I am 63 and have just completed my treatment of a double mastectomy followed by 6 sessions of ECT chemotherapy every 3 weeks and then radiotherapy and I want to share some advice with anyone about to start chemo.
PLEASE DO NOT CUT YOUR HAIR - big mistake
PLEASE USE THE COLD CAP (do not be put off using it by the hospital )
PLEASE CONTACT Daniel Field a hairdresser who works with people going through chemo and has created some hair products to use with the cap and throughout treatment which have worked wonders on my hair. I have mid length hair and the managed to save around 70% of my hair and it thinned all over but there were no no patches.
There are no guarantees I know it might not work for everyone, but its worth a try my chemo was a harsh one (docetaxel ) and it worked for me
I bought 2 wigs and many hats expecting to lose all my hair but instead at times my friends could not believe I was so ill. It helped me get through what was it a difficult time, its bad enough having the treatment feeling ill, let alone having to see yourself in the mirror everyday without hair.
Having successfully kept so much hair I didn’t wear my wig once or any hats/scarves
Daniel has had cancer in his family and is devoted to helping others. He had a free online call with me about my chemo and talked me through the cold cap process and his products, he sells them at cost, works with charities and is trying to get them into the NHS. He gives no guarantees but I was recommended by a friend who had cancer and managed to keep most of her hair too.
I cant tell you how much it helped me to keep a positive attitude and for others to see you as well and not sick throughout. Having finished treatment in July my eyelashes and eyebrows are already are back better than ever and my hair is growing back strong too although a little more grey and I look like I have a 70s mullet with new hair growing out on top.
LIke others I had sickness for 5/6 days and severe tiredness as well as joint pains and changes to my appetite but it does all pass and my 3rd week just before the next dose was always a good one. I walked everyday however slow or tired, or short the walk was, my husband was there for support along with my dog Barney (who clearly seemed to know i was not well and sat by my side rather than jump on me )
I attach a picture of my and my husband, this is my hair one week after my last dose of chemo I had lost my eyelashes and eyebrows but kept alot of my hair.
Happy to share more of my experience if anyone’s interested
Good luck to everyone out there, its a difficult time, take it day by day, listen to your body. There is light at the end of the tunnel so grateful to all those who have helped make the treatments today so much better than they were in
I am receiving 12 weekly Paclitaxol and have just completed 7. I’m posting now with insomnia from the steroids😞. I have cold capped from the start, I did cut my bob I to avoid as cancer centre had guided me to. I have accepted the shorter hair and the stylist recommended long on top with a modern comb over style with height. My hair some curl so looks kind of good, but harder to style without heat now. I have a lot of hair and have not really lost anything, i wash once a week using Percy and Reed scalp concentrate shampoo, conditioner (using scalp brush) and scalp treatment,followed by wonder balm primer. I brush twice daily and have shed lightly…
On my first treatment I met another lady cold capping on Paclitaxol and she had lost quite a few patches but continued capping until the end, the cancer centre we using older Paxman machines for my first 3, the newer machines are so.much colder and hopefully the work better. I have scalp tingling and sensitivity. I need to wear a hat outside as the wind feeling weird on my scalp.
and haircare during chemo
I contacted Jasmin on www.cancerhaircare.co.uk their website has loads on cold capping as does paxman. She emailed back loads of info and links. They are also sending me some free Eyelure c lashes as my lashes are very fine and 50% eyebrow loss, so far.
Did a lookgoodfeelbetter.co.uk virtual to help with makeup and filling in or creating eyebrows. You can do face to face or virtual, they give you goody bag at face to face and post out afterwards if virtual. Also hand and nail care cause , recommend painting dark nails with taxol and afterwards to help reduce sun exposure. They go through full nail care of hands and feet, a smaller goody bag is given as well. I have sensitivity and allergies and they gave recommendations for suitable nail strengthener to try, mainly vegan based with less nastie.
Paxman website give loads of trial data and you can get percentages of hair loos and variety of Chemotherapy regimes. Paclitaxol was about 80/85% hair remaining if I had known I may not have it my hair.
I have 5 more sessions to go and will update any further loss.
