Hi everyone
Saw onc yesterday and will be starting a course of FEC chemotherapy shortly for my lung and liver secs. Was given information sheet which does not sound too bad. Three weekly intervals - said first week I would feel quite low but that second and third week should be OK. Is anyone else on this treatment - would love to hear from you.
They also said ‘cold cap’ was available to try to cut down or stop hair loss but don’t much like the sound of it. You have to sit there for around two hours and it is very cold and heavy - can lead to headache, so I don’t think I will be bothering with that. They said it may not work anyway or my hair may come out in clumps.
Trixie
Hi Trixie,
Glad you have your treatment sorted out, you feel more positive once you have started it.
I had to stop taking herceptin in December after only three cycles as it was affecting my heart. My onc. said we are in a different arena now so I started back on it last Monday.
I did p.m. you earlier in the week but think I possibly didn`t do it quite right!!
Good luck with the treatment, I pray you have few side effects!!
Take care,
Love,
Janx
Hi Trixie
I have just started chemo and herceptin for my liver mets last week, not the same chemo as you though mine is taxotere. I used the cold cap and it wasn’t that bad, it was a bit cold on your head but after a couple of minutes it goes numb and you can’t feel it. The only thing is time! You have to wear it for 1/2 an hour before your treatment, during treatment then 2 hours afterwards.
Good luck with your treatment xxx
Hi Trixie I had FEC this time last year when my mets and a local recurrence were diagnosed so I know what it’s like. I gave the cold cap a go on the 1st one and it is cold and uncomfortable but I may have stuck with it had I not lost a big bit of hair just before my 2nd FEC. I couldn’t disguise where it had gone so decided not to use the cold cap after, the bonus was not being in hospital so long. However it has worked for other ladies and I think it would have worked for me if all of it had been in close contact with my head despite it being rammed on!
Onto FEC. It is as you have been told. I came out of the depths after about day 5, felt ‘normal’ from about day 7 and then was OK until the next one. I took all the anti sickness tablet they gave me which helped and I didn’t feel as sick or nauseous as I thought I would, but still felt very tired, especially after the 1st one. Your taste buds will change and my sense of smell was really acute to begin with but these also wore off as I felt better. It is certainly do-able and I even managed to go to work in between sessions, on the ‘good’ days once I’d got passed the mid point when your immune system is at it’s lowest. I had problems with my neutrophil count and had 2 sessions postponed so had to have GCSF (or GSCF, can’t remember) injections to boost my wbc. I gradually lost all my hair but not in one go. I didn’t shave it off but had it cut really short by my daughter after the 2nd session and wore a wig when I went out but comfy jersey hats etc indoors. Please ask if you want any more info from me. You may get some other info from the chemotherapy part of the forum, there’s bound to be someone on FEC as it’s one of the more common regimes. Good luck and hope it does the trick. By the way I had scans at the mid point and when finished and my recurrence shrunk considerably (80% ish) and my bone mets showed signs of healing - but this could have been from the bonestrengtheners I was (am) on.
Nicky x
Hi Trixie,
I had f.e.c. in 2004 it wasn’t that bad for me in between 1st and second dose I planned our wedding and we had a perfect day. My family were all really impressed at my energy levels the 4th and 5th around the 3rd day I was hot tired and dizzy but a couple of days in bed and I was fine. It gave really good shrinkage and I managed 18 months before having to go back on chemo. Because I had lost all my hair and it had just grown back I chose capecitabine tablet chemo had that for 2 years until last Feb and then Taxol/avastin. Now on chemo break willing hair to grow back for the third time! I never bother with cold cap as I think chemo is barbaric enough!
Good luck with your treatment keep us all posted it does help you get through it, having a good maon on here. Well it has helped me.
Love Debsxxx
Hi Trixie
I had FEC after my primary dx 6 1/2 years ago. Felt more sick than I have done on other chemos since but the anti nausea tablets worked ok. Had bad indigestion as well and took something for that (lanzoprazole). I did do the cold cap with the FEC but swore I would never do it again (and haven’t). It preserved some of my hair but it was such a total mess (really dry etc) I covered it up with a scarf or wig anyway. Others have done better with it though - think it probably comes down to how much losing your hair matters to you.
