chemo kicks off 20 May - any good buddies?

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801

Hi all

Lily ive been fine apart from bad cough and runny nose think that losing the hair in your nose makes that even worse feel like a tap thats dripping all the time. talking about hair mine is coming back with a vengence its about 1/2in now which I find wierd you see when we first lose our hair and are bald everyone says oh that women must have cancer now because it looks like a crew cut they think she must be an old dyke lol. Another funny thing happened too might make you laugh. I was out with my son the other day who decided he needed a hair cut so i went to the barbers with him the girls were really nice and were asking allsorts of questions about my cancer. On leaving the shop I was getting a few funny looks then it dawned on me so went back into the shop to tell the girls they might not get as many customers because everyone would be thinking I got my hair cut in there and it looked bad LMAO.Thinking of dying my hair see if it looks better so will try the organic dye as iam told that this is safer.

Angie- Pity you can make the wedding because of the stinking cold but believe me you dont want it makes you feel even more achy and tired besides spending more time with your friend will be beneficial to both of you. I dont have face book but have bebo but will try and find you on face book.

Lily- Hope you have a great weekend how are the effects going iam on number 3 on wed because of delay so fingers crossed effects werent as bad giving it in a drip over the hour had no sickness this time just slept for 36 hours lol

Joanne

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Hi: Just did long post and accidentally wiped it out. Bum. Will try again:

Lily: Yes I am confused about the DCIS, it don’t make sense but that is what it says on my path report. Look out onc at next meeting, he may regret giving me that report! I am making a batch of Angie’s chicken soup with mushrooms and eating the Brazils to see if that help with the bloods on Monday. I think last time I had a sniffy cold the week before but with the permanently dripping nose it is difficult to tell. Also, I don’t think I am taking as much care now as I was at the beginning as I have been so well all through - if that makes sense. But I will have to try harder but I tend to ignore minor things and just get on.

Hey: Have hairs on my legs - not going to shave them off just yet, also head is sore so maybe that is the hair fighting for llife!

Angie: Shame about the wedding but as you have now had last dose of poison you don’t want to catch anything at this point.

Joanne: Good luck for Wednesday.

Bit of a larf:: The Dogs’ Trust have had a stand in the Priors Shopping Mall in Leamington for the last couple of weeks and when I walked past on Wed got chatting to the guy doing the selling as I already sponsor one of their dogs. As I walked away he shouted “Love the hair by the way”. Yesterday went back as I had decided to sponsor another dog - airedale same as mine - and when he made comment about the red Raquel Welch hair said it was a wig and told him about the BC. He was gobsmacked - said I looked so well, didn’t look 61, had great attitude, couldn’t believe the hair wasn’t mine, that I was an inspiration, etc. etc. The gave me big hug in middle of shopping Leamington at lunchtime!! Having done the sponsorship thing, he now wants to take me for drink when next around. Have I scored here???

On a serious note: Anyone heard of Raloxifene? On Breastcancer.org says it is as effective as Tamoxifen with 30/40% less side effects for post-menopausal women, like me.

Anyway, better do some work, have a good weekend everybody and let’s hope we all get through next week with no more problems.

LOL

Julia

803

Have some interesting news for you Lily…

I didn’t take my ondanestron last night, or this morning either so that’s me done drugs wise.

I actually forgot last night for 2 hours and have been suspecting it’s the cause of the heartburn, so after 3 hours and still not feeling bad I decided to help with it, don’t need it and guess what… no heartburn, not one bit. Took my steroids this morning but slept much better without the tummy going nuts… who would have thought it would be that anti nausea drugs that made me feel blurgh. Irony.

Julia: Re DCIS. Have you read this:

breastcancercare.org.uk/docs/pathology___feb_08_0.pdf

It’s worth a read… it says: "So if you’re told you have ductal carcinoma in situ (DCIS)it means you have a cancer that has not yet spread within the breast tissue. "

So in this case it sounds like yours hadn’t spread within the breast but a bit had managed to make it to the lymphs hence the 67%. I still maintain that it’s just a number based on other peoples outcomes. It doesn’t take into account what other treatments are coming, other aspects of your health, your attitude (ok that’s a contentious one but still it’s not considered), and it’s based on people who were diagnosed 10 years ago. I believe the UK got a bad wrap for cancer services a few years ago from the WHO and have kicked it up a notch since then so I would be stunned if the stats in 10 years don’t show improvement. So you really do have to remember they’re about what’s happened to people who were diagnosed 10 years ago not who are being diagnosed today.

