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Cold caps

21 Aug 2015 09:13

Aren't we going through enough without the dreaded cold caps that are supposed to help?  I was told that I could use a cold cap but nothing was explained as to what it would entail so I had no idea of what to expect.  It was a warm day when I went into Bart's, London for my first session so wondered why the nurse gave me a blanket.  She then sprayed my hair with cold water and left to get "the machine".  During this time another nurse came in and asked me if my hair had been sprayed yet.  As it was plastered against my head, I just hope she didn't think I looked like that all the time.  The machine was brought back, turned on for a while then the "swimming cap" was forced on my head.  It was so cold that after a few seconds it was getting unbearable so I asked her how long it would be on, thinking if it was half and hour or so, I could possibly put up with it.  She told me 5 hours!  That was my first, and last, experience of a cold cap.

Has anyone managed to bear the discomfort and, if so, did it help?

More hair came out this morning which was upsetting.  I know we all expect it but it's still a shock and upsetting when it happens, isn't it?

BB xx 

Cold caps

24 Aug 2015 08:14 in response to Battling Babe

Hi Battling Babe

I hope you are finding Cancer Chat a supportive and helpful place to come and share your thoughts.

We have some information here on hair loss, hair thinning and cancer drugs.

It includes sections on coping with hair loss as well as patient stories and tips.

I hope it is useful,

Best wishes

Jane

Cold caps

24 Aug 2015 09:05 in response to Battling Babe

Hello BB, when I went for my chemo last Friday, I was undecided on the cold caps until I saw a lady going through the process and it looked like something from a torture chamber! As there is no guarantee, I decided to give it a miss and the 5 hours sort of purt me off as well. Like you, I think we go through enough.  So I have the hair loss to look forward to, but have set a date - a week Thursday - and we are going to shave my head with or without!  Luckily the wig is arranged for Friday, so it will just be a hat for a day.  Knowing my luck it will be sweltering and I am in a bobble hat ha ha. I too am not looking forward to being bald, it is a huge thing on the confidence front, but if it gets rid of this awful disease, then this time next year, it will seem to be a small price to pay.

very very best wishes, and good luck. My second is on the 11th, so will be thinking of you.  Hugs margaret xx

Cold caps

24 Aug 2015 09:10 in response to Battling Babe

Hi!

I managed the dreaded cold cap for 3 sessions, however by my 3rd my hair had thinned out so much and was balding on top, not a good look and seeing my hair fall out was just getting too distressing, people say 'oh it will grow back Lisa but they r not the ones going thru this ordeal. Things got too much and I made the brave decision to get it shaved off snd it was the best decision I made, I can actually now enjoy a shower without freaking out about my hair!! Plus no more cold cap!!!!!

Good luck with the rest of your treatment, I should have had #4 last thurs but wasn't allowed as I now have shingles!! Hopefully this thurs I can get #4 out the way. Nothing prepares u for chemo but these forums have helped me xx

Cold caps

24 Aug 2015 16:57 in response to Moderator Jane

Thank you Jane.  The information you directed me to was really helpful.

As for the forum, although I've only been a member for a short while, it seems as though everybody is a "friend" who is more than willing to help, support and listen.  Thank you to everyone.

BB

Cold caps

24 Aug 2015 17:35 in response to Purplelily

Hello Margaret

Thank you for replying.  Yes, the cold cap machine does resemble an instrument of torture.  Horrible.  I expect your stomach is turning in readiness for Thursday.  No-one wants to lose their hair but when it does happen it is better to be pro-active.  Last Saturday was a bad night for me.  I had been losing my hair gradually but when I woke up on Sunday morning, I wondered why my shoulders had suddenly become very hairy.  I thought I was turning into a Yeti until I looked at the pillow, the sheet and my back and realised that it had started to happen in earnest.  I just burst out crying.  But managed to stop until I had to sweep it all up from the bed which made me start again.  What a watermelon.  What sort of wig have you ordered?  And if we do have a heatwave on Thursday then I'll know who to blame (you, for wearing your bobble hat).  You're so right; to lose our hair is such a huge knock to our confidence but, as you say, if it gets rid of this very unwelcome visitor (or at least keeps it under control) then that's what needs to be done.

I couldn't have my second session today because there is/was a problem with my blood last Thursday so I'm hoping by now that I may be all right for later this week.  Fancy hoping for a next session of chemo but you know what I mean.

Thank you so much for your best wishes and sending me good luck.  As your next session is on 11th, I expect you're still feeling "urgh" from the last one, so I really do appreciate you writing.  Thank you.

My good wishes and luck to you as well Margaret.  Do take care.

Love BB x x  

Cold caps

24 Aug 2015 17:56 in response to lisacr

Hello Lisacr

Thank you for replying.

