chemo kicks off 20 May - any good buddies?

lisaf · 15 July 2008 23:03

Hi all, apologies for the missing in action girls, im back on board, so soz I havent been around to offer support. Hope you are okay xxx
Had a real struggle with this one, took a week to come round but to be honest just been down in the dumps, think Im trying to hold it together for people and think cos felt crap a bit longer it dragged me down, but hey hoy. half way so went out and got drunk with friends, not the best thing to do but havent been on this site as wanted some normal cancer free days but it doesnt stay away for long. Been to talk about new chemo, change to taxorate next and sounds like im in for more suffering, my needle phobia wasnt impressed with the thoughty on needle in my fat tum day after chemo, steriods beforehand and have to have antibiotics and parocetomal from 5 days afterwards as will suffer lots of bone pain and very very low immune system - you know me its more the fear of whats to come rather than the actual. thanks for your concern lily - on plus side had look good day today which had lots of goodies, genetics tomorrow and really scared to hear the facts with it being so much on both side, scared they will suggest masectomey on other side!!! Ovaries crap has been put ba k, couldnt handle so may appointments together so waiting until end August - cant see the rush as cant do anything whilst on chemo!

Well after all my twining how is everyone else - Lily, im sure the spot on xray is nothing but got everything crossed for you! that horrid taste has stopped with me a lot longer this time, wondering if its cos I didnt suck a sweet this time? felt like I could taste the drugs taste the whole time, got slime and sore gums and loose front teeth?! what a picture eh!

Hope everyone okayish, to everyone, good luck and hope you are all coping with it.

Off to homeopath next week to see if anything will help with next three and getting worked up
xxxx

system · 15 July 2008 23:45

Aw Lisa sounds like you’ve had a lot to deal with at once yuk. I must admit this is starting to become some kind of normality for me for now and the thought of changing and neuts and ovaries… .blurgh. Not thinking about that stuff myself, distraction is a great thing.

Hope the homeopath can help. You’re not down in watford are you as my mum’s starting to become a bit of an expert

Lots of love

Angei

lisaf · 15 July 2008 23:56

nope in sunny whitehaven, not!! just having a down day could be back on form tomorrow and fighthing head on - just feel like life been tookover but its my choice to stop it taking over and get cheery head on. Think its cos im so touched as my friends have all clubbed together to pay for the homeopath but heard she wants to talk about your life and have some tough times when hubbie died and not looking forward to going through it as wanna keep fighting. Worried cos of family history visting genetics tomorrow and worried that might suggest another masectomy as well as overies out - ouch!!! off to bed as starting to get addicted to big brother which aint good - tomorrow is a new day hopefully sunny and better outlook.

Glad you are doing okay
xxx

nicky08 · 16 July 2008 07:40

Hi Lisa

I hope you get through this bit really quickly - sounds like you have a lot on your plate at the moment and too many decisions or discussions to make. Post chemo days always get me down and if it’s dragged on longer this time no wonder it’s affecting you. You are a fighter so you will be back to full power soon I’m sure Take care and have an moan at us today if you need to. Watch out for big brother, my daughter is also addicted to it, but what else can you do when you feel cr@p - I don’t think it will hurt you in the long term!

Take care

Nicky xx

system · 16 July 2008 08:57

Morning…

It’s funny how much our emotions seem to run in parallel sometimes. I was feeling really sorry for myself pretty recently (just after in laws went home, but hey they do have that capability, ie talking about ex girlfriends of your fiance when you’re fat and worn down… thanks for that

Lisa hope the genetics visit goes OK. my turn next week over in cockermouth. It’s going to be odd for me as no history on my mums side but dad’s side is a bit of a blank at the moment. They said just share what I do know. Haven’t spoken to Dad since I was 16 and seeing as he sexually and mentally abused me for the better part of 8 years I kinda decided that as I managed to put that behind me I’m not getting back in touch as it would not be a healthy happy family reunion if you know what I mean.

Don’t worry about talking to the homeopath Lisa it’s not like sharing with a psychiatrist. Here’s an example my uncle died pretty suddenly from organ failure (gulf war syndrome we think) and a few years later I was struggling with the business and was paranoid about dying and she helped fix this spiral with some help for the grieveing that I didn’t even realise I was still doing. It wasn’t like having to pour out your heart just walk through some of the events that have happened and how you feel and have felt, share as much or as little as you want to.

