Just to say I have had some definite growth and am considering a trimette … although it is still (predictably) falling out up top. After a trimette it will look decidedy more bog brush - at the moment it has that surprised fluffed up baby look on top - totally out of control and all directions - with a lot of height - well verticle. Think I may postpone trimette until next week.
It was always very greasy and is now far drier (yippeeee) - does anyone know if it will stay like that ??? Assuming it stays at all …
Just the THOUGHT of a Jackson -style Afro almost makes it all worth it - wel not quite but it would be a MASSIVE compensation as my hair is naturally rubbishy thin stuff - if I could have a decent head of hair at the end of all this i will be truly over the moon!
Downstairs and leg hair are growing well … mmmmmm … pubic hair has always been strong - suppose I could always do an “Elton” as a last resort …on second thoughts - just the thought of being mucked about with further - no thanks
Hi everyone,
hope your weekend was good or getting better, depending on where you are in the cycle. Stig that is amazing, 60mph and still holding. How are you now? Was it worse this time? My you know what is gently sliding away. It is bad timing with me having my next dose on Tuesday. It is not enough time to decide whether it is thinning or going altogether! Well tomorrow may decide what I do. Washed it today and hardly any went at all but once dry started to just drift off in 4 and 5s. Fiz your hair sounds wonderfully mad! I wonder if your hair can come off in the cold cap??
Well celebrated Fathers Day and my daughter’s birthday today as there is no way I will eat out next weekend. It was much quieter too. Off for bloods tomorrow and then in on Tuesday for target practice with the port again!
Have a good week if you can
Lily x
I’m feeling fine and had a good weekend and enjoyed the garden and the pub! I felt less ill this time but it dragged on a day longer than I’d hoped . I think this is due to heartburn rather than just nausea so I’m going to ask for some tablets for that next time. Taste is just about back to normal as is sense of smell. I’ve been going out in my wig quite a lot and getting some nice compliments so I know it looks good especially when my younger daughter’s friend who’s 17 said how cool it was! Just getting used to wearing it but can’t yet cope with a full day, it’s a relief to take it off when I get home. I’ve got some lovely soft jersey pull on hats that have a type of wide hairband which are really comfortable and I wear these at home. In fact my younger daughter says she prefers me in them to my wig but, as I’ve still got hair at the front, they look OK at the moment but when I’m completely bald I don’t think they’ll look so good.
My hair seems to be behaving a bit like FixBiz’s. Fluffy and definitely growing, may also need a trimette next week on the bits that are there. They may fall out though as they were all exposed to the full FEC effects last time.
I know what you mean, Lily, about bad timing for the hair falling out. I kept myself awake just before my last treatment worrying about what to do but by the time the day came around my hair had made my mind up for me. Although the cold cap definitely worked it came out in places where it hadn’t been in contact with which would have been too obvious to disguise. I’d wait to see what happens by Tuesday and decide then. If it’s still OK I’d say do the cold cap again as it’s obviously working for you and you can hold off on the wig front. The up side to the cold cap not working is that your treatment time is less and you don’t get so cold. By the way when I had the cold cap they turned it off and left it on my head for about 20 mins after so that it didn’t pull any hairs out that had stuck to it. Also they sprayed on conditioner before putting it on which is meant to stop the hair sticking too much to the inner part.
Hope everyone has a good week and enjoys the nice weather. Good luck for Tues Lily if I’m not on here before hand.
Hi to everyone - i’m new to this thread. I started FEC on the 28/05 so heading into wk3 on wed. 9/7 to go before insult no.2 Now my biggest fear of all is the H word. I too had the cold cap and have been doing as advised. The hairdryer and straightener were packed away - and probably won’t see daylight for a few years !!
The chemo nurse wet my head and put conditioner on before putting the cold cap on - is that what they all do? She said it was so the scalp was cooled not the hair and to prevent the helmet being stuck to me for life!!
I had it on 45mins before infusion began and then kept it on for 2hrs after the epirubicin finished - is this standard?Does anyone get to keep it on for longer?
