Hi lollo-I was talking to a lady at the onc clinc last week who told me she’d done 5 cold caps and lost 60 percent of her hair. It looked pretty good to me. To be honest I’m like you and think it could be a matter of time but I’m ok with that. Let me know how you get on x
p.s sorry to hear of your experience inshock-I met a couple of women at the LGFB course who had similar experiences and felt v relieved to stop. You have to do whats right for you
My underarm hair has disappeared, leg hair still growing, unfortunately forarms are smooth on the elbow side and there is another area that is moulting rather rapidly!!Bought myself another hat today from M & S
marksandspencer.com/Pure-Cotton-Corduroy-Baker-Boy/dp/B002NC77AE?i
I’m thinking how I could dress it up a little.
I have just been looking at hats on e-bay, there are so many and well worth a look. Just bid on 2 that are only a couple of quid each. Happy hat hunting!
Ooh good luck with the ebay bids Niknak321 -and the baker boy hat is fab. You might want something extra under it - I’m really feeiing the cold on my head now I am completely bald. I know I’ve said it before but cheapie beechfield morfs are perfect under hats.
Nicolax
Hi In Shock - low fat & TNBC. I’m so sorry. it annoys the hell out of me when I see unsupported assertions on the web. Here’s one source - but I kept finding it all over the place as something to watch.
http://www.breastcancer.org/tips/nutrition/ask\_expert/2007\_04/question\_21.jsp
I’ve been knitting hats - Ravelry.com has loads of free patterns.
Today I just ache - I’m trying to say thank you bone marrow for working so hard, but it feels really rotten. Am hoping this will pass soon.
Hi Sept Ladies
I had originally made a decision not to come onto the BCC Forum as historically when I have done internet searches for medical issues I only found negative stuff (I guess on the basis that if you don’t have a problem with something you don’t post about it, if you get what I mean). Anyway, clearly I have changed my mind and here I am.
I was diagnosed with Grade 2 BC on 4 July (my other half’s and my 20 anniversary, and can I add that he is a marvel and AMAZINGLY supportive). I had to have a liver cyst de-roofed on 25 June (which was happily described by my Liver Surgeon as ‘absolutely benign’) and as a result was much more aware of how my body was looking as I needed to look at the three (small) incision sites daily to check that they were OK. While doing this on the Thurday after my surgery I noticed puckering in my right breast, went to my GP the next day and, as they say, the rest is history.
I had MX and SNB on 30 July and had a temporary implant, which is being slowly inflated (next pumping session tomorrow). Unfotunately the SNB came back positive, so I had Level 2 nodes removed on 13 August, all of which were clear. So I am now relying on the Level 3 nodes and anything else that would care to address that issue. I am doing my BCC and The Haven exercises religiously as I want to be able to do as much as I possibly can in the way of activity post BC).
I had my first Chemo on 14 September, next one is due on 5 October. I am due to have 4 x EC and then either 4 x Taxol fortnightly, or 12 x Taxol weekly. The Taxol regime will depend on whether my hair is surviving or not as I am not allowed to use the cold cap if I do 4 x Taxol as I am told it takes too long. I was dreading my first cycle, but was the Oncology Unit Staff were really great and supportive. I had a portacath fitted the week before my first cycle and was strangly encouraged that the anaesthetist had to play ‘hunt the vein’ in my left hand (and of corse the only one they could use because of the ANC) as I had been in two minds about having one fitted. The Port definitely made the whole process easier and for the EC is much quicker than using a cannula as they can push the drugs through quicker. The Unit give me a cream to apply to the area over the Port 30 mins prior to getting to the centre (so just before I leave home) and by the time I get there the skin is numb so all I feel is the pressure of the needle being inserted. They take my bloods from it too and as it is under the skin, now that the incision has scarred over, there is no real after care needed (other than another operation after the Chemo to have it removed, by which time I am hoping I will have better veins in my left arm).
So far I have not felt too bad, in fact a lot better than I thought I would. I was bouncing off the walls for the first three/four days, thanks to the steroids, and took Boots Sleepeaze to help sleep, which was a great help. Then the tiredness kicked in, so at least I did not need the Sleepeaze (which can be addictive, even though they are ‘over the counter’). The worst day was the first Thursday, so day 7, when I felt absolutely shattered. I felt really strange, like my body was fighting fit, but my head would not let it be. I was determined to do as much as I could, but did not quite manage everything I had planned. By the following evening I was definitely coming up for air again, and this week I have felt fine.
