TACT 2

[system]

Hi all

Hope you’re OK and still coping with the side effects. It’s pointless trying to fight the tiredness though isn’t it? Just makes you feel worse.

Like you Felix I shaved my hair off once it started falling out and it did make me feel better. Something you actually have control over! Hope it went OK. I’m sure my hair has started growing although my OH says it’s my eyes (could be his of course).

I must tell you though, I can’t believe how good I feel on Xeloda (so far). I feel (almost) normal. My energy levels are up, my head’s not messed up and the only side effect now is very dry hands which I’m smothering in cream regularly.

Hope the sun’s shining wherever you are.

Take care

Mal

[Flo62]

Hello everyone. I’ve not got back to the forum for ages - mainly because I spent ages typing out lots of feedback on all sorts of threads over a period of days . One of which was 40 mins etc only to enter to realise that the wireless pc hubby bought had ‘timed’ out and I wasn’t connected to the site. Another I had forgotten to sign in. So I was so p****d off I boycotted the pc…!

Anyway I hope to goodness this one works !

It’s good to read up on all the other girls on the TACT2 trial.
Maltomin - thks for all your guidance and help. You have a good memory remembering when we are having chemo etc
First week seemed to be fine and then I had a major set back and caught a really nasty cold which had me being admitted to Christie’s (manchester) for several hours (whiilst they checked bloods etc) My family were totally shellshocked as legs gave out when walking onto the ward. Not the best for first session. I cried thinking goodness this is only the first chemo. So had antibiotics for 1 week to help and hibernated for 2 days in bed. 2nd chemo was given go ahead on 22nd Sept, after ensuring bloods okay and given ok by registrar. More nausea this time, but not too bad. Had metroclopramide a few times to help. I do think that eating a little and often helps. Tiredness more than usual, so vegged on sofa! It seems the more times you have the chemo, the side effects seem to be more pronounced. Is that right?
Worst of all has been the thrush since taking the antibiotics. Thinking of going to docs tomorrow as SO bad. I read earlier in the thread about not eating fruit and protein. Has anyone else had the thrush problem?? How was it fixed…? Assuming the chemo knacks your digestion system out and all the good bacteria goes and the yeast etc in the gut has a whale of a time! Woe is me!!

Hair-well nothing left my head until after 2nd epi and then shed loads over the past few days. I ran my hands through my hair on the Wed (chemo day Mon) and numerous tufts came out. I had my really first down day on Thursday as no wig in sight. Huge hassle with wig and even though ordered it on 15th Sept, had heard nothing by 24th so chased it up. Said they would look into it. Phone call came when I was in bed. Sorry, wig out of stock. So hacked off as wouldn’t have wig for my birthday (today) and still don’t know when it will come in. I wasn’t expecting to wait 3 weeks. I think I will be ‘bald’ in afew days time. I have really patchy hair and the children look at me and go yuk mum. Thank goodness for the new buffs i purchased at the weekend. any way this sounds like a real woe is me day but it’s not been too bad. Just wish I could shake of this cold. Once anti-biotics stopped it came back again - chesty and been grim again but using over the counter remedies and inhaling for what seems to be 6 x a day!! So here’s to a better week. Hope this goes on…Fiona

[Flo62]

Yippee - it works…Can only think that my brain was fuddled when tried to post last few times
will now make sure will chat to you all more frequently. Hugs from a new 46yr old.
Fiona

[system]

Hi All

Hope you are all OK. Some of you have not been on for a while, so you’re either glued to the sofa or feeling well and are out and about. Hopefully it’s the latter.

Fiona - I’m under Christies too! So sorry to hear that you had to be admitted after the first epi and that your cold still hasn’t cleared up. Regards the side effects and tiredness, I found that it was different with each epi. The 2nd for me was the worst although the ‘messed up head’ lasted for the full fortnight after the 3rd. The 4th I found the easiest. Thrush I had the whole way through. Never went. I did get medication from the onc but it didn’t touch it. The tiredness did get worse with each one (still is) & I have to go to bed in the afternoon. But you’re now half way thro’ the epi. Yipee. Hope you had a good birthday despite no wig. I really didn’t feel comfortable in the NHS wig and bought one online from Contrast Wigs. It’s brilliant. Lightweight, comfortable and feels like real hair. It arrived in a couple of days.

