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Tact2 trial

Flo62
Member

Re: Tact2 trial

Happy New year everyone.....took a while to find our original thread, so thought would 'bump' it up so if you're out there we can start our chats up again.

Shirl,how about that cuppa in John Lewis cheadle ? Mal.. you could come too as you are local to me...how about it. PM me if you think good idea.

Hope to 'chat' to you all soon.
Fiona.

amdacc
Member

Re: Tact2 trial

Hi Mal

Yep, Im almost finished my second Xeloda, will start my last one all being well on the 31st of dec, petty I didnt have to kate tablets for two weeks or I could have looked at it being finished this year.... never mind, hopefully by this time next year we will be looking back and this will all just be old news. Hope your keeping well

Angela

ForumMember
Member

Re: Tact2 trial

Hi All
sorry i have been missing for a week but i have been in hospital, I got an infection from one of the injections in my arm, it was very red and swollen so they tried to get antibiotics in through a vein but no good, so they had lots of trys with my legs and feet but no go, so thy kept me in till yesterday from last saturday, my arm is still sore the vein is very hard and swollen so they wouldnt give me my chemo yesterday, i wil go back for a check up on Tues and if all ok i will get my chemo on Fri.

Fiona i will give you a ring about meeting up, this week if you can do it,

Mal hope you had a good day shopping at the trafford centre,
Shirl

maltomlin
Member

Re: Tact2 trial

Hi girls

Are you all OK?

Shirl, are you finished with epi now? Any more shopping trips? Your cardi sounded a great bargain. I've never been to TY J Hughes - will have to give it a try. Off to the Trafford Centre with my daughter on Monday. Don't really need any thing just going for a look round and lunch.

Angela - you'll be half way thro' your xeloda now and still keeping well I hope. I finish mine next Saturday. It'll be a stange feeling not to be taking anything for a few weeks. I live in Manchester.

I went for my rads planning session on Wed. It was nothing. Just had to lie still for ages. I've now got 2 red tattoos. Start the rads 2nd Jan.

Hope your hands are sorted now Fiona.

Take care ladies

Mal x

ForumMember
Member

Re: Tact2 trial

Hi Fiona
my cousin lives opposite the social club on the right that is just passed the church on the left going up towards the Griffin, not sure what the church is called, her house is large and very old, ( bit like how i feel ha ha) . You might even know my cousin she was a practice nurse at a local surgury for years but has now retired. Meeting up for coffee would be really good, just pick a morning and i can get there for 10 ish, but next week i cant do Tues of Fri, dam hospital appointments intervering with my life,

Mal, how odd it will seem to have no appointments on your calender, the end in sight, yet in the beginning it seems so far away, good for you, you show em girl,

No offers on in J Lewis, more the pity, i really love that shop, but i had to laugh yesterday when i saw a cardi for £59, i bought the exact same one for £5 in T J Hughes in Chester, maybe i will keep it for sundays and high days, and dont get me started on the price of some of the handbags they sell, where do they think we get all this money from

Oh well off to Ikea tomorrow, have a good weekend all,
Shirl

amdacc
Member

Re: Tact2 trial

HI Mal

Im in Scotland Just south of Glasgow. I am doing well on the tablets thankfully, two and a half sessiond to go before the rads. Where are you from? Finding this site a god send as I havent met anyone at the hospital. Its great hearing how everyone is getting on.

Angela

maltomlin
Member

Re: Tact2 trial

HI Girls

Just replied to you Fiona on the other thread so won't repeat myself except:-

I've collected my last xeloda, femara too (next five years) and don't have to see onc again 'til next June!! What a fantastic feeling. Been butchered and poisoned, just the fried bit to go!

Sorry Fiona I hadn't realised you were having such a problem with your hands. I've been lucky. Just a bit tingly and red and have just been using E45 but Udderly Smooth is supposed to be brilliant. There's loads of websites selling it especially vets supplies! Hope you get it sorted soon. Definitely no washing up. See how long it takes before you run out of plates!

Shirl hope you had a great day shopping. Did John Lewis have any discounts? Gosh one more epi? That's flown. Just hope you're as trouble free as I've been. The worst for me was the nausea but it has been controllable, and the runs first thing every morning.

Hi Angela - you seem to be coping with the tablets OK too. What part of the country are you from?

Turn the heating up girls!

Mal x

Flo62
Member

Re: Tact2 trial

Shirl - My local John Lewis - 5 mins drive! Want to meet up and have a coffee ?? I live in Bramhall/Cheadle Hulme border. Which Church in HG - there's quite a few!

Going to have wait a bit longer for the cream. Northern Stockists (Liverpool) having to wait to get hand cream in - they have the foot stuff but don't need it yet, thank God due to prayers, as not had any sore red bits yet......! Going to try Aveeno used by my daughter for her eczema years back and the us site chemocare.com suggested it in their 'care for PPE (Hand Foot syndrome) as well as Udderly.

