I am starting my chemo on monday 15th, and I’m starting the TACT 2 Arms 4, has anyone else had this if so could you tell me how you are on it.The only worry I have is it is alot of chemo in a short space of time.
Also does anyone have any problems with their friends while beening on the chemo, as I feel my friends are avoiding me now one said to me today you look a bit happier today as you seem as you haven’t been smiling in a funny sort of way.
Forgive me if I am beening self centered but we do have a lot on our minds don’t we
I have lost a lot of friends through this and made some really food one so its not just you. My friend of 15 years told me “she didnt want tot crowd me” I have seen her once since being dx in April yes it hurts but its not time to worry about that these people are rither unable to cope with the thought of losing a good friend and will in time come round to the idea when they see how well your doing so give them time unlike my friend who has always been on the selfish side. On saying this I have made a wonderful friend who is there for me whenever i need her so im blessed strange how this works lol
I too am on Arm 4 of the Tact 2 trial and had my 4th Epi last Friday. There are positives and negatives being on this arm. The positives - time absolutely flies and before you know it the Epi is finished and you’re getting ready for the Xeloda, and also you are very closely monitored which I find reassuring. The negatives are that you don’t really have a ‘good’ week just a ‘better’ week. I found the side effects doable but each Epi hit me more than the previous one. Having said that I have managed to go to work every other week although I find I hit a brick wall after about 3 to 4 hours and have to go home to bed for an hour.
My hair starting falling out just before the 2nd Epi and I shaved the lot. You’ll have some warning as your scalp will get sore beforehand. I got a brilliant wig which I feel really comfortable in although a lot of ladies on here just stick to scarves etc. Whatever suits you.
I am looking forward to having the Xeloda tablets as many ladies tolerate it much better than Epi (hoping that I am much the same).
You’ll be fine and in a few weeks you’ll be in the same position as I am. Make sure you read the ‘Top Tips for Chemo’ thread if you haven’t already. The most important tip is to drink loads and loads of water.
Hi rainy,
there are lots of us on TACT2. They have to fill their quota before Dec 2008 as it has been going for a few years. There are threads on arm 4 where you will find people on the same regime if you do a search, but for the first half you will also be like arm 2 with accelerated epi and GCSF injections. Joanne and I are in for the long distance round the world journey as we are both on arm one for 28 weeks, yawn, yawn. I have finished epi and am on the second part now, having next chemo on Tues 16. Good friends stay is all I would stay but some just need a little bit of time as either scared they will say the wrong thing or just frightened. I tend to be upfront and tell them everything so they don’t need to ask and once they see I am ok to talk and not depressed, their curiosity usually takes over and from then on it is more normal. Others have dropped me like a hot stone and will be kept at arms length if they try to resume the same relationship 10 months later. Do what is right for you and lots and lots of luck as you walk this walk with the rest of us with BC. Just shout if I can help in any way.
Lily x
Hi LORRAINE and Hi to LILY200 (‘met’ you on another thread with Anxious!
I too am on arm 4. Only started on Monday and was okay for first couple of days. Had big mix up with GCSF injections and finally got mine 2 days later, but wasn’t anticipating having such side effects. Not been to sleep now for 24 hours. I ache so much I feel I have been run over by steam roller. My shoulder blades and spine feel bruised. I ache in my hips and just feel totally washed out…and this is just the first few days. Does anyone know if this is a continuous thing with the injections or is there some respite? Checked out Neulasta side effects so know its the injections but it doesn’t really say if this pain and discomfort will go on for the next 18 weeks. Has anyone else had this?
MAL it’s comforting to know that you are further on down the line and bearing up. Have you had all side effects they say with epi considering we get chemo so regularly. You say that it’s do-able but do you just feel awful all the time. Have you felt okay between epi’s. also, do the GCSF injections carry on when we go onto Xeloda?
