I've been using the cold cap and so far had 3x docetaxel (T) and 2xFEC (still got 1 more to go).I have always had long thick wavy hair that I washed and straightened every day so the thought of losing it really upset me. Despite always feeling the cold normally I decided I had to try it and if it didn't work at least I'd had a go. I'm pleased to say that I still have virtually all of my hair left although it has thinned at the back but this is under the longer lengths of hair and not noticable, I think this is because the cold cap doesnt reach that far down. There is also a very small area on the top that thinned very slightly after 2nd docetaxel but it was because the cap wasn't on tight enough and that has started filling in and is about 3cm long now.
I had it cut into a shortish bob and dyed back to its natural colour before I started chemo. (I didn't want to end up with dark roots).
I use Simple shampoo and conditioner which is ph neutral (quite cheap from Wilkinsons and Home Bargains).I was told by the nurse not to use baby shampoo as it is not ph neutral.
I wet my hair thoroughly in the sink at the hospital and also take a small spray bottle to wet any bits that aren't completely wet then gently comb with a wide toothed comband then completely smother hair in conditioner. (I take my own conditioner).
I take a couple of paracetamol as soon as I arrive at the unit and take a flask with a hot drink to have ready as soon as they put the cap on. I also take a charged laptop so I can watch a favourite DVD (if you know the plot well you can dip in and out when the nurses come to talk/change drip/administer drugs etc without losing the thread of story). I busied myself setting this up in the first 15 mins of cold cap and concentrating on that helped to take my mind of the cold. This time is the worst but it does wear off and I it found bearable.
Because I always feel the cold I wear a thermal vest, skiing thermals under my jeans,thermal socks, a fleece jacket and take my own fleece blanket (some of the other ladies take fleecy dressing gowns) and a flask so I can have a hot drink whenever I want, rather than having to wait for the tea trolley to come round.
I take a hat to go home in and then wash my hair gently in tepid water after 48 hours. I use conditioner and dry it with the hair dryer on the cold setting. I use a round brush to hold the ends in place while I dry it but I don't pull the brush through my hair often. (At first I just let it dry naturally but it just made me feel a mess, doing the above and treating it gently made me feel better and because it looked like normal, more determined to keep going with the CC). I use a silk pillowcase and only comb it once a day.
I wash it twice a week and hair does shed but when I washed it everyday pre chemo I always had a certain amount of hair coming out so I don't worry too much as I'm probably only losing a little bit more than normal.
When I saw my consultant she said as I had kept my hair through the docetaxel I would probably keep it through the est of my treatment. There are some statistics on the Paxman cold cap website showing the percentages of people who have kept their hair during FEC and docetaxel that I found useful.
Although I know it doesn't work for everyone I thought it was worth a try. I went into it with an open mind. I prepared for losing my hair by getting a wig, hats and scarves, I also watched videos on utube of how to tie scarves and practised a bit.I prepared to lose my hair and thought that if I kept any that would be a bonus.
I hope that this might help a little bit and I know everyone's experience is different, even if it doesn't work for you it will grow back afterwards. It might also help to look at the posts of the amazing people on the forums who have lost theirs or decided to not use the CC who are strong supportive people with positive attitudes.
I hope it works for you,
... View more
Haven't been on for a while so have spent a while reading all your posts. Had my first chemo on Fri 7th so am now day 12. I really didn't feel well for the first week due to SEs. Completely wiped out, really sensitive teeth, sore mouth, acne (as bad as when I was a teenager - was even given same cream as my teenage daughter! and it has worked a treat), thrush, heartburn. Everyday seemed to bring something new. It has all settled down a lot now and the only thing is the taste changes. Has anyone else struggled with them? Everything tastes wierd!Most savoury food tastes bitter, I can't drink tea or coffee and grilled or fried foods completely turn my stomach. My sense of smell seems to have gone into overdrive. Apart from the taste thing I'm feeling quite well. Although I know the effects are cummulative, I am feeling positive and beginning to think I can get through this. I think waiting for it to start was the worst bit so far.
Hi Supachick - I too am on the ARTemis trial and am having 3x docetaxel (Taxotere) + Avastin followed by 1 X FEC + Avastin then 2x FEC. I occasionally get migraines, just the visual aura type and really wanted to keep my hair so had the cold cap anyway, but I completely understand why you wouldn't want to aggravate your migraines.
Good luck to everyone due for chemo before Christmas. Hope your SEs will be minimal.
... View more
I'm really sorry you have had to join us and I completely understand where you are.
I was diagnosed 3 weeks ago with a tumour of 23mm x 28mm with an area of malignant calcification directly behind. In total both bits together are 58mm (from the front to the back of the breast) and I am only an A cup size. I hadn't even felt a lump in my breast only a lump in my armpit, which turned out to be my lymph node (which also showed positive for cancer cells). It means I will have to have a mastectomy and lymph node removal after I have had chemo which I am staring on Friday. This doesn't mean yours will be though. Sometimes our imagination when we don't know what's happening is worse than the reality
I know the waiting between appointments is dreadful as we're always worrying about what we will be told but Revcat is right when you know exactly what is happening and you have dates for treatment to start it feels more manageable. You are not alone and the people on the forums on this site really help you to feel that. None of my close friends of my age have gone through this and it has really helped to talk and ask questions on the forums.
I hope you get answers swiftly and that it is good news. Keep your chin up.
... View more
Haven't been on site for a couple of days so have just spent last half hour catching up with what you have all been up to. Happy Birthday! Marie and Caroline 60, hope you had a good one and were treated to lots of nice things from your loved ones.
Marie and Shawshankredemption - I hope you are still feeling ok after your chemo yesterday, your posts have alayed some of my fears about starting chemo next week.
Black Swan - Have you had your first chemo yet?I really feel for you not knowing a firm date. It's hard enough to get your head together when you do know exactly when it's starting.
Cressida - I'm so sorry you are going through chemo again. You do sound like a strong person though so I'm sure you'll get through it.
Jellytot83 - Thanks for the tips on chemo and your blog. I have bookmarked it and am sure I'll refer back to it when I need to.
I have been to have my flu jab and had a MUGA (heart scan) prior to starting my chemo, and results were fine. Am still not sure which chemo I'm starting on as am going to be part of a trial. I may be starting on Docetaxel and Avastin or may start with Epirubicin and cyclophosphomide. My oncologist has also agreed to give me a CT scan on Tuesday- she isn't expecting it to show up anything and hopefully it will put my mind at rest that it hasn't spread anywhere else. I've also made an appointment to have my long thick hair cut into a short bob. Am hoping this will allow a really good contact with the cold cap.
Hope everyone else is keeping cheerful,
... View more
I was diagnosed with BC just over a week ago. I have been told I will need a mastectomy, lymph node clearance, chemotherapy, radiotherapy and then I would like reconstructive surgery. I decided to go for chemo first as it means the time I will be without a breast will be shorter. It has been such a shock. What makes it even harder is my mum has stage 4 BC with secondary mets in her brain and they are giving her palliative care - up until March she was still working (at 76) and completely well. Anyway, that's enough feeling sorry for myself. I'd love to join your group as you all sound so supportive and it would be good to have others to talk to who are going through the same thing.
Is anyone else going to use the cold cap? I thought I would give it a go as my brother's mum in law used it and kept her hair although it did thin a bit. I am looking for ph neutral shampoo and conditioner as my chemo nurse recommended using one. Does anyone have any suggestions?
... View more