It’s just that it’s not like going to the docs to get some pain killers as they’d rather fix the cause than dope you up

Anyway let us know how you get on.

Lily200 · 16 July 2008 09:02

Hi everyone,
typing away on here to distract myself from the fact that I am no longer allowed to eat!!! One of the hardest and cruellest parts of these test for me, ooh apart from the needles.I think I get both today, fab. Waited till the last possible moment, on Nicky’s advice and stuffed myself silly. I gag very easily so not feeling confident about swallowing the barium, may have to pretend I am on my worst week and hope they feel sorry for me!
I have not tried the manuka honey but may have to get some before start the double doses in August.
Lisa, I think I still have the sore mouth a bit too. It really ate into my good time, like yours, and I was cheesed off that I have not been able to do as much as I wanted.Have you thought about staying with your parents for a couple of days at the start of the first Taxotere, in case you are unlucky with the bone pain, etc. I have read some threads about it and know some people suffer but others are not and thought it was better. I will have everything crossed that you are one of the lucky ones, having younger bones and joints than a lot of the others, as the average age is over 50 for BC and people tend to pick up bone trouble in their general ageing process too. How is the room looking by the way? My decorator cancelled so I am still looking at peeld walls and threadbare carpet from the previous owner. If I ever move again, the hall/stairs/landing will be the first decorated before we give up and slide into apathy. Let us know how you get on with the genetics, I guess they will be wanting blood in case you have the BRCA mutated gene. I am going to ask for that too, since finding out that I have not one but two distant lines from Jewish descent, before they changed religion and fled to the UK. I had no idea at all but have read enough to know that could spell trouble for my 3 girls, apart from me. I don’t blame you at all for wanting to forget this, I think you are amazing to keep stomping through the crap that life has thrown your way at such a young age. I know it would be crap to have more surgery, so lets hope it doesn’t come to that. Wish I could send you some seriously yummm food to cheer you up. Chin up keep believing, I have read some seriously good stuff about Tax and how effective it is. That is the main thing to hang onto.Keep us posted how you get on please.
Nicky lots and lots of power to your neuts for this week. Lisa and I can’t have you on the same week as us, you are always the one that cheers us up! We cannot be without your soothing words!!! Lorraine are you on the up, I hope so. Angie half way congratulations.
We have all come such a long way so far and think how many needles we have blunted between us!!!
Hugs all round
Lily x x

system · 16 July 2008 09:20

What amazing ladies you all are after all the crap you have been through. What is the story behind the manuka honey? is it to help support the immune system?
I am leaving in about an hour to go off for my first FEC chemo session. Feeling apprehensive have been drinking gallons of water but feel if you can all do it and get on with it so can I.

thinking of you all

Bevy x

system · 16 July 2008 09:36

Good morning everyone

Have been away for the past few days feeling sorry for myself…looked in the mirror and gave myself a good talking to and now back on track. Is it me, that one day i feel on top of the world and then the next feel like the world is on top of me???

Going for my fourth cycle tomorrow which means i am half way…Yepee!!! It is my last infusion and then on to the Xeloda tablets.

Reading through the threads and trying to catch up with everyone. Congratulations to those who are also half way through. Big (((((((HUGS)))))) to those who feel like they need one.

My thoughts are with you all xxxxxxxx

Kirsty

system · 16 July 2008 10:51

Heya again.

Just picking myself up from the woa is me heap on the floor. Tis the 10th anniversarry of starting my business today. Have come so far and me and OH really did do it all for ourselves with a little help from family and friends. I know we both have so much to be proud of and yet I’m feeling mopy (dex) and therefor so is he (partner on Dex

So Lisa and Lily, you both may have the brca gene too. Mum reckons my dad’s mums’ mum may have been an ashanta jew so will need to talk to them about that next week. Not going ot be a great week for me either, OH’s birthday is on my nadir day, to make up for it we’re going to see Wall-e at the cinema instead, I’ll be the one in the full blown gas mask

Anyway Lily hope the scan goes well and you don’t spend the next few days (or weeks) pondering results… it is a scan right… hate these few days, no long term memory.