Daniel Field has been my hairdresser for years and he does so much work with cancer and NHS. Have heard fabulous things about his cold caps and so glad they worked for you x
Hi
I’d just like to add, i agree, I had cold cap and only lost 20% of my hair, [i didn’t check how much hair was lost in my hair brush before, and yes some came out, but i’d been advised Cold Cap the best, just take a blanket when you have your treatment, a good book, and the nurses will make you a brew or two] but boy did it grow back and even better, it became curly. I too have a drawer with wigs provided free by Macmillan, and hat I bought plus a few friends bought for me. And i was on Doxetaxel. I did however loose the end of my nails, but even these have grown back now, the toe nails taking longer. moonsox xxx
Thank you for this information. I got breast cancer in 2014 and had a double mastectomy with implants after but it failed in 2016 I had reconstructive surgery but had lots of issues. 2018 although having no boobs got cancer again by my armpit it didn’t effect my lymph nodes but they were removed. I did 4 weeks of radiotherapy but sadly last month I got it back again under my reconstructive scar. They offered to remove the small lump or remove the breast. We have a family history of breast cancer so I have decided enough is enough I can’t keep trying to cope with worrying will it come back a forth time, remember I had both breast removed in 2014 so this month I am having both breasts removed this is my best chance this time I will have a bit of chemo.
Iv always had short hair but strangely when I got diagnosed in 2014 it made me realise I could have dies. I started dressing like a woman not a tomboy my hubby thought he married in 1985 and grew my hair. Out of everything Iv been through losing my hair was my fear. This time around I would rather lose my hair then die, hair grows back. I was intending to have it cut short again to save me getting upset at losing the length. I don’t know if this cap can be nhs funded but after reading this I think a shoulder cut would be more Suttle then loading it off. Iv read this message just in time before haircut next week.
Please not not everyone is as unlucky with surgeries as me and I wish everyone well with treatments, always keep checking no boobs doesn’t mean no cancer it just lowers your risk and if it’s in the family genetic testing.
Sorry for those who have nodded off by now keep smiling be strong
Sprout so interested to hear your story, hopefully this time you will be rid of it for good. I really hope so you’ve been through so much.
I had cervical cancer and a radical hysterectomy when I was 29 and last year at age 63 a double mastectomy after screening found grade 3 cancer in both breasts. I was told that as a larger lady ( size 20/22) having a mastectomy and reconstruction at the same time was too dangerous and so it was recommended that I separate the 2 operations. Having lived 1 year without my boobs with some rather horrid puckered scars I am still seriously considering a reconstruction but with my own tissue /stomach, however I need to lose serious weight to do so and am struggling especially as I have lympodema in my legs from my first cancer.
I have heard good and bad on reconstruction and so its a difficult decision.
With regards to my hair and the cold cap, these were present at the NHS hospital and you should be offered it as part of the plan for your treatment please ask if not automatically offered. I had to make sure in advance of every appointment they had it logged on the appointment as it takes 30 mins to get ready before you put it on. When I spoke to Daniel Field he told me that some NHS hospitals discourage the cap as there are shortages but not to be put off but to make sure they were there for me I’m afraid we need to take control and be firm with the staff. some times I had to wait as they had forgotten to get ready but given the results on my hair I am glad I did.
Keep mobile after your op and you’ll be up and about in no time
Lots of love Pearly
Oh I hear you I truly do. I was 46 when I had breast cancer and a couple of month later I had my Ovaries removed. Life can be crap and you think why me. I believe everything happens for a reason but you don’t understand why.
Because my implant failed on the cancer side I had to wait until my breast had healed. I didn’t want reconstructive surgery to start off with but I went on the list and knew I could change my mind. I thought Iv always had big boobs, I went to bed one night then woke up with them. I’m sure it wasn’t but from 12 they were noticeable and life without them was not for me. I love my tops and stuff but now I regret having them done. My right breast opened up and oozed nasty stuff out I had an infection that put me in hospital for 5 days on v strong IV drips. I now have lots of oily cyst in that breast and it’s so uncomfortable.
