Hi everyone,
I have just agreed to take part in this trial, I will find out next Tuesday which stage im going on, and i start my chemo on 17 October, had my first op on 6th august Masectomy and SNB one node infected one clear, got through this op and felt great no pain for 3 day’s then next op on 3rd sept to remove further nodes and these were all found to be clear, much more pain after this op and still cant raise my arm up very high, anybody else out there starting on this trial or already taken part, i would love to get your views.
Hi Trojan
I am on arm 4 of the tact 2 trial (accelerated epi followed by xeloda tablets), have finished epi and am just finishing the first cycle of xeloda. Was really please to be allocated arm 4 but having epi every other week does take it out of you a bit. Having said that the time passed in a flash and the xeloda tablets are so much easier.
Everyone is different and has different side effects to the chemo. I also found each cycle of chemo to be slightly different - not pleasant but doable.
There are a lot of people on the tact 2 trial and there are a couple of existing threads. If you want to have a look or join in, just do a search ‘Tact 2’ topic. You’ll get loads of info and support.
And make sure you also search for ‘Top Tips for Chemo’ topic.
Let us know which arm you are allocated.
Best of luck
Mal
Cheers Mal
I have checked out the Chemo Tips and will be taking a trip to boots, feeling nervous about what trial i will be given and unlike previous hospital appoitments im looking forward to tuesday, sad or what,
My hubby is being so protective and thinks i should stay indoors for the period im having chemo so that i wont run into infections, i told him OK you can do all the christmas shopping then he has been a great support so have all my friends and family, My older sister had BC 8 years ago and she’s doing great, she thinks the advances made since then are great.
I will let you know on Tuesday how i get on.
Hi Trojan,
I have been on TACT2 since May and I got arm one from the computer. You can always say no and go to regular treatment if you are unhappy with the draw the computer gives you or you can think fate played a hand. Depends on your feelings about things like that! You will find that there are pluses and minuses with each arm, but every one has to be at least as good as the standard treatment and having your own research nurse is brilliant and you also get more regular checks in the future. Downside of arm one is the length of time 28 weeks and CMF is given as double doses so you go 2 weeks in a row in the final 4 , so more visits - 12 in total. Upside is you get to have 4 different chemotherapy drugs and as yet no-one knows which drug will kill a particular tumour so 4 chances. Also there are no extra injections and you should get 2 good weeks in every cycle to do all the normal stuff and work if you want. Nothing guaranteed of course!! I call it the long country route rather than the motorway but long gaps between each dose can be good for some people.
Hope some others will post on the ups and downs of the trial so that whichever you get, you still feel like you won something on the tombola draw!! Your immune system is low for a short while, but mine has been high right through. Eating a salad out can be more dangerous than walking around! Don’t tell him I said that in case he worries even more!
Lots of luck in the coming months
Lily x
Hi Trojan
I agree with Lily that one of the bonuses of being on the trial is the close monitoring. I see the Onc every time I go to the hospital and I find that reassuring. There are positive and negatives with each arm and some will suit some people more than others.
I don’t know whether it’s coincidence but I read somewhere that Manuka honey was good for keeping your WBC up, so I’ve been taking it every day and have had no problems. You can buy it in Tescos, Morrisons or Holland & Barrett. It’s understandable that your OH is being a little overprotective (better than not caring), but I’ve been working since for the last six weeks. Only 4 hours a day and then I need a sleep, but my employers have been great and I had reached a stage where I needed something ‘normal’ back other than thinking, breathing and talking BC.
Brilliant to hear that your sister is 8 years down the road.
Good luck & let us know how you get on.
Mal
Hi Trojan
I am also on the TACT2 trial arm 2, which means I get accelerated epi every two weeks and then normal cmf in a four week cycle like Lily. I had my first epi on 22 Sept and am now due my second on Monday. I had very mild side effects from the first, mainly tiredness and a bit of backache caused by the Neulasta injection on day two. Just hoping that it continues like this. I had no sickness or nausea, which was the thing I dreaded most, but I did take my antisickness tablets before meals for the first three days even though I didn’t feel sick. I went for my bloods today and they were OK so the injection must have worked. Anyway let us know how you get on Tuesday.
Jackie
Hi al
i have been keeping so busy this week, out wirh friends for lunch and redesigning a bedroom for our teenager daughter, We are all out for a party tonight so been having a girly day in while OH is in work, Poor Him.