So I'm NOT going to do any more washing up, the site even said don't use rubber gloves either as this holds the heat against the palms...I read all this out to my family, whilst having breakfast...I shall wait with baited breath to see how bad the pile that already exists on the kitchen surface increases! I think I may have to cope with the heat on palms bit as the stress of seeing it all there and knowing I have to try and get dinner ready later, I can't cope with mess before cooking - I get too stressed!! Ha!

One thing I have done this am which was also suggested is to put hands and/or feet on a cold pack - you know those squidgy, malleable ice pack and this has helped with some of the soreness and I've been able to type quite happily..yeehaa.

With all the different websites and what seems hours of reading I'm getting quite knowledgable about lots of new stuff. This PPE is interesting and now knowing why it happens, I feel happier...mad huh but that's how I seem to cope. I was even more sad and started to look up metabolic processes, with organic chemical formulas - took me back to A level chemistry! What I can remember is postage stamp size now so was hard but I now know how each of the drugs work.

well enough of the science...going to do more science - bake a cake!

Love and hugs
Fiona x

ForumMember
Member

Re: Tact2 trial

Hi all
It is the Cheadle John Lewis's that i go to, my cousin lives just round the corner in heald green by the church, Have any of you suffered with pain in your arm, today mine is so sore and straitghening it really hurts, the veins in the top feel really lumpy, i have used Ibrufen gel as told by BC nurse and hot water bottle but its really sore tonight, i thought i was having it to good,
just one more epi next fri then onto Xeloda, it has passed so quickly, cant wait to hear how good the cream is, i have already started putting cream on my feet at night in readiness, ever since i did my second moonwalk my right foot has never been the same it's always dry and flaky.
going for a curry tomorrow with 40 friends from work, one of the girls are leaving, i'm really looking forward to it,
Flo i cant wait for xmas when our 13 yr old gets her own laptop, then i will have mine all to myself,

Shirl

Flo62
Member

Re: Tact2 trial

Hi again Angela - I left a thesis on one of the other threads - Xeloda (capecitabine) side effects - on what went on if you want to see, but I am feeling better today. It just seemed to be the 2-3 days once I had stopped taking the tablets - I was told by the Chemo nurses that it is because the drug is at its highest potency at the end of the two weeks - the opposite to the Epi which was the other way round.

I know Epi was hard but there was always something to take to make the effects easy, or at least for me I found it so. .. Once I started the meds to stop the heartburn/relux I felt okay; the nausea was pretty grim but I wore bands and took the meds and it was copable; once I had 'diflam' it took the soreness out of the mouth ulcers on my tongue which were only bad towards the end of the 4th cycle. Okay the tiredness was grim I must admit,

BUT I feel generally okay on it. The stomach cramps and the 'interesting bowels' can be irksome esp if I'm out, but drinking and eating little and oftern seems to have helped these.

Hacked off about my hands though - I never realised how much I used them and it is making typing, and general household things difficult. Driving was a little uncomfortable. But many of the comments on BCC forum re Xeloda say they are okay and it has not affected their hands or feet. If I didn't have that then I would feel completely normal with the odd upset stomach feeling and that would be all.

I feel lucky I haven't sore feet 'coz I can still go shopping and be okay - but I am getting the odd tingle so I can imagine that next cycle I might just have the feet come into it too!

Can't wait to get thie UdderlySmooth cream - it's supposed to be 'fab' I'll let you know.

Fiona

amdacc
Member

Re: Tact2 trial

Hi Fiona

I think you probably have as much chance of your 13 year old taking the hint as I have of the other half talking the hint. Its like talking to a brick wall. I dont envy you with the hands, I have managed to keep mine under control so far, saying that, my feet hurt, If i walk anywhere they get sore quickly. They are looking pretty dry.

How are you with the other side effects?

Angela

Flo62
Member

Re: Tact2 trial

Thanks Angela for that. I have Mandarin already - I'll pop and get some Frankinscence too. Hands started to crack; skin peeling off and look and feel burnt on ends of fingers now! Hey ho makes cooking and washing up hard. My 13 yr old may even take the hint and help with the washing up - but I'm not holding my breath.
Ha LOL sort of !
Fiona

amdacc
Member

Re: Tact2 trial

Hi girls

Im now on my second course of Xeloda and so far its not been bad at all. Im tired and have had some diarrhoea but the tablets seem to sort that for me. The tiredness is still there... but I havent felt sick so thats good.

Fiona, I have really dry hands at the best of times, I was told to be very carefull with them, I have been using shea butter at night and put on cotton gloves to sleep in, it seems to be doing the job. The girl at the hospital said to put in couple of drops of frankinsence and mandarin as these are supposed to help the skin heal. Might be worth a go....

Hope you are all getting on OK

Angela

Flo62
Member

Re: Tact2 trial

Hi Mal - thanks for your reply. Just feeling down, as these side effects just seem harder than I was expecting. I'm searching out on internet for Udderly Smooth hand cream which was suggested by trial bcn and should get some next week. No stockists in Manchester though. Nearest is in Liverpool but they only have the foot cream.

Do you have diarrhoea every day or just at certain times Have started another thread to get feedback on this but not had any replies yet?

Hope all plans for your shindig going well and that the tiredness is not too debilitating. I can't go into work because of age of children so I can wallow at home! Can think too much at home though.