Has anybody tried the “Cillo” pillow?
I was also told to wash my hair only twice a week and not to rub too much - not getting a very good result on washing due to said technique - also look like a tramp with greasy hair (stunning!!)
Does anyone know if its Ok to wash it more if rubbing minimised? And could i just wet it (easier to put up in loose clip when wet)
I had long hair but day after chemo got it cut up to collarbone - didn’t find it traumatic as not blowdrying/straightening so just looks like a bad hair day to me everyday (its quite wavy but not in a nice way when left to its own devices) - but would really like to keep bad hair days for as long as possible. All suggestions greatly appreciated!
Hi
I seem to spending too much time looking at my H to see if it looks normal, after reading about others who said it looked strange just before it went! Still drifting gently past me and I am trying hard not to give it gentle tugs to test it. Fringe is hanging on well, which would be good as you say to stick out of hats. If it stays like this I will do the cold cap again. They do not put anything on my head like conditioner, just ram it on my head and pull up the chinstrap until I can’t speak!! I have it on 45 mins before treatment and 2 hours after the epi is in, same as you Mx. The epi takes about 20 mins so it is a lot of extra time. Might be longer this time as they do darts practice on my port. I have to lie on a bed this time!! What is a cillo pillow ? My hair is bad but I still prefer it on my head so hanging on to the last moment. Mine is chin length at the front now and cut shorter at the back, washed twice a week, timed for most embarassing days to look less like a grunger! I wash it as little as possible, comb/brush it really gently once a day, try not to keep touching it and just one quick wash with shampoo but no conditioner as more friction. Good luck Mx I am due my next dose in the morning, will keep you posted how it holds or not as is the case! Good luck with yours. Nicky glad you are on the up again.
Lily x
I lost all my hair after FEC and again after taxotere, but it grew back after a couple of months and was pretty much back to normal after a year or so.
But I’ve now lost it again after whole brain radio therapy and it’s showing no signs of returning!
Anyone out there with experience of this.
Many thanks,
Lynn
I’m probably repeating myself here but I had cold cap for 1st FEC, sprayed hair wet and sprayed on conditioner. I had it on for 1 hour before epi bit of FEC then 2 hours after plus an added bonus of 20 mins to stop my hair freezing to the cap when they took it off. Everything was fine for about 17 of the 21 days before the next one then things (ie hair) fell out! I may have jinxed myself as I really couldn’t cope with not washing my hair so washed it every day - serves me right. I used a gentle trickle from the shower and didn’t rub too much. I used a hairdryer on cold and gentle - by testing it on my hand it wasn’t any hotter or stronger than a warm breeze. My hair is still growing strong on the bits that the cold cap worked on and I think this is the main problem, contact is not always absolute and the bits that are missed do fall out. If you’re lucky that these don’t show or you can hide them I think you can get through without losing too much but mine was so obvious I chose not to continue. I don’t think you’ll know what to do until your next FEC as your hair may have made your mind up for you! If mine had stayed as it had been for most of the time I would have continued with the cold cap as it is less aggro than wearing wigs etc. But it wasn’t to be and the monk look is coming along nicely!
I don’t know if this is of any help but good luck with the H and the treatment.