Sunday we are taking the daughter and 2 friends to Alton Towers, hope it stays dry, if not we will be going to the water park there instead,
Monday, going to collect new wardrobes and select wallpaper, light fittings and a new bed, OH & brother in law are going to lay the floor and build the wardrobes while my sister is going to do the wallpapering, Im thinking of taking bets on what will be finished first my treatment or the daughters bedroom.
Tuesday will be D day, i will know today what arm im on, and will rush home to share the info with my new buddies,
have a great weekend and no matter what try and smile i find it makes me feel good,
Shirl
Hi there
Glad you’ve been keeping busy Shirl. How was the weather for Alton Towers? It was lovely here in Manchester so hope it was the same for you.
Hope your chemo went OK today Jackie.
Don’t forget to let us know how you go on tomorrow Shirl.
Take care
Mal
Hi Mal and everyone
Again so far so good. Treatment only took 40 minutes and I was home just after lunch. Had a quick nap in the middle of Deal or No Deal but apart from that I feel fine. OH cooked a very nice Spag Bol for tea and we’ve had a nice glass of red wine with it, followed by several glasses of water.
Good luck for tomorrow Shirl.
Jackie
Hi all
Glad it went OK yesterday Jackie and hope you’re still feeling fine. The Spag Bol sounds good but wine??? Still can’t touch it - I’m just jealous. Keep drinking plenty of water.
Right then Shirl, which arm have you got?
Mal x
Hi all
glad it went ok for you Jackie, and the weather at Alton Towers was cold but sunny and the kids all had a great time, Well all went well yesterday and i got arm 4, so i went out with my mates from work last night to a fantastic french restaurant and i had the nicest steak i have ever eaten followed by a great banofee pie and they gave me a bottle of wine to go and all for £15, It was so good im going to take OH next Tuesday before i start chemo,
Going to look at wigs on the 20th but i dont think they will have one to match my hair colour so im a little worried, im a natural redhead and when i was diagnosed my hairdresser put some pink streaks in it, but they look really good or so everyone tells me.
Shirl x
Hi Girls
Arm 4 Shirl - same as me! Sounds as though you’ve been enjoying yourself over the last few days. Good for you. The restaurant is amazingly cheap. You’ll have to book a table for the second week after your chemo. It’s important to have something to look forward to. When do you start - 17th?
Jackie, hope you’re still Ok and just going with the flow.
Mal x
Hi girls
I’m still hanging on in here. A little bit of heartburn today but nothing that I can’t handle. Went out this afternoon and met a couple of retired pals from work for coffee. (except I didn’t have the coffee as it made my heartburn worse, just like being pregnant all over again, I stuck to sparkling water) It was good to get out and chat about normal things, like grandchildren etc.
I’m now getting a bit jealous of the Arm4 brigade, you’ll be finishing before me Shirl, good on you. Also glad that you are getting on well with the Xeloda Mal.
My hair is definitely on the way out, day 17 today. Not had any great chunks fall out yet but am aware of loose hair on all my clothes. I’ve got my wig and plenty of hats, scarves and bandanas ready.
Take care
Jackie
Hi Jackie
Glad you’re doing OK. Can sympathise over the hair. I got really fed up of the hair coming out and especially in bed when it was all over my face when I turned over. Felt much better when I shaved it off (had a couple of drinks first).
and yes Shirl is on the fast track.
Malx
Hi
sorry to hear your hair is on the way out, I bought myself a hat today and the daughter liked it, But im nervous of how i will look without my golden locks.
will i lose my eyebrows and eyelashes too,
I have asked if i can get the GCSF done at home to save having another 70 mile round trip, my friend is a doctor and she has offered to do it for me if i cant face doing it myself. i shake at the thought of it.
Mal i hope i get on with the Xeloda as well as you,
OH just came home from taking the daughter Ice Skating, and bless him he bought me some chocolates, and he took today off work and we went shoping and out for lunch, He is so good .
Shirl
Hi Shirl
I never lost my eyebrows and lashes and was so glad. I think I was dreading that more than the hair. I got my wig online from Contrast wigs and it’s brilliant. Even has three different coloured streaks. Everyone has admired it. The injection I had done by the district nurse who came round the day after chemo. There’s no way I could have injected myself. Your OH sounds perfect! It’s so important getting the support, treats and hugs!
Glad you’re getting out and about Jackie and not just glued to the sofa. You seem to be coping really well.
Keep well girls
Mal x
Hi Mal
went to Chester with my sis today, what a lovely day, we were sat in a cafe when a woman came up to me and said i just love your hair and the pink streaks are great and i love the cut, when i wasn’t as thrilled as she thought i might be with her comments. I felt i had to tell her that i will be losing it very soon, 51 years and no one as ever come up to tell me how great my hair is, but now it’s gonna depart an i get a fantastic compliment, life with cancer sucks !!!.