13yr old bugging me for lap top so gotta go!
Hugs to all
Fiona

maltomlin
Member

Re: Tact2 trial

Hi girls

Shirl glad you're sleeping better. The steroids are a pain. I remember watching films at 4 am. Sleeping patterns do return on xeloda. Enjoy your shopping in Manchester tomorrow.

Fiona - sorry you're having a bad time on xeloda (read the other thread). I've had the runs in the morning but that's all, otherwise it's just the tiredness and low level nausea which I can cope with. I've just finished the 3rd cycle of xeloda and the tiredness is cumulative. Went in work this morning and a girl came up and said 'you're a real inspiration to us all' and gave me a hug. I don't feel that way. Sometimes I feel well and I work longer then I feel rough.

Don't want to feel inspirational - just normal

We aren't brave (well we are) just want to be normal (whatever that means).

Mal x

Flo62
Member

Re: Tact2 trial

Hi Shirl,

Glad to hear that you have slept! I remember,oh so well, the insomnia, and it's awful, so can really relate to the elation when you have a decent nights kip.

Sorry to hear about your cake. I have to say that after baking two xmas cakes and an apple cake plus doing dinner, and finally clearing up kitchen, I was absolutely floored. I'd been on my feet from 1pm until 9pm. Energy level hit rock bottom and I did far too much.

Has John Lewis opened up in Manchester? I live a short drive to the cheadle one and know of the one in the Trafford Centre, but didn't know of one in Manchester. Did you have a good time. Coffee/Tea and cake is good at Cheadle too!

Hugs to all

Fiona x

ForumMember
Member

Re: Tact2 trial

Hi all
well they cut my steroids and i slept fro 7.30 till midnight, then 12.30 till 8am this morning, and god i felt fantastic, OH had to make his own packed lunch though, first time in weeks,
My sister has suggested that we go back to Manchester ( John Lewis) on thurs, for some more retail therapy, well OH did find some new bedding there last week so i might go and buy it, and i love there coffee shop, I might write a book at the end of all this, Coffee n Chemo good bits n bad,
Fiona. i tried to bake a cake the other day, then woke up when it was cremated, so dont think i will be trying that again in a hurry,
Oh well feeling sleepy again so i'm going for a nice bath then bed,
night night lovlely peeps
Shirl

Flo62
Member

Re: Tact2 trial

Hi everyone,

Just been re-reading through the thread again to remind me where everyone is up to. I don't know about you but I seem to be losing brain cells by the dozen and having to constantly write things down otherwise I completely forget! I'm only 46, but my nearly 13 yr old Jess said " what's that disease you get when you are older....Alzheimers we replied. "have you got that too?" ....Out of the words of babes! Ha Had to laugh otherwise you'd cry!

My so much has happened to you all over the last few weeks.

SHIRL, I can relate 100% to doing the cleaning etc in the early hours and when I was on Epi I went for days without having a good nights sleep and didn't take the steroids (as per Chemo unit instructions) but my sleep pattern is returning to 'normal' now on xeloda.

I think your work mates are fantastic raising that amount of money. My school let the parents know why I was off ( Can't got to work as work with KS1 children Infants and told by Onc no way could I work as too high a risk of infection) and when they had their Think Pink day - ALL the children - even the tough boys who would never dream of wearing anything pink joined in. The school raised £500.00. We normally raise if we are lucky £300 tops for any charity, so it was brilliant news. The staff I work with made me an A3 pink booklet with photos and the children had drawn pictures of flowers and they all had lovely messages too. The title of the book was 'If lovely people were flowers we would pick you' Well you can imagine when I received it, the flood gates opened, so I feel priviliged....

talk about pratty - just did something wacky on this keyboard that had me typing in chinese characters! Panic set in as I could imagine the comments from OH...thank goodness I rectified it..Ha sort of

LINDA - hope all is well and you are not experiencing too many side effects.

JUNIELIZ - Oct has been rough month for you and I feel for you. I was told I might have to have Blood transfusion and really panicked. Ate loads of red meat and iron rich foods! Praying Nov is a better month.

LIZZIEMUM - Hope the runs are being sorted with tabs. When you said they started 2nd day is that after first days of Xeloda or after 2nd round of tabs? Thanks for mentioning about teeth too. My teeth are a bit twitchy. Two in particular and they have never really given me any probs before. I was getting really worried that my dental hygiene was not good even though I have been rinsing mouth frequently and using high dose fluride paste the dentist gave me. Has anyone else need a tooth clean and polish as my teeth are quite brown? I know it's the chemo and mouthwashes combined but they do look disgusting. What sort of treatment can we have when on chemo??

Anyway -must get on I've been on the forum for 2 hours! Cakes to make, ironing to do. Gotta catch up with Super Mal! Still at thinking stage of cards and presents though.

Have a good week. Fiona x

maltomlin
Member

Re: Tact2 trial

Hi All

So sorry you were rough Shirl and in hospital but glad you're better. I have kept a bag packed ready for hopsital and of course 'Murphy's Law' applied and I haven't needed it thank goodness. You seem to be back to your old self again shopping and wrapping. Love Christmas. Third down, one to go. You've not been too bad on epi have you? So I bet you'll be running a marathon on xeloda!

