Cool cap

Hi Zad,

So sorry you’re going through this.  There are so many questions at the start of treatment, and it often feels like an information and uncertainty overload.  I’ll try to give my experience of a few of your questions.  

Scalp cooling.  I used it and it was very effective, I kept around 75% of my hair I’d say with EC and Paclitaxol.  I had a thin bit on top and a wide parting by the end, but by 8 weeks post chemo you couldn’t really tell as the regrowth covers the scalp in the gaps.  It doesn’t work for everyone, but I know others who have also had excellent results.  I didn’t find it too bad at all, cold for the first 20 mins and then you stop noticing it.  It does add time to the chemo sessions though.  

Should you cut your hair?  It depends how long it is but generally yes if you’re using cooling.  You are aiming to reduce the tangling and brushing as well as the weight on the follicles.  But I’d recommend a bob, shoulder length or shorter depending on your style preference.  Don’t do what I did and cut it into a pixie, because the hair that doesn’t fall out keeps growing and pixies look like a shaggy mess with six months of no haircuts .  Love it now though.

On EC hair starts falling out around 3-4 weeks after the start of treatment, other regimes vary.  Side effects also vary a lot but on EC I felt generally ok, I worked part time through EC and was able to keep up with exercise and self care etc.  I’d be tired on the day, a bit tired and grotty days 2-3, really grotty days 4-5, and then gradually improve through to the next dose. A cycle is normally 21 days, although some people have “dose dense” regimes with 14 day cycles.  

Can’t help on the UC side I’m afraid, I was lucky to have good sick pay.  

really good luck with everything 

xx

I found cool caps useful a bit uncomfortable at first but OK after about 10mins and kept about 50 pc of hair..I did have a big hair fall out after 2nd ec which I think is usual so don't let it put you off if you decide to go for it . I found it does get more uncomfortable in later  treatments as the scalp gets more sensitive but it was manageable.  So glad I kept my hair .

Chemo can be different for everyone.  It didn't find it great myself but some people seem to be okay.  I found it was important to manage the symptoms with the meds they give you sickness / bowels etc 

Best of luck xx

Sorry you are going through this. It’s normal to have lots of questions.

I am only on day 12 of EC chemo so it’s still early days with no hair shedding as yet. I already had short hair but got it cut shorter last week, mainly because I can’t stand the idea of shedding longer hairs. I am cold capping at the moment. Uncomfortable at first but you soon get used to it. It has to go on 30 minutes before you start and stay on afterwards - 90 minutes for EC and 60 minutes for Paclitaxel.

I am finding EC ok, I have created a blog about it if you look in the blogs section. For me, days 6 and 7 weee the worst, these were the first couple of days in the phase where you have Filgastrim injections to boost white blood cell production.

I am retired from full time work but have a number of non-Exec board appointments and haven’t had any difficulty managing the work associated with them. I have been able to carry on running and have had a portacath fitted so I can swim once it’s fully healed. I have got a couple of wigs, mainly because I don’t particularly want to reveal my situation to some of the boards I am on. I am expecting them to be hot and itchy. 

EC is usually administered 3 weekly although some people have it 2-weekly. Paclitaxel (which I will have after the EC) is usually administered weekly. 

sorry, no experience of UC. 

Hi.I cold capped sucessfully with an even fine hair loss of about 20%.no patches. Be aware to ensure above the ears and full fringe hair line are tightly squeezed in and covered..a fringe line fell out and I rock a 2 layer fringe waiting regrowth to catch up.take painkillers an hour before . Take distractions for first 10 to 15 mins as it is hard to bear. I used crosswords..spotify and bag maltesers with black coffee treat time. You will be cold. Layer up clothes.blanket top and legs. A neck towel from home extra to conditioner towel needed. Socks definately better Woolley non slip pull on slippers .... its very bearable after 15 mins as you literally freeze and dont feel it. I cut my shoulder bob to long pixie. I regret that as i only had fine no weight hair before. If you have thick heavy hair it will strain roots so yes loose the length. Colouring or lack of being allowed to..is the worst as browns washed ginger and small continuing growth was grey .my 20 % new  hair is now thicker and has a curl and remaining fine haur is stronger..will hold a hairstyle roller brush...bonus.  never used my wig.   Good luck.you will get through it . And it actually seemed quick when i actually got started. Take the best anti sickness tablet they can offer again before the treatment.  Fruitellas..midget gems. Vimto. Water. Biscuits yoghurts. Do eat during chair time. It passes time and it helps ... chemo cried me off dairy as taste ruined.had a great appreciation for milk roll bread and jam ir cheap paste spread instead ! 

Hi I’m only going for my 2nd chemo tomorrow so haven’t lost hair as of yet tho I’m dreading it but have to go with it and remember they do have some lovely scarfs and hats was going to go for cold cap but changed my mind. X

Gosh, I don't think I will try the cold cap. Sounds troublesome