I actually know one of the programmers who writes the code that imports the data from the registrars and I’ve played with the adjuvant online database and read almost all of it’s notes to see how sophisticated or not it is. It’s pretty good but it really is just a guide to help choose treatment, really nothing more. How the numbers are explained to us seems a bit simplistic too but then most people just zonk out when given averages and how many patients are going to ask if its mean or median averages etc. Long time since GCSE maths for most of us :wink:

Does that help?

Hope the soup helps or at least makes you feel better and yeah I think you have pulled actually :wink:

Right off to do some lunch. starving (hello Dex, welcome back)

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Angie: You are great! I have the book and it does explain most things but that DCIS and lymph thing is confusing. Also appreciate what you say about the stats, but the onc is still going to have to earn his money at the next meeting!! It was even longer ago for me with the maths as it was RSA/GCE when I did it!

Have got the chickens and mushrooms and have started on the brazil nuts.

Thanks for your help

Have a great weekend - it’s going to be sunny - whoopeeee

Julia
XXX

805

Angie you every read side effects of the pills one is may cause nausia and heartburn lol

Joanne

806

hi everyone.

glad you all coping reasonably well. the sunny weather helps.

Lily 2000

how are you managing all these men about the house?
i could do with a big strong man at the moment. ive been invaded again by the hairy monster.,
sitting here on the computer minding my own business(well actually catching up on everyone elses.) and i spied him. out of the corner of my eye, and hes big, and so fast.
no use shouting my husband, hes worse than me. i normally catch them with a glass and put them outside . but hes gone behind my bedroom cupboard. that means a sleepless night for me. i will stuff the hole up in the cupboard, but he may have escaped already, i think i will have to put something over my mouth in bed never tried eating spiders before! i remember being stung by a wasp on the lips while i was asleep, i had big rubber lips the next day.
sorry to hear your treatment is so yak, i cant remember what your on at the moment, and how many you got to have.
anyway you asked about the elphabet. when i cant remember a persons name (which is very often lately) i start at a, example andy alex etc and if none of them seem right i go on to b, i normally remember eventually, if the person hasnt filled me in before.
i know im mad, but im past caring, tried being sensible and it was boring.
have a relaxing weekend. take care

Nicky 08

hi nicky, hope everything goes ok with scan. if your like me, its so nerve racking seeing the oncologist, because you dont know what to expect. does it mean you are at the end of treatment now. (forgive me, if ive already asked ) i cant believe how my brain thinks one thing and my mouth comes out with something different, its so annoying (well so hubby tells me). had some lovely days out this week, weather been brill.
im so frustrated at my prothesis, i have a pocket in my bra for it, but somehow it ends up lobsided to the other boob, and im left trying to discreetly manover them.
doesnt help when your remaining boob is enormous. i know i could opt for a reconstruction (dont know if thats right word) but i think i will leave things, cos i dont want to mess with things again, and im a baby where ops are concerned. anyway must go, got to get some beauty sleep for work tommorow, ( and i will need a long time in bed for that) have a good weekend.

your all in my thoughts take care x

807

What a difference a day makes… 24 little hours.

Seriously. Yesterday, achy, twitchy, moany, miserable, fuzzy eyes, armpits, surgery scars painful, perioud pain buiding up, PMT yada yada.

This morning… mother of all periods started (due to start contraceptive pills again in 24 hours… it’s *that* late) but the pain is subsiding. I can see, the sun is out. I even left the snails on the courgette that they’d already started upon, there’s enough to go around.

Still got to ride out neuts week but I feel the end of a road coming. Tommy and I have been planning the wedding and I’m going to do it without the prosthetics I think. I think I’ve found the perfect dress style that will allow me to look balanced, feminine (maybe even sexy but I’ll not push my luck LOL) and not need boobs to carry it. Should be an interesting challenge… can you wear black boots with an ivory/cream dress and furry style coat?

