Cold caps, wigs, bandanas...any advice?

Chemotherapy

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Cold caps, wigs, bandanas...any advice?

No. of entries: 53 | Posted on 26 Aug 2011 09:27

Cold caps, wigs, bandanas...any advice?

  • Hi everyone, 

    Just hoping some of you lovely people out there could give me some guidance as I am going to have chemo which should start mid October (got 6 weeks radio therapy first).  I will be having 6 cycles altogether and the drugs they will be administering are Paclitaxel and Carboplatin.  I have been told by my Dr that I will definately lose my hair and whilst I have pretty much got my head around the idea, my children (my 14 year old daughter in particular) haven't. I have heard from different sources that a cold cap could help prevent the inevitable, but it seems pretty hit and miss; I wondered if this is due to chemo drug type?...has anyone else had my combination and has success with it?  Also, I feel it sensible to source a decent wig before the dreaded day; can anyone advise on where I can buy one locally?  I live in the north of West Sussex, about 10 miles from Gatwick.  I don't really know where to start with it all and what to look for.  Also, any tips for preventing/dealing with side effects...radio therapy or chemo?  Such a lot of requests...sorry!  I will try not to be such a demanding member in the future...honest!  Best wishes to all on this site; your blogs etc are inspirational and I no longer feel on my own with all this, thank you, Jennyx

  • Hi, Jenny, I have only our daughter's experience plus that of her good friend to go on......daughter did get a wig but in the end didn't ever wear it, think it didn't look that good and dwarfed her face too much, she wore scarves and bandanas......her pal who loves her still wonderful head of hair, had cold cap for her B/C treatment, it proved tough to push for it but she did keep most of her hair, though it thinned somewhat. I seem to remember that she had arguments sometimes and slight delays, but insisted. 

    Hope you get on well, and have help deciding too..........keep posting! 

  • Thanks so much for your reply...all information at the moment is helpful; there's so much to learn isn't there? I do hope your daughter and her friend are doing well?  I think I am going to take a light hearted approach to it all and take a good friend with me and we can both try on all the wigs...she has a very dry sense of humour so it should be an experience!  Hope to catch up with you again soon, Jennyx

  • Hello Jenny,

    I am in a different part of Sussex to you (East)  When I was undergoing my chemotherapy wanted to get a wig sorted before my hair fell out.  Eastbourne hospital have a list of people who they recommend for wigs.  A couple of them will come out to your house which i very handy.  The lady that sorted me out was absolutely brilliant.  A friend of mine is just undergoing chemo and you would not know any difference between the colour of her wig and her own hair.  Think u can go on the Eastbourne hospital website and get the information.  Good luck and you will be surprised how quickly your hair grows back after the chemo has finished.!

    Pauline x

  • Hi Teresa,

    Thanks for your help, particularly as you had the same combo as me for chemo. Mine is uterine cancer, but same area I guess.  Did they manage to catch yours early?  It's good that you are in remission...must be worth all the agro of side effects and no hair then! To be honest, I am only thinking of using the cold cap for my daughters sake (14yrs old)...she looked it up on the internet herself, bless her, so I know she will be really disappointed if I don't give it a go.  Do you have any children?  Sorry, if that's a sore point; I know there are many on this site that have missed the chance due to this horrible disease. It's just if you do I wondered how they took it when you lost your hair? I had heard that the wigs are free on the NHS...do you get a spending allowance? I see that wigs vary so much in cost etc.

    I haven't braved the chat rooms yet...I'm still trying to find my way around the site. I'm pretty sure I have sent words of encouragement and support to completely the wrong person and I am worried I might cock up again as it were.

    Thanks again for the info...I hope we can chat again,

    Wishing you luck for your continued remission,

    Jennyxx

  • Hi Pauline,

    Thanks for your reply; I will definately give Eastbourne hospital a look. I have enlisted the support of a very good friend to come with me for a wig trying on session...she has a very dry sense of humour (as do I), so I am actually looking forward to it now. I have also been given the name of a salon in Brighton, so might try there too.

    I hope your journey hasn't been too tough and that you continue to do well; I hope to chat again soon.  In a few months I should be an old hand at all this!