Gardening Fiona - I haven't touched mine for 6 months. It's a mess. I agree with you about the support on this site. It's just brilliant. I had very low days on epi and found this place a real lifeline. But thankfully those days are over now I'm on the tablets. Just knowing you can come on here for a moan or to let off steam anytime has certainly helped.

Yep Liz - loads of energy. My house looks clean again too. Just the garden to contend with now. Sunny here too & have actually pegged some washing out. First time it's been fit for ages.

The party is in North Manchester, 28 March - all welcome. There's already half a dozen ladies I know who are on the 'other side' of breast cancer who will be there. Did I tell you that my mother-in-law had BC over 50 years ago and is now 87! (She's not coming to the knees up though - she has heart problems)

I'm no super woman believe me, I just feel so much better, both physically and mentally and am making the most of it.

Keep smiling ladies and enjoy the week-end.

Mal x

lizziemum
Member

Re: Tact2 trial

Hi all

Feeling much better this week. Lots of energy. well not as much as Mal...........
My house actually looks and feels clean for the first time in 6 months.. How awful saying thta. before BC I would have been mortified.
Lovely and sunny here today.
Take car all and have a good week

Liz

ForumMember
Member

Re: Tact2 trial

Hi all
sorry i have not been on all week, i ended up being admitted on Monday night with temp 38.6, i had developed a nasty cyst on my lovely lady garden, i couldn't sit down without it hurting, but they gave me anti-biotics then let me home on tue night, thankfully it is now a lot better.
Alby, my head was sore due to hair falling out but it eased so much when OH shaved it all off for me, first one down for you only 3 more to go,

Mal . I feel so much better now i have my prothesis it looks more natural, so i feel more human, hey and dont forget my invite to your bash i will travel any distance for a good party,

Flo, glad to have you back, sorry you hit a bad patch but i fully understand you wanting to throw the phone across the room, i just want to shout at it sometimes then i feel guilty because my friends are only phoning because they care,
I envy you working in the garden, i have really neglected mine this year, my bay tree is about 15 foot tall now and really is need of a pruning, and i need to cut back all mu fuschias bushes,

I have spent today xmas shopping and i have wrapped them all up, what are you girls like making xmas cakes, i just go to marks n sparks and then put my own sugar crafted piece on top ( that a friend made for me) and it looks homemade, but i have bought all my cards and i plan to write them next week.

I had number three yesterday, bit hard to get the vein but no side effects again, i feel just as good as before it all started, but my Onc said she wants me to stay off work so who am i to argue, the DN came to today to give me my injection and i have had no trouble from these either, i feel just as good as i did before i started chemo, i hope im as good on the tablets.

Have a happy sunday all.
Shirl

Flo62
Member

Re: Tact2 trial

Hi Mal - you really are super woman! I think I gave up writing xmas cards 3 yrs ago as just never seemed to get the time to sit down and write them - sent virtual cards and an email and said I was saving trees!
I have purchased a few as, as I am at home, I should have time to write them....However, have started to soak fruit for xmas cake - just started it 3 days ago and not got any further!

However, yesterday saw me in garden for 2-3 hours racking and clearing leaves dumped from the 4 oak trees/1 beech hedge/several hawthorn trees that all my lovely neighbours have that make up the boundary between the BIG houses and our little semi!. It was hard work but well worth it. I knew the bad weather was coming so took advantage of sunny weather. Cold but wrapped up warm, wore gloves and supplied myself with oodles of tea!

Tks Junieliz for your kind thoughts. Had 2 reasonable nights sleep - that's why did garden as had 'bags' of energy!. I just have to get up at around 04:00 ish to go to loo and don't really know if need loo as the 'sensation' is hardly there, and I toss and turn until I'm really awake and get up go and ten have real difficulty in getting back to sleep. Is this another side effect or is it just because i'm getting older and things go to 'pot' down there, or am just really unfit???

Oh Lizziemum -hope you are feeling better. Having cold is bad enough when you don't have all this to cope with as well. (I ended up at Christies Hospital in first few weeks because of bad cold, but antibiotics helped)

Linda - one down, tick it off... The GCSF injections hit me quite hard; like flu and as if someone had whacked me across my back with a cricket bat. It lasted 24- 48 hours and then went but did feel pretty rotten and wasn't too happy knowing I would have to have them but then again I didn't pick up any infection all the while and the side effects became easier the more I had. I pre-empted feeling bruised by taking paracetamol, curled up on sofa with hot water bottle for 2 days and tried to get my family to 'pander' to my every whim!
Now I am on the tablets - no injections but then I don't know if my wbc will dip and I get cold/infection etc. unchartered waters for me now. Just need to be more careful on days 7-10, so I believe.

I was thinking (hard at mo I know) but I don't know how I would have 'coped' without having this forum to talk to you all. It REALLY does help especially when you are unsure of something. So thanks for being there to share.