I have no fashion sense. I might need your wisdom ladies, especially those of you who recall the 60s/70s. See it’s worth being older sometimes, they knew how to do style back then. Horrifies me to see batwings and stripes back from the 80’s I’m just keeping my eyes closed :wink:

Anyway hope you’re enjoying the sun and getting some fun and rest everyone and not stressing about scans, bumps, pills etc like we all seem to have to do far too much.

Lots and lots of love and hugs…

the sun has got his hat on … hip hip hip etc

808

hi there everyone

where are you all? first time ive logged on and there not been loads of messages. i hope you are all well. maybe its because your all well that your not online i really hope so. ive done the first full day at work today, not feeling too bad so far.

ive been worrying about delay in treatment, and what do i see on my homepage. something about delays in chemo, and there effect. so im off to check it out.

everyone have a good weekend hope the sun shines on everyone, but remember to cover your bald patches up everyone.

take care x

809

Ho Angie

Lucky you getting married your dress sounds brill but boots nah go for class it does it everytime and Iam sure no one will notice your lopsided boob be looking at how fantaatis you look oh and dont forget some really sexy undies give him something to drool over just whisper it to him just before the vows and watch his face oh I wish I could be there or how about honey guess what iam not wearing anything under this dress he’ll fly through the vows or is that just me being my usual sauxy mare i do it to my bloke all the time at the most inappropreate times like standing in the q a asda send him a naughty pic I took earlier LOL.

Joanne

810

ooh la la

Fortunately because I’m bilat I’m even, just flat :wink: lower half is still curvy though :slight_smile:

I think it’s gotta be the boots actually, having just watched resident evil… .gotta remember… we’re geeks :slight_smile:

What’s this about delays in treatment Lorraine… missed that.

Vows… oh god I’m so bad with words.

811

Hi,
Rather along the lines of Angie I also decided to reduce my medication. I have been stopping one Ondansetron (strong anti sickness) each cycle. So this time just took 4 with no problems, instead of 6. I hate the taste of those rotten little yellow things, always have to roll them in jam or gag before I start. Is it just me? I think they are foul, so sickly! I agree that they may be causing acid, I’ve thought that for a while. Then reading on a USA site I saw that some anti sick tablets also cause blurring of the eyes!! My worst symptom at the moment but it has not improved in fact far worse this cycle.
I get caught up in this horrid whirring movement around me if I do too much. At its worst had to sit with a pillow over my head to stop the world turning and everything going out of focus beyond 2 feet from my head. It settles when I do, so given myself permission to sit about this weekend. Well apart from 10 to dinner on Sunday!
Angie I did not realise that the wedding was such a long journey, so agree you should take care. Hey fab news about planning yours though. I have seen styles that have fabric draped across the front or you can have a little jacket, wrap, etc - don’t see it being a problem. The black boots are banned! Seriously I hope you have great fun planning it all and I will expect it to be very eccentric with immense attention to every little personal detail. Will you be wearing the chinese chemo hat?? Brings a lovely end to the chemo stage.
I am amazed some of you still get periods despite all this chemo. So guess that means more drugs or surgery to push you into menopause and safer territory. I have no idea which side I am. Joanne glad to see you are still feeling lively enough to get up to mischief!! How is it going? I am half way through number 6 and not looking forward to the second half on Tuesday.I have hairy arms again!!
Hi Lorraine, it is usually us wondering where you are! Crikey, going to work as well, you better send me some of what you are on. I have not been to work since March. Did you find the horrible spider, yuk. I am on CMF just now which is milder than epi but a pain in the neck as each dose is a double, so 2 weeks chemo, 2 weeks off, takes so long. Julia how are you after this one, it is accumulating for me? What are you worse side effects? The wig is obviously worth its weight in money! LOL You have definitely still got it! Sorry don’t know about roloxifene, have not really started thinking about that but probably should. I worked out if I keep on track I could actually finish rads on Christmas Eve and start the new year with just tablets. Sounds too good to be true! Are you having rads?