    Jennyx

  • I too have a dry sense of humour, but not appreciated by everybody!  You have got to laugh at yourself havent you?  Yes I am doing well thanks.  Nearly three years since I had my chemo.  Keep smiling!

    Love Pauline x

  • Hi Jenny,

    My wife lost her hair in the 2nd week of the fist round of Chemo. It was very sudden in that she went in the shower with a near full head of hair and came out nearly bald. She was hysterical at the time, as were her 2 daughters (21 &25) who were at home at the time. By the time I was home from work that evening, although still shocked, they were getting used to it.

    The wigs seem to be very good these days, when she went for her 2nd Chemo, and got talking with others, she was amazed how many were wearing wigs. At home she doesn't bother now and is quite comfortable around friends etc.

    So, try not to get too worked up, remember it is only transitory, and you will all get used to it. It is just another step towards getting better.

    Angus (just a bloke of course!)

  • HI, th most upsetting thing for me in the early days was trying to come to terms with hair loss, i was more concerned about this than i was about having cancer as daft as it seems. i have five children and foster a two and half year old. my youngest daughter was 16 and used to straighten my long hair and curl it. as soon as i was told i would lose my hair i went to into one of those shops where you just walk in and get your hair cut i had it all cut short about three inches and spikey. came back and everyone liked it. i then waited a till i started the chemo and went to my own hairdressors who gave me a number 2. my hair has not fallen out but it thin i have lost quite a lot of body hair. i was assured that the drugs i was to take cause total hair loss. ima 7 weeks into taking them and still have hair but its short. as soon as i started the treatment my focus became fixed on living with the side effects and getting through my journey, i dont care about my lack of hair now i wear scarfs, hats and wigs more of fear of upsetting people. people struggle to know what to say. so to preserve their embarresment i wear head gear in public but to be honest i would go out as i am. its cold though so i am quite often sitting in the house with my bobble hat on.

    i heard cold cap is hit and miss and would advise you think hard.

     

    hope this has helped

     

    sue

  • Hi Angus,

    Thanks for your reply. I am sorry that your wife and family are having to go through this too; there's so many stages to this process that are emotionally charged aren't thereI? From the day you first hear the bad news and all the worry at follow up appointments and treatment etc.  When all things considered I think that when I look back, losing my hair really wont be  that big a deal compared to everything else we have to endure.

    I think I will just arm myself with a multitude of different head coverings; maybe a sparkly one to see me through Christmas, and just get on with it.

    Had to smile at your last comment though... 'just a bloke' as it reminded me of the adverts on tv at the moment, the ones with the little dog inside the jewellry box...they really make me laugh.

    Wishing you and your family well on your continued journey,

    Jenny

  • Hi Sue,

    Thanks for your advice; everyone on this site has been so kind and supportive, which considering the journey they are all going through themselves is truly humbling.

    I'm glad you have been able to adjust to your new look; I know when my mum was offered chemo for her lung cancer she would not even consider it until they assured her the type they would use was not likely to cause hair loss.  I feel a bit of a fraud in comparison as, although I am not happy about losing my hair, I am quite a confident, cheerful sort of person and I think that I will be able to deal with it better than a lot of people.  That said, I haven't lost it yet!

    I agree with you about not wanting other people to feel awkward though; I think I will do my best not to upset anyone and I think that for my daughters sake in particular, I will keep my head covered at home.  I don't think children need to be reminded that their mum is ill every time they look at her.  In a weird way, I am more upset about losing my eyelashes and eyebrows as I think they give a bit of character to your face and it's pretty hard to make them look natural with makeup isn't it?

    I have made the decision to try the cold cap for the first round of treatment as I know my daughter would be disappointed if I didn't at least try it.  I think if it's not going to work I will probably know after the first cycle anyway, so at least I can facet the last 5 cycles without getting brain freeze.

    Many best wishes for your continued recovery,

    jenny

     

     

  • Hi Jenny.

    I've had platinum and taxol twice now, in 2008, when I was first diagnosed with ovarian cancer and this year(1 more dose to go , on 9th sept). 

    I got a free wig each time, through the NHS.They are really very nice, so perfect, no such thing as a bad hair day.In 2008 I wore my wig whenever I left the house. It was winter time and it was like  a very warm hat, which also looked good.However this time. as I have had my chemo in summer I have worn scarves, which are much more comfortable.

