Just joined. I’m 41, live in Cornwall and was diagnosed with BC in March. I am about to have my fourth chemo session and have a couple of tips that may help. I have been using the cold cap too and have found how the nurse prepares the hair before hand relates to how much hair comes out afterwards. Those that wet it well with water and then COMB through the conditioner have resulted in very little hair falling out. Derriford Hospital’s guidelines for the cold cap is three to three and a half hours. I also use a bit of wadding between my forehead and the cap as the cold is getting a bit much. My hair has thinned but not so much anyone else would notice thankfully and I have left it growing. I used to dye my hair so it is interesting to see my natural colour again but as soon as I am allowed, I will be colouring it.
Another hint for anyone going through FEC - I have had terrible problems with the cyclophosphamide causing pain in my vein during administration. Despite asking the nurses to go very slowly, apart from one, my request fell on deaf ears, one even deciding it was better to go fast as it would be less of an irritant, left me in tears. I wrote to my Oncologist asking for the ‘human’ aspect to be removed and at the last session, gave it to me as an infusion. No pain at all! The nurse started the machine off on the slowest setting and was able to increase it to the fastest setting. I was still left with pink veins afterwards BUT and I don’t know if this is connected to changing how the cyclophophamide was administered but I have not been sick at all this time.
Well bit the bullet yesterday and went with the boys to see my hairdresser - had the lot shaved of - When it started dropping all over the kitchen floor something had to be done! The boys keep rubbing it like I’m a cat or dog but its still coming out although its a grade3 now so you cant really see all the hairs on the floor. My head will probably resemble a chicken drumstick once it all goes but never mind. Hows yours going Ali - hope its okay. Cried buckets on Friday night but was really brave yesterday as my hair had been quite long and was my favorite feature!!! not quite the same now.
I am due to start chemo in the next week or so (see Onc this Wednesday, so will know exact date then). I have quite long hair which is very thick and was wondering whether I should get it cut short, I am worried that the cold cap - if I can wear one - will not be as effective on long, thick hair. I would appreciate any advice!
Oh Julie. It’s so unfair. I have said all along…my boobs and my hair, my two best features are going!!! I know I will cry like a baby when/if it happens…I’m so sorry Julie, I only hope you feel better today.
Mine is still there - I just hope it can hold on for my brother in law’s wedding next weekend…please please!! I have used the cold cap, although here in Norwich I think we have a cheap version, not one of these electric ones. Did you use it or not I can’t remember?
We are off rock pooling and then to see family, gonna be a hot one…
Take care honey, speak soon
Ali
x
My hair is shoulder length and very thick, I am 2 weeks into my FEC with cold cap and it’s still hanging on…I was loathed to get mine cut, as firstly thought it was a rip off £30 for a haircut I didn’t want and secondly if I had it cut and then didn’t fall out I would be gutted. Also thought (and wiggy woman at hozzy said the same) there might be more chance of keeping some hair as it may just thin out - then I could do ponytail and baseball cap.
Everyone seems to be different and shedding at different stages too - it’s a hard one to decide. But I am leaving mine alone for now!!!
From what I gather I dont think thickness of hair etc matters. I only had my first chemo 6 days ago and I used the cold cap (we have the plug in type). I think it is all to do with how well the cap fits and how the hair is prepared etc. Of course, some people will have everything done right and still lose their hair - where some might just get a generalised thinning… The way I saw it is - at least I know I have tried, as it is always something I have said I would dread most about cancer/chemo - i.e. losing my hair. All is still well with my hair at the mo - but its early days yet - fingers crossed.
JulieG & Bestie, think you are at same stage as me, 2nd FEC next Fri?
My hair is thinning now, I’ve not done the cold cap as I writhe in pain drinking a slush puppy and have been told its the same sensation dragged out over a number of hours! I think you are remarkable to stand it. Am trying to hang on to the hair I’ve got for as long a possible although my kids seem intent on preventing me doing so.
I was lying out on the picnic blanket enjoying the sunshine yesterday and my 1 year old decided to stand on the end of my hair and then proceed to give me a bear hug and was left clutching handfuls of it. I think that’s natures way of telling me I’m on to a losing battle and I may a well get the clippers out sooner rather than later!!
Bestie, you might well be ok for next weekend as you’ve had the cold cap so you should hold onto it for a bit longer.
Am not dreading 2nd FEC as much as I was. I’ve found it’s like childbirth: when you’re in the middle of it you can’t ever contemplate doing it again but when you feel OK again the thought’s not quite so daunting.How about you ladies?
Likening chemo to childbirth is an interesing one… I opted only to have the 1 child!!! Still in the middle of feeling really really bad tho so might feel different next week.
I hope the sun is shining on you wherever you are this weekend. Julie, good on 'ya, I think you’ve done the right thing by getting your hair shaved off. I got my OH to shave mine to a No3 when we got home from my first Epi session and I did not regret it. My friends were horrified but the nurses at my chemo centre said it was prob the best thing to do.
I was still gutted when the rest of my hair came out but at least I had had time to ‘sort of’ get used to it. I cried buckets but this was short lived and I’m totally used to my baldie white egg head now.
