11-08-2007 07:59 PM
I`m on the Tact2 trial arm 4. I have completed the 4 cycles of the Epirubicin and am now on cycle 3 of Capecitabine (Xeloda)
When I was first diagnosed with BC it was all a shock and I elected to have a mastectomy of the right breast with node clearance. I was fortunate that the lymph nodes werent involved but a second suspicious area was found that had not shown up on the mammogram.
I felt awful by the time the 4 cycles of Epirubicin finished. I am diabetic and the steroids to stop the sickness stopped my medication working so my blood sugar level went sky high. And the GFS made my back hurt so bad.
Its been a lot easier since starting the Capecitabine and I`m having few side effects. Tiredness is the main problem.
If anyone is in the Kettering/Northamptoshire area please get in touch. I havent found any support groups locally yet but havent felt the need yet.
Thinking of all of you. Ands hugs to all.
28-07-2007 10:31 PM
Well, didnt manage to log on after the wig fitting as I got back late - showered and left for the ann summers.
the NHS wigs leave a lot to be desired - but I eventually found one that didnt make me look like something out of little britain or dallas!!! I also bought a private one (thanks Kelly - I shall claim that back on Monday). I have gone strawberry blonde -no - not ginger!!). Apparently I cant have it cut in until I lose my own, wont be long - I start on Tues.
Ann summers was great - found a new drink called p something, anyway it is bright pink and can be bought from Asda for Â£10. It is to be mixed with lemonade and looks like the dentist mouth wash (taste nice though),. It is in a black bottle - pessoah or something like that - drank so much of it I can't remember the name.
Am off to the Isle of Wight for the day tomorrow - hope uou are all well,
sending lol, Tracy xx
PS: I agree Kelly - cheers to Madge and all who sail in her!!!!!!
27-07-2007 09:58 AM
I really hope you get on ok at the wig fitting today and it isn't too traumatic for you (I know you've been worrying about it). I reckon your drafter will defo look after you really well, particularly given his own situation.
I hope your last day at work goes ok. I think its good that you've decided not to work through chemo or rads. We are in the enviable position of having an awesome employer, thank you your madge!!!!
Anyway, let us know how you get on today,
P.S. Enjoy that Ann Summers party!!!!!!!!!!
27-07-2007 08:26 AM
Hope the wig thing goes OK Tracy. Do let us know. I am going tomorrow to see if I can find one that is not triangle shaped or flecked with grey....nice.
Well done on running 3 miles...I wish. I went to the gym Mon and Weds but my 'poorly lump' or 'zappy' as my little girl has re-christened it hurt when I ran, so only did 10 mins then walked uphill instead. Bloody hell, can't even do that......
26-07-2007 10:20 PM
HI girls, thanks for the support - nice to know I am 'normal' (not that my oh would agree)!!!
Sorry I haven't been on line. My day was bad yesterday so my friend came and took me shopping - we left at lunchtime and got back at gone 7!!! Retail therapy - works everytime.
I went back to work this morning - it was ok. Had a couple of 'wobbles' but nothing I couldn't handle. Met my drafting officer (guy who controls my future (I am in the Navy)), found out his son has had testicular cancer - so I feel like I will be well looked after, he was so nice I felt like crying!!! Mad eh.
Tonight I went to my running club - ran 3 miles (poor I know), then sat in the bar and had a glass of wine!!! Last day at work tomorrow - don't intend to work through chemo and rads.
So glad your CAT scan was clear Jillian - maybe our emotions are running in parallel as well - shame we all don't live nearer - could meet up for wine and a good cry - god, imagine that in the local Weatherspoons 'LOCAL FEMALE NUTTERS ON THE LOOSE'.
I am off to an Ann Summers party tomorrow night. More wine to be drunk.
I will log on before I go and let you know how the wig session went - don't want to look like something out of Dallas!!!!
thanks again girls, you have picked me up, sending lol,
25-07-2007 10:36 AM
Just wanted to say I felt the same last week, very tearful, very stressed about starting chemo and very angry about maybe losing my long blond hair.
Started chemo friday and it wasn't as bad as I expected, knocked me out for the weekend, but I wasn't acutally sick.
Went to see the wiggy woman at our Big C centre in Norwich, she was just such a funny old bird and me and my hubby ended up having quite a giggle at some of the quite ridiculous wigs she was pulling out for me.....I am gonna go back and see her on Saturday as she didn't have the right colours for me, but I feel now the treatment has begun I can oddly deal with the consequences better - yet again I think it was fear of the unknown. If I didn't have a wedding to go to in 2 weeks time not sure I would bother with a wig (and I never thought I would hear myself say that!).
Hang in there, it will be fine and you will start to come to terms with it as you go along.
24-07-2007 06:04 PM
Hi Tracy, Just wanted you to know that I am thinking of you and totally understand how you are feeling. Ive had a really bad week aswell and lots of tears. Think its just that its getting nearer to us actually starting the treatment, but we will be fine! I always seem to feel better after a good yell, got my partner totally confused I think one minute the hormones are all over the place and Im crying buckets, next minute Im cooking the tea!!! On a happier note my Cat scan was clear, so I was delighted with the news, just got to go for a ultrasound on my liver next Wednesday now.
