I have only just got my treatment plan and don't see my pre-start team until December. No idea yet when treatment will start, so investigating a few things.
I went to website of cold cap manufacturers (it was in my treatment documents) and they say average chemo is 2 1/2 hour session. I have been told that my 3 1/2 hour session will be increased to 5 1/2 hours if I have a cold cap. Anyone else having that sort of length of chemo session? Also, I tried website's prediction for hair loss and although I did not have my dosages to enter in their profile (for more reliable prediction) I did have the combination of the drugs to fill in. Even so, they said only 50% chance of no hair loss - and they make these caps!. It seems a lot of extra suffering for only a 50-50 chance - of retaining some thinned out hair. Until you have had a chemo session you don't know how hard that is going to be in itself either. Any further comments or tips in helping me make that decision about cold cap, please? Like the rest of us, I would like to keep my hair - dehumanising otherwise.
Hi ladies, I started my chemo on 9th August 2018. My chemotherapy regime is 3EC and 12 paxlitaxol . I have done the 3 EC and 3 pax and pleased to say I still have a full head of hair!!!! Apparently it is the EC that really gets your hair, they call this the red devil .The paxlitaxol causes hair loss but not as much as this is a lower dose.
My tips for cold capping is too be really fussy when getting the cap fitted(i am using the Pac man cold cap, I bring in flannels to pack the cap out where it does not fit. Take paracetamol half hour before y our treatment , this helps reduce the brain freeze in the first 10 minutes. Please be assured it is bearable coming from a girl that has a really . Low pain threshold.I do not put any heat on my hair and I wash it once a week with ordinary shampoo. I did buy all expensive shampoo and conditioners at first buttbecause there is hardly anything g in them my hair looked greasy after washing. I got my hair cut shoulder length as I was told less weight on hair follicles and easier to manage when combing. I also use a wide tooth comb and not brush.
My hair has gone quite thin but you cannot notice notice. I shedded quite a bit on my first chemo around day 20, I lost a bit on my neck line, this was becAuse the cap was not fitted right down at the back. Please don't let shedding put you off, this is norrmal and stick with it.
By using the cold cap and being g lucky that it is working I feel like it has give me some control back and i still look like myself.
Please give it a go it is definitely worth it, also women who cold cap with me are all doing really well with their hair.
I hope this helps , good luck everyone xXxX
Can i ask the girls who've used the cc how you keep your ears warm? I can't stand my ears being cold! I will have to start chemo after my op and was thinking of trying cc as feel I'm losing enough besides my hair. Been looking online but it's all ear muffs on a band which probably wouldn't fit over the cap.
I was devastated to be told I would probably lose my gorgeous funky purple hair when I started chemo so I decided to definitely try the cold cap to keep my hair as much as possible for me and the kids. The first treatment was hard, and it left me with a migraine for the full first week on top of the steroid side effects but worth it. Sadly when I went back for my second treatment the chemo nurse told me I had lost more hair in the 3 weeks than some people do over the whole chemo regime - without the cold cap!! She said it clearly wasnt working for me and agreed wiht my husband that it wasnt worth the extra discomfort and time. Sad for me but some people just do not get a positive result.
Seeing what some people here are saying I would say give it a go on your first chemo and see if it works ....if you are one of the lucky ones it is one thing less for you to feel crappy about!!
This is an interesting solution! I already went through this, and I had a completely different approach to this situation. I cut off my long hair under a short haircut, which for a long time I wanted but was afraid to do. I changed my hair color (unusual) for cool result by Hair Color Changer and a little time went like a freak, but then I liked it! Now, of course, I grow long hair, but the color is not standard, I still paint the ends of my hair.
Hi, I'm cold capping and (touch wood) don't seem to have lost any hair yet. I've done 3 FEC and 2 T, so my last one is in about ten days time. I loved my hair so much, it was long and blonde and had extensions. They had to come out, clearly and my fabulous hairdresser trimmed it and did a kind of a dark to blonde colour through it before I started, as you're not supposed to have colour treatments etc during chemo and we thought that would hide any roots etc if they did grow throw.
