throughout my first cycle (although as you will see I’ve been a bit lax sometimes) and you can see it online here: spreadsheets.google.com/ccc?key=0AkcPcm_rvRAzdGlFZTlRWWlOcmdaNXdnWUxQQVdUcmc&hl=en_GB

I’d like to shout out in particular to Carol (danjo) and Suze (Salsasuzi) who appear to be on the same cycles and dates as me. Back into the breach tomorrow ladies!

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good luck tomorrow everyone

Vickie
xxxx

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Morning all

Sorry head to fuzzy to read all of the posts. Feel v sick today am full of anti sickness meds. Just wanted to wish everyone good luck today. Dx

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Hoping for kind SE’s for all today! It’s harsh but we will get through! Hugs to all, Tina.

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Good Morning Ladies
So many posts since l was last on, that will teach me!
Good to see new faces, hope everyone is coping as best we can.

I am feeling well now, slight woolly mouth, but nothing to complain about, had a busy week, gardening dog shearing! poor dogs. also l had a Bit of a wobble!

Midge, Hope the sickness wears off, perhaps a change of sickness pills next time may help! don’t forget to keep a note of the side effect (while feeling sick and having a fuzzy head) I have only just read that you had no side effects, and were you mad in thinking it was not working, well l think you have your answer now! poor you xxx

Miadanu,Gosh you have certainly had some side effects, congratulations of your marriage, such a rubbish time, for you. Well never a good time to be honest! Hope you have something from you GP for the mouth ulcers! my record of side effects is written in my hospital booklet, not sure how you managed to do a spreadsheet while feeling so ill! But well done, and hope the side effect ease xxx

Tina, Oh l so agree with the ‘yummy mummy’ hair is sooo overrated, what a thoughtless stupid b****h, xxx

Suze, Hope your side effects are as mild as can be. Like you l had no effects from the steroids, the nurse said to take them first thing in the morning, so l would not be up all night! but l never felt hyper! i wish! i had no sickness, just felt it for 3 days, but still managed to eat, little and often l found best, could not manage a dinner. xxx

Gill spots and hearburn free, sounds good to me. just spoken to my wig lady, l keep trying it on, and not quite happy, will l ever be?? so today or tomorrow she is going to cut a little more off, and if l am happy, then l said she can cut my hair, hoping i can go really short, because l just want it over and done with now! had to go on the garden this morning to give it a good brush, hair everywhere, although no bald patches, and don’t want to get to that stage either xxx

Naomi, how is the hair, think l will be going for something really short, this hair falling is too upsetting. xxx

Carol, hope number 2 is easy on you, and you manage the allotment!! Take it easy. Did you ask about the injections? xxx

Wishing you all a good day, and those having peachy mother today, another one under your belt, so well done
Hugs to all
Sandra xxx

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Sorry, l it either goes into cyberland or l duplicate xxx

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Hello Gill
Well l have my wig on, been to the wig lady to cut my hair to about 2" all over, plenty of tears once home, but was pleased it has been done, too much falling out! family coming to dinner on sunday, didn’t want hair in their dinners!
Doesn’t get easier!
Hugs
Sandra xxx
PS will take a photo, but eyes a bit red at the moment! Oh and make sure you get some double sided tape for when you are in the car, or your flying wig may cause an accident!

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hello, ladies

well, Number 2 out of the way, thank goodness.

Afterwards, went to Garden centre (surprise, surprise) for a decent lunch while I was still hungry, Also bought some more fish for the pond (got a free replacemnt for the one that died on the way home)

Very tired when I get home so went upstairs for a nap & slept 2 hours! (can’t spell at all tonight, having to go back and correct all my mixed up words)

there was a lady at clinic today with the same surname as me (Swann)and they nearly got our records mixed up, How bizzare that we were in there at the same time on the same day. Anyway she had a fantastic long wig which was real hair, even had a parting. She paid £80for it from a shop in Manchester. I’m off there as soon as I feel fit again.

Feeling a bit ikky but had some toast with hummous and a sliced up nectarine, not all together. will have to have something else before bed, but don’t know what.
have also got the fuzzy head.
Suze & Vicky, hope all went well today

Midge- sure they will be able to give different ant-sickness
mine worked last time and so far this time but I know there are srtonger ones if I needed them

Good night, I’m off to watch the rest of Gareth Malone

Hugs to all

Carol xx

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Hi Peach people,

back from FEC no2. Had a really difficult time locating a vein that wasn’t aching and finally just about managed on 4th attempt. i am now a bruised ppincusion who has to go to The Christie Hospital before next FEC to have a hickmann line in as the chemo nurses highly recommended that I do to ensure treatments can continue.THEY WERE BRILL TODAY …HAD 3 OF THEM TRYING TO FIND A VEIN(oops caps)
So far no sickness, no nausea, made tea (wholemeal pitta with chicken mushrooms and onion sauce with salad and scallops yum) emptied and put out bins and am now sitting down for a well deserved rest.
Vickie popped in while I was having treatment which was so nice. I overtook the whole room as my son and his g/f popped in and came up in same lift as Vickie…they said they had admired her hair and never knew she was in this boat with us…the trevor sorbie look obviously works Vickiexxx lovely to see you and chat a bit…thank you x

Carol well done for getting no2 done…was a bit iffy as to whether I was going to have to delay mine till thay could get a line fitted…durn veins…I think they looked at where iWAS and thought ‘we’re orfffff’

Sandra, big cyber hugs re the hair, I know how you feel and am very there with you…but remember you said it was a sign that the peachy mother is doing her stuff. Nothing can be said to make it better but we are with you. I tried sending mine to the garden fairies too so thay can grow more new hair on trees for me!!! It was easier to brush outside than in house then have to clean it up. They told me not much point continuing with cold cap today as it was clearly not keen on being saved but I said for the bit of extra time needed to invest in today the I would do this one and see what happens…can’t say I didn’t try can you.
Gill…hope your wig arrives soon, have you got a nice sunhat that you could use in meantime…I really don’t suit hats but am getting used to wwearing one around garden/house for now xx My oh has had a no2 so I don’t feel too bad bless him
My steroids have changed this time and instead of two once a day for three days I have two twice a day for two days…wonder if I’ll have an hyper episode now!