Bevy how are you doing, hope your health is holding up so you can keep getting the doses done. Kirsty how are you, have not heard for a while either? Lisa wondering where you are now in your line of treatments. have you got rid of the last chemo yet? Hope you are able to start getting more normal.
Nicky, hope this finds you out for a nice weekend, the weather is helpful at last. Are you feeling ok yet?
Hope all is well with all of you who had appointments this week and all still going well. Keep us posted
Lily x

812

Hi all

Suitably chastised by Lorraine about not posting! The weather is lovely isn’t it? So much nicer than a hot and humid summer’s day - but never mind we didn’t get any of those this year! Busy week last week trying to get back to some normality. I’ve picked up on my exercises now and aim to do a 30 min walk at least twice a week and more if weather permits. Also I’ve dug out the hand weights so trying to tone up again plus some other leg stuff. All of which I felt last Thursday! I used to do at least 3 sessions of either gym work or classes pre chemo and really couldn’t be bothered whilst on it so I’m pleased to get back to it now. Sorry to all of you still on the dreaded poison path who I know will want to beat me up about all this but I totally understand and write as such and I won’t get offended!
After a longer than usual recovery from chemo - yes the bl**dy Ond tablets do it for me every time, I then went straight onto a course of antibiotics for my hand so really not got over all the windyness and stomach not so good stags yet. Last one taken this morning though so I hope to feel much better later on today.
Had an ultrasound (for breast lump) on Friday afternoon (the 1st of many hospital visits in the next week or so) and it’s still shrinking - hooray! Not as much as before but she said it’s difficult to measure as it’s right on the scar tissue. I took that as a good sign because if it was easily measurable then it must be too big! They can monitor this quite easily from now and see how effective the hormone therapy is at shrinking it even further. They won’t operate to remove it (and my boob) as it’s not the thing that caused my BC to spread, just another site that has shown up as well as my hip, however we can discuss this later if I want to get rid of it. Next week I’ve got blood tests, to check if post menopausal, and CT scan then the following week my follow up appt with onc and 1st pamidronate IV on it’s own rather than with chemo. I hope I can get my brain to realise it won’t make me feel ill and therefore don’t feel nauseous. All this to fit in with a day in Portsmouth at the secondary bc day being held by BCC. I have a sneaky feeling it could be my onc giving the talk in the morning! Oh well, I’ll get some extra quality time with her if it is :wink:
Enough about me - how are you all doing?
Love the wedding detail, Angie - you’d better keep us up to date and going on what you’ve told us about you and Tommy I reckon boots could be done! Hope you’re feeling OK after last FEC - doesn’t that sound good! Sounds like you’re picking up anyway and such a lot to look forward to - lucky you.
Lily - hope you are also feeling OK. I used to only have 4 Ond tabs, every 6 hours and felt I needed them to help with anti sickness but boy do they upset you in other ways! A double edged sword unfortunately. I hope you stay on track with your treatments - horrible though they are - and can say goodbye to hospitals etc on Chr Eve - what a great Christmas present but what an awful year you, and all of us, have had. Don’t overdo it having 10 round for dinner today. I don’t mind cooking for big numbers but draw the line at clearing up after so make sure you don’t do it all and if you’ve overdone it have a lazy day tomorrow - you deserve it. Hope it’s a good day though and you enjoy yourself.
Lorraine - I’ve finished the chemo side of things (as far as I know - I hope I don’t get a nasty surprise when I see my onc!) and now go onto Letrozole which is similar to Tamoxifen but can only be used if you’re post menopausal - hence the blood test next week. If I’m not I’ll need Zoldadex injections (again!) or my ovaries out - what joy - more hospital visits and treatments to endure. Having said that as I’m so hormone receptive I want to get rid of any extra oestrogen in my body asap and I’m sure coming off Zoladex the 1st time round was what triggered the secondaries. I hope your appt goes well - it’s this week isn’t it? Also the chemo still in your body from FEC will be protecting you I’m sure so don’t get too hung up about any delays if you are going on to more chemo. I think any reports mean a delay with chemo at the beginning, which makes sense I suppose. Are you glad to be back at work? I wasn’t looking forward to it this week but was glad I went in and it was all OK and even managed to enjoy myself - not many jobs you can say that about!
Joanne - you shock me! What are you like? And in Asda of all places! At least it must bring a smile to you or your OH’s face when doing the weekly shop. Hope you are OK and recovered from you virus. Although it’s a pain to get treatment delayed it does give you a bit extra time to get over the last one, I hope you weren’t feeling so grot you didn’t make the most of your ‘week off’.
Lisa, Julia, Kirsty, Bev - hope you are out and about and enjoying the good weather and not feeling bad.