Fiona, everyone reacts differently to the chemo as they do to the GCSF injections (I had no side effects whatsoever from them). In answer to your questions - you don’t have the injections or steroids when on Xeloda but some people need anti-sickness pills (hope we’re the lucky ones), and the Epi side effects? Different with each except the accumulated tiredness and my mouth which has been bad for the whole 8 weeks (no taste and thrush, but can live with that). After no 1 I had a sore throat (like swallowing razor blades), after no 2 sickness, could smell and taste chemo (that was awful) and the ‘runs’, no 3 sickness, runs and sore nodes along my collar bone and now after no 4, sore nodes again and another sore throat.
The side effects tended to kick in on day 4 and last until about day 10 or 11 (tapering off gradually after day 6) and then felt relatively better with more energy etc. for the last few days. Psychologically I found it harder towards the end (no 4) as it was beginning to get me down. I just wanted to feel normal again (whatever that is). But make sure that you’ve got things planned when you are feeling a little better. It does help. And go with the flow. I tried to fight it and carry on as normal but it just makes you feel worse. Just batten down the hatches for a few days and sleep…
The time soon passes. In no time at all you’ll be over the Epi and looking forward to Xeloda, hoping (like me) that you’ll be one of the lucky ones who finds it a breeze.
I have my first Xeloda next Friday so will let you know how I get on. Let us know how you’re doing and remember take it easy.
Hi Lorraine
Am also on Arm 4
Had my 2nd epi on Wednesday - feel o lot better this time round but still tired
After 1st epi had heartburn and burping all time. Spent days 7 and 8 in bed - did too much at the weeken as felt ok
(have since been told that the steriods that I had before chemo and tablets to take home would have worn off --ooops
My doc gave me Gaviscon and Omeprazole and that cleared up heartburn and burping. Also very bad taste in mouth
Hospital sent me home with omeprazole theis time and noheartburn or burping. Also gave me Corsydil mouthwash to taek after food and lucky me no bad taste this time
If you let them know they will try and solve it for you.
My hair is on way out now started yesterday but am getting bald patches so will have to shave it off tonight/tomorrow and wear wig. Good thing is chemo nurse said hair grows back for most of us on Xeloda
Take care everyone
I have just started tact 2 arm 4 September 9th. I was absolutley terrified because of the unknown mostly. The first day September 9th i had the Chemo, Saline drip and antisickness intrevenous line it took about and hour with talking to the breast care nurse thoughout. As it was going in, it felt like my arm was sprayed with deep heat and then travelled up through my shoulder and into my breast. The doctor was called at this point but nothing to worry about as some women get this heat feeling. First day at home i started to feel rather nauseous but i took the mild antisickness drug which calmed it down incredibly. Water tasted absolutley disgusting as my mouth started to dry up it tasted of metal so i mixed with robinsons barley and it was fine. Please drink plenty of fluids to flush you out you will fill much better. Day 2 i was okay i actually got up and went to the supermarket by the time i got back i was exhausted but that is okay. Always take your antisickness drugs even if you don’t think that you need them they really do help. Day 3 I slept all day no energy levels at all until the evening some friends came round and cheered me up with stories of their week just something normal instead of talking about the horrible C. Day 4 i have energy levels back again. I think it has gone well so far again you really do not know what to expect everyone is different and it is all anticipation.
Do not worry about your friends you will have plenty of us you can count on over this forum. It can be lonely at times but we can all pull through this together and hope for that ray of sunshine.
Hi to everyone who has written to me about the TACT 2 Arms 4, it has been a big help thank you.
Felix, I will make sure that I drink plenty of fluids and take my anti sickness tablets.
Joanna42 though all of this I have made a few really good friends which has made me relise who my really friends are and I should think of that if you know what I mean.