Lisa hope they’re being gentle with you. Mum said that Ishould seriously consider ovary removal anyway as she had a full hysterectomy around my age and thye left 1/2 an ovary as was the way back then and has been going through the menopause slowly since, Im not sure that would be my preference now. I’m a rip the plaster off fast kinda girl After all BC or not we all get the menopause (apart from the men who have BC, hopefully they don’t!)

Kirsty… Half way woohoo. No more infusions… double yoohoo (you make it sound like herbal tea… I wish)

I raided both Booths and M&S yesterday to cheer myself up. Am now a very hapy girl with much in fridge to eat… superb. Some of them I will not be declaring to cheme nurse… Gravlax… me… Noooo not me.

Bevy.

Welcome to the club, soon you will be FEC’d as we say, hoping it’s not too bad for you. Seriously just listen to your body and drink lots and lots of water. and no beating yourself up over moods, weight gain or loss, and no feeling bad if you need to phone the chemo nurse to check something out .If the anti sickness pills don’t suit you, you phone them sharpish. The thinking should be like this… hmmm not sure these are working… pick up phone… clear

But really hope you too are lucky. And yes the manuka is supposed to help with your white blood cell count and it’s not too foul tasting either, some people find it a bit sickly though. It’s not cheap and if you do decide to try the trick ideally is to have it first thing in the morning. I just suck on a teaspoon, then my tub of pineapple (fibre good for digestion, and pineapple cleans the mouth). It’s also pretty good on toast though.

Am going to post my chicken soup recipe in chit chat and fun in a mo. Search for chicken soup and youll get 3 recipes for the price of 1 which is free, this is a family classic and I’m now conviced that it really does up the neuts…

I hate getting into debates with some of the ladies on here (no one in this thread) so am not sharing as much as I used to… maybe I will publish that book when finished so they’ll have to find me to argue but in case you’re interested google for:

Chicken Soup Inhibits Neutrophil Chemotaxis In Vitro

Fascinating right… Neut food indeed.

Had to share that one as I didn’t do it last time and my neuts were down, stupid me

Anyway lots and lots of love to all.

You coming up to the good week Nicky?

nicky08 · 16 July 2008 14:01

Hi all

I’m also thinking of genetic testing once I’m thru chemo. My Mum had BC but post menopausal so not a direct link to faulty genes but, as my closest female relative, there could be one. I’m not concerned for me but for my daughters aged 19 and 17. I’d like them to know and get involved with preventative measures/trials if need be.

Angie, can completely understand why you wouldn’t want to investigate your father’s side at all - what a dreadful time you must have had when you were younger. Also I know what you mean about some of the debates that go on - not what you want to get involved in, especially when you do have knowledge on your subject. Will look out the chicken soup recipes and compare what I usually do. On my post chemo days I do like a vegetable soup - homemade, only trouble is so does my youngest daughter so I have to hide it from her! By the way I’m coming up to the bad week, chem tomorrow (as long as neuts OK) or an extra ‘good’ weekend if I don’t have it.

Kirsty - Good luck with getting to half way it’s a big hurdle and one that’s good to get to, hope recovery is good and quick.

Lily - hope scan was OK - I know it’s not nice at all to drink the disgusting stuff they give you or to stop eating and drinking for 4 hrs before. I pigged out on doritos and a picnic bar after and thought sod the sandwiches and healthier options I could have had. Do you get the results sooner than your next chemo or on the same day? I’m expecting my scan results tomorrow and hoping they’re good, like the ultrasound but still worried - or will be by tomorrow morning.

Bevy - hope all went well and it wasn’t too scary for you. With one down you’ll know what to expect next time but ask us old timers any questions that come up.

I went to get my bloods done this morning and they couldn’t get a vein in my arm - same as when I had my CT scan, so had to use the back of my hand. This is not good news but I really hope I don’t have to have any more interference with ‘lines’ being put it, I hope they can just find 3 more good veins to use before the ‘E’ part of FEC does them in. Having said that when they have used my hand it’s been bruise and pain free so here’s hoping. I go to the hospital to have them taken as it’s only 10 mins up the road and I know the results will be there for tomorrow. We have to take a number ticket (like in a kids shoe shop) and wait our turn. The funny thing is, whilst you sit there looking around, there’s a set of double doors with a sign saying ‘coagulation sisters’ which gets me every time - it sounds like an alternative rock band!