Hi everyone and thanks for above comments. Lily its actually a chillow pillow - www.chillow.co.uk - its a cooling pad for want of a better description. A friend of mine met a guy who was post tx for bladder cancer (which he got as a result of chemicals as he is a printer - poor guy) anyway she commented on what a nice full head of hair he had (she had come on my 1st quest for wigs - the one and only time i broke down in public feeling i couldn’t cope - with the wig not the cancer!! - i know my priorities are a little topsy turvy!!) Anyway after he got over her unusual obsession with his hair and how he managed to hang on to it he told her he had used a chillow pillow for hot flushes he had from chemo and think that might have helped him with avoiding chemo induced alopecia. The website doesn’t suggest anything of a sort and i just wondered if anybody had used it. I was out in my friends back garden tonight and felt my head getting itchy - of course i thought it was all going to fall out immediately - previously spending an evening in the garden and developing an itchy head would have suggested there were plenty of midges around but oh no not now - it must mean there is something more sinister going on at my follicles - i have become obsessed - maybe it will be better for it to go so i stop with the OCD type checking of my hair!! Anyway otherwise really enjoying week 2 into week 3 - would like to crack on now and have chemo no.2 (not the sickness just the tx) but have 9/7 to go. lily good luck in the morning with next dose - hope you don’t feel too rubbish tom eve. Nicky i don’t blame you giving your hair a good ole wash - it feels disgusting not washing it more than twice a week - half of me says i should go and have it washed and blowdried one last time but too scared - want so bad to be in the 20% that hang on to it!! Lynn you’re really not getting much of a chance - are you? I was looking on sites re:hair loss - and although there is nothing they can do re: hair loss 2ndry to chemo there are loads of treatments and supplements to boost hair re-growth. have a look at the belgravia centre for hair loss (its near victoria station,london) (edited by moderator) - have you asked the oncologist or specialist nurse if this is common?
Hiya all - Im back - soz for the missing in action for a few days - tired from work and couldnt log on at work!! Damn passwords. Well Im now officially bald - yes Im saying the h word and Lily it didnt last for my night out - ratty had to go out with me! No-one noticed, in fact someone said my hair looked nice I couldnt believe it. I struggled with clumps falling out, casting more than the dog and my pillow is awful but yet washing it not much came out! I had it all shaved off today with a large wine, bit teary just before but by ek wish Id done it days before- spent so much time rubbing it, head very sore and searching for bald patches - I dont exactly look a picture mind and love my scarfts but still not brave enough to go out in them as think everyone will look! Ratting came to work today and I was told I look cheeky and girly and ditzy - arrrggh!!! Think it was the girly headband - yet some other people felt really awkward and said nothing. Dont think I could go commando mind but sitting here rubbing my millimetre bristles feels so much nicer than the last few days. gonna look for a part wig which I think is just the fringe side and backs without the top bit so I can wear it under scarfs and hats. ratty looks okay but its hard work all day.
Dennis’s are still in place touch wood - dreading them going more than the hair.
Anyhow just wanted to wish you Lily good look for tomorrow - brain not fully in gear but think its also good luck to Lolly?!?!
Everyone else - glad you are mainly doing okay - having my last glass of wine, before lots of water in prep for no.2 Wed - scared again already
xxx
It’s me again! Just catching up on different threads. I know what you mean about the H. Although I hate the fact I’m balding (it will all go this or next week I’m sure) it is so much nicer than dealing so delicately with your hair. Mine had become so ‘precious’ (in treating it rather than hanging on to it) that you daren’t sneeze in case it all fell off! It’s nice to get in the shower in the morning and have a good blast from the water rather than a pathetic trickle - very therapeutic. I’m the same as you about the wigs. They give me confidence to go out and not get stared at but they are a pain to wear and can’t wait to de-wig as soon as I get in the door at home. I’m back at work this week but just doing mornings as I can’t stand to wear wiggy all day. I have had some nice compliments though so I am pleased that I can get through the next few months looking absolutely fabulous - ha ha!
Eyebrows seem OK but I did think last night that the right Dennis was looking as if he’d lost a few stragglers - will watch out for them and stick them back on if they try to escape! When I had some electrolysis type treatment on the ole moustache a few years back the beautician said that the hairs on the left side of our body are always more difficult to get rid of than on the right. Don’t know if this is true but we could all end up a bit lop sided LOL.
Good luck to you and all having treatment this week - hope it all goes well.
Thanks Nicky - glad you are doing okay. Ive had a glass of wine and lots of water tonight in anticipation of tomorrow - im such a baby - terrified and its the sitting waiting for the effects to take hold. Ive finally persuaded my parents to go on their holiday on friday that they have had booked for a year - they will enjoy it a bit even though say they wont but Ive gotta stay strong for the next few days as dont want them going upset - not sure how Ill say bye to them withouth bubbling but gotta be strong!