Off for my afternoon nap now and then to hospital for CT scan.

Mal

[system]

Hi girls

Sorry I haven’t been on for a while, but you’re right Mal it’s because I’ve been feeling better and catching up on things that I should’ve done. I’m not looking forward to thursday, my 2nd epi, but at least I’m having a few good days first.

Mal, what do you mean by the ‘messed’ up head? is that the fuzzy head feeling that feels a bit like you’ve got a head cold?
And how come you’re going for a CT scan?

The only thing that seems to be lingering is heartburn. Anyone else?
Also, I’ve discovered a small lump in my arm, near my elbow, I’m figuring this must be as a result of pulling my lymph nodes out, but I’ll have to mention it to my oncologist to put my mind at rest. (I feel like such a wimp mentioning little things like this…but where else am I gonna do it?)

No sign of hair loss at mo, but have my wig at the ready, and my little ones were very relieved to see that I’d bought some new hair and are very approving of my bandanas.

Big hugs to you all
xxxxxxxxxxxxx

[system]

hI EVERYONE
Hope your weekend was ok and nor too manu side effects.
Xeloda sounds much much better than epi Mal - I hope I am the same when I get it.
Spent yesterday in bed again. My son was playing with his Ceilidh Band - he is 13 and plays the accordion - on Sat night to raise funds for one of our local Gaelic choirs who lost their money when Zoom went down the pan. Trouble is I had to go and see and did’t get home till 12.45am ugh Latest I’ve bee up since first op on May. So still hald dead today but geting better.
My husband had informed me that my hair is growing back already - arn’t I the lucky one - and only 1 epi to go.
Hopefully everything will be ok next week as going to Isle of Skye for a week on 10th with caravan. Shoulkd be a nice break.
Fiona hope you are ok now
ans Mal what is your scan for?
Momathone hope your 2nd epi went ok and you hair is still with you

Love to all
Take care
Liz

[system]

Hi Girls

So glad you’re feeling good and are out and about.

Momathome - you’ll be half way thro’ epi after Thursday!! Hope you get the nausea sorted out this time. I took gaviscon for the heartburn, which did the trick. So good luck on Thursday. You should mention the lump although I’m sure it’ll be nothing. It’s best to mention it and put your mind at rest. The ‘messed up head’/chemo fog felt like sea sickness. I felt as though I couldn’t walk a straight line with low level nausea.

Liz - 12.45 am - didn’t know that time existed! Can’t remember the last time I stayed up that late. Sounds good though. So does a week in Skye. Your hair growing back already? You are lucky. As I said only my leg hair is growing yet!

Fiona - hope you’re still feeling OK.

CT scan? A couple of months ago I complained to my Onc that my shoulder and arm (good one) were painful and I’d convinced myself that it was something sinister. He sent me for a CT scan which showed that it was just a problem with a tendon in my shoulder. However it did show something on my liver! He doesn’t think it is anything but wanted another scan just to make sure. Results next week when I’m back at Christies. So fingers crossed. I think I’ll have a few stiff drinks the night before.

Make the most of your good days.

Mal

[system]

PS I forgot to say, Liz, that there’s no comparison between epi & xeloda - I feel really good. Just the sickness on the 2nd night so I take the anti-sickness pill before I go to bed as a precaution. The hands are a bit dry but nothing really.

Hope you’re all the same.

[system]

Hi everyone.I’m on TACT 2 Arm 2 and feel like an old pro now.1st Epi I was really sick,but medication was changed and I sailed through the rest of the EPI.Do ask your nurses about different anti-emetics if you’re being sick.The CMF has been worse for me which I believe is unusual.I’ve been sick more despite medication being changed.I also have sore feet and hands.If anyone else is on this regime start using E45 cream on your hands and feet now…I’ve had this week’s chemo delayed and been given E45 to use before my treatment next week.

