Breast Cancer Now Forum

Stelwah, I find my gut just closes down after chemo for 3-4 days, but eventually starts working again when its ready. The BCN recommended something like Dulcolax if desperate, but so far I have just waited for things to start up again. Plenty of water helps. ... View more

FEC2 was accompanied by IV Emend which has only just lessened the nausea slightly, particularly at night, but the metallic taste of FEC1 has been replaced by an even more foul slimey fatty taste that seems to coat the mouth and throat! You can't win... Unfortunately ginger doesn't help me at all, and I hate pineapple anyway, so it's back to the elderflower. Though coffee and tea are now drinkable again, so at least the caffeine might keep me from sleeping all day. ... View more

I tried the cold cap on FEC1 as I had a friend who used it years ago very successfully, and kept all her hair throughout chemo (though I don't know what regime she was on). The first session wasn't too uncomfortable - a severe headache for about 20mins was the worst part - but unfortunately before FEC 2 the hair started coming out in handfuls... so I didn't bother again. Makes the sessions shorter at least. But worth trying, as I'm sure it works for some. ... View more

I know we have to all face this Thing in our own way, but the way I approach it is not to think too far ahead. I think I'm probably a bit older than most of you (if on schedule, I shall have my last chemo session on my 69th birthday in May!) and I don't have a partner or any children. This means I don't have immediate family support but also don't have to face the problems of upsetting precious people and thinking of the future and how they may be affected. But going through chemo messes with the mind anyway, and just coping with the next few days is all I can concentrate on. I'm a bit of a control freak and being out of control of my situation is distinctly uncomfortable. As a pretty impatient person, and a great planner-ahead, this had been a steep learning curve.  I just want to stay as comfortable as possible - and as sane - until the summer: summers in the distant future will be a bonus! Love and strength to all. xx ... View more

So sorry, Sue - but off load all you want. We're here for you. xx ... View more

So glad you're feeling better, Mariecay. Yes, teenage spots are back - an enormous one on my forehead is just subsiding...   I washed my hair for the first time for a week last night and vast amounts came out, as expected. But am pleased to say that the shedding seems to be absolutely even and coverage, although thin, is still complete. Until the wind blows, I guess... So clippers postponed for another few days. ... View more

Thanks for that, Jaffacakes - haven't seen a doctor of any description since starting chemo but conversations/whines with long-suffering BCN seem to result in action as Emend was added to pre-chemo iv this time and twice as many anti-sickness pills supplied, so we'll see how it goes. I see the senior oncology nurse regularly (she gave the chemo this time and supervised the junior giving it last time). She is very brisk and no nonsense but answers all my questions and inspires more confidence than any doctor! She was the one who insisted I had to have a portacath right at the beginning before the veins started giving trouble, and I'm very grateful for that.   Feeling rather wobbly today but realised that I  haven't ingested any caffeine for over 24 hours so am now drinking a cup of coffee which I hope will perk things up a bit! Hair thinning in all sorts of strange places ...   Mariecay - do hope things are getting a bit easier for you. ... View more

Welcome, Bigpumpkin. I had my second FEC yesterday and am feverishly taking the tablets and keeping everything crossed for less nausea this time round! My BCN says that by the end of the 2nd cycle you should have a better idea of how things will go for the rest of the treatment, so watch this space... Good luck with the cold cap - hope it works for you. I tried it as it worked brilliantly for a friend some years ago, but no luck for me. I'm curious so many of you seem to be seeing your oncologist during treatment; haven't seen mine since he arranged the chemo course, and no one has proposed I should, so I just deal with the oncology staff, who seem very efficient and informed and answer all the questions I would have asked him. ... View more

Sue, I'm thinking of doing the same with my regular hairdresser (quiet time visit so as not to scare the regulars). Thank you for the tip re clean blades, I hadn't thought of that. I shall take my new wig along so at least I can leave his premises looking OK, and perhaps he can trim the fringe for me, as I think it's a bit too long.   I hooted at your description of trying to get rid of the hairs - I have a sort of scraping device I use on the furniture to get rid of cats hairs, and am now having to clean up after myself more than them! Just now I absentmindedly ran my hand through my hair (something I used to do regularly) and came away with a fistful... and I haven't dared to wash the hair for several days in case it all comes out at once! Just postponing the inevitable, I guess. Good luck to those trying the cold cap - I'm sure it will work for some, but I must admit I didn't miss the discomfort and the headache this morning. ... View more