To all, enjoy the rest of the weekend, take care

Nicky xx

813

By the way, just re-read my post. ‘stags’ should be ‘stage’ - I think!

814

hi everyone

hope youve all enjoyed the sunny days weve just had, more to come i hope!

Lily 2000
glad to have you back,but you must be feeling pretty rough at times with your treatment. 10 to Sunday dinner, what an achievment. i hope someone else washed up, or are you one of the posh once with a dishwasher? ( i still have to use the poor old hands, and dont even use fairy, so they get all wrinkly) but saying that i dont often do sunday lunch, as were always out and about. do a cooked dinner weeknights instead.
No i didnt get the spider, he went behind the cupboards, i stuffed the hole with tissue, but now ive realised he can get through the gaps at the back, so one day i have visions of opening the drawer and seeing him sitting there! aghhhhhhhhhhhhhhhhhhhhhh! have a good week, hope you dont suffer too much with treatment, just think one day it will be over. yesssssssssssssssss!

Nicky 08

hi,
yes it is good to be back at work, but i only go in occasionally, as i have a few ladies who work voluntary for me, which is kind of them.

i opened a christian bookshop in October, took out a loan (quiet a large one, ) and then found out i had bc in feb. the girls have been covering for me while i get back on my feet, but the lease is up for renewal now, and it is a three year contract. so i have had to make the decision to close, which is sad but i cant forsee what is ahead for the next few years, and you need to be full of energy to run a business properly. So i will miss going in on odd days, when we close. because i was lucky too because i loved my work.

So glad your chemo has come to an end, and glad you are back to getting fit, it gives us all hope. so dont worry about sharing that, we need to know theres a light at the end of the tunnel. i too dont know where i am concerning menapause either, so let me know how you get on with blood tests. i am having trouble with lymphodema at moment so i need to sort that out next. oh the joys of breast cancer.! but still we are at least up and about, not like a friend i visited in hospital last week, she is too weak to operate on at the moment. so we have a lot to be thankful for.
have a good week, take care.x

815

Hi,
here we go again, for another spin on the roundabout, feeling bouncier by the minute. Just in time to be flattened by bloods tomorrow (no don’t even worry about them any more) and poison on Tuesday. Keeping my sights firmly on the large cooked breakfast I have in the canteen each week now before chemo and I don’t care if I put on weight, errh more weight would be more accurate! Days are for enjoying. I am a little twitchy at the moment, I am sure it is because so many people are moving on, back to work, finishing parts and I am just still doing it. Would be pulling my hair out without Joanne and Julia on the E/CMF ride with me plus all the rest of you angels making me laugh and cry with you as we travel along. Thank you for keeping your posts going.
Lorraine, I am suitably chastised too!! Have you been a teacher ever, you sound like me!! I was so very very sorry that you feel you must close your shop as I can understand how much of yourself you must have put into a shop like that and all the people who come in them. Have you thought what you will do instead? Yes I am POSH LOL, I had my first dishwasher in 1988 when my husband was working abroad for one out of every 3 weeks and got sent away leaving me with a 7 day old baby, and a 2 and a 4 year old and a dog to look after with no help from anyone. I said the washing up would all be waiting for him when he got back !! You just have to give men choices and make sure the one you want them to do, sounds like the best option!! Works for me anyway. Dinner was fine did easy stuff and I am feeling really good today but sat around watching tennis to be sure I am ok for tomorrow as have to drive for bloods and meeting a lovely local lady I also talk to online. Oh spiders, oh no! Suck it up with the hoover. Where are you up to now, I think you said you were having more chemo with us other mixy bunnies aren’t you? Do you have a date yet? Hope the lymph improves,ask for exercises from the BCN.
Nicky, well I would come and beat you up about going to the gym but you are so safe, just couldn’t catch you!! That must be a post chemo stage that comes over people because I don’t recognise the need for exercise at all! Hope that grotty tum goes soon, I hate it. I was up in the night and this morning as CMF gives me really gripey pains.Is your hand ok now? I am SO thrilled that the lump is still shrinking, brilliant news and it better keep shrinking!! I don’t really understand why they don’t take out any lumps they can, I thought they would be stamping on every individual part? I guess I have kept my eyes rather closed about secondaries and probably don’t understand how much more you have all had to take on board, in order to have some sort of normality to your days. Make sure you get the water when you go for the CT scan, it really is just like water. Can’t believe you fell for the drink this nasty stuff, last time !!! I will laugh if you get it again. Anyway hope all the visits go as planned and they find veins easily and news is good. Keep us posted.