Mal - I had thought of throwing party too but not on such a grand scale!! Where are you holding your 'bash' - somewhere in Edgerley?

maltomlin
Member

Re: Tact2 trial

Hi all

Liz - show-off huh! Made a xmas cake too! Know what you mean about the time flying, I go for my last lot next week. Strange isn't it? When you are waiting for the first chemo you can't imagine the end but now........

I've got my appointment thro' for the rads planning session in 2 weeks and I'm planning big charity event/party in March. I promised everyone who has been so good and has helped me over the last few months that I would have a knees up when it was all over. The idea has really taken on a life of its own. Two teachers at school are in bands, one a folk group and the other a pop band (Abba/Blondie etc) and they're both playing for nothing. So I've hired a room in a big hotel, buffet etc and are going to ask for donations to cancer research. Should be good. (I love planning things)

Glad the rest of you are all feeling good.

Take care

Mal x

lizziemum
Member

Re: Tact2 trial

Hi everyone
Had cold and been laid up fpr 4 days but ok again and back at work. Got 2nd load of tablets today. Can't beleive I' half way thrugh 2nd half of treatment.
I'm one of the lucky ones no rads and no hormone tablets or herceptin. (Triple neg) that's the only reason have had to have chemo.
Was at dentist yesterday as filling fell out 3 weeks ago and he wanted to check plug in tooth was ok. Wont do anything else until treatment finished. When mentioned had toothache said it would be the chemo affecting teeth and he will x-ray then all in Jan to check if any damage been done...
You are a show off Mal... Crads and presentsents done, decorating you are puting us all to shame

Take care all

Liz

junieliz
Member

Re: Tact2 trial

Hi Fiona, nice to hear from you again. I have finished epi and am now on 3rd CMF and had this yesterday and must say I do find this one easier. I go back again on Monday for day 8, then next one is 8 December so a good break. We all seem to have different effects but we will get there, my hair is now growing back slowly but is a positive sign it is coming back, but on saying that the eyebrows disappeared this week but well we have to get on with it it is part and parcel of our treatment. I had a picc line put in a month ago and had a few problems at first but OK now, a lot easier when I go for chemo, also have bloods taken from here so OK. I had a blood transfusion 3 weeks ago but was not as scary as sounds was looked after throughout. Hope your sleeping pattern comes back it is awful when you cannot sleep. I get up early and am shattered by 10pm I don't sleep during the day and find this helps me sleep at night. I hope you will soon be feeling yourself again take care hope to hear from you soon love junieliz

Flo62
Member

Re: Tact2 trial

Hi Shirl, Liz, Junieliz and Mal ...I'm back and SO SORRY NOT to have been on for such a long time. I bet you wondered if I had left the county. I hibernated. Was so grumpy with everyone. 3rd Epi floored me and I even threw the phone across the lounge at one point as was sick of the phone calls asking me how I was. I just wanted to get some sleep and the phone seemed to be forever ringing. I'm over that now. 4th Epi wasn't as bad just the actual administration of it. Veins and blood flow just weren't playing ball and had hard time and ending up in tears - not done that before. It's 2:30am - still having probs sleeping but will post again tomorrow and catch up with you all again. Hugs to all. You have all been on my mind and I felt really guilty not been on forum but then again trying to get this portable pc off my 12 yr old Jess, has been pretty difficult. Everytime I thought I'll check onthe forum,Jess has it and is curled up in her room with it.

Big hugs to all and a great big hello to Linda. You'll get loads of help andadvice on here. Mal seems to be the oracle and is so consistent with posting on so many threads, just want to meet her and ask how does she get the time!!

Fiona

maltomlin
Member

Re: Tact2 trial

Hi Linda

When I was typing the post above yours was not on here. (My mother phoned in the middle so it was a long time before I actually posted it)

Glad it went OK. The injections do make some people ache a bit although I never had a problem. And the sore scalp is when you're losing your hair.

Know what you mean about being very aware of your body and every little ache and twinge. It's natural.It does wear off a bit. I'm not as bad as when I first started epi. I seem to have things more in proportion now and don't worry quite as much.

That's the first to cross off the calendar and after the next you will be halfway thro' epi.

Mal x

maltomlin
Member

Re: Tact2 trial

Hi Shirl - you're so lucky to be feeling so well. I think I had all the side effects going at different times on epi but the worst for me was the mouth problems and the loss of taste. Everything tasted so awful that I actually lost weight (and still haven't put it back on). No problems on xeloda though thank goodness.

I wrote my Xmas cards and wrapped the presents last week. Still more pressies to buy though. Not quite finished yet.

Do you feel better now you've got your prothesis?

Went to the local shop today and the girl on the till said 'Oh I love the streaks in your hair. Where did you get them done?' She was totally shocked when I said it was a wig. I didn't say why I was wearing a wig. It made me feel really good.

Keep smiling and have a good week-end ladies.Hope all went well Linda.

Cheeky Mal x

alby
Member

Re: Tact2 trial

Thanks Mal and Shirl for the welcome and words of advice. The first epi was posptoned, just over night. The chemo suite was busy and I was sent home. Returned the next morning (yesterday) and all went well. So far I have been fine apart from a few waves of nausea last night. The district nurse came this morning and gave me the GCSF injection, I am a little achy in the back but otherwise fine. I am so aware of my body at the moment, I feel I am constantly looking for changes. I expected to feel awful today but I don't. I know it may all still get me soon.

