tact 2 trial - arm 1 people please

sorry brain a little mussy today, I am on the arm 1 of the tact 2 trial, I’ve just finished epi - hooray and wanted to know how others have dealt with the CMF???

how do you cope having it two weeks in a row - is it hard the second week?

what type of s/e???

thanks for any advice - feeling down as although epi finished the cmf part seems so long!!!

vicky

Hi Vicky

I am on arm 3 of the Tact trial, so had my epi accelerated, but then I went on to cmf over 4 weeks the same as you. I have found cmf has been a lot kinder to me. S/e’s have been quite mild a little heartburn, sore mouth, tiredness, but none of the fuzzy head I got on epi which for me was the worst. I had my next to last dose yesterday and feel fine. This is all on top of getting an infection 2 weeks ago and ending up in hospital on iv antibiotics for 5 days. I felt fine but my temp shot up to 38.5 and my neutrophils hit rock bottom 0.1. It has seemed a long time but I have felt a lot more normal in between treatments.

Hope it all goes fine for you.

Jackie xx

Hi,
Vicky,you must have just got in before the closing date, which was Dec 2008. I was also on arm one of the trial, which I nicknamed ‘the long country route’, from May 2008, followed by 15 rads and finished on New year’s eve. I am now on tablets for 5 years.
well done for battling your way through rotten epi, still it is one of the big cancer busters so a good one to have under your belt.
In my limited experience, if you found epi tough then cmf will seem much gentler. Others I know who had no side effects from epi struggled on cmf more. I would say the hardest part is the number of times you have to go back on this part and also the 28 day cycles mean that the end seems a way off when you start. In reality I was fine going in again on day 8 as the first dose did not affect me much. Can’t say I was happy about going though.It takes longer to administer as 3 drugs but still quite a quick one compared to others like TAC. Epi gave me dire constipation but cmf gave me the runs. I was not able to eat any fruit, veg or anything with fibre on or paid the price for days. So I was really pleased not to lose my focusing and had no days on the sofa (like on epi) but a lot more time in the loo and a restricted diet for most of it. I got a bit cheesed off thinking how many more to go but when I hit number 6, I felt on top of the world that I had got that far and was determined to go right to the end, so no regrets. You can also catch up with other tact2ers on the post 'starting epi/cmf 9 Oct buddies needed, also on this chemo thread.
Lots of luck and just shout if I can help
Lily x

thanks lily,

I think I did just get in on the trial, have been offered two other trials since!! its like a spam mailing list!! haha. the CMF part does seem so long as technically half way as done 4 cycles but with 8 cmf to do I don’t feel half way.

I got terrible tummy trouble on epi and just worked a way to cope. Plus I normally eat lots of fruit and veg so dreading the loose bottom!!! what did you eat- anything that worked will be helpful. I have 1st CMF on monday and we go and stay at my in laws as spi took me out for a few days and needed my kids looked after, am hoping that cmf does not do this so can be at home. Also regarding how they admin it - is it 3 separate doses? or just one all 3 drugs mixed together???

thanks for help, I have 20 rads due after this so another fun experience to look forward too!!!

vicky

Hi,
well i think you will be cheering when you reach rads, I know I was after 28 weeks on chemo. A walk in the park for most after chemo, just really disruptive going every day if you have much of a journey.Mine was 50 miles each day and with parking cost £150 in total! My experience on cmf does not seem to happen to everyone so you may be worrying for nothing. I struggled with my tubes all through so that was my weak spot as well as a very sore/dry mouth.

On the days straight after cmf I could only eat white bread, pasta, chicken and other meats if plain, eggs, rice and plain biscuits. I could not tolerate milk even in tea for a few days and not a hint of sauce, spicey things, fruit, veg, chocolate, etc. No-one has told me theirs was as bad, so no reason to think yours will be that bad either. On the positive side my neuts went very high on this diet. I started drinking ribena to get vit C and occasionally ate marmite for vit b. On day 8 my neuts and counts were higher each time, they seemed to like cmf!!! Weird. If I had another cmf due tomorrow (fingers crossed here)I wouldn’t be even bothering thinking about it apart from the cannula bit, although i had a port so it went in my chest each time. I know the first is always scarey and I had a bit of a reaction to the Cyclophosphamide. It can give you swimming pool nose, like water went up it. I had to have the dose in a bag/drip on the slowest setting and piriton as onc was worried the reaction could get worse. Usually you get all 3, one after the other with no gap. The methotrexate is yellow and a really tiny dose, it is also given to people with arthritis. The 5FU and the C are both clear and are much bigger doses. All are hand injected like epi. However, chemo brain just remembered there are 3 different ways to have cmf and some people have part in tablets. Each onc does it his/her own way.
Thinking of you on Monday and speak up if you get any discomfort on any of them as they can sort it out. On the whole I was told cmf is very well tolerated.
Good luck and keep chugging along one step at a time
Lily x

Thanks Lily,

I am a little scared for tomorrow but know I will have to just do it!!! I am suffering with pain in my scar at the moment - I can feel a little lump but not sure ifs its scar tissue - will speak to them tomorrow. plus I am normally mad over food but completely lost it - not bothered about eating and feeling sick and dizzy - great eh!!

anyway thanks for support and info.

Vicky