Felix & Fiona - I know the hair loss is quite traumatic,but it can start to grow back fairly quickly.I lost my hair after the 2nd EPI (July) and it’s already starting to grow back! I hated losing my hair as it has always been long,thick and very dark brown so it was quite a shock to my family(especially my wee mum) when I lost it. Surprisingly I became used to being bald very quickly and have actually enjoyed wearing the hats my hubby bought in Tie Rack.They’re actually quite trendy and my boys think I really suit them.I may even wear them when the hair comes back properly. I’m like a wee fat toddler just now with tufts of bristly hair about 1/4inch long.

Momathome-The heartburn is horrid.I still haven’t figured out how to get rid of it.Tried everything and watch what I eat,but it only goes away around 10 days after chemo. If you find something that works please tell me.I suffered like this during my 4 pregnancies,but was always healthy otherwise.

Mal- I think the sickness is the worst part of chemo.I do sympathise with you.

I’ve only 2 more cycles to go before rads and feel I’m nearly finished.Like most folk say ,it is do-able,but sometimes hard work. No worse than pregnancy really.Good luck with your treatments!

Tricia

[system]

Hi All

I haven’t been on since reporting the hairloss, well i am completely bald now and hate it i look like a boy. The weekend was awful with hair falling out and tiredness. Sunday i could not even raise my head from underneath the duvet. Monday felt a little better, but Tuesday my energy levels were zero again, which i find so frustrating as in my normal life i am a very active person. I find it is really messing with my head. 3rd epi next Tuesday and i am counting down the days and dreading it, everyone says you are half way their but it is so hard when you are feeling sick and tired constantly…

Mal good luck with your CT

Felix

[system]

Hi All

Thanks Felix for the good luck. A bit of good luck is long overdue!

Epi ‘messed with my head’ big time so I can sympathise with you. I know we’re all different but the 2nd epi was the worst for me, 3rd a little better and 4th fine. Hope you’re the same. Just go with the flow… Look forward to the xeloda which I’m finding a walk in the park by comparison (up to now).

Two weeks into xeloda and my hair’s starting growing! So you won’t have to suffer the bald look for long.

Hope the rest of you girls are OK.

Take it easy

Mal

[Flo62]

HI everyone and hope this finds you feeling a bit better than the last and if not my thoughts are with you…BIG TIME! Did something pratty on this lap top (hubby bought it for family with prime intention for my use if was stuck in bed…seems to have been purloined by my 12.5 yr old incessently!!) 2nights ago when I was typing stuff to you guys and my finger hit something and I lost the Bl**dy lot AGAIN. I was livid. Had big strop and row with hubby about it. I’m sure you can imagine the scene. I wouldn’t mind but I am pretty computer literate having worked in the IT industry before marriage and now work with 3 classes at primary school etc, but this diddy laptop is SO sensitive. So, I’m hoping Fri 3rd Oct is a better day !

Anyway…I look like Gandolf from Lord of the Rings. Hair is really whispy and expect the final strands to fall out next week when have 3rd Epi on Monday …Felix we seem to be at the same stage.

So, generally, chemo side effects not bad so far - It’s my immune system that is pretty bad though. Been constantly fighting this cold that seems to have been with me ever since 1st epi. As mentioned a few days ago, my thrush was bad after the antibiotics but it became unbearable this week and was in tears as I was SO sore. (apparently low immune system means candida too…) Been trying absolutley everything to get it under control as I CANNOT have this for the whole chemo journey.

Been juicing stuff from health book and drinking all sorts. …does anyone know where I can buy frozen cranberries at the mo? Local Tesco and M&S not got any.

Docs on Mon, and Thurs…I seem to be living at the place. Lady doc I saw yesterday said “oooh, that’s really sore” No need to go into specifics here. Ha Ha! So armed with serious steriod and nystatin cream…things are feeling much better. So Fri 3rd Oct becoming better day already!