Hope the wig fitting goes well for you, I havent been yet but hope to by the end of this week.
Take Care Tracy and dont forget I am always here if you need a chat.
Lots of Love
24-07-2007 03:55 PM
I have numerous 'feeling sorry for myself' days so I can totally empathise with how you are feeling. I can't blame you for not going in to work today as you're feeling down. As you know I haven't been to work since diagnosed in March, currently 'non-effective' which is up for review in Dec. Reckon I'll go for some sort of 'phased return' in the new year once I've finished my rads. Tell you what though, I think it'll be a long long time before I'm fit enough to undertake (and pass!!) my RAF fitness test or go on deployment anywhere. I should be in afghan now, funny how things turn out. My family were dreading me goin there and I bet they wish I was there now rather than goin through this sh*t!!!
I'm glad the sgt in the med centre has been really helpful to you. I think med centre's don't really know what to do with us as its certainly not something they're used to dealing with every day. Mine normally just get a load of airmen going in trying to get out of guard duty or something!! I had a look yesterday and my wig/scarf claim came in at Â£230, not to be sniffed at!! Also, my boyfriend put in a claim on JPA for my hosp trips and parking so far and 2 days later I got Â£175.
Went of to debenhams to today as I've recently been converted from Clarins to Clinique and clinique have an offer on. The girls on the counter there always spoil me and they gave me 3 different free gifts and then gave me and my mum a facial! It was absolutley lovely and just what I needed. So, I've spent a small fortune on skincare products and have been thoroughly pampered, lovely!! Its not like I'm spending loads on my hair these days!!
I really hope your wig fitting goes well. I have 2, one NHS and one from 'Trendco'. I have worn both of them only a couple of times. I am much happier when wearing my scarves and I really don't care if people stare. I am sure the wig people will be more than used to people getting tearful when they go for fittings so I would not worry about that at all. I have my first counselling session on thurs. Bit nervous as never had one before so don't really know what to expect!
Take care and enjoy a nice glass of wine or 3, or a nice soak in the bath.
24-07-2007 02:42 PM
Thanks for your kind words of support - this site has been great for me too Mel. I am upbeat most of the time and I suppose the down side was bound to happen sooner or later. I think Jane is right - once I start the chemo it should get better. Admitting you are scared is probably the hardest thing, although I have found it easy to talk on this site as I know you all understand what I am feeling. Friends just see the positive - no more surgery!!! So i will hang on in there!!!
I have read some great sayings on this site and keep reminding myself of them - one of my favourites is 'don't wait for the storm to pass - go dancing in the rain'!! Very apt I think!!!
Well thanks again girls - I will keep you posted - I go for my wig fitting on Friday (no doubt more tears)!!! will let you know how I get on!!
Sending lol, Tracy xxxxx
24-07-2007 02:20 PM
I'm on TACT2 as well- 3rd arm which is 3 week epi then capecitabine (xeloda) tablets. (I think that's you too) I felt really tearful the first time- tears welling etc but I think it was just the fear of the unknown. Once the process started it was much better, I could chat to the nurse about it. The worst bit was fitting the cannula, uncomfortable rather than painful) but I have funny veins which seem to need soaking in very hot water beforehand- sitting with one arm in bucket of water up to my elbow actually cheered me up as it seemed so ridiculous! Once the cannula is in it's really easy, the steroids and anti sickness stuff went in first by drip, then they put a saline drip up to dilute the epi but put that in by hand with a large syringe directly into the cannula. I quite liked this as you can chat to the nurse and ask all the questions you need. I'm guessing the process will be the same with you. One thing to try and wangle is your blood test before each new chemo being as close to your chemo date as possible- mine was always on a Wednesday and my chemo would be on following Monday. Each time my white bllod cell count was too low on the Wednesday so I had to come in at 8.30 on Monday then wait. This last Monday I left at 5pm! My friend has bloods done on Monday and chemo Wednesday and her white blood cell count has always been high enough so she goes in for her appt on the Wednesday, drugs all ready and waiting and she's generally out in 3 hours. The extra two days for me is two days less for my white cells to build up and the nurse says even one day can make a difference.
I had last epi yesterday so am feeling bit rough today but not too bad- looking forward to capecitabine as my hair should come back and possibly side effects less (though you can't be sure of anything with bc) but at least no more cannulas as it's tablets- hurray. I wish you all the best and as soon as i start the capecitabine I will post some more as you will be heading that way too- oh one more thing (don't I go on) when I started epi it felt like it was never going to end- but it's amazing how quickly the time goes so hang on in there and if you do have problems make the medical staff aware asap- it's their job to look after- don't suffer in silence.
24-07-2007 01:54 PM
thought I would leave you a note on your thread as you made me feel welcome when I first started, I have been following your thread since I found out about myself and find hope for me as you seem so strong - so hold on in their gal! I have found that we all have our bad days not just because of our BC but as you say little things just trigger those tear ducts.....