I had my stomach used for my boobs and it was nice to have a flat stomach but while at Sailsbury I was taken back to surgery a week later as my stomach scar was getting infected due to them using plasters. I became allergic to them after the first cancer.
Surgery is around 10hrs long so I understand why they say lose weight but I have lymphedema in my right arm from the second cancer so I know your weight fluctuates with the fluid. My cancer is in an area where I can’t use my machine so I use my sleeve at the moment.
Everyone’s surgery is different and most are straight forward but unfortunately mine wasn’t. 2014 they didn’t have much stuff about for mastectomies bra wise but now you have more options. If anything I wish I had gone flat then had the silicone where they add volume at a time. Not sure if they still do that but now I’m happy to go flat and just put a bra with softies inside when going out. My health is more important than boobs.
I was 4.5 yrs clear when I got my second cancer so I was taken off tamoxifen and placed on anastrozole now I’m 5yrs and have it again. I’m waiting for my HER2 test to come back as it was inconclusive. But my surgery is booked for a couple of weeks time.
Iv had an issue knowing something wasn’t right for 2yrs but they said I was fine and were ready to discharge me last month then I got a rash over both breast overnight and went to see my consultant who in the past raised his eyebrows at me as if not you again. This last time he had attitude towards me like what do you want me to do send you for a scan attitude, so Iv told my consultant I will not have anything to do with him now. Once Iv had my op I will be reporting him and getting my records. I’m strong but if I had just gone home I would be no wiser this time it was a grade 3. I will never be fobbed off again it’s my body and I know when it’s not right.
If you want the surgery then ask the doctor for help, are you on the waiting list. I was told 42 weeks, 2yrs later I got my surgery.
I live on an island south of England and had to go via ferry to the mainland this time it’s all at my hospital.
Thank you for sharing your story, this time my gold is to make people aware of what Iv gone through so people speak out and are not afraid to tell their consultant if they feel something.
Can I ask how you managed after did you wear bras or not
I wish you well
Alison
Hi
I stayed in hospital 2 nights after my surgery they wanted to send me home 24 hours later but the sister said no, thank god !
I left hospital after 48 hours with 2 drains in. The district nurse came in day 3 but saw my husband was capable and taught him to change them daily. They were in for about 8 days after surgery and removed by nurse.
I found I slept well with a V pillow in bed, it kept me on my back and stopped me rolling over and so I got to sleep ok. I use a spare pillow now to cuddle as I now sleep on my side
I also wore little vest tops that allowed me to take my arms out and step in and out of.
There was some great vest top PJs in Matalan last year
I still wear little under vests today when I don’t want to wear bras and the prothesis.
I have a mixture of soft bras you know the type bralett style which are stretchy and no cups but you get a soft form and can take them out and add prothesis
I often wear soft bras and use Marks and Spencers soft foam prothesis they are great only £10 each and even have a nipple shape. Great for swimming too.
I have some ugly puckering type scars which are tender and numb in places too. The adverts you see on TV for those pretty straight scars are not my experience but my consultant has always said he will tidy them up. However as I said earlier I am trying to decide what to do as I should not have any tidy up operation if I am going to have reconstruction - that’s my dilemma.
Will be thinking of you any other questions let me know xxx
Hi Pearly,
Thank you for your post, I have just read it after today receiving my chemo plan following a bilateral mysectomy. My biggest worry and I know it’s silly is the losing of my hair. It was such a boost to read your post and see your lovely photo, you look amazing …. Thank you x
Tp1
Really hope it goes well, please please contact Daniel Field for advice it’s free no obligation. It helped me so much not to see a sick looking lady looking back at me in the mirror and to have everyone treat me as normal because they expected me to look sick and I didn’t.
Yes the cold cap adds time to the chemo process but it’s been so worth it take a good book, packed lunch or your iPad and dig in
For balance, it’s worth mentioning that lots of us are cold capping without Daniel Field, and having good results. I did a consultation with Daniel’s team before I started chemo (I didn’t speak to him direct but someone who worked for him). She seemed nice but the shampoos are expensive and none of what they say their products do has been tested/peer reviewed by scientists, unlike the cold capping machine itself.