Shirl is your scalp sore because your hair is coming out or is this something that goes on afterward?

Linda

ForumMember
Member

Re: Tact2 trial

Hey cheeky Mal,
I dont overdo it, honest, im lucky i feel really well on this treatment, no sickness no sore mouth no nothing, but i get bored and i cant just sit around watching telly, i try to go out every other day, then rest at home for a day, I am now thinking of writing my xmas cards next week, this might help pass some time, finally received my prothesis today, 12 weeks after surgery,

welcome Linda i agree with Mal and arm 4 does go quickly, the worse part for me has been the sore scalp, i now lay a silk scarf over my pillow at night and it seems to be helping, I just wish i could sleep at night

stay relaxed and take it easy
Shirl

maltomlin
Member

Re: Tact2 trial

Hi Girls

Hey Shirl hope you have a brilliant meal tonight and hope you're taking it easy.

Liz - hope you're tolerating xeloda OK. Like you I'm managing 4/5 hours in work. Go in early (7.30/7.45) and finish at lunchtime. Feel as though I could work longer but am not pushing it, I've told them we can review it after Xmas when I see how I get on with the rads. They're very good and I feel lucky that they are.

Linda - welcome. Arm4 goes in a flash. It doesn't feel like it when you're first starting. It seems like a long road. Epi hits most people the hardest and it's a question of doing what your body is telling you (not like Shirl on here who overdoes it!). Having said that it won't be as bad as your imagination would have you believe. You'll feel better when the 1st is under your belt. I put all the dates on the calendar and cross them off one-by-one. Hope tomorrow goes OK. Come back and let us know how you're feeling. We've all been there and know how you're feeling. Once you get epi out of the way the xeloda tablets are a breeze by comparison.

Take care

Mal x

ForumMember
Member

Re: Tact2 trial

Posted on behalf of new user Linda
Lucy

Hi everyone, I have just joined the forum. I have just signed on to TACT2 and been given arm4. I have my first Epi session tomorrow morning and the district nurse coming around on Friday to give me the GCSF injection. I have been looking through the discussions and it is all very reassuring. Thank you for the honesty on here, I like to have the facts and know all the possibilities before I start. I look forward to chatting with you all.

Linda

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Re: Tact2 trial

Hi
wig is good, i went with my sis to her cancer unit in Chester today and they even gave me a nice freebie bag of goodies, deoderant, eyebrow shapers, cranberry juice, simple face cream, it was a talk on limphodema and very informative.
Mal - glad your managing with the decorating but as you kept telling me dont do to much, I went to bed at 1am last night and was back up at 2.30 just not tired, the perk of this was when OH got up for work at 6am his packed lunch was already done for him, he said he much prefers his lunch when i do it,

The girls from work have asked me out for lunch on Thursday, a local pub by work has started a carvery for £3.50, some of them are going tonight to try it out,

Lizzie dont you overdo it either, the cleaning will wait , oops did i realy say that,

take care
Shirl

maltomlin
Member

Re: Tact2 trial

Hi All

Liz - Yes - loads more energy on xeloda. Think you're back to normal and then do too much! Have started decorating this past week after the tins of paint sitting looking at me for weeks. Lounge done and hallway half-done.

I'm counting down the days and marking them off on the calendar. Finish xeloda on Dec 5th - yippee! Next time I go on 21 Nov the onc will also give me the arimidex tablets which I will be on for 5 years. Are you going to be on hormone therapy?

Shirl - hope you're still full of beans. My wig has got more comfortable as time has gone on, it is now worn in just as my hair is growing. Take it easy.

Mal x

lizziemum
Member

Re: Tact2 trial

Hi everyone
Shirl glad you are feeling better with the extra tablets. Agree with Mal though on cleaning the bathroom tho....
I have just started giving my house a good clean but its one room over a weekend. OH and son do their best but since first op in May not much been done in places taht arn't easy.. Still got two rooms done over the last two weekends. hope to be done by Xmas when everyone is home.

Mal lucky you on you penultimate Xeloda bet it feels great. Only two more lots of tablrts this cycle and I'm done. Then only three cycles to go .
You tell us to take it easy and then have a party for 7 grand kids.... pot and ketlle....

Feeling much better now and as you say Mal more energy. At work most days for 4/5 hours
Take care all

Liz

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Re: Tact2 trial

Hi
Emma is 13 going on 25, but she is such a darling, we have finally finished her bedroom it looks great i want to move in,
OH shaved my head tonight and it feels so less painfull, Em gave me a hug and said your still gorgeous without your hair Mum, i nearly cried, But my wig feels so much tighter and hot,
Oh also made me a fantastic smoothie last night, vanilla ice cream milk and baileys, I slept so well last night im thinking of trying another one tonight, but not sure if i should have alcholol,
Going with my sis for her check up tomorrow, 8 years on but she has bad limphodema,
work collected £1500 on friday for breast cancer,
have a good week all, and i wish you all feel as good as me,
Shirl

maltomlin
Member

Re: Tact2 trial

Hi Shirl

Cleaning the bathroom at 4 am? Take it easy girl!!! And hide the steam mop!!