As far as I can see, the only good to come out of this chemo thing will be if I manage to lose the half stone I've been trying to lose for the last 5 years! Like Sue, I'm only given 3 days worth of steroids each time and giving you an appetite is definitely not one of their side effects - I make myself eat something 4 times a day and that's it, even if its only soup, porridge and crumpets. Shall probably develop scurvy...   Do you remember the anticipation of going out for a nice meal with friends? The choosing of the menu, the arrival of the food on the table, the savouring of it? Seems a distant and fantastical memory.   As for medication: talk about getting blood out of a stone. Went in for FEC2 this morning and after all my resolutions told them what I'd experienced and what I wanted. They did give me Emend as IV before the chemo meds went in, but I've just been given exactly the same pills to take home: small amount of steroid and much larger amount of Metoclopramide. I only had 5 days worth last cycle and this time there's enough for 9 - and I shall take the lot! But if I still feel sick after that, they will hear from me...   Neutrophils were lowish - OK for the chemo to go ahead but I have to go back tomorrow for a blood boosting injection as I declined to administer it myself (would have to be really desperate to willingly stick a needle into any part of my anatomy!)   And, like others, Greatest Respect to those who get through this time also caring for families and even working. It's all I can do to cope with myself and the cats - and at the moment I'm moulting more than they are!   ... View more

I'm reading! I've always complained that I don't have enough time to read for pleasure, but when the legs are wobbly and you're feeling a bit feeble (and/or nauseous) curling up with a good book is great, with no guilty feelings that you should be doing something else. But I have a project: I've always bought books that look interesting but often they sit on the shelf unread, so I now have a sequence to work through. Current read is Wolf Hall (about Thomas Cromwell); to follow that is a biography of Thomas More, then the Wives of Henry VIII, a biography of Mary Tudor, and another of Elizabeth I. All books sitting unread on my shelves. After that, the next project is several (unread, of course) books on WWI, to go with topical programmes on the TV.   The only problem is staying awake... ... View more

Don't go near your (I'm sure, much loved) grandchild! You will barely have recovered from your initial surgery; and have a major operation coming up. With respect, does your family understand that you're not popping into hospital to have your bunions deal with?! After your mastectomy, you will probably be having further treatment, for which you need to be as fit as possible. Please put yourself first! Good luck. ... View more

Despite trying the cold cap with FEC1 my hair is now (day 19) falling out fast. I bought a nice wig yesterday and await my order from Anabandana, so am prepared, but suddenly realised I don't know what to do with this strange new physical feature of a bald head!   What do you do with it - wash it in the shower? With what - ordinary body wash or a special soap? Does it stay very sensitive (it is at the moment as the hair comes out)? Do you use a moisturizer on it?   Any advice from those who are already dealing with this would be very welcome. ... View more

I'm just approaching my 2nd dose of FEC and the metallic taste was awful, and lasted nearly 2 weeks. I tried adding things to water and ended up with elderflower cordial, which isn't too sweet but seems to cut through the metal. But it affects everything, doesn't it?! I've now got a long list of things which I used to like but won't try again until this is all over. Means the diet is somewhat limited, but I've found that regular food intake - even small amounts - actually helps with the nausea. And I've rediscovered the delights of toasted crumpets! ... View more

Dear Ladies, I feel really guilty at making such a fuss when some of you are having a much worse time nausea-wise! At least I haven't actually been sick. It's just the thought of the constant nausea - and limited food intake - going on for the next 15 weeks...   Let's hope we all get better relief as the treatment goes on. I guess the first cycle is a steep learning curve for us and for those treating us. It really is most encouraging to hear others' experiences and recommendations. I shall march off on Monday for FEC2 with what I hope are helpful suggestions and hope they will be acted on.   PS despite cold cap the hair started coming out this morning... Off to the wig shop this afternoon! ... View more