I had to phone the emergency pager tonight as it seems I may have been in contact with shingles, although it is not confirmed yet so all may be well. I thought it was a week since I saw the person and then tonight he just dropped into the conversation that he had first noticed them last Tuesday and he was here all the previous Saturday in our house. Woops. Anyway the news is to just sit and wait, nothing to be done unless I get something in which case i have rather a lot of tablets heading my way! Yipppee! I had not really thought about what a dodgy situation we are while on chemo and apparently for 6 months after for infections so be careful. CMF is somewhat worse as my immune system is down from the last dose and going to take another nose dive after Tuesday when i go again. Will be interesting to see if my blood counts are registering anything. Better start boiling chickens for me Angie!
Hugs to everyone, hope this wek goes ok for you
Lily x

816

Hi all

Lily how far on are you on the CMF.

Just to let you ladies know my hair is now about half inch and didnt know what colour it wanted to be so i took the plunge and died it blond My colour before chemo and hey presto it worked thought it might fall out but I guess iy didnt matter as it looked weird. Anyway feel a bit more normal now even used my sons grl to spike it up.

Got next round on wed but dont know what will happen although colds cleared up has left me with a chesty cough and my hickman line has become infected so just have to waut and see.

Keep you posted x

Joanne

817

Hi Joanne,
what are you like! Knew you would be first to break ranks and dye your hair, did you use an organic one as they are supposed to be fine? Mine is almost black with bouncy grey ones, about an inch long but very fine like baby hair so still keeping my hairband on for now. Mine is just not dense enough to look like a haircut. I get the second part of number 6 on Tuesday, making me 75% of the way through. Can;'t summon up a cheer. Is CMF making you more moody, it is me? Especially when I think of the second dose each time grrrr . The 28 day cycle makes it go so slowly doesn’t it? Hey an infected line sounds bad, what do you have to do about it? And a chesty cough, time to rest up and take it easy, no more Asda fun!! How are you feeling with it? You heard about my shingles business! Seems he actually had them Tues morning and spent the day here all Sat before. I have to wait and see, but don’t know that he def has it yet so might be fine anyway.
You take care or you will get another week behind
Lily x

818

Hi

Iam only on dose 3 of CMF and I cant hack it my moods are terrible like total depression. My OH is in wales this weekend he works in birmingham and comes home weekends but he went to see his mother this weekend so wont see him for two weeks and went into a right strop because he didnt answer his phone today when i called poor babe has bad cold but got no sympathy from me feel soooooo bad. I only met him a month before I was dx and hes been a rock takes all the cr0p i throw at him and still stays if it were me i would have run a mile by now. Just wish I could be boucy like you lily but no matter how hard i try cant seem to shake it off forcing myself to get out of bed but my pup gives me reason to get up wish I could do him justice try to play with him as much as I can but he now knows to sit and give a paw not bad for only beong 7 weeks. Its like having a baby up during the night to let him out lol

Joanne

819

Hi,
we must be counting differently, by your system I am on CMF number 4 next week. I call that the second half of dose 6, as in 8 in total on the whole regime. I don’t think I am bouncy, probably cover some of the more miserable bits, so don’t feel alone. You have been going through these up and down swings all the way through, just tell yourself it is the drugs talking and try to believe it. As for the OH, I reckon if he sees you through all of this, he will be around for a long time!
Why don’t you phone and say sorry for being a beast? Or send him one of your famous texts/ photos! I am sure he will understand. Do you think you are doing too much with 2 infections on the go, they will be pulling you down. Sit tight and take care of yourself as much as you can, so you are better when he gets back.
Give the pup a cuddle from me. Hugs to you.
lily x

820

god im um dolderums missed so many posts wil catch up tommorrow, when less wine on board!! Hope all doing as well as can be. missing in action busy week, had read through report an stats which upset me, had tattoos, not as bad as thought, had meeting re ovaries which was sad and had bro in laws wedding which was very emotional, but thinkging of you all and will try and catch to tomorrow x