I had a vile taste in my mouth for about 8 or 9 days, that I can only describe as tasting like the smell of burnt plastic, but fortunately it has not effected what I can or feel like eating.
As you will have gathered, I am trying the cold cap on the basis that it can’t do any harm and gives me a sense of control (even if it does not work, at least I will have tried). I have a wig ‘just in case’, which is as near as I could get to my normal style, and have a few scarves and a hat on stand-by.
I am determined to get through this as well as I can and to not put too much weight on. My Oncologist tells me that all her BC patients put weight on, which to me is a red rag to a bull. I am taking as much exercise as I can, mostly on my other half’s exersice bike in the garage, so I am not looking forward to the cold weather, but I think it is important for a number of reasons, a) it helps keep me fit, b) exercise is good for the lymphatic system, c) the endorphins will help to keep me positive, d) it keeps the blood flowing in my legs (I had a DVT about five years ago), to list but a few.
I am not always positive about this journey that we are all having to follow, but am trying to be as positive as I can as much as I can. Here’s hoping.
Ladies, I am really sorry that we are all having to go through this, but I am sure that between us we will get through it. Here’s to us and our time together.
PS sorry this is rather a long post!
Hi Lizzlecat - glad you decide to join in. I know what you mean about avoiding the internet - it’s a mixed bag to say the least. However, this thread is very supportive so far and hopefully it will stay a good place to drop by. We can help to buoy each other up through the difficult times, as well as share ways we’ve dealt with various SEs etc. I’m glad to hear you are getting on well with the portacath. I wish I’d had mine fitted already, unfortunately there is a waiting list. I have a large amount of brusing on my hand and wrist from chemo 2 and worry that I could be in a similar position to sukiem with chemo being delayed if they don’t fit it for the next one.
Glad to hear it’s not been too bad for you so far.
Nicolax
Hello, I am another one for the September chemo. I had my first of 6 FEC on 21st Sept, so Day 10 and I am feeling OK today. I was originally diagnosed with 7mm ductal , but after WLE and SNB found this was 21mm and also a lobular cancer of 28mm. Luckily lymph nodes were clear. Had Oncotype DX test which confirmed that chemotherapy was the best option for me. Most of the time I feel very positive but really dreading the hair loss. I have 9 year old twins, my daughter has taken everything in her stride, my son not quite so wel, but both are having trouble accepting the fact I will lose my hair, I think the thought of me dropping them off at school in hats, scarves or wigs fills them with dread!! I asked them to chose some hats and they all have ears - and they said the ones I had picked looked stupid… !! I guess it is just one more unknown and once it happens it will be easier to cope with than the thougt of it. Good luck to everyone.
Hi Lizzlecat, sorry you’ve had to join us! Your description is spot on about the taste in the mouth, I know exactly what you mean although I don’t think I would have thought of that way of describing it!
keygeatures, I have won my first hat for £2.99, here it is
ebay.co.uk/itm/110956093819?ssPageName=STRK:MEWNX:IT&_trksid=p3984.m1439.l2648
You’re right I will need something under the Baker Boy style hats to keep the back of your neck warm on a chilly day.
Not sure I know what a beechfield morf is at this moment in time, I will have to google!
It a miserable day here which is not helping my mood about my hair coming out and my rather shocking new appearance in the mirror. Nevermind the only way to look at this is that it is not forever and tomorrow is another day, there is nothing we can do that will change what has happened so however hard it might feel at times we just need to get on with our lives and make the most of every opportunity.
Nicola x
I’m liking the morf thingies, just bought a couple of them from Amazon.
Welcome to the thread Lizzlecat and Jess28-hope you find it as helpful as I have.
Sorry to hear about the delay in fitting your port Nicola, they managed to fit me in for a PICC tomorrow. I too am covered in bruises so empathise. I thought the article you linked re: fasting was fascinating so I’m going to give it a try.