I read in one of the booklets i was given that you can get a NHS voucher for £150 towards your wig, but all the hospital told me was that they have a wig clinic and they have given me an appointment, what if i dont like their wigs can i go elsewhere and claim the voucher.
My OH is really the best and he proved it this morning when i tried one of his woolly hats on, He said DONT get a hat like that you look like a Bag Lady, ths is why i take him clothes shopping he always tells me the truth, ha ha,
I will NOT be injecting myself, my friend Jane , OH, or district nurse can do it, but i wont. Im starting to get quite nervous now about the chemo, but i have plans to stay busy till next friday, Im going out to friends on Sat, taking daughter skating on Sun, out with my sis to her cancer unit for her check up on Monday, out for meal on Tues, helping to paper the daughters bedroom on Wed, Sleeping on Thursday then whoopee woo it’s Epi-day.
relax n keep smiling
Shirl x
Hi Shirl
Chester, just love it there. Where are you? We are in Manchester and I’m being treated at Christies. I did get an NHS wig from the hospital but to be honest it wasn’t very comfortable so my OH treated me to another from Contrast wigs. It wasn’t too expensive - £75 but is lighter, more comfortable and it feels and looks like real hair. Some hospitals give you a voucher that can be used elsewhere but not Christies.
You’re keeping yourself busy this week. I was cooking for England the week before chemo. The freezer was bursting at the seams. It was just my way of keeping busy.
Try not to get too nervous. Your imagination runs away with you and it honestly won’t be as bad as you’re expecting. Just remember to have something to eat before you go and drink loads of water (will get rid of the red wee quicker). I always had the epi in the morning and went straight from the chemo suite to the hospital canteen for lunch. You’ll be fine. If I can do it, you can.
I had a CT scan 2 weeks ago and got the results this morning. Completely clear everywhere. So relieved. You imagine all sorts. Also collected my 2nd xeloda tablets, so only 2 more and then I’m finished with chemo and onto rads.
I was thinking, as you’re on arm 4 like me, once your hair departs it will only be about 8 weeks before it starts growing again. That doesn’t sound too bad does it? I’ve got used to going out in my wig now. The first few times I felt really self-conscious but then I went into work and one of the fellas told me that my new hairstyle looked brilliant and took 10 years off me (I’m 56). No looking back after that.
Not heard from Jackie for a day or two - hope you’re OK.
Take care
Mal x
Hi Mal
I’m here but today’s been a bit of a down one for me. Felt as though I’ve had a hangover without the pleasure of the drink. I’m sure it will be better tomorrow. My younger daughter is visiting with my 2 1/2yr old granddaughter. That’s sure to cheer me up. We don’t get to see her very often as they live over 2 hours away, so I’m definitely looking forward to seeing them. I’ll just have to grab a nap when I can. So glad to hear your good scan results. Not sure if they do regular scans here in Sheffield, not had any so far.
Enjoy your busy days Shirl. Thursday will soon be here and over and hopefully you’ll not get too many se’s. I have been a bit worse this time but perhaps that’s because I’ve tried to do too much. I’ve been out every day, except today, since I had my chemo on Monday. I’ll remember to take it a bit easier next time.
Take care
Jackie
Good to hear from you Jackie. You sound as though you’ve been overdoing it and you really should be taking it easy. I found my 2nd epi the hardest and like you had been trying to carry on as normal. For the 3rd and 4th I just went with the flow and didn’t go out for the first week after, was glued to the sofa and slept.
It’ll be lovely for you to see your granddaughter but take it easy! Had 8 of the grandchildren round for tea today and did find it a bit much. It was lovey to see them all playing but also lovely to see them go.
They don’t do routine scans here in Manchester either. A couple of months ago I had a CT scan because I’d been complaining of a pain in my shoulder (good side). It was just tendonitis but it did show something on my liver and adrenal gland. The onc said he couldn’t rule out secondaries. Had another CT scan a couple of weeks ago and then the all clear - just cysts. You can imagine how my head’s been all over the place the last couple of months. Well I went over the top celebrating last night and ended up with a proper hangover this morning. I was just so relieved I burst into tears when given the all clear.
Hope you’re enjoying your week-end Shirl.
Well back to setting the alarm for tomorrow morning as Xeloda tablets start again. But I can see the light at the end of the tunnel now.
Take care girls
Mal x