I use a large cap (big headed!) with a medium over the top, so perhaps you need to do something similar? That way I get good coverage over my hair but the smaller cap on top keeps it nice and tight.
I wonder if they do portable cold caps you can have at home for this heat?!
Hi popkit50 and Bagpuss
I'm having 3 FEC and 3 T.
I'm 11 days post 2nd FEC and would say i have lost about 60% of hair despite cold capping ( though the first time the nurse put an extra large size on my head, and 2nd time the nurse said ' oh no, you're more of a medium - at that point I knew what was gonna happen!)
Met a lady tonight who had all T x6 (and no FEC) and hardly lost a strand of hair throughout treatment. Have seen in various threads that hair starts to grow back in cycle 5 (2nd T) so maybe T is kinder to hair.
Just had a look at the website for the cold cap I'm using (Paxman) and they don't seem to say what temperature it should be, and I don't think my machine actually shows a temperature, it just tells you when it's cool enough to start using.
I've also looked at their research a bit more and about 50% of people who cold cap seem to still have a lot of hair loss to the extent that they need to wear a wig or hair covering (90% for those who don't use the cold cap), and most other users still have a lot of hair loss, but don't necessarily use hair coverings, so I don't think we're unusual in the amount of hair loss and it doesn't necessarily mean it's not working.
They also say that 24% will see re-growth during chemo with the cold cap, versus 7% without it.
So I guess it's giving us a chance of retaining some hair, rather than the certainty of losing it all!
As you say, let's see where we are post FEC 3.
Before I started my chemo I spent quite a lot of time looking through the forums about hair loss and cold capping and the conclusion I came to is that anything can happen! Quite a few people said that they started to get regrowth when then went into T, for others it made no difference whatsoever and they continued to lose hair.
I think it's really personal to how your body responds to the treatment and to the cold cap, so there's no way of telling.
The cold cap website recommends to keep going despite hair loss as any re-growth may be protected. Of course, this doesn't take into account the pain of having the cold cap on a bald - or near bald - scalp, which I imagine is rather uncomfortable to say the least. I'll be testing this in 10 days at my 3rd FEC as I can't imagine I'll have much left by then.
The mucodis doesn't need a prescription (so you don't have to go via your GP), but you can't get it free on the NHS.
I do use it and think it is helpful, but I haven't had any real problems with my mouth so I'm not best placed to say whether it will help you or not.
Make sure you keep an eye on your temperature to make sure it's just sore and not infected.
On the hair front, it's just hideous, isn't it? However, I'm now on day 10 after my second FEC and feel much more able to cope with it now the drugs are coming out of my system. I'm actually starting to think that the low/depressive feeling might be a worse side effect for me than the hair loss!
I'm dealing with the hair loss by wearing a beanie all the time and never taking it off in front of a mirror, so I don't have to see how much (or how little) hair I have left. After a few days I've got really used to seeing myself in the beanie and the decision not to look at my hair is making me feel much less stressed, even though I'm still getting handfuls out when I comb it each morning. It also means that if my hair does all go it won't actually make any difference to my 'appearance' at the moment, though I'm hoping that persevering with the cold cap will keep some of it intact!
Take care xxx
Thanks Sue - you really are a hive of information!
Really appreciate you finding this out - been googling all day, and not finding anything remotely encouraging to help
so many thanks
just found this - might be of help in the meanwhile..
Ways to Improve Vein Condition · Moist heat applied to the arms, from elbow to knuckles, for at least 30 minutes each day will dilate small veins and soften hard veins. Wrap warm wet towels around the arms and cover the towels with plastic to hold in the moist heat. · A heating pad is a convenient method to use. The pad should be set at low or medium only. · Squeezing on a soft ball, such as a stress relieve ball, is very effective in building veins. Do this exercise several times a day. · Increase your fluid intake to help overall hydration and improve your veins.
A hot water bottle wrapped in damp tea towels and then applied - might also do the trik with the 'moist' heat.
Reason for 'moist' heat is that the moisture makes it easier for the heat to penetrate the skin.
Hi June starters,
I'm from the May starters group and have just come to the end of my 3 FEC cycles and was looking on here and wanted to give you some encouragement about hair growth. Mine never fell out completely (I didn't cold cap) but I noticed this morning it has started growing back, quite quickly, apart from my eyebrows which have thinned slightly.
Rosie, I also had a very sore mouth/throat and tip of my tongue during the second week and into the third week of all the FEC cycles. I used Difflam which helped a little and ice lollies when I didn't want to use Difflam.
Take care everyone xx
Rosie and Marjie
I am day 13 of second FEC cycle, doing the cold cap and have lost about 50% of my hair, mainly from the top. I can't decide whether or not to perservere with it. I've now had it cut into a very short crop which feels odd. The hairdresser who cut it recommended a product available from Boots called Bouffe. It's a coloured spray which volumises and covers thinning hair. It does actually seem to work and is cheap - £5.99. I have light brown/dark blonde hair and I bought the light brown spray as the dark blonde one was too light.
The hair loss does seem to have slowed down over the last few days so I'll see how it goes in this last week before the third FEC. However I am having Docetaxel (Taxotere) for the last three cycles and I'm told the cold cap won't prevent hair loss with this - does anyone know if this is true?
Belle - My husband and I had our 28th wedding anniversary recently, so all you said really struck a chord with me!