Really glad the tablets are working and you are so much better this time round. Emma's Xmas list sounds very expensive. How old is she? It's a lot cheaper when they're just little.

Take care

Mal x

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Re: Tact2 trial

Hi Mal
feeling great today, still no sickness, the tabs are Haloperidol and Lorazepam, the ist one did make me a bit sleepy for about 4 hrs, but took the other one late last night and i was sooooooooooooo awake i came back down at 2.30 am, and at 4am i was cleaning the bathroom, i finally fell asleep on the sofa at 5.30 till 7.30, but i didnt feel tired today, and i went shopping but only to costco.

Work actually raise £1500 yesterday, they are just so brill.

well i will take another Lorazopam in half an hr and see if it makes me sleep tonight, if not i might use my new steam mop i bought today and clean the lounge wooden floor, the excitement of that should send me to slep,

You sound like you had great fun last night, we only had 16 children call here, and Emma had made up 35 treat bags, thats about how many we usually get. i have told her she can take the rest into school next week.

Emma wrote out her xmas list today, Lap top, girls aloud book, cheryl cole book, sims game,
then she wrote me alist, Necklace, perfume, chocolates, and new hair,

enjoy Sunday and i hope the rads planning goes well
Shirl

maltomlin
Member

Re: Tact2 trial

Hi Shirl

What a fantastic bunch of workmates. It makes such a difference when they are so supportive, doesn't it?

And hope the tablets are still working their magic. What are they called?

Your OH sounds great. Keep laughing.

I collected my 3rd lot of xeloda yesterday and they've referred me for my rads planning session. Appointment should be about a month. I can actually see a bright light at the end of the tunnel now. AND my hair is growing (more quickly on the legs of course).

Had a Halloween party for 7 of my grandchildren last night. It was fun but very noisy! Wacked today.

Hope the rest of you ladies are keeping well.

Keep smiling

Mal x

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Re: Tact2 trial

Hi Mal
glad you managed to get over to Anglesey, and managed to enjoy one day in the sun,
Second epi today went well, i went and had my hair cut really short on the way home, this will make it easier for when OH takes the clippers to it, down south starting to depart as well, OH reckons he should get a perk and has offered to take the clippers there, he does keep me laughing, I went to bed at 2pm and got up at 6.30 for my tea,chips n fried egg, it was scrummy, i dont feel sick at all i just feel fantastic, will take other pills at 11 and go to bed,
My work mates did pink day today, and they have raised over £1000, they all wore pink, and did cakes sales, and some of the fellas wore pink Tu-Tu's and did a fun run around the camp, I was so sorry i couldn't nip in for a coffee, but the air con in my office seems to feed germs around the office spreading disease everywhere.
But i think they are all so fantastic for all the support they have given me, and for the awareness they are raising.

Liz- hows it going on the xeolda, i will start my first lot about the 11th or 12th Dec, and finish first course on Xmas Day, im just hoping for a good day to enjoy xmas with family,

Shirl

maltomlin
Member

Re: Tact2 trial

Hi girls

Well came home a day early - my head was so cold during the night and the forecast was for colder weather tonight, so here we are. Had a lovely day yesterday. Went over to Anglesey and did part of the coastal walk (couldn't have done that on epi), sat on the beach in the sunshine. It was glorious. Then today snow! We had a really slow journey home, it was snowing really hard and the hills were covered. That's it now - the site is closed til March. Hopefully I'll have some 'proper' hair by then.

Liz, sorry you seem to have so many side effects. Do you have meds for the runs? My stomach has felt a bit 'iffy' at times but nothing really. Doctors' receptionists are a breed of their own, aren't they? (Apologies to anyone here doing that job.) Make sure you let your onc know about the runs.

Shirl - I know what you mean about not being keen on the sleeping tablets, I have been reluctant to take anything unless I really have to, but if they stop you being sick they're worth it. You'll have to take it a bit easier now. I shaved my hair when I got up one morning and it was all over the pillow, and when I ran my fingers thro' my hair it came out in handfuls. I can honestly say that it hasn't bothered me at all (except for feeling cold) but I know it upsets a lot of people. I just think it's a small price to pay.