Hugs to everyone else…have to stop typing as making me dizzy

Love n hugs Suze xxxx

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Hello everyone, best wishes and thoughts to all those in today, may your SE be minimal.

My hair started falling out this morning, I cried hard on my husbands shoulder for about 20 minutes then I called a friend over and we went into the garden and he shaved it all off. I dont know how I will feel tomorrow but now I’m just relieved its done and I dont have to think about it any more. Its baptism by fire because I’m going on a training course tomorrow and although I’ve decided to get a wig I dont have one yet!

Are you getting used to yours Sandra? Are they comfy or just really annoying?

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Just been reading the posts and saw that someone had a real wig for £80. I had the prescription for two wigs and was told I had to pay half to each £60 each but not real hair does this sound ok?

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Hi Lesley
Yes that sounds right, mine would have been £60 prescription, but l went for a microfilament wig, so had to pay private, it was about £163. The wig lady said real hair cost about £1000, So if someone got one for £80 has to be good!
Naomi, Well l have had the wig on since about 2pm, and it feels alright, never going to like our own, and l will probably just wear it when l am out, just trying to get used to it, who knows l may wear it all day every day! hate the thought of looking in a mirror and seeing hats or whatever will cover a bald head, and least with a wig l can imagine it is mine!!
Sandra xxx

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Hi Lesley…
it seems we are different on wig rules depending on where we live also! I was given a prescription for one wig with no payment due and sent to a place in Manchester called NU-Style who catered for my needs (lots of choice in styles and colours and a fringe trim included). My prescription wig would cost £110 to buy and I was allowed to purchase others if I wished so I purchased a second one for £98 with fringe trim included. I took them home with me on the day (as they had been trimmed ). Real hair ones were available to buy at around £250 but you coyldn’t use your prescription as part payment, it had to be a totally individual seperate sale.
Makes me wonder why each health service is different…possibly because they do their own budgeting. I suppose paying half each towards two wigs works out the same as me buying one and getting one free but what if you only wanted one???
Well that’s my experience…off to take the steroids now…be fixing the roof by lunch (in my wig of course!) hahaha
Gonna change the pic soon as I hate my hair on current one I look like something off Shameless!!!
Suze xxx

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Well that wasn’t fun!! Had first FEC yesterday and oh boy so that’s what sickness is like had lovely doctor though who came out and gave me a gab in the bottom and have felt much better ever since even walked to the shop with my hubby so he could buy himself a cream cake!! Bless him he promised not to eat it in front of me.

Hope you are all well.

Lots of love Joxx

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Jo, I Take it the jab was an anti sickness? rather than just a jab!!!
you never actually said!! Mmmm cream cakes yummy
Hope the rest of the side effects are mild
Hugs
Sandra xxx

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Well what a lot of happenings since I was last on…really must keep up!

Happy & sad to hear the stories…SE’sseem so variable between individuals and depending on drugs gievn. Had my 2nd FEC on Wednesday and just emerging from the post steroid slump (last steroid yesterday morning) - thank Goodness no nausea AT ALL this time but MAJOR weary today - moving from sofa to chair and back again with a 2 hour kip this afternoon for good measure. Feeling a bit more lively now so managing to tpye without too much chemo dyslexia!

Lesley - the wig prescription does seem to vary - I am in NHS WAles and got a microfilament wig for free, nothing extra to pay - liked the style so much that I didn’t ask about any other types, real hair etc. Haven’t worn ot yet thanks to the Paxman cold cap as no hair loss (yet). If I keep my hair a few weeks longer then that dreadful first 1/4 hour of the cold cap will be worth it.

Suzi - sorry to hear your veins shut off - did the nurses try a heat pad? I ahd a very painful vein for 2 weeks after my first FEC and not brilliant choice to go into for this one. The nurse put the heat blanket on for 20 mins before she tried the needle and managed first time and no vein pain afterwards so far.

Hugs and love to everyobe and sorry for the crap typing…
xxxSal

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Sandra, love the wig and the cheeky grin!

I went on the website of the wig place I was told about, they have some real hair wigs under the £80 but they go up in price as well.

Suze, I got my wig from Nu-Style too. Havn’t decided where to go for another one as I would like a longer one.

I had the heat pack on Thursday which helped. The nurse found a vein straight away.

Carol

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Sandra-just noticed the background picture which explains the “cheeky” grin!!

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Hi Ladies,
Carol,I was trying to get one up on Lesley! we now need to have a competition to see who can get the funniest background. This was sent to me by Linda (lindiloo) 12 French Oncologist! all for cancer!
I did try and wink in the photo, but it looked like l had a funny squint!! so l gave up! and just smiled!!

Sal, well done on finishing number 2! hope the side effects are not too bad, sleep and a bit more sleep, just do what your body want to do!!

Sandra xxx