Hi rainy, i was on tact2 arm 4 from March to August this year.l I am now on my rads. The epi i found hardest as felt unwell but luckily no hospital visits. The xeloda is much easier to stand but brware dry hands and feet! Mine are still very dry and have numb fingers.I used to cream my feet and hands with aquueous cream at night which helped alot. i did this before thie dry skin so helped when it did come. I did have some nausea on xeloda but no where near as much as epi amd was well controlled by cyclazine. I have had 2 rads , 18 to go. I cannot believe I have got this far. Good luck on arm 4 and ask any questions you wish
Hi,
good luck to all of you. I can see a really nice thread emerging here as you are all on the same treatment, which will give you great support. You will start catching me up fast in your Ferraris on accelerated, I got a bike with a flat tyre!! LOL
lots of luck to all of you
Lily x
Feelling quite normal at the moment, No sickness just waves of tiredness, but i can cope with that.
I have been enjoying the weather it really does lift your spirits. Even to just go out in the garden and breath some fresh air. I have had my hairdresser around today cutting my wigs to shape and they look really nice so i’m feeling quite positive at the mo.
Rainy - hope it went well today. Take it easy and drink plenty.
Felix - you seem to be coping really well after your 1st epi. Long may it last! Just go with the flow. I love wearing my wig and feel very glamorous (compared to my normal self) and will probably wear it afterwards if I have a bad hair day. If I hadn’t found a comfortable wig I think I would have become a recluse.
Rachael - hope you don’t mind me asking - how are the rads affecting you? Most people seem to find them easy but tiring I think.
Hi everyone
Spent yesterday in bed again - did too much again - my boss was away for weekend so said would cover for hime (only couple hours a day) what a fool I was but he has been so good …
This round of epi has been easier no bad taste. Just weary and no taste of food - I can cope with that.
OH shaved rest of hair off on Friday night. I actually got comments such as like your new hairdo from people hadn,t seen for while when I wore my wig, so cannot be bad.
Mal where was this good weather you spoke about. Its been rain, rain, rain here. but I am in the Highlands so perhapsthat is why.
Rainy
Hope everything went well yesterday for you.
Am going to my local Maggies this afternoon for a Look Good - Feel Better course 2 hours of being shown how to do make-up, tie scarves etc. plus FREE cosmetics at end. Worth a look on the Maggies website everyone.
Keep in touch everyone
Liz
Hope you’re all up and about and feeling OK including you Rainy. Most of you I think have your next chemos next week so you should be feeling better and making the most of it.
Liz - I know what you mean about doing too much. Was feeling brill so went into work for 6 hours!! Ended up in bed feeling awful so won’t be doing that again in a hurry. Glad you’ve got a wig you’re happy with. It makes such a difference. Sunshine? We had a lovely week-end (Manchester & we’re not known for sunshine), went to North Wales on Saturday and loads of kids in the sea. I certainly wouldn’t have gone that far.
Hi all, am through my surgery and saw my oncologist today to discuss chemo and have been offered the Tact 2 trial. I haven’t had time to read it all up yet but was wondering what affected your decisions to go on the trial as opposed to the ordinary chemo route. Any advice much appreciated.
Welcome (to a place you’d rather not be). I can only talk about what influenced me. On the trial you are very closely monitored more so than the conventional route. I see the onc on every visit which I find very reassuring. The other appeal for me was the possibility of getting Arm 4 which is accelerated Epi (every 2 weeks instead of 3) for the first 4 cycles plus oral chemo for the last 4 cycles. Of course you are allocated randomly by computer and may still end up on the ordinary route. I’ve also been asked to take part in a family cancer research project and I jumped at the chance of that.
I was allocated Arm 4 (as above) which I have no regrets about. The 4 cycles of Epi flew and I am starting the first cycle of Xeloda (oral chemo) on Friday.
It’s an individual decision but so far I’ve no regrets.
My influence was much the same as Mal. Again you are chosen at random your destiny is within a computer. Tact 2 arm 4 is as i am told the best one to be chosen for so i feel vey lucky. I have only had my first bout of Epi and due my next 23rd September, but the time has flown by.
What did it for me was the research that goes into Tact 2 to help other women like us. I thought if i can make a little bit of a difference i will. You are closely monitored and you have the nurse and oncologist with you.