    My daughters were 15 and 18 when I was 1st diagnosed.

    I tried the cold cap, 6 hours is along time! Just used it for the 1st cycle and 2 weeks later my hair was coming out in handfuls, so had to revert to plan B(shave my head).I got my daughters to help me with this, and found this , oddly, quite a positive experience.

    My hair grew back thicker than ever , very curly and in excellent condition after my chemo in 2008.

    julie

  • Hi Julie,

    Thanks for your reply; I am so sorry you have had to go through this experience twice; that must have been very tough for you and your family. I guess it's something we all have to live with... the prospect of further treatment.  I hope this time it works for good and that you can at last get on with the rest of your life and truly enjoy time with your family. 

    With reference to wigs, could you tell me how I go about getting my NHS wig voucher and how much it's value is?  I don't actually pay for my prescriptions as I am on a very low salary so I'm not sure if I need to pay anything towards a wig or not? I got the impression from my Macmillan nurse that I would hear all about it at my pre chemo appointment but that gives me no time to get the wig before it all begins. I would far rather have all the wigs and hats etc to hand in advance.  

    Wishing you well with your continued treatment,

    Jenny

  • Hi Jenny, I tried the cold cap when I had chemo, way back in 2004. I have to admit I absolutely hated it, but was glad I at least tried it. My hair started to fall out in clumps soon after, which, in some ways was a relief because I had been swithering whether to continue with the cold cap. Some women do have success with this, so certainly worth giving a try.

    I also lost all my body hair (not something they tend to tell you so it came as a bit of a shock lol), but it saves on shaving. Strangely I kept my eyebrows and my eyelashes only thinned, so I hope you are as lucky.

    I did have my hair shaved really short as I couldn't stand it constantly being in my mouth and around my shoulders. I was given a voucher at the hospital for a wig and the styles and colours they have are gorgeous. I went for one which was very similar to my own style and everyone told me they didn't know it was a wig I was wearing. To be honest though, I didnt like wearing it, so I wore bandanas during the day and kept the wig for nights out. I did get funny looks from a friend of my mum's when I saw her in the supermarket on Monday after she had seen me at the local club on the previous Satrurday. She had seen me with a 'full head of hair' then two days later, nothing lol.

    One lighter moment I had was when we were at the local club and hubby put his arm around my shoulders while he was talking to me. When he moved back to his own side he was taking my 'hair' with him. I had to lean with him and whisper, "You're taking my hair with you". He was horrified and so apologetic, but I could only laugh lol.

    My hair did start to grow back really quickly and is now as long as it was previously and I have really long hair.

    On the whole, I saw losing my hair as a small price to pay for having my life saved. I know a lot of women see it as quite traumatic, but you sound like a strong, positive person who will take it in her stride. I hope your daughter manages to take it well. You never know, kids can be a lot stronger than we give them credit for and I'm sure your daughter will adjust.

    I hope your treatment goes really well and I wish you all the very best for the future.

    Take care, Christine xx

  • Thanks Christine, that was a great help, and I can see we are like minded people who try to see the lighter side of all this...it's the only way!  I have to admit, I am not looking forward to the cap one bit but I think I will always wonder 'what if' if I don't.  Funny thing is I work in a pre school and I am always clowning around with the children.  One day I found a couple of wigs in a charity shop and took them in for all the children to have a try.  They certainly weren't the sophisticated Sophia Loren type I keep seeing on the web sites...more like Ronald MacDonald, lol...oh, how we laughed...little did I know!

    With regards to my children; my boys who are 12 and 17 are just getting on as if nothings changed...that's boys I guess.  Actually my eldest son has mild autistic spectrum disorder which strangley has been a blessing for him over the years as he hasn't really felt the stress of anything...I separated from their father in 2007 and he just laughed it off and now he really isn't bothered about my cancer much at all.  It's not that he's callous, it's just that his brain is wired differently and he simply cant process big events in the same way that everyone elso does. . . wish that was catching right now! 

    I'm guessing that my chemo will start mid October, so by mid November I will either look like and easter egg or I won't...I will let you know!! Oh, the suspense, lol.

    Thanks again for taking the time to reply, and wishing you a continued recovery,

    Jennyxx