Take care lovely ladies, hope Lorraine is over the bad bits now.

Nicky xx

system · 16 July 2008 14:22

They usually use the back of my hand for the fec twice on the right and one the side of my left this time… didn’t hurt this time. was happy with that.

Bloods usually taken in elbow fold for me but last time used hand and that hurt more strangely. so for me going in hand is good and coming out of arm…

Oh god I am becoming an acutal borg (star trek bionic women for those who aren’t sci fi fans. I hear not everyone is… apparently!)

If you find out who the coagulation sisters are please do tell.

system · 16 July 2008 18:23

hi everyone

hope everyone as found something a little pleasant in today, its the small things that mean so much at the moment. just waking up and not feeling ill is one of the greatest feelings. ( and of course wondering whats for brekky, because your stomach just cant wait to be filled!
When i think of all the nonesense that used to be my first thoughts. it certainly puts things into prospective
. ive been a bit rough again (maybe my own fault) had a cream cake in tea shop, and the cream was off! only ate one mouthful, but it may have been that.but i certainly had trouble in the never never regions, i also took something to move things along ( youd have thought id put dynamite up there!
well tuesday morning i woke up with such spasms and felt really faint, then avalanche both ends. so that was me stuck in again! and the sun was shining, for once. anyway little better today, so dragged myself out of bed, and went out with hubby.

nicky 08
nicky hope next treatment, goes ahead i will be thinking of you.
and if you have trouble in those never never regions, be careful what you take!
like you i hope to get out in the sun soon, we need it, hopefully off to the seaside this weekend. yipeeeeeeeeeeeeeee!

lily 2000

hi lily hope everythings ok. i like you, am going to be the size of a house when this as finished. you just cant seem to get your head around healthy eating at this time. and like you say it feels like you deserve little treats.

love and best wishes to everyone else. keep smiling.

lorraine

Lily200 · 16 July 2008 23:20

Hi everyone,
I just lost my long post so trying hard to remember it again now! The ct scan went ok today but not sure when I get the results, maybe at my next dose on Tues. I told the nurse on arrival that I was already on chemo and did not think I would manage to drink the thick stuff without leaving a mess on the carpet. Much to my friend’s surprise (as she had previously struggled through the thick stuff) I was offered a version with no taste that was exactly like drinking a jug of tap water!! What a relief and even better they put the needle in my inner elbow, which is always a good spot for me and got it first go. Another one ticked off the list.
Bevy hope your first one went ok and let us know how it goes. Lots of suggestions on her for every side effect, if you need them. Zoe sorry to hear you have not been so cheerful but can hear you moving into a more positive faze as you hit your halfway point. Tablets at home,that should be a great help. Are you on TACT2 arm 3 or 4? I am on arm one and get 8 doses in the second half, trying not to ponder on it or I will jump ship! Angie if you are asking, they are the Ashkenazi jews and there actually 700 - 1000 mutations on the BRCA 1 and 2 genes, but the Ashkenazi’s have been studied most so they have just 3 mutations to look for making a diagnosis much easier. It comes from intermarriage in the past and also affect descendents from Iceland and Norway. I am not an obvious case as I am older and mine are hormone receptive but even if anyone is in a different category, the % chances of having it are very small. I have a lot of facts in a book,but would not want to alarm anyone else unnecessarily. I do feel sorry for those of you that have to worry about treatment on your ovaries after all this, just another thing to decide and go through. No-one knows or seems to care if I am pre or post menopausal, I think that might get sorted out after rads. As I am close to that age I think the chemo will kick me over, but no-one in my family gets flushes and other symptoms so it is hard to tell even for me.
Not sure what you sre referring to but I guess that someone has posted something that was not very sensitive. It does make me sad when it happens as I have drawn so much from this site and all of you.
Nicky lots of luck and hope you get the dose and it goes very smoothly for you. Good luck with your results. Let us know how you get on please. Lorraine I know exactly what you went through, poor you. You just don’t need it do you. It made me worry about eating for abpout 10 minutes after it stopped and then I was back on my comfort eating but I am walking every day to try to make up for it.
Hugs to everyone, especially those in the bunker tomorrow
Lily x x

nicky08 · 17 July 2008 06:34

Quick tip for Lily - I’ve had the same problem with the site losing my posts if they’re long. I think it’s to do with you PC timing out when there’s been no communication with the site for a while ie whilst you’re typing. Best bet is to ‘copy’ your post before you click the ‘Add comments’ button, this way you should be able to ‘paste’ it back if it loses it. I do this sometimes when I want to check back on the previous page if we’ve just gone onto a new one.