Worried, off to have a look at my left dennis - did see some false ones on the web! more worred about the brows than the hair. I must admit after a crap few days with the hair I feel better with it off as my head was getting really sore - just cant cope with the wig long term!
xx
OK, managed to evade the Wig Police at hospital who seemed to be full of good intentions but that which was on offer was the Racquel Welch, (which on my head looked more like a Daphne Broon). Guess you have to be Scots to get the full meaning of this!
Turned down cold cap last time (#4 EC) and was honestly expecting the lot to fall out in week 2, but not yet.
But was back in beloved JockoLand last week and Sis got clippers out (after a lot of persuading). Am now down to a No 2 except for punky tuft at front and gentle Mohican stripe down back. Hooray, not bad for a middle-aged delinquent and at last I feel I can go “commando” after hiding thin streaks of hair under bandanas, wraps etc for a while.
can i ask has anybody had a swelling on their scalp? I have on on the back of my head - slightly tender on pressing - but not much. Not hot and not red so am doubting infection. I hope its related to hair rather than something else growing -there are no glands there - will go and speak to Dr but was hoping before they start prodding and poking at it that someone else has had similar and that it was something nice and simple as opposed to sinister
Hi
well dose 2 went fine, they even used the port at last so I was a happy bunny. Although I am shocked at the amount of H falling, apart from my WIDE parting no-one has noticed at all so went with the cold cap again. The first 5 minutes are horrid but it settled much quicker this time and then did not really notice it apart from when trying to eat because the chinstrap was so tight. Left a lot of H in the hat when they took it off though and a lovely scattering over my pillow this morning. Mmmmmmmmmmmmm not sure if I will be lucky. By the way my chemo unit say it saves hair for 60% of people. Maria how is the H holding up? Mine got a little itchy but the ladies on here who have a big loss have been talking about it actually hurting so I took itching as a good sign. Hope you are lucky. I have to say losing the Dennises is a problem, no sign at all with mine yet, in fact little H loss anywhere which makes me think I am still waiting for the big hit. I thought epi was the big one for losing hair but perhaps this is not the case, as I am having a mega big dose of it on the trial. Thinking of all of you, I have the lovely sun tanned look as the red face has come inearly this time. The bad bit for me usually starts on day 4 so enjoying the break until then except cannot sleep this time. weird last time I was like a log all the time. Lisa sorry the H has gone but sure you look the bees knees in ratty. lolly if you come on line, hope it wenrt well yesterday and not too sick this time, I read you are out about commando, wooo brave girl.
hugs
Lily x
Well more molting than usual but hanging in there - worried re:sunday as reports of day 17-21 have not sounded promising.
I went to BCN this am re: my new lump (scalp - back of head) not painful but felt solid - she agreed so sent me off to oncologist - was just a staff grade and he ended up asking me what i thought it could be!! Anyway he started talking MRI scan but said i felt perhaps an USS +/- FNA would probably suffice initially. He organised scan and went there for 2pm. Consultant there was baffled - said it appears to be 3 sebaceous cysts but abnormal thickening of walls with some shadow. Asked what he thought shadow to be - “debri” - so probably collection pre infection. Anyway he tried contacting my oncology friend who didn’t reply to air call so decided will leave until i see consultant oncologist next wed before 2nd FEC and see what he suggests - was just delighted it was fluid filled so def not likely to be something sinister. I bet you its from not scrubbing my head properly when washing and minimal brushing - there is no winning with the H game is there? But like yourself hanging in there.
Oh by the way -gradually getting the free brazilian - happy about that but then wonder does that mean head is next - probably. Have “look good - feel better” workshop booked for the 1st July so looking forward to their tips on the whole vanity side of things. Otherwise doing well so won’t complain - i had a good wk 2 and having a very good week 3 post chemo - normal except for awareness and in good form - will expect to raise the level of the Thames if/when H goes - but am thinking about it loads and hence building up to it - “face the fear and do it anyway” springs to mind. Might have a glass of wine tonight as have been very good in not drinking much - as worried i would miss signs of infection if over indulged and also aware that alcohol might lift spirits initially but acts as depressant t following day. Feel a lot more in control now so long may it last - well at least till FEC2 on Wed.
