Hi,
I just found out that I have arm one, which was the one that was going to cause me most problems due to the length of time. Typical eh! My pay cuts to half before I complete it and then I have radio after that. So I just wondered if anyone has eny experience of this arm or advice for me. I know some people started this in 2005. I am thinking of trying the cold cap for the epirubicin.Did it work for you?
Any info about how you got on or are getting on would be fab. I feel like I’m about to enter a new world!!
Lily x
Hi Lily
So are you on Epi and CMF? Do a search on here I am sure you will find others who were on same leg?
Sorry but I was told the cold cap wouldn’t work with the Epi so not to waste my time trying it.!!! I didn’t lose my hair till a few days before no 2 on Epi and decided to get it shaved of as my head hurt so much even when the wind blew.
So you will have Epi every 3 weeks then Lily?
xx its doable…
Hi
Thanks for a quick reply Paula, it is going round and round my head at the moment. Yes it is 4 injections of epi which are 3 weeks apart and then 4 cycles of CFM but each is made up of 2 injections given a week apart.I have been told to give the cold cap a try because they have found it works for some ? Don’t want to get my hopes up so getting a wig this weekend to be prepared and have 7 hats. Hope you are ok.
Lily X
I am fine Lily
Good for you give it a go no harm in trying. I have wig and hats too mind you bit hot a mo so glad to be at home and go commando…!!
Keep us posted Lily,
all the best
P x
hi lily
i’m on TACT arm 2
2 x epi so far
my hair started falling out gradually after the 2nd epi and i shaved it on the 4th day after the 2nd epi. ive still got eyebrows and eyelashes. fingers crossed.
after the first and second epi i was knackered for 2 days then started to recover and felt pretty normal in the 2nd week. howeveri am getting the immune system booster injection cos its arm 2. so i don’t know if that affects fatigue etc
good luck
helen
Good luck Lily with arm 1 of tact 2. i was very lucky and got arm 4. i am having last epi on Monday then tablets. Very tiring but can be done !!! i think I will be on half or no pay despite being on arm 4 as having 22 rads in sept - october. Last thing we all need to be worrying about is money when we have bc treatment. I turned down the cold cap and am nearly hairless. I was so worried before my hair came out but cutting it short really helped so not such a shock when it comes out. i have wigs and hats. Wigs v hot this weather but cotton hats v good and cool.
Rach xx
Hi Lily
Well, what you’ve got is probably a more gentle approach to chemo with enough time between treatments to recover. The second recovery week should be your very good one … could you not organise your work around that? So for instance, week one you crash out … week two possibly work … week three you definitely work? Do you have some flexibility around your work to enable this?
Like Paula, I was advised not to try the cold cap which was fine with me. I lost most of my hair in one evening after my second epi … handfuls of it just came out. I have a light covering of hair and many bald patches now which is fine … wigs and scarves work for me. I’ll be fascinated to know if the cold cap works for you and good luck with it.
So here’s to the arm of the trial you’re on … it might take longer but it’s a tried and tested treatment and hopefully will work well for you!
Take care!
Gill x
Hi Lily - I too am on arm 1 of the TACT 2 trial. Was disappointed at the time but in retrospect am relieved that I can take it all at a more ‘leisurely’ pace. As for work, I’m resigned to having to take a year out in order to get through the treatment - of course I am worried about the finances but am more worried about my health! Unfortunately, though, for me, the chemo has had to be postponed each time (I’ve had 3 epis so far and was due to have my last dose tomorrow) because my white blood cell count - and especially my neutrophils - have been too low, which, if I was on either arm 2 or 4, would have been offset by the booster injection the following day after chemo - but there are plenty of posts on here with advice/support on what to do/eat if your neutrophil count is too low for the chemo to be administered. I also understand that the second half of the treatment, i.e. the CMF, is so much easier than than the epirubicin, which, as everyone says, is itself ‘doable’, but do watch out for the mouth ulcers (Difflam oral rinse & Corsydl helps) and heartburn. You will be given anti-emetics to control the nausea/sickness as a matter of course.
If anything else comes to mind I’ll post again but do browse the posts for further advice (but read selectively).
I found the first dose the worst as I just didn’t know what to expect - but have begun to take them all in my stride now (or not quite - but certainly more bearable) and am surprised that I am almost half way through - and that I will, therefore, soon be back to work (to which I’m not looking forward!).
Do you have a start date at all?