I am sending you a big hug TC & thanx
24-07-2007 01:45 PM
Hi ya Kelly,
I have put a note on another thread - sorry, can't get use to finding my way round this site!! I am a bit of techno phobe!!!
The Sgt in the med centre was great, she was really helpful when my husband spoke to her. I have found an article in the JSP about them supplying two wigs - so I have a fitting on Friday (watch this space). The mood I have been in the last couple of days I am likely to burst into tears when trying them on, I am sure they are use to it.
I didn't go into work today as I have had a bad night - cried a lot, as the chemo start date gets nearer I find myself sinking lower - I am sure this is normal but I hate feeling like this. The boss was great - said he would see me whenever, I chose to go back to work so I suppose it is no big deal.
The Sgt in the med centre is ringing back to let us know how to pay it on JPA. The navy people hadn't heard about it but I don't suppose they would unless someone had asked.
Having a 'feeling sorry for myself' period and not liking it very much, hate feeling like this.
Anyway, enough of me - how are you feeling?? When does your treatment end? When do you think you will go back to work? That will be a shock to the system. I was off 5 weeks and went back last week - nightmare - it is like the whole world moved on, felt a bit like I didn't fit in anymore. Sure that will pass when I go back full time.
Thinking of you and sending lol,
23-07-2007 05:22 PM
Hope you had a good weekend. Really sorry to hear you're having a down day today. I was wondering if you have you had any joy with looking into getting the money back from the Navy for your scarves and stuff?
23-07-2007 02:12 PM
Thanks for your advise - I will take any at the moment. Am dreading next week and after the initial high of the results I am now finding that I am on the edge most days - ready to burst into either tears or screaming fits!! Today is a cry day. I am not normally an emotional person but I seem to be all over the place - expected I know but still hard to deal with.
I am definately giving the cap a go - I am dreading the hair thing. I have taken to making jokes about it but inside I feel like screaming.
I like your way of thinking Victoria - baldness is a badge of courage. I hope once it has happened (if it does) then I will be in a better state of mind to deal with it.
Thanks again girls, I will keep you informed, sending lol,
23-07-2007 11:43 AM
I'm also on arm 4 of the TACT 2 trial and have my 4th and last Epi on 24th before starting on the 4 cycles of Xeloda tablets. I haven't suffered too badly at all on this treatment apart from a couple of mouth ulcers and a bit of constipation - but as other ladies have said the hospital will give you something for this if needed. I have used the cold cap and still have a reasonable covering of hair. It has thinned somewhat with a handful coming out each time I comb it but there aren't any bald spots yet!! So from my experience I would certainly give the cold cap a try.
There are also some great hints and tips on this site regarding hair care should you choose to try the cold cap, such as drenching your hair in conditioner before the cold cap is put on and only washing your hair once a week etc
Best of luck.
23-07-2007 10:09 AM
I lost my hair after the second treatment. I'd originally said I'd try the cold cap treatment but decided not to mainly because of the extra amount of time you have to spend at Oncology before and after each treatment. Lots of women say that its certainly worth a go - so why not? It's probably worth a try at least. If you do lose your hair, although it was something that I was quite worried about, oddly enough it really doesn't worry me too much at all......baldness is a badge of courage!!!! Your first treatment is the day before my 4th (and last of the Epi's). Let me know how you are, I hope that this week doesn't drag too much - I expect you just want to get on with this now don't you?
lots of love Victoria xx
22-07-2007 09:25 PM
Keep looking for you on the site as we are about par with our treatment. Glad you are ok - hadn't heard from you and was getting worried. I don't have the same disease as you but I have pernicious anemia which is a B12 difficiency. I have monthly injections to combat my tiredness - great eh!! The onc has said they will take control of that during the chemo and rads as he will need to monitor my levels. We have more in common than we thought.
I will be thinking of you, keep in touch,
sending lol, Tracy xx
22-07-2007 09:22 PM
Thank you for replying. It is the first time I have heard of someone else on arm 4 - was starting to wonder if it really existed. I think you are right, I will need to take things easy in the afternoons - I hate sitting around but will take your advise.
So glad you are feeling ok. I think I can deal with the sickness and pain if I pop the pills!!! Did you lose your hair quickly? I am using the cold cap which I have been told is not pleasant, but I have to give it a go. It may not even work, but you know what - it can't be any worse than what we have already been through.
I will keep in touch and let you know how I get on, sending lol - Tracy xx
19-07-2007 09:12 PM
Thought I'd let you know I am on arm 4 of the trial and its going really well! My side effects have been minimal (no really!) and nothing that anti-sickness & painkillers haven't sorted out very quickly. It's great to read that you are so positive - I think that really helps. One bit of advice I took to heart and I'm glad I did was to rest in the afternoon if you can. This seems important especially as you are on treatment every 2 weeks for the Epi's and your body takes quite a bashing. I tried to do too much and then I thought I'd follow the advice and feel loads better in these last few weeks!
best of luck and keep yer pecker up!!