I was in The Christie yesterday and one of the chemo nurses had just come back from a cold capping conference w Claire Paxman (who makes the machines). He came over and asked if I’d bought the shampoos. Someone at his conference had directly asked about Daniel Field and she was v wary about some of the claims.
I don’t have strong opinion on this, and if it works then that’s amazing. But felt it was important to share another view as it’s fresh in my mind from yesterday afternoon. Xxxx
See my post above re shampoo etc and links to other charities that can help as well as Paxman website.
I have shed a little and still have a full head of hair. Without cold cap it would have been gone.
I looked into Daniel Field and it’s on par with Percy and Reed products but I’ve either purchased at discounted prices on QVC or their own website, which Daniel doesn’t seem to offer.
Jasmin from www.cancerhaircare.co.uk worked for Trevor Sorbie and she recommends affordable Faith In Nature £6.69 for 400ml which I have also used. So definitely more pocket friendly.
Thank you.
You are right about shampoos, I didn’t use the Daniel Field Shampoo. I used Dove daily light moisture shampoo and tried not to wash my hair too often.
I used the Daniel Field products for the cold cap process and the active daily hair /eyebrow/eyelash serums everyday between chemo treatments. I think these helped me but as you say everyone is different, I can only repeat what the chemo nurses said to me about the amount of hair I kept and that they had not seen so much retained even on the cold cap.
so pleased you were able to keep so much too
good health to you
Hi - I have been offered docetaxel and cyclophosphamide four sessions every three weeks or Paclitaxel every week for 12 weeks.
I have real concerns about the Docetaxel hair loss and possible long term incomplete hair growth / aloplecia
I have been told I can try the cool cap with either of the them, the 4 sessions or the 12 session.
Probably a lot will be to the actual dosage of Docetaxel but does anyone have any information on this and their hair loss I am aware every persons cancer is different but would be helpful
Thank you
I can only speak from personal experience, I cold capped for 12 weekly Paclitaxel and lost two small patches bone my ears and shed all over. I had a lot of hair that I had cut into a pixie as I was told even with the cold cap I could still loose my hair. Another lady in the cancer unit was having the same regime and lost 50% of her hair with a cold cap.
Paxman have lots of information on [cold Cal website](https://www.coldcap.com), there is also a charity called Cancer Hair Care run by Jasmin who worked with Trevor Dorbie also offer lists of advice with caring for your hair whether cold capping or not.
This is a very useful thread to read
You can also search ‘cold cap’ in the forum and see what comes up.
As you say we are all different and tolerate the treatment differently, not to mention all our hair is different, so it’s hard to say what will happen.
Cold capping can be challenging especially for the first 10/15minutes, I tried paracetamol but realised that distraction worked better for me ( reading a book or watching something on my device). Making sure the cap is used correctly is also important ( see link above).
I had 12 weeks of Paclitaxel /Carboplatin and then 4 cycles of EC. The cold cap has definitely helped me keep my hair, however, I did lose 90% of it over the course of the treatment. The good thing was that I was losing it slowly, so I was never bold, because by the time some of my hair had fallen out, some of it has already regrown. I’ve lost quite a bit of hair after I finished EC, but some of my friends haven’t even noticed that I had chemo!
I would definitely recommend cold capping.
I did cut my hair shorter than usual and it was a good thing. I had a longer bob which I could tie with a crunchy. I’ve got fine hair and even with much shorter hair I had issues combing it, as the ends kept getting matted. No need having a pixie cut though, my bob length was manageable and it was nice to be able to put my hair in a short ponytail and keep it away from my face. I tried not to wash it more than twice a week.
Thank you for responding.
Yes I think I know it is inevitable I will loose my hair.
My hair is very long way past my shoulder blades and always has been it’s part of my identity and who I am so I am finding it difficult so I am unsure whether to cut it before treatment or start treatment and if becomes too thin will have to cut it
I was like you, had always had very long blond hair. For me getting a longer bob was a good compromise - luckily quite a few of my favourite celebrities were going through their bob phase which made it easier for me.
be strong
But felt it was important to share another view as it’s fresh in my mind from yesterday afternoon. Xxxx
thankyou it’s a thought that it may be the way to go in the first instance to shoulder length