Keep smiling

Mal x

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Re: Tact2 trial

Hi Mal
sorry i didnt save some sun for you, I hope the snow wasn't to bad though, I couldn't believe it when we were driving to Glan Clwyd Hospital at 8.30 am on Tuesday morning, and the weather was just awful, rain, hail, sleet wind and snow, i hope you were all snug n cosy in your van.
My onc was not to happy that i was sick after my first epi, and she said she wants to send me home after my next treatment with some sleeping meds, im to come home take a tablet and go to bed, she said i should sleep for several hours, then get up for a couple of hrs, take more meds and go back to bed, Has someone on here been telling her i was doing to much,. She said with this treatment i shouldnt be sick, but im not to keen on taking sleeping tabs, but i said i will give it a go.
My head is sooooooooooooo sore, it feels like i have had my hair tied up in a high pony tail for too long, but when i was doing it this morning i noticed my top was covered in hair, i might need to get it cut by the weekend, my hairdresser is calling round tonight she has made me some pumpkin soup, so i will ask her when she thinks i should get her to cut it.
Next Epi on Friday at 10am, at least im not as nervous this time.
OH just came in from work with lovely cream cakes, he's such a Darling

Shirl

lizziemum
Member

Re: Tact2 trial

Hi Everyone
Glad your transfusion is over Junieliz and the decorating is done Shirley
Have agreat time at your caravan Mal.
Don't know where you lot are finding sunshine. All we have had is rain and wind is frezzing up here. Glad not in Skye though one of the caravans moved 2 feet end last week. Fortunately noone in it at time .
Feel good most of time on Xeloda, move energy, but oh what runs (said I would get them wk 3) They only waited until day 2; indegestion, heartburn and fould taste. also cough in morning. Arn't I doing well. New receptionist at doctors who is a pain the rest are lovely. Told me today soonest appt is Thurs pm - not urgent _ Told her not yet but she just glared at me. You know the type no brain and full or their own importance (sorry -thats nasty)

Anyhow its still better thn epi

Take care all
Love Liz

maltomlin
Member

Re: Tact2 trial

Hi Girls

Glad the transfusion went well and that you're feeling OK Junieliz. You've got a couple of decent weeks hopefully before the next chemo.

Shirl - you seem to be managing really well after your epi. Glad to hear you're having a lazy day. Will you save some sun for us? We're coming down to our caravan in Wales on Sunday til Wednesday, closing it up for the winter. Looking forward to a bit of a change.

Liz - hope you're still OK on the xeloda. Looking forward to finishing my 2nd cycle tomorrow and then a week off. May force a couple of glasses of vino down on Sunday night. Don't touch it while on the tablets.

Take care ladies and have a lovely week-end.

Mal x

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Re: Tact2 trial

Hi all
glad we all seem to be doing well, I cant seem to take it in that im ill, i feel so good, Having a totally lazy day today, just searching internet for holidays for next year, i fancy a tree house in Brittany, my cousin from Norway went and she said it was fantastic,
Just been nagging my surgeons secretary again, i have a well woman plan and he has had the form since July, but he hasn't sent it back yet and the insurance company are chasing him, I feel awful chasing him when i know he is so busy and treating so many other ladies that are only just coming to terms with this, but when my sick pay stops im sure he wont offer to pay my bills.
It's a lovely day here in Wales today, a bit brisk but sunny.
take care lovely ladies
Shirl

junieliz
Member

Re: Tact2 trial

Hi all, had transfusion it was a long day but was looked after very well. Antibiotics seem to be working on my line, I now have more movement and less discomfort. I have two weeks off now before I have to have chemo again, feel ok so far no problems hopefully will stay that way. I hope you are all well and not doing too much, rest seems to be the key so we must take heed.

Hi Shirl glad the bedroom is done sounds lovely, don't overdo it though take care.

Hi Liz hope you are well and taking it easy.

Thank you for your kind words will keep you posted take care love junieliz

maltomlin
Member

Re: Tact2 trial

Hi Shirl

I'm sure most us will remember the 'lying on a hedgehog' feeling, then the sore scalp. It happens before your hair departure! You're supposed to be taking it easy not decorating. Don't overdo it or you will suffer. Still you've finished it now so take it easy.

No problems with your taste or your mouth (ulcers)? And glad you're feeling well.

Mal x

ForumMember
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Re: Tact2 trial

Hi
My sis came here this morning at 9am, and we have finished the decorating, It looks lovely and Emma is made up, she is nagging OH now to lay her new wooden floor and build her new wardrobes, he told her he will start the floor on Sunday, he's working on Sat,
I feel really well today, had a great appetite, but did wake up in the night with a weird feeling in my head, it was as if i was lying on a hedgehog.
hope you feel ok,
Shirl

maltomlin
Member

Re: Tact2 trial

Hi girls

Liz - up until now xeloda has been used very successfully for secondary breast cancers (liver, lungs etc.) but the Tact 2 trial is seeing how effective it is on primary breast cancer. I have great faith in it after doing a lot of 'googling' before agreeing to go on the trial. And the side effects - there's no comparison between epi & xeloda. I feel normal (whatever that is these days) and human again.

Junieliz - hope the transfusion went OK. Let us know.

Shirl - OK? You've not been decorating again have you?

Take care

Mal x

lizziemum
Member

Re: Tact2 trial

Hi Shirley
Know just how you feel isn't it great !!!!!!!!!!!
Hi Mal
Hope you havn't got problems if you are seeing Occ Health?
Got my tabs yesterday (infor in other thread) Consultant was very laid back abou Xeloda as says it is used a lot at our hosp for metatatsic breast cancer.. Any one know the difference I think I'm being a bit thick today?
Main probs hands and feet and diarrea week 3. Doesn't sound any worse that epi though

Hi Junieliz how was the blood transfusion are you feeeling any better?

Take car all
Liz