Hey i know what you mean about being like a log the 1st time - i felt like i’d been run over by a steam train. Hope your sleeping probs sort themselves soon - nothing worse than not getting ZZz’s - a good sleep is such a tonic and helps body heal. Hope you are coping well post no.2 otherwise - but at least you have wk2+3 on your doorstep. Good luck with Barnet - keep me posted
Hi
yes I saw that and felt very envious and hopeful at the same time. My parting gets wider each day. My hair looks terrible as it is so flat after the cold cap, will wash it tomorrow and see how much stays on. Last time I had my eyes shut the whole time I did it, not sure how that helped!! What a chicken. So about to get plucked I guess!! LOL. My hair started going just before my second dose and is still sliding away very gently, nothing big really to shock me but just this morning I noticed my pillow need demoulting for the first time. I wiould so like it to hold out as I have 2 more x epi and they say I should be ok on CFM for the last 4.
Most important , hey Maria so glad you scalp lump is looking good. No hair can make up for getting good news on lumps. Keep us posted and hope it continues to go well, hair would be a great bonus though. Have you got wiggies, etc just in case?
Take care
Lily x
Hiya
Ratty is a total pain, doesnt quite sit right with my glasses on and sits even lower without hair but slowly getting used to it - wen tot the shop on my own today and did feel like people were looking at me a bit. Dennis is still hanging in but looking little more straggly - only other hair that seems to have gone is the underarm - hoing and prayiung keep lashes and brows but will have to see. Off to bed soon as worried that sickness is going to hit in without the steriods. Didnt sleep to good either but at least I got lots of water down me. Have you checked out headcovers dot com. I had a hat on yesterday and was sooo obvious I was bald - they sell hair that just velcors into the inside of hats and false eyebrows!!!
Maria hope all goes well with the lump sounds promising. I get worried about the slightest niggle - my back and stomach aches but hoping its just aches and pains
Finally got chemo on Wed.It was a doddle.My mum was allowed to come in as it was my first session and made me feel like her 5 year old daughter instead of 50! The epi looked like red cola,so I tried to imagine I was having something sweet and nice put in.I used the cold cap and actually found it very comfortable as I always think that hospitals are too warm.
I was a bit queasy yesterday,but otherwise fine.today I feel very sick,pretty much like during pregnancy.
Maria- i think I probably have similar hair to you.Usully longish,thick & wavy .I had it cut to a short Posh style bob which is fine when I use straighteners etc,but looks crazy with no interventions! I’ve been using baby shampoo and allowing it to dry naturally,with just a wee gentle dry with the hairdryer.Will try to resist the OCD thingy with the hair and will try to only mess around with hair if I’m actually going out somewhere.
I’m wondering when the hunger pangs start.I’m quite happy to feel sick at the moment as I’ve already put on weight since I finished work and will try to avoid having a load of rubbish in the house when i start to get hungry.
Lanterna-I think with my current hair drying naturally I too may have achieved the Daphne Broon Look! All I need is a tartan skirt and a couple of fair isle sweaters to complete the look ad my figure seems to be moving in that directions Mmmm…we could start a new trend.How do we convince folk that Daphne Broon is soooo This Year?
Tricia
xxx
I have an extrmely exciting bulletin on the hair front …
in today’s debris in the bath (same quantity as usual - what’s new?) I found a FAT hair - my usual hair is very spindly (except the pubic hair -drat!) but this was a long (at least an inch!!!) FAT hair - straight …
defintely a head hair - rather than body …
my dream was thicker and curlier … but even just thicker would be brill …whoooopppeeee eh ???
love FizBix xxxxx
PS Am defintiely going for trimette now next week - I need a professional opinion!