Glad drink wasn’t too yukky, hope scan results are good, enjoy your good week and don’t think about the results.

Sorry to hear you had problems Lorraine - I’ll keep away from cream cakes for a while

Angie - elbow has given up - wants to hang onto every drop so looks like the hand for everything from now on - at least if I know that they can stop trying in my arm - I’m fed up being a pin cushion.

Speak to you all when I’m through the other side - hoping it goes ahead.

Nicky xx

system · 17 July 2008 09:52

Hi Girlies,

jsut reporting back,
Bit of a mammoth event we were there for 7 hours! The normal chemo nurse was off sick (glad she wasn’t there!) and so everything took much longer.

I wore the cold cap what a strange experience freezing ice packs arranged in a riding style hat not very complimentary. It was uncomfortable but not painful. Having the canula put in my hand was horrible and she had trouble getting any blood (I wanted to hang on to it all) but eventually when it all got started the nurse sits there and injects three huge syringes (one at a time!) into the canula she has to do it physically and not on a drip as she needs to make sure there is no leakage as it can permanently damage your skin around the canula. The other thing I didn’t know was they have to use a different vien each time as it destroys the vien (I wasn’t too happy about that not only will I have no lymph vessels in my right arm the bloody left one will be depleted in viens! just when I think it is bad as it can get another little bombshell)

Anyway they gave me the anti sickness drugs and I have some to take a home too. Last night was horrible I just wondered what on earth was going on in my body as it felt very alien and I has glad when I got up this morning to feel a bit better just poleaxed. I kept having a terrible headache and eye ache but that could have been from wearing the hat.

Apparently it is the next 3 to 4 days I could feel the sickness bit so I am making sureI I am drinking loads of water to flush it through. Also the 10 to 14 day is when my immune system is at its lowest point so I have to be careful mixing with too many people.

Vetangie

Thanks for the info on the manuka and the chicken soup will check that out anything I can do to help myself.

Hope everyone is o.k. today. I feel I too have a tough old time ahead and dearly wish it were all over but it certainly helps to know I am not alone.

love Bevy

system · 17 July 2008 10:20

hi everyone

lily 2000
at least the scans behind you, try to put it out your head till you get results, which i hope are clear. i thought i was doing well after this cycle(4th) but i cant seem to get going.
at least other problems down below cleared up now. just no energy so im resting because we want to go away for the weekend.
it seems do able when you can have days with some energy, but its hard to remain positive when you are so fatigued.and with all the will in the world you cannot change how you feel somedays. anyway sorry for off loading you enjoy the moment and have a cream tea or two.

nicky 08

hope everything ok, and you will be able to have next dose, im having a chill out day, feeling low. but i will just go with it, and hopefully improve for weekend. hubby wants to go away, and i would love to as well. but he wants to travel quite a distant, not sure if im up to it, ( he will probably sulk if not) hes not a very good nurse.
but who knows tommorow i may feel on top of the world. its a bit like that!

anyway those who can, have a great day, and those who are struggling be kind to yourselves

lots of love lorraine x

system · 17 July 2008 11:21

Hope it’s going smoothly today Nicky. You’re getting there.

Lily. it is the Ashkenazi genes my Mum’s worried I have got, I’m not so sure but having a family that probably fled from Germany on my dads side and no way of finding out properly what happened has not helped there so think I will ask for the screening if it’s available because of ovarian risk, don’t risk numbers that high myself.

Bevy: Well done. First one down, just sit back and enjoy the ride… ok that is asking too much but do check things with the nurses, especially the first time around and rest etc when you need to. This one should tell you what to expect the next time around. I also had the nurse inject the stuff manually into me but with saline constantly going to. I think this is normal. I don’t think it’s true that your veins are gone for good it’s just that 3 weeks isn’t quite enough time for them to recover between cycles. Because I had a bilateral mastectomy there’s no good arm so they can alternate and at my insistence they have. My right arm is now starting to recover a lot more and I suspect by the next dose, ie 6 weeks after it was last used it will be a lot lot better so don’t worry to much about that. As for bodies not wanting to give up blood, our bodies are that daft, they know what’s happening

Lorraine, hope you’re picking up now.