I'm not going to lie, that first 20 minutes the first time was hell, I can understand why people give up at that point, but after 20 minutes it just becomes numb really. And cold. My amazing friend Jayne who comes with me for mine bought me a plug in fleece, like an electric blanket and it is amazing. Each time cold capping the hard first part seems to get easier and quicker to. Deep breathing and saying f**k a lot seems to help.
Yes, don't forget your wooly hat to go home in.
And now the part you're not supposed to do. I wash my hair, blow dry it and straighten it every single day. Yes, that's right. Every single day. Just like I did pre-chemo.Because I didn't just want to keep my hair, I wanted to wear it how I wanted to wear it. In fact if I had to go to work (iIm a teacher) looking like I do when get up in the morning, I'd prefer to wear a wig.
So it could all still go this time (half way between cycle 5 and 6) or it could still go next time, but even if it does I looked good and felt good this far through.
Those bastard treacherous eyelashes are a different matter entirely. I'm learning to love my falsies though,
Hope all goes well for you xxxx
Sending you hugs as I recognise the feeling of what is happening and is it just better to shave it off now.
I found that I lost more hair just before the next round of chemotherapy so likely nothing to do with you styling your hair.
I also used the cold cap and have hair after the 6 sesssions but it has thinned greatly especially in the last two sessions but i also had extra medication due to an infection that slso had hair loss as a side effect.
I kept going with the cold cap as my young girls were struggling with the shorter hair so trying to prevent the no hair look for as long as possible.
I had long hair and as soon as it started to drop out I cut it to shoudler length but after it thinning so much I have had a short bob and considering even shorter due to all the different lengths of regrowth.
So after my expereince I am not sure the cold cap was worth it as my hair dresser wants to cut it short now.
if you do go for all off it does grow back quickly and within 2 months (after last session) other ladies appear to have a short hair cut.
Good luck with the rest of your treatment
Just about to start 4 ac. I will try the cold cap. Any tips. Did anyone else have ac and cold cap?
There are so many questions and concerns on this thread about the cold cappiing. i have stage triple positive breast cancer and had to go through 12 rounds of Taxol and currently having the Herceptin every 3 weeks.
I was more stressed about losing my hair than losing a breast. I was determined to keep my hair. I did my research and founf that cold capping was for me. I was completely comitted to the process. I chose the Penguin cold caps bt the elastogels are good too. Whatever you can afford is the ones to get. THere are important things to know when cold capping. I kept 80% of my hair. It just thinned, no bald spots. NObody could tell but me when my hair was wet. I am going to give some advice and tips for you all as this is what i did for optimal results.
It;s is very inportant to use orgaic shampoo without any parabens and sulfates. try to find a clear shampoo without added color. I also used Rogaine for women and take a Hair/Skin and Nail vitamin. Do not wash hair 2-3 days before chemotherapy and only use COOL water on hair. I waited 3 days AFTER chemo to wash again. Very important to wash hair on the 3rd day to remove residual chemo residue from the scalp. Use conditioner and use a the widest tooth comb you can find to comb through in the shower with conditioner. Do not use a hair dryer, curling iron or any heat tools. Do not use a hair brush. Wide tooth comb only. Do not put hair in ponytail, use clips head bands. Nothing to pull or put stress on hair. No hats or head bands. Do not get head hot as the scalp needs to stay cool all the time, (even working out or being in the sun getting head warm is not good) THink cool all the time. Use a satin pillowcase as this does not pull hair. DO not cut more than 2 inches during chemo and wait 6 months after chemo for any color. It is important to keep this up for 6-8 weeks AFTER your last chemotherapy infusion. THe hair will remain delicate for awhile. Treat it well and it will be reward you back with a head of beautiful hair. Research good shampoos. Don;t go cheap here, Get the best you can afford. I used Juice Beauty shampoo and conditioners. Got it from amazon. Read the labels and make sure its chemical free and organic. Hope this information helps ladies. I am 6 weeks out from chemo and get compliments on my hair. I am so glad I did the cold capping. Cancer took my breasts but it was not going to take my hair!! Wish you all the best in health and beautiful hair! 🙂
I think I posted in wrong place before. I have secondary bone and liver mets. I have my second weekly chemo with cold cap today. I dont know how long before eyebrows will disappear but wonder if anyone knows of a good and sensitive tatoo place in London who would do eyebrows.