Lots of love, Naz
Hi
Just wanted to say I was given Lansoprazole for heartburn and it worked a treat
Take Care
Mary
x
I’m not on a trial but am having Epi-CMF, had second Epi (of four) last Friday, will have CMF on day 1 and day 8 of the month for four months after the Epi, and rads after all the chemo. I have a port in my chest so no bruised veins, highly recommend it. I used the cold cap each time, the neoprene cap out of the freezer, not the plug-in type. I didn’t even think it felt especially cold, certainly not uncomfortable. My hair is thick, cut it to collar length before starting chemo and it still looks fairly normal. I’m only washing it twice a week, which I hate but I’m not going out so who cares? I comb it when I get up, a handful comes out in the comb (more when it’s wet) and I don’t touch it otherwise. It isn’t falling and stays there unless it’s pulled by hand or by comb. It’s certainly thinning but only I would notice that. I was told it works for half the patients that try it with Epi, but doesn’t work with Tax. I’ve had no sickness or nausea at all, just sleepy in the afternoons, and omeprazole works for heartburn. Lyn xxx
Hi Paula43, helenclare, rachy7,gilliang, naomifel,maryfrod, palomino98
Wow this is all music to my ears and I have just at least tripled my knowledge about the next step so thank you for sharing that with me. I went out and bought 2 more hats today, just cannot resist any hat that looks like it would be useful! Today they are 2 cotton hats that pull right over my ears and bought my hubby a red cowboy hat with white fur round it so that everyone looks at him instead!! He actually agreed to it, much to the regret of our teenage son who he was picking up from friends!!! The biggest laugh I have had for ages although I doubt he will be wearing it to commute tomorrow.
I would love to work a bit but I am a teacher and it is too disruptive to keep dipping in and out and was better for the kids that they covered me for a big stretch. Not sure I could face teenagers with a bald head or wig and standing up all day gets me even when well. You are right that health comes first and that should not be forgotten. I keep dreaming of a really nice holiday next year to make up for this year so that was one reason. Also psychologically I felt I could cope better if I knew I was at a certain stage as we go into the New Year. Naomifel hope your count goes up soon and you can get the next one over soon. I start chemo on 20 May but have to have an op on Monday to have a port put in first. I see the vascular surgeon tomorrow to find out more. Palomino I am shadowing your treatment exactly. Epi seems to affect people in very different ways, hope I am lucky.
Sweet dreams everyone and thank again
Lily x
Hi Lily
I am on the same as you, and I have had my last epi today. Yiphee.
Just to let you know that I returned to work at the beginning of April and am doing okay I just take everyday as it comes go home when I need to, rest when I need to I work for my local authority so they need to be. I aslo work in an open plan office with 25 other people.
I know it seems a long time (mine has got even longer as my 4th epi had to be deferred by 2 weeks so now looking at Sept for a finish on this. (Got the illness from my OH).
I lost my hair on the 3rd week after my 1st epi so had it shaved off. Dont like the wig so just wear bandana’s and walk round with out it.
You need to take 1 day at a time little steps to big hurdles is the saying.
Take care
Sharon
x
Hi everyone
Shazjan it is nice to hear about people getting through the same course, thanks. Well done for getting to the end of the epi part, that must be the start of a good feeling.
My BC nurse says if you get through that part your hair will be fine from CMF and most people on the arm have found it started growing back but not always as thick until later. Keep me posted. Once I get the wigs, I am going to get my hair cut short as it is long and may be traumatic when/if it goes. I really should just assume it will go. Palomino good to hear that you found the cold cap ok, the ones at my place look like cycle helmets,is that the same?
Bone scan tomorrow. Hmmmmm.
Best wishes
Lily x
Hi Lily, just wanted to say good luck with your bone scan tomorrow, hope it goes smoothly. The cold caps are neoprene helmets, and look a bit like thick swimming hats, or jockey caps. They come out of the freezer and go on for 30 minutes (with a timer beside me to alert the nurse), and another little cap pulled over the top to tighten the fit - very fetching, and I have photos for posterity! I have five caps per session, I think, should count more carefully! I really don’t find them unpleasantly cold. I was told my hair must be completely dry but some ladies here advise to put conditioner on - I don’t know if that’s with the plug-in helmets, but my oncology nurse rang their suppliers to check and they said it must be dry.
Hi everyone,
I am also on tact 2 trial arm 1. I had my first epi on tuesday and was ok, felt great yesterday but very tired today. I was a lttle dissapointed to be chosen for this arm too due to the lenghth of time but this is the standard chemo I would have been getting anyway if I hadn’t gone into the trial.
I am going shopping for a wig and bandanas on monday and also getting my new boob from hospital. Starting to wonder if i’m turning into the bionic woman!
Hi Palomino
has the insomnia got you tonight? I am being taken for the bone scan by my great friend who also has BC and is really excited at taking someone else for treatment for a change. Once they find a vein ok I will be fine, but had a few bad experiences lately . I must be having the other type of scalp cooling. They say I have to keep it on for 2 hours after the chemo and when my newly installed cat flap (port) is in , chemo only takes 30 mins. Wondering whether to bother but I really should at least try it I guess.
Thanks for your kind thoughts and best wishes to you
Lily