This may or may not make you laugh but she who has to date not been nauseas or sick made up for it big style last night… I’ll refrain from the graphic details but OH and I went to see Hancock at the movies to celebrate the our 10th year in business. I cooked a lovely safe meal. We had a bottle of cava between us… hould have stopped there. In hindsight really should have… but didn’t did I.

Had a glass of red wine and followed it with… a cream cake… ban them I say, just ban them.

Went to bed at midnight, not at all drunk, feeling fine and dandy. Forgot to take the ondanestron didn’t I, and left my chemo bag in the back seat of the car, which was parked up the road because someone parked outside my house so we couldn’t.

So roll on 4am, wake up startled, things rumbling, dash to loo. diarrhea and vomit for 5 mins, shakily head back to bed realising haven’t taken pills and have to send poor OH out to car in dressing gown to get the bag.

Took the ondamet and was straight back to loo to repeat 10 mins later. didn’t keep it down. Still took a domperidone and a nuxvom and settled back into bed gently. that was the last of the nausea but the other end continued on the hour every hour until about 8 am.

Copious amounts of water later, a few hours sleep and I phoned the chemo nurse explaining that there’s no temperature but bubbly and red wine was involved, at least she did find it funny, as do I now… what a twit but hey you don’t survive 10 years of running your own company and sit at home moping about not being able to celebrate do you.

Feeling OK now, and I’d do it all again. except the cream cake and the red wine.

Movie was fun and Wall-E is planned for friday before the low neuts days begin.

Hope I’ve entertained you and not made any of you green. What a twit (me).

Lots of love

Angie

system · 17 July 2008 12:21

Well that is good news that the viens are n’t completely buggered the way the nurse spoke I thought they would be and I shall certainly keep off the vino for a while if that is what happens! ugh not good you poor love.

I have been grating some ginger root and making a hot drink from it and I think that helps (not as good as a glass of bubbly but needs must) having a peaceful day today trying to relax think I might watch a film this afternoon (which is so not me normally on the go all the time still I am not really me at the moment am I)

love to all Bevy

nicky08 · 17 July 2008 12:32

Well, guess what, low neuts again Not very surprised at this as they were starting off at a lower point after last chemo. I could have gone for a blood test and hoped they were high enough for chemo (they were only .3 short) but really couldn’t be @rsed! I would have had a wait for test, results and chemo so would have probably got back at midnight. I’m really not that bothered but we (onc and us) have decided I will have the bone marrow injections (whatever they’re called - can’t remember) so it doesn’t happen for the last 2 rather than reduce the chemo dosage. It means I get an extra ‘good’ weekend which OH and I will make the most of, meal out tomorrow and possibly Hancock but will try not to do what Angie did and chuck it all up, or out Also it means I’ll feel well enough to see my youngest daughter off for her 2 wks in France as part of the exchange trip and help with her packing etc rather than feeling cr@p. Will also make sure have Manuka and chicken soup next time to boost neuts further.

Good news from CT scan though - area on hip is healing, which is v good at this stage as don’t always get good results at half way point.

Will now be behind you Lily - watch out!

Lorraine - hope the feeling better bit happens overnight and you enjoy a weekend away. Don’t push yourself if you’re not feeling good though, sorry if this causes hubby to sulk but you should listen to what your body tells you. Maybe you could go next weekend? I’m about to cancel our weekend away that was meant to be next weekend but am re-booking it for the one after that when I’m sure I’ll feel better - I’m not going to miss out just because chemo was delayed.

Bevy - take it easy for next few days, hopefully you’ll bounce back up early to mid next week. Note any side effects you have as a reminder for next time as the patterns seem to be the same.

Take care all

Nicky xx

system · 17 July 2008 22:09

Hey Nicky… Sorry to hear about the neuts, hope you have a stonkingly good weekend instead.
It’s important not to wish our lives away during all this after all isn’t it?

Angie