How disappointing for you to have 3 sessions of the dreaded cold cap only to find that your poor hair had thinned to such an extent.  Yes, it is very distressing when that happens.  I totally agree with you about the things people say.  Don't get me wrong, I know they mean well but saying things like it will grow back is really of no help NOW, is it?  We're not daft; we know (hope) that it will grow back but when that seems so far away, it's of no consolation at the moment.  When did you have your "shave"?  Did someone go with you?  I'm glad to see that you feel it was a good decision for you and, as you say, you've let the cold cap know what you think of it.  I hope you don't mind me asking, but do you wear a wig or a hat now?

How awful for you to now have shingles.  You must be in so much pain; I am so sorry.  I thought I was a glutton for punishment but you beat me.  Have you been able to take anything for it or did they think that it may interact with the chemo?  I do hope you'll be up to having your 4th chemo session this Thursday to get that over and done with.

l had a text from someone the other day who is really worried about me (if she's that worried why didn't she phone?) asking how I was.  When I told her, her reply was that she hopes I feel better soon.  As I have another 5 sessions of chemo to go, I don't somhow think I will feel better soon, but perhaps she knows something that I don't,  Like you, this forum has helped me so much; just talking to people who have gone/are going through it is a great help.

Do take care and no more acting silly and picking up extra diseases that you certainly don't want.

Love BB xx

Cold caps

24 Aug 2015 19:34 in response to Battling Babe

Hello BB - had an eye opening day today when it came to the injections! Will have to try to do it myself as it is quite restricting to have to stay in all day waiting, just need to get up the courage! 

The hair will be shaved a week Thursday, the 3rd. Mainly as I get my wig on the 4th and thought it would be easier to fit on a hairless head ( have a problem thinking bald!). I just  am trying to avoid finding it on my pillow, that must have been traumatic and I would have cried too, even though I know it is going to happen to see the evidence in front of you must be awful. I don't know what the make of wig is, but it is as short as poss in order to wear it for the least time, at least that is the theory.

i don't feel too bad really after session 1, I had what I could describe as a slight hangover after the chemo and Saturday, a bit sicky and headachy feeling, but Sunday was ok as is today. I am told though that the effect is cumulative, so I don't suppose I will be this lucky every time.

hope all goes well with your bloods and you manage to get your 2nd soon, yes I do know what you mean, it is an odd thing to look forward to isn't it? But I look at it the sooner we reach the end the better, then the radio therapy starts! What a journey eh?

well take care, and keep in touch. Best wishes for the 2nd session.  Hugs xx

margaret

 

Cold caps

24 Aug 2015 19:58 in response to Purplelily

I had my head shaved the day before my 1st chemo session because I was told I would definitely lose my hair. I didn’t want to try the cold cap as no-one could tell me that it would definitely work. I decide that if I was going to lose my hair it would be better (more practical & less traumatic) to get it over with. I would much rather the short sharp shock of shaving to the drawn out trauma of having it fall out in lumps.     

There is a lady in the same chemo sessions as me who was using the cold cap.  She said her hair was still falling out, so she was going to stop using it. She was quite upset by the failure.

I’ve been bald now for 2 weeks & it’s not as bad as I thought it would be. I have a wig - which I don’t really use & some lycra caps - which I do.

Trying to look for some positives in everything -

Having a shower is much quicker – no separate hair washing, rinsing, conditioning etc etc

Getting ready to go out is also much quicker – no hair drying, styling etc etc.   

Cold caps

24 Aug 2015 20:56 in response to clairej

Hi Clairej, thanks for your reply. I do think you were wonderful to have shaved before your first chemo, well done you! Would I be right in assuming that it is still growing at the moment? And do you therefore have to keep,shaving? Sorry to be so inquisitive, but I would like to know what to expect for when I do it.

your're right about the speed of showering, I have already thought of that advantage - straight over the top! Not to mention the savings on six weekly trims, shampoo etc etc.

Best wishes xx margaret

 

Cold caps

25 Aug 2015 20:08 in response to Purplelily

Hi Margaret,

No, I'm absolutely not wonderful – just opting for the lesser of 2 evils (which is usually the way I make my decisions at the moment)

Part of my scalp is now hairless, but not all of it. If I hadn’t shaved it I would be in the “oh no it’s falling out” phase. I shave it occasionally with an electric razor just to keep it smooth. Otherwise it works like velcro when trying to put a t-shirt on! Not good when you want to retain some level of dignityHappy

Cold caps

25 Aug 2015 21:45 in response to clairej

Hi Clairej, thanks for that, I did think the stubble would keep going for a while if I shave it before it falls.  Oh well,  the lesser of the two evils as you say.  It feels ok cos I have made the decision about the day, and I won't change my mind about that now.  

