By LC

I was diagnosed grade 3 TNBC in Sept 2006, (age 50) had Mx and full axilliary clearance, but all nodes were clear. With this being deemed 'early BC' I was offered the opportunity of being on the TACT 2 trial. This compared
(1) treatment as usual - E-CMF (4x E at 3 weekly intervals the 4xCMF on 4 weekly cycle)
(2) accererated E-CMF, E at 2 weekly intervals with gcsf to boost the immunity. I've forgotten now if the CMF was shortened too
(3) E Capecitapine 4 E at 3 weekly and 4 cycles of Xeloda at 3 weekly cycles
(4) accelerated E- Capecitapine

I chose to be on the trial as all 3 treatment arms were shorter than treatment as usual, but I wish now someone had talked it all through with me. By the end of treatment, my motivation to get back to work was zilch and the fact that I could, on TAU been off longer felt like a missed opportunity.

I was also persuaded by the fact that Zeloda is used in secondary BC and my reasoning was that it might be better for primary BC. I do worry now that if it came back, that firstly it would indicate that Xeloda might not work second time round, but also whether I would be able to have it again and as I'm TN. I'm not sure what that leaves.

Anyway, I got Epirubicin 3 weekly then Zeloda 3 weekly (3rd arm in the trial)

I had the same weird but brief tinglings in my nether regions as others have described as the first bit of the infusion went in - I think this is the steroid. The actual Epi was OK and I went home clutching a sick bowl I didnt need at any time. The first night I was elated. couldnt sleep- I thought it was due to the belief I was on my way to wipe out the disease, I wish someone had warned me it was the steroids and that the 'down ' you get later really hits hard.

10 days in I felt ill and was in hospital for a week on IV antibiotics, with an infection. That was the real low point, not just because I was on a ward with really poorly people but because I felt so ill. The antibiotics made my stomach feel like a washing machine churning around, and gave me the runs (even though I wasnt eating). Unplugging the drip to rush to the loo was not easy. My hair started to go whilst I was there (incl pubic hair) and to add insult to injury, I had a period. (age 50 at the time, I've not had one since). I couldnt wash myself and when I was discharged I looked a real sight and smelt awful. They gave me gcsf injections in my stomach but didnt warn me about the excruciating backache it could cause until much later.

2 days after discharge, I was back for the next cycle. It was reduced from 150 to 120cc and I didnt have problems with that dose. I wasnt ever sick, but was generally off food. By the end of treatment, all food tasted like sawdust. I had a very dry mouth, and have since learned that there is something I could have been given for it. I lost weight (down to 46kg from 54 prior to BC). I used mouthwash provided by the hospital as saliva keeps the mouth clean and I didnt have any saliva. It has stained my teeth -I would have liked to have been warned. As its bright pink maybe they think we'll realise that. I also had to sort out my own solution to the terrible constipation - movicol was disgusting but did the trick.

The Epi knocked me for 6 energy wise. I dont know how people work whilst on chemo. Once on Xeloda this was less of a problem but still totally exhausted most of the time

I wish now I had not been on Xeloda. I still 'needed' the contact with the Chemo Unit I had during Epi. With Xeloda, I got bloods done Wed, collected tablets on Thursday then I was on my own. I know I could have rung the Unit, my BCNurse or the trials nurse with a specific problem, but it was just about feeling abandoned.

I found Xeloda hard. Whereas with Epi, once its in your system its in and any S/E are going to happen and have to be dealt with. On Xeloda, I had to struggle everyday, twice a day to take the bullets which were each day making me feel worse (even though the bigger picture was that they were helping save my life). I got foot and hand problems, so I found it hard to do anything to occupy myself. I love jigsaws and kindly people had given me loads, but I couldnt pick the pieces up. Towards the end of cycle 3 I had a flare up of rheumatoid arthritis and ended up on steroids which really helped but made me a little emotionally unstable.

Last cycle, I was on the countdown, 10 days to go, 9,8....At 6 I went into the Unit as I couldnt cope with the S/E and I'd heard Vit B6 may help. After the SHO and then the Registrar werent sure what to suggest, the trials nurse came and confidently told me it was my body saying I had had enough and to stop! completely, all done! I know I should have been delighted but I had got so far with no dose reduction, that I was really upset. I had a target and now she'd taken away the elation I was anticipating at getting through it. (and it meant going back to work a week earlier than I had calculated, which by then was becming important) . She said I'd had the 90 something % they aim for (I worked it out later and wasnt so sure). It seemed such an anticlimax.

The trouble is, I know now all the questions I should have asked but didnt know at the time, so this thread is, I hope, going to help people doing it now.

I'm nearly 4 years on and have my 6 month check up on Thursday. Some aches and pains I cant put down to the rheumatoid, but probably just age. Here's hoping.