Also, my wig finally arrived. It’s okay. Have to get used to it a bit. I think with all my hair falling out which seemed to have heaps of grey and or blonde sun bleached grey bits this year that my original dark hair colour which the whole family chose for the wig seems to be TOO dark! Also it doesn’t seem to be as good as the original one I tried on in the shop. Any way…keeps my head warm and I don’t look that bad.

So feeling okay at mo. Been reading up on diet and cancer etc., and have ‘ditched the dairy’ and reduced meat almost to nothing. Red meats totally out now too, and I have to say my energy levels have been okay. Trying to drink Green tea… it’s an up hill struggle on this one, but peppermint tea is good - also for that queasyness/odd stomach feeling that seems to be there all the time.
Mouth soreness seems to have started mildly…expecting it to get worse from Monday as the Epi builds up in body, so thank heavens for Corsodyl.

One thing have noticed this morning is the amount of bruises I have on my legs. HUGE and I don’t remember having banged myself…but they don’t hurt! Has anyone else had this??

So with energy levels okay I’m going to hit the massive Ironing pile that has risen over the last 4 weeks.

Hugs to all

Fiona

[system]

Hi girls

Hope you’re OK momathome after your chemo yesterday and did the onc put your mind at rest about the lump?

Fiona - ironing? What’s that? OH still doing ours (he insists of course). Have you read about Manuka honey? I started it before I had 1st chemo after reading it’s good for the immune system and then the trials nurse at Christies recommended it too. They’ve been trialling it with different cancers. It’s supposed to keep your WBC up. You can buy it from Tescos, Morrisons or Holland & Barrett. It comes in different strengths but get over 10.

Yep. Isn’t it cold with a bald head. Never thought about it before.

It’s going to be a busy week for some of you next week so hope you’ve got a wild week-end planned.

Take care

Mal

[system]

Hi girls.

Well, had 2nd epi on thursday and I hesitate to say it but…not so much nausea…yeeeeaaahhhh.!!!
Feel ok on the whole. Showed onc my lump Mal, he doesn’t think it’s anything serious, not connected to muscle or vein so just wants to keep an eye on it…funny but since then I’ve hardly thought of it, though it’s still there.
Tricia, acid reflux seems to be under control at the moment, I mentioned it to my onc and he changed my medication to include Lansoprazole and so far so good. I bet your GP would prescribe it.
Hair, well it seems to have started shedding, though not much at the moment. I have a dread of being out somewhere when a clump falls out and having to rush off home!! Also, I think I’d like it to happen while my daughter is around so she can get used to it with me.
We had a photo sesh done before my mx and in one of them my offending boob is making it’s last public outing as cleavage, very glad to see it I was, strange huh, I think it’s because I look so normal!
Hugs to you all
xxxxxxxxxxxxxxxxxxxxxxxx

[system]

Hi All

Hope you’re all making the most of the week-end despite the awful weather.

Glad you’re doing better this time momathome. So far so good. Also glad the onc has put your mind at rest about the lump. Know what you mean about the hair falling out. I got so fed up of hair everywhere that I shaved it all off and felt much better. Mine is growing now but it’s really weird. Feels like wire. Will have to visit the health shop I think.

Have just taken my last xeloda tablets for this cycle so have a week off now. That feels good. Only 3 more cycles not. The side effects have been OK. None of the problems that you’re warned about just a little nausea now and again which was sorted out with anti-sickness pills.

Take care girls

Mal

[system]

Hi Girls

3rd epi tomorrow. over half way there and then onto xeloda and reading how well you are doing on them Mal i am hoping for the same side effects. I started to feel quite normal and regained energy Friday, so met up with friends on Saturday and treated myself to a couple of glasses of wine. My mouth is extremely sore i have tried the corsodyl but it feels like it is burning a whole right through my tongue anyone got any other ideas??

Thanks for the tip on the Mal i ordered the well being honey from the internet although it works well it is very expensive for a tiny jar.

Flo i have unexplained bruising on my legs like you i cannot remember walking into anything very strange. Also if you can’t get on with green tea which i find very dry and bitter try Red tea it has a much better taste and also packed with good antioxidants.