Hi Niknak321 - glad you like the morfs - think they need to change the name, but so much cheaper than buffs. It’s crumby when the weather is rubbish, but at least it gives us a good reason to be wearing headwear. Congrats on the ebay win. Sometimes when they take a bad photo it’s a great opportunity to get things for a song.
Hi Jess28 and welcome to the thread - I don’t have kids so can only imagine how dealing with their reactions must be. Hats with ears? Sounds like they grew up reading ‘Where the wild things are’. It’s a shame they don’t do workshops where kids can come along too - because I’m sure they would like to meet children their own age in a similar position. Makes it all a lot more normal and less ‘odd one out’.
Maybe you could put together a collage of nice pictures of ladies in hats together - or do a Pinterest. If they saw lots of people wear hats - not just because of cancer - it might feel less daunting and weird.
First of all, welcome to Jess and Lizzlecat. Sorry you needed to join, but you will find a lot of support and useful information.
I have been holding off with this post - not wanting to tempt fate. This is day 12 for me, and things are so much better than last time. I had one really bad night with tummy problems a few days in, but since then it’s just been low level nausea (my fault because I chose not to take the optional anti-sickness meds) and uncomfortable stomach. I also lost skin on top palate, but don’t appear to have thrush or mouth ulcers. I had the beginnings of an ulcer, and a cut finger after a week and they healed quickly despite my thinking they wouldn’t due to neutropenia (which I had last time). And my temperature has been higher - last cycle it was low to mid 35, and this time round it’s hovering round the 36 mark. So, a pleasant surprise, as I was told I’m likely to get lots of SEs and to expect them to be worse as I get further in to the chemo.
Keyfeatures - thanks for the link to fasting. Did you try it both cycles? I’m going to give it a go, as I ate very little on day 1 this time round and wonder if this might have helped me feel better.
Fiona - thanks for the link to the knitting website.
Nicola - beechfield morfs are like buffs. They cost £3.50 including postage from eBay, and they’re very versatile. I already have one, and intend to get more in a variety of colours.
I bought a wig on the Internet, but have only worn it once. I didn’t like the fact that it felt so tight on my head. I’m getting to grips with turban tying, despite having said I would not wear scarves as it was too obvious you were having chemo. In the end, I’ve bought some barbie hair to wear under a hat. It’s not quite the same as my hair was, but is cheap, comfortable and passes for real hair from a distance. The chemo unit staff thought I was using the cold cap and using my bandana to cover thinning top! Anyway, I got mine from wigs4u and it comes on a baseball cap. As it’s detachable, you can sew the looped side of Velcro into your ordinary headwear and attach it to that. Only downside for me is that it’s lots of tiny plaits and I consider myself a little too long in the tooth for the hairstyle. Should be great for you younger ladies, though.
sdfmeg - I attempted fasting both times but didn’t do it so correctly the first time I think. This was partly due to my husband who kept nagging me to eat - so I had a lot more of the thin soup and fruit than the allowed 200 cals I think - including a big bowl of it when I got back from chemo. This time I didn’t even have the thin soup on chemo day - only food was a banana in the morning (had a yoga class and felt I needed something), water, herbal tea, a vitamin sachet and a Purdeys energy drink. Day before and day after I had small amounts of thin soup, banana and water and herbal teas again.
I think because I’m doing so well my husband will be more supportive of the fasting next time. He’s from a culture where they always try to feed you up if you are ill - and I’m quite small anyway.
Good morning everyone! I’m glad that more of the September starters have found this thread. I really agree with the comments above that it is a nice place to hang out, supportive and positive. It cheered me up a lot to read the new comments this morning.
I’m very interested in the idea of fasting, but it will have to wait until I move on to the FEC part of my chemo as I must take the prescribed steroids with food at 8am and 12 noon. I wonder if doing a mini fast from noon to 8 am would make a difference?
I think today might be a fast day anyway - I absolutely cannot face food at the moment.
This morning I started tugging on my head hair out of curiosity and it is holding fast at the moment. I watched X factor last night and I really like the shaved design at the side of Jade’s head. It kind of looked like crop circles. I was wondering if I could have something like that all over? I’ll never get the chance to get away with a style like that again.
I’m in a lot of pain today, but I’ve asked for advice on that in a separate post. I want to keep my posts on here as optimistic as I can.