To be honest, what was worse for me was getting my lovely long dark locks cut short. My bc nurse had advised me to get my hair cut a bit pre-chemo as she said it may be more painful (physically) if it started coming out when it was still really long. I chose to get my hair cut before I went into hosp for my mastectomy in march. My hairdresser was totally sympathetic, all the staff at the salon were sooooo nice to me as they all knew why I was doing it. We didn’t say a word whilst he was cutting my hair and I didn’t look up once! Thoughtfully, when he cut my long pony tail off he put it straight out the back so I didn’t have to see loads of hair on the floor. I only looked in the mirror briefly when he had finished. He understood that I couldn’t say ‘yeah, that looks lovely, thanks very much’. When we left I got my boyfriend to take me straight to the pub!!! I cried loads that day but thankfully I soon got used to my new look and was pleased he’d done such a good job.
Anyway, take care all and enjoy the rest of the weekend,
I am new here. I had been diagnosed out of the blue (guess it is a surprise for everybody) last month (july 4th), my mastectomy was done on the 11th (fast ugh). Now I am waiting to start chemo on the 14th of August - with a bit of luck I should be done before Xmas season. Doc says that I should be able to do 2 weeks cycles (8 cycles in all, 4 and 4), and probably no radio after (dancing the happy dance).
It really really bother me to loose my hair. I’ve cut it short (I was a long-locks redhead), and like Kelly, the hairdresser was SOOO lovely - it saddens me that I will not go back for some time! I don’t think I’ll bother with the coldcap, as the oncologist said that I’ll most likely loose them all anyway - but I’ll still ask the ob-gyn what she thinks. I don’t think I can stand the idea to shave though - at least for now. we’ll see in a little time, after starting the whole badabim badaboum. I want to keep working a little - maybe 20, 30%, just to keep busy, and it would be so much easier if I could keep some hair. I will also get a wig, as similar as possible to my current haircut (yeah, the one I did not want, that costed a little fortune, more in the 60 quids! but everybody says it looks good)…
I live in Switzerland… and I am glad a friend sent me this link. It feels good to be surounded! people get so freaked when I say I have BC…
I am ready for FEC 2, bring it on. I want to see some major shrinkage now. I have done a sneaky though and instead of Friday, booked it for Monday, so I can hopefully enjoy the family wedding without suffering the after effects of chemo.
Really pleased that I have Alison and JulieG at the same stage and same chemo as me - it is good to have people to share with.
Really tired tonight, we have done two beach days with the children this weekend and it has been brilliant, almost like we have been on holiday, but I need bed now.
Hair still hanging on…we’ll see what this week brings.
Love to all
Ali
x
Glad to hear so many of you have been enjoying the sunshine. Still haven’t got a date for my first chemo, but reading how all of you are coping with it, is like having people to help you along the way. Poppyetta, I’ve made a note of your tips, as I’m going to have FEC. Are you not allowed to colour your hair while you’re having chemo? I started to go grey early but, as soon as I did I started colouring it, so, even if I’m lucky enough to keep my hair, I’ll hate anyone seeing it grey. Sure it will make me look washed out and ill looking too, which is what we want to avoid.
Bestie, think you’ve made the right decision to postpone your chemo, and enjoy the wedding. It’s important to keep having fun.
I was advised to do as little to the hair as possible as it breaks off at the roots. After the session (had my fifth earlier today and so far, fingers crossed, have not been sick), I leave it with the conditioner the hospital put in for a couple of days before washing it. I think it would be wise to seek the advice of your nurse and a hairdresser with experience of cancer patients just to be sure.
Today I was given the fluorouracil and cyclophosphamide in drip format - much easier to bear. Unfortunately the epirubicin can not be given in this form. If you have sensitive veins which is making the treatment painful, it may be worth asking for this next time you see your Oncologist.
Glad you have managed to postpone FEC2 - sounds like the hair should be OK for the wedding. Hope you all have a fantastic time.
Mine’s going fast and feel like I look 100, although DH says I still look beautiful - but then he has to say that if he likes his tackle where it is!!!
Not looking forward to Friday, can see my veins disappearing by the day, it took her 3 goes at my 1st FEC, can’t imagine her having much luck by FEC 6.
Hope everyone’s enjoying the sun- while it lasts!!!
Glad your husband knows the correct form and when to say the appropriate thing!! Wishing you well for Friday…hope the vein thing is better for you this time.
Good luck to JulieG and Muddy too - I guess you are due your 2nd this week too…
Off to Dinosaur Park today…those pesky kids need their entertainment!!! Will catch up with you after the weekend to compare notes!!!
Love and hugs
Ali
x
The nurses have had problems getting the needle into my veins too but we found by putting my hand in a bucket of warm water for a few minutes really helped to dilate them but just as importantly, to make the skin softer for pushing the needle through.
May be worth trying this, especially if you are having problems already. Hope this helps. Good luck.
and I am glad a friend sent me this link. It feels good to be surounded! people get so freaked when I say I have BC…