Bye for now
Felix x

[system]

Hi All

Hope it went well today Fiona. Only 1 more!

Good luck for tomorrow Felix. I tried different mouthwashes when I was on epi and the only one that worked for me was Difflam. Thankfully it’s stayed in the cupboard this time, I haven’t needed it on xeloda (so far). (I keep saying ‘so far’ 'cos I don’t want to push my luck.)

I do hope that you’ll all be OK on xeloda. I’ve been using E45 cream regularly on my hands and feet & so far so good. The side effects have been a lot easier (almost non existent) and I’ve been managing to go in work for about 5 hrs a day. Even the tiredness is better although I do expect that to get worse.

Anyone else having chemo this week - good luck & just go with the flow. It doesn’t last forever!

Mal x

[Flo62]

Hi girls, just getting back onto feet after yuk week…just want to say will post msg soon…fiona.
btw changed my log on to flo62 under suggestion by moderators, just in case you thought I was someone different!!
‘speak’ soon hugs and all Fiona x

[system]

Hi Fiona

So sorry you’ve been feeling rough and hope you’re surfacing again now. The 3rd & 4th epi I found glued me to the sofa for a week each time. It’ll be your last this Friday won’t it? Yippee.

How are the rest of you girls. Hope you’re not feeling yuk and are out and about.

I had some good news on Friday. I got the all clear from the CT scan - just cysts. Can’t tell you how nervous I was. Anyway started my 2nd cycle of xeloda this morning.

Take care

Mal x

[Flo62]

Hi Girlies…Had time out with family - actually went round looking at awnings for our new caravan - due to arrive in Half Term. I’ll be like you LizzieMum…but we won’t venture very far as it’s our first time with a caravan. We decided that camping is just a bit tough when you are doing the chemo run, so our thoughts of changing to a warmer accommodation was accelerated when all this bc happened.

Momathome - had my 3rd epi last Monday and have had acid reflux and indigestion big time since. It’s almost as if all the side effects that I read about has hit at once! I hadn’t really had any of the effects really until then. Have you managed to sort yours out?

(I know I had the cold, thrush etc., but that was additional and not really the side effects of the chemo as such - just bad luck on my part. I shouldn’t have gone into work for the week before chemo (Am teaching assistant for 6 and 7 yr olds) probably caught a bug then! )

Anyway if I drink a hot drink or eat a piece of toast it’s like burning sensation at the back of my throat and further down my oesophagus. Nausea has hit as well and feels like I was when I was pregnant with my children. I keep going to the fridge/cupboard door and opening and shutting it thinking what can I eat to take this nausea away. Trying the Ginger beer, ginger cordial, ginger biscuits route ( I’ll probably end up hating ginger soon). Trying the peppermint tea as well but everything seems to burn my throat. Sucked an ice pop (much to my children’s dismay and quote " but you don’t like those do you mum?" and felt better. So perhaps I’ll make up giner ice pops! HA!

Also - food has NO taste whatsoever. Tried lots of stuff - positively bland and ‘yuk’ Tyring so hard to think of things to eat. I bought some really yummy vanilla ice cream - organic, you name it, which everyone here thinks is yummy. I gave mine to the chn. just couldn’t stomach it and it’s one of my fav foods too. So I ended up defrosting sea bass with fennel and orange at 8:30pm tonight and eating that just because there was nothing else. ( I saw it in the reduced section in Sainsbury and thought ooh that might be nice for OH and I. He never got a look in.) Was nice - but at £4.00 not too often!

Think I’ll phone Stepping Hill tomorrow and chat to the chemo nurses - Or just go and get Gaviscon and some sea bands. I now remember why I hated being pregnant so much.

Maltomlin - I know it’s only one more epi to go but the thought of more nausea etc for nigh on a month does not fill me with enthusiasm plus your experience with xeloda and its nausea does not make me feel enthusiastic about that either. Hope your side effects have been minimal.
Felix - how are you? We are at same stage of chemo so was just wondering whether no 3 had the same effect.

To everyone else, hope things are okay with you all and you’re not getting along too badly.

Fiona x