As others have said, the first few days are the worse. I had a horrible metallic taste in my mouth the first cycle as well and continually sucked peppermints. I continued to work part time the second and third weeks and felt relatively normal, though got tired.
Good luck with the treatment - hope it works well and that the side effects are manageable.
Kay x
Hi Trixie
I had my first cycle if FEC on 24th April. Last week I was quite tired and off my food but no real nausea or vomiting, the anti-emetics these days are really good. This week I have felt almost back to normal - so far so good. I have tried the cold cap but have a wig ready as back up! When will your first chemo session be? Hope that things go well for you.
ShelleyAnn
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Hi Trixie,
I found out yesterday that i’m about to start FEC in a couple of weeks so am going through all the same thoughts as you!
My biggest worry is about my hair and whether to try the cold cap or not. I have really long thick hair and have been told that for the cold cap to work i’ll need to have it cut to chin length and thinned so the cap can fit as tightly to my head. I just wish i knew whether this will work or not! Has anyone out there used it and it worked?
I know everyone says oh your hair will grow back - & i know that but
to me this is the worse bit.
Hope all you ladies are getting on okay out there.
Suz
x
Hi Suz
I am giving the cold cap a go! I didn’t find it painful or that uncomfortable at all but I know its not like that for some. Ive only had chemo once so far so I can’t really tell if its going to work or not as I think its usually after your second or third when your hair would fall out. I had very long hair like you and have reluctantly had it cut just above the shoulder line. I think if I can keep my hair it will make me feel more normal if you know what I mean.
I was in two minds to begin with whether to give it a go or not but I am glad I am now.
Good luck with your treatment xx
Hi Suz
I’ve had 3 EC chemos and used the cold cap each time. My oncologist suggested I split the treatment over 2 days as I was so anxious about losing my hair, so I have half dose on two consecutive days. I am delighted to say that my hair is still really good - it’s just below my shoulders and although thinned a bit, no-one but me can tell. The cold cap isn’t unpleasant at all - the only drawback I suppose is wearing it for half an hour before and 2 hours after chemo, but a small price to pay for me.
Hope this helps.
Janet
Hi ladies,
Thanks for the updates KerryRose & JanetD. Was really useful to know that the cold cap was not that bad and seems to be working for you both so far.
Its interesting to know that you both haven’t had your hair cut short and you have used the cold cap, as the oncologist at my hospital said i’d need to have it cut to chin length. Was anything said to you before hand about cutting it shorter?
All the best with your treatments.
Suz
Hi Suz
My nurse just said to have it cut just above my shoulder. I think the shorter you have it cut the more chance of it staying in your head. I think its partly to do with the weight of your hair and partly to do with the cold cap getting to your scalp through the hair.
Now I have had it cut to just above my shoulder I am over it and I am actually going to get it cut to chin length before my next dose.
My nurse also said to only wash it once a week, brush it only once a day and not to use any heat styling - hair dryer!
So my hair basically looks a complete mess but its still there!
xx
Hi Suz,
I had 6 rounds of FEC 6 years ago and used the cold cap. I had my hair cut into a bob (it was shoulder length) but that was only to make it look thicker as the treatment prgressed. The only advice I was given was to reduce the number of times I washed it. The cold cap isn’t pleasant but it is bareable and it worked for me. My hair thinned but I kept a good covering of hair all over so much so that people couldn’t tell at all.
Good luck.
Sue x
Hi Trixie
Just wondering how your treatment is going. I had my second round of FEC on Friday 15th with my second go with the cold cap. So far minimal hair loss and I don’t find the actual wearing of it too bad. Apart from feeling tired and a bit picky about food for a few days I am generally feeling well, although due to the nature of my work I have been signed off by the GP for the next 3 months. I would be interested to hear how your FEC is going?
Best wishes
ShelleyAnn
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