I've also used the paxman cold cap. Had chemo 4 last week of fecx 6. Mine has thinned quite a bit and I have a balding bit on top (bit like an old man), but I still have lots of hair! I did lose loads during cycle 2 but It's definitely worth trying and I'm glad I did. I think mine has gone on top because the cap is probably not a great fit and my first session the machine wasn't working and I only realised 15 mins after them putting it on. So they took it all off to check the cap and machine. I then think they rushed putting it back on. At a glance no one would know as fringe, back and sides are all pretty good. I think it has made a huge difference to my confidence and mental state to keep my hair. I also wash it once a week with gentle shampoo and conditioner, I ash it in the shower with a jug using warm water. i have curly hair so the only time I use a comb is when I've washed it, the rest of the time I fluff it with my fingers. The first 5-10 mins are the worst and I take paracetemol 30-60 mins before treatment. Just 🤞🏻That I don't lose too much more.
I was diagnosed with stage 3 invasive ductal carincoma breast cancer in October and I’m 23. Currently on Taxol and Carboplatin every week for 9 weeks then Epirubicin & Cyclophosphamide 3 weekly after. One of the first things I said to the doctor after he told me my diagnosis was what about my hair whilst crying and laughing because I couldn’t quite believe what he had told me. The nurse mentioned the cold cap which I was already aware of as my mother had breast cancer 10 years ago.
Ive had the paxman cold cap every time I’ve had Chemo for the last 3 treatments and I haven’t lost any hair. It isn’t as bad as people think it is, it’s cold to begin with but just make sure you have paracetamol about 30 mins before and you’ll be fine. Put lots of water and condtioner on it and you’ll find you have icicles once it comes off haha, it’s very numb for a little while so make sure you bring a hat.
I don’t wash my hair half as much anymore because I’m terrified of losing it and when I do wash it (which is tops twice a week now) I only dry my front bits with cold air and let the rest dry naturally. When it starts to feel greasy I just put dry shampoo on it and put it up. If your hair is important to you definitely go for the cold cap, it’s tolerable! It’s just like your head being in a cold pool. I tell myself it’s a spa treatment to cope! Another thing I’ve found helps me is making sure I still do my make up to go for treatment, I just think it makes you feel better and positive. I hope this has helped anyone, we can get through this!!!! 💪🏼💪🏼💪🏼 Positive vibes everyone Xxx
Hi. I start my first ever chemo 21november. Every week 1.5 hours for 3months. I am told it’s a low dose
its all new to me. I am still not accepting it’s me we’re talking about. I just had a masectomy.
I want to use the cold cap. I will have my layers cut slightly shorter as I have shoulder length long layered hair
i have been told I might not loose my hair with it been low dose. It want to take precautions
what is TEC please
Thank you for sharing your stories and best of luck with your treatment!
I have a family member who started chemotherapy less than two weeks ago.She is now considering using the cooling cap,but fears that it won't have much of an effect since she didn't use it in her first session.Her hair hasn't yet thinned more than usual though.Does anyone have any information about this? I know that the elasto gel caps website says that the caps shouldn't be used after the first course of chemotherapy,but I would like to hear from your experiences 🙂
hi there-I just finished using the Penguin Cold caps thru 4 rounds of TC infusions--I have kept 85-90 % of my hair!- am 2 weeks out from last round and am still shedding about 25-30 strands a day but no widened part, no scalp showing, and no clumps--I look normal to myself though hair feels thinner and totally normal to everyone else. I usually flat iron my shoulder length hair but now just touch up ends and let hair dry ntaurally- is naturally wavy and it looks fuller. the 7 hour capping process each time was long and grueling but so worth it- my daughter was my partner and really stepped up- I highly recommend capping and highly recommend Penguin--you rent the caps- it is expensive--495/month but you can rent used ones for 300 /month- you have to ask about this- they dont offer up front.=Go for it!