Jaffacakes, thank you. Do let me know if the new regime of meds helps you this time. I'm going in for the pre-chemo blood test on Sunday, so will try and speak to someone then, though I doubt that there will be a doctor around. But unless the hair starts falling out in handfuls over the weekend I shall continue with the cold cap on Monday, so there will be plenty of hanging around. If necessary I shall just stage a sit-in! ... View more

I was just thinking that, too! But here I am about to ask a question. I'm approaching the end of my first cycle and have been experiencing nausea for the full 3 weeks - particularly today. When I go in for FEC2 on Monday they will not be getting near my portacath until I have been told what improved sickness control they are proposing for the next cycle! I know it's not their fault; they had no means of knowing how I was going to react to the chemo  (very badly) and, going in in reasonable health and with a very positive attitude, I was astonished at how poorly I tolerated it.   Following useful suggestions from you lovely and supportive ladies, I am going to ask for ondansetron or emend. Having looked them up it seems as though you only take them for a limited period - and my nausea lasts all 3 weeks... Is that so? What is your experience, please? I am hoping that if the stuff works it should knock the nausea on the head for the duration of the cycle - is that the way it works? Anyone else experiencing prolonged nausea, and any useful tips? Ginger biscuits don't help, by the way, and the foul taste in the mouth is just producing a long list of things I can't eat at the moment. Hey ho - only 5 to go... ... View more

Hope you're feeling better this morning, Kirstykat. Lots of good advice from others, though I think suggestions for anti anxiety meds and taking friends along is a very personal decision. I have no family in London and my closest friends live 100s of miles away, so I am a solo flyer. And at the moment, despite bad side effects from the chemo, the really terrible days are few and the 'one day at a time' mantra is working for me. As a pretty impatient person it's been a steep learning curve!   I'm having FEC x6 with a grade 3 tumour successfully removed. Lymph nodes also all gone on the left side as they looked suspicious, but the lab results came back clear. Triple negative tumour, so chemo and radio the only options.   You don't have to wait to get a wig - I'm off to the wig shop on Friday, even though using the cold cap. It sounds as though the hair will at least thin even with the treatment, so you'll have the reassurance of knowing the wig's there whenever you need it. If you don't use the cold cap the hair won't fall out the day after - I think it's usually 1-5 weeks. Like everything with chemo, everyone reacts differently. I've had a pretty bad 3 weeks but am intending a determined discussion about improved anti-sickness meds and hoping - nay, expecting - a more comfortable 2nd cycle.   Let us know when you have another date for your chemo - we'll all be thinking of you. 🙂     ... View more

Kirstykat, what a horrible thing to happen to you. You gear yourself up to your first chemo session (I'm on my first cycle, so can sympathise) and then something totally unexpected happens like that...   But while you're at home trying to work out what to do next, why not compare the options carefully before commiting to the chemo again (presuming that's what you decide to do).   You say you were going to have treatment at your local community hospital. Is that more important than potentially losing your hair? Is it easy to get to from your home? As treatment continues a shorter journey might be very important. Are the staff friendly and supportive? - very important. I live in London so have no idea what a local community hospital might be like, but it sounds better than an enormous NHS place if the treatment is equally good.   I'm trying the cold cap but found the first session very uncomfortable and if it doesn't work for me I will stop it at the first sign of thinning and embrace baldness and wigs!   Having to rethink everything at the last minute must have been appalling. Have a good night's sleep (if possible) and make your decision tomorrow morning. Good luck, and keep in touch with us all - plenty of support here.   ... View more

Hi Suzidel, I have a portacath as I had all the lymph nodes removed one side so they can't use that arm. It goes completely under the skin (just under the collar bone) so when the incision is healed there's nothing to see except a little lump. They go into it with a special needle for the chemo. The op to place it was under a general, but a light one with very quick recovery. I went into hospital by bus in the morning and came home in a taxi early evening! I'm only on cycle 1 so have only one experience of them using it for the chemo infusion, but that was very straightforward. But the procedure doesn't seem to be offered everywhere - cost, I guess, unless there are some nasty dark secret perils I haven't heard of yet... Good luck, anyway. ... View more