Have a great day ladies and wish me luck - I get the results of my SNLB today at 2.30.
posted on behalf of new user laura
Hi all,
I’ve used this forum for advice alot over the last year, but this is my first ever comment. I wanted to say good luck to all of you undergoing chemo, and tell you a bit about my own experience in case it helps.
I had my chemo in Dec-March (FEC-T), and remember the fear well - especially about hair loss and whether I’d become weak and sickly. I would totally recommend either the cold cap or cutting your hair really short. I did neither! But I know someone for whom the cold cap worked a treat. And I cut my hair to shoulder length & started losing it after the second round, which freaked me out because I really felt like a cancer patient seeing all this hair come out in clumps, leaving me patchy - so getting it short would definitely have helped pyschologically.
On the up side, Primark is great for scarves, and I had a really good wig (one of the cheapest ones) which looked remarkably like my own hair. It is a bit odd to wear to begin with and lovely to whip of after a long day, but - when contending with all this other rubbish - they can make you feel more like your normal self when looking in the mirror. And if someone offers to buy you anything nice, I’d recommend a cashmere beanie and a really nice blanket - I used both all the way through chemo.
As for side effects - the anti nausea medicine is great. I puked once and didn’t feel sick at all. The downside is that it can make you really hungry (if you’re on FEC-T, you get double steroids on ‘T’ - so even more hungry!). But I found that it went in a bit of a cycle so started to plan for the hunger by stocking up on snacks like puffed rice for eating at midnight! Odd I know, but a good snack for just staving off hunger when you’re really tired.
I’d also recommend not eating during the actual treatment if it’s not too long. This is because it can make you go off certain foods. I haven’t eaten marmite since my December treatment! If you need to eat, I’d say go for bland comfort food.
And if you get constipation, flaxseed is brilliant. I ate a bowl of porridge with flaxseed, fruit and nuts for breakfast (and still do), and found it worked a treat!
Also, don’t forget the upsides (there have to be some dammit!). Not washing hair for months has been great and saved a bit of money. And when your hair starts growing back it doesn’t need to be styled or cut, so more savings there! A bit pathetic I know, but there have to be some things to be glad about.
So, good luck all of you - make sure you have some great box sets to watch too, and (if poss.) people to make you food so you don’t have to cook.
Laura
Welcome Jess28, sorry I missed your post earlier, I must be hard with younger kids, mine are all in teens and twenties so it’s been pretty good although my youngest was sitting some of her GCSE’s in the summer when everything was kicking off and we had a few bad weeks with her. Also when they are older they can fend for themselves, well some of the time.
The hair loss thing is a big issue for me too, but you find a way to cope, we are resourceful.
I’ve been thinking about Christmas and tinsel, threaded through my turban, I like a bit of bling!!
No razor blades, no shaving foam, no shampoo and conditioner, no mousse, no hairspray, no haircuts, over the course of a year I reckon that could amount to quite a bit of money, for some nice treats ladies.
Sorry I’m a bit mad, you may have worked that out already, I embarrass my kids regularly but they love me hehe!!!
Trying out a red turban and black and white leopard print scarf today, trying to get used to the idea.
Fiona508 - with the steroids, although you need a bit of food to protect the stomach you don’t need to have them with a full meal. You could just have half or a whole banana - or a bit of toast. The fasting that is recommended allows 200 cals a day. Don’t worry about posting less positive posts here - we are all going to have good and bad days. Hopefully we’ll be able to help each other through when it’s not going so well too. I hope the pain gets better for you.
Nicolax
Hi girls, thanks for the morfs info, sooo much cheaper than the buffs. Still can’t get used to my reflection, need to have something on my head. Not sure if it’s denial or not letting that relfection beat me!! Do you know what I mean?
Head feels like cotton wool again - getting fed up with it.
I’ve been reading stuff on the internet about dairy too, haven’t had much energy to check it all out but I did find this american website canceractive.com/. It is supposed to be an amalgm of research based info on cancer. Someone might find it useful but I haven’t checked it out re the research!!
I’m finding it increasingly difficult to find something I can drink that tastes okay. I’m normally a big water drinker but it tastes awful since starting chemo. My taste buds changed after about day 10 last time but what do I do now???