Just need some cooler weather so I don't feel too daft in a woolly hat immediately prior to getting the wig!

take care xx

Cold caps

26 Aug 2015 13:26 in response to Purplelily

Hello Margaret

Without being too nosey (which I am and I hope you don't mind) what are your injections for and where do you have them?  Following my surgery, I had to have heparin injections, as I'm sure a lot of people have, in my stomach each evening.  I was given a choice to going to my own GP every day, having a district nurse come in or doing it myself.  I am one of the biggest cowards in the world when it comes to injections and after each one, I began to dread the next.  But I did it!  I used to get myself so worked up beforehand that I used to cry each time (don't tell anyone) but was so relieved after I'd had it that I used to cry again but with relief.  So if you possibly can, it will be worth trying to talk yourself into self-injecting.  Perhaps give yourself a little foodie treat afterwards (I did).

To cut a long story short, I had to go for a blood test yesterday (not Monday) with the view to having chemo also.  I had to be at the hospital at 9am (left home at 8am) and was still waiting for the result of my blood test at 12 noon.  Eventually it came through and I was started on the chemo treatment but only after 4 attempts to insert the cannula,  Because of my dread of needles, you can imagine the state I was in; I just wanted to come home and start another day.  But it was eventually done and this time I had an allergic reaction to the carboplatin. So that had to be given slowly so it ended up that I was the first one on the ward and the last one to leave.  I arrived home at 8.20pm, had a sandwich (which I was given at the hospital) and felt so whacked out that I went to sleep in the chair but did have the energy to put my little sleep cap on so that the chair wasn't full of hair this morning. More hair came out this morning and I've decided I can't go on like this so will make an appointment to have the "shave" sometime next week.  There was a new patient there yesterday who had the cold cap and seem to tolerate it very well.  She was even making and receiving calls on her mobile while she was wearing it!  I couldn't believe it.  Just goes to show.

Do take care, Margaret.

Lovve BB x x

Cold caps

26 Aug 2015 15:36 in response to Battling Babe

Hi BB, so sorry you had such a dreadful time yesterday especially with your dislike of needles! I had a slight problem with the cannula mainly because I have very small veins that don't like giving blood out either! Nothing is easy on this game is it?

the injections are to boost white blood cells following the chemo, and I have them daily in my stomach. Doesn't hurt at all, the only reason i am not keen on doing it myself is it is a fil-your-own-syringe and you have to push it in yourself, now I don't think I can do that, yet anyway.  Maybe as I get used to the idea it will be ok. I am not totally resistent to the idea, so there is hope!   I also have to have herceptin injections later on. I don't feel too well after I have had it for 3 or 4 hours, nothing really specific, just unwell. I just have been curling up on the sofa and trying to sleep through it - and then spend the night awake!

i haven't noticed my hair coming out yet but of course it will. I have everything ready, little sleep cap and hats. As soon as I notice it, the whole lot can come off, perhaps I won't be so upset about it then.

please don't think you are nosey BB, I realise now that there are lots of things that want to know, just small details that you don't get the chance to find out any other way.  Ask away if I can help!

do look after yourself, and hope the next few days go well for you.

 

best wishes.  Hugs xx. Margaret

 

 

Cold caps

26 Aug 2015 17:27 in response to Purplelily

Hello Margaret

Many thanks for your reply.

Yes, yesterday could have been better but when I went into the Friends' shop to buy a newspaper they had packs of Christmas cards there!  I bought a pack so that's me done for Christmas and my good deed for the day all in one fell swoop (hee hee).

How do you actually have to have the injections in your stomach?  When I was having the heparin injections (already filled, sorry), I had to pinch about an inch of flesh between my forefinger and thumb and insert the needle into that.  I found that the more I pinched the flesh the more it hurt (of course) but that seemed to make the injection less painful somehow (make one pain to disguise another).  I'm sorry the herceptin makes you so whacked out that the rest you need afterwards makes it difficult to sleep of a night.  I don't know what the answer to that is.  Quite often I can't sleep of a nght, so I come downstairs, sit in the chair until I feel dozy, go back upstairs, get into bed and I'm suddenly awake again.

My hair reminds me of a doll I had many years ago.  A friend of my Mum's emigrated to Canada and before they were sold here, Barbie dolls were on sale in Canada and Mum's friend sent me one for Christmas.  They must have been the very first models because Barbie's hair, although long, was only attached to the top of her scalp.  She was bald at the side and back but you couldn't tell this at first.  And that's what my hair seems to be like at the moment.  I have fairly long layers which hide the little balding patches underneath.  All right if I stay indoors but not so good when out in the wind.

Thanks for the offer of help with any questions I may have.  I really do appreciate that Margaret. 

 I saw on a television programme the other day, a quote that Brian Johnstone made when commentating on cricket some years ago which made me laugh (I'd not heard it before).  I mentioned it to someone who told me another classic which reminded me of something that happened at work many years ago. They're all rather "saucy" so I won't tell you them now in case you're not ready for some "sauce" but they do make me smile even when I feel "yuck" so they must have something going for them.  You may have even heard the first two yourself.

Do take care, Margaret.

Love BB xx