I think I've been really lucky that I haven't had a very sore mouth as some of you have had. I just have a funny taste and the coated tongue. Trying to drink as much as possible but I'm fed up of having to find a loo really quickly whenever I leave the house! I'm getting prepared with frozen pineapple chunks and fruit lollies in case the next FEC makes my mouth sore.
I hope everyone has had a good weekend and that the week ahead will be a good one too. I've got a really busy week planned - highlight being a trip on Tuesday to a shop which specialises in mastectomy lingerie! I'm fed up with wearing the post surgery bra and can't seem to find anything else I like. Then a PICC line insertion on Thursday, wedding on Saturday which I'm doing the flowers for and my husband's 60th on Sunday!
Big hugs to everyone xx
Thanks for all your replies.
Bagpus, that looks interesting, but yes, expensive! Did you buy it yourself, there is no prescription for this? To be honest, if it helps, I'd do anything.
I'll also look ask about Gelclair.
I was tempted to ring the cancer helpline today, but at the same time I really dont want to go into hospital (too far away). I am not about to keel over any minute, and we are planning on going to see a horseshow at the riding for disabled where I used to volunteer.
I just want some relief for the sore mouth and throat! I wonder if I can phone, and then perhaps get to see an out of hours gp here in town and get a prescription. Do you think they'd do that or can I expect to have to come into hospital if I phone?
Rosieflower, it's so distressing losing the hair isnt it. I was very adament I wanted ti try and keep my hair, and now there's hardoy anything left! It still is ok under hats and stuff, so I may persevere a bit longer... Are you going to try and keep on coldcapping?
The cream sounds good - do u know what might be in it, as wud try and find someone here in Cardiff to mix up for me. When I spoke to o e of the BC nurses here about my concerns, it was a case of ' it happens' - they didn't seem to take on board that I wanted advice to relieve it so that the next FEC runs as smoothly as poss. Been using Burt bees lipsalve these past 2 days and lips have calmed right down today.
Happy Sunday all
Just having read re your se with the throat - it is not a minor side effect and should be taken very seriously! Did you tell your GP you are a chemo patient?
Also -have you been taking your temperature? Is it in the normal range?
Even if it is - I would really suggest you phone your chemo helpline - and discuss. It would be a good idea to tell them what your GP prescribed and that it is not getting better.
I'm 8 days post 2nd FEC, and like u cold capping and I would say 70%of hair gone - so depressing when u try so hard to maintain and endure the cold cap. My mouth has been much worse this time round - my lips are on fire as if they have been burnt and are red raw. Also tip of tongue feels sore. Its so bloody miserable at times and so hope the mouth settles for u real soon. Big hugs Rosie x
My oncologist recommended Mucodis which he said a lot of patients have found useful. I use it three times a day as a mouthwash - I was using Nyastin but stopped as I found Mucodis works better and tastes nicer. To be fair, I have been really lucky with my mouth so far and just have the nasty taste, white coating and funny texture to the roof of my mouth, no pain, so I can't say for sure if it would help you. However, it's not hideous to use, so might be worth a go. On the down side it's quite expensive and you can't get it on the NHS (possibly because it's so new, it's only been out about a year by the look of it).
This is the information from the company that make it: http://mucodis.com/
This is where you can get it online: https://www.clearchemist.co.uk/mucodis-mouthwash.html
I also was able to order it through my local Boots pharmacy and the price was the same as online (obviously without the delivery charge). You can also get a oral spray which is the same stuff just you sort of jet wash your mouth instead of swilling!
My chemo nurses also said that salt water works as well, if not better, than any mouthwashes.
I'm sort of combing all the advice; I use corsadyl morning and evening after brushing, salt water after every meal/snack and mucodis 3 times a day. I feel like I spend my life swilling things around my mouth!
I hope this helps x
Just popped over from the July starters thread. I had my first of four TC chemo treatments on 4th July, so I'm on day 13 now.
Marije - I had a really sore mouth and got "GELCLAIR". It's a box of individual sachets with some gel in them that you dilute with water and use as a mouthwash. They are not in the BNF but chemo unit told me to phone GP and ask for prescription which he duly did, pharmacy had to order them in but got them the next day. They don't taste brilliant but seem to have worked. You can't eat or drink anything for an hour after taking them as they "coat" your mouth. You can use up to 3 times a day. I've also just been rinsing with salt water, boiled water that has cooled to lukewarm. Good luck.
Belle - your lovely face popped up on my Facebook newsfeed.
Watch those ulcers Marije, check you temp too - if you've got an infection brewing you'll need to get onto your chemo team smartish - and doesn't it always happen at the weekend?! I know you said you saw your GP but you shouldn't be having growing ulcers without something stronger than Difflam. I'd be inclined to ring your hotline number if the ulcers are still there in the morning at all. There are all sorts of meds they can prescribe - bongella is really really mild in comparison to what can be doled out.
And I was having that very conversation you've just outlined with a friend of mine today!! My other half is generally very good but needs a LOT of direction. Tomorrow I'll be planning the meals for the next fortnight to cover my 3rd FEC. I'll have to make sure every meal is planned, written on the fridge door, with location in the freezer if it's just a pre prepared meal; if it's a cook from scratch meal, I need to write down the recipe title, page number and book title, then make sure all the ingredients are shopped for and to hand - and I can only cope with the stress of him cooking from scratch twice a week. Even then meals will only be thought of minutes before he wants to serve them so I need to make sure there's a ready supply of snacks I can grab for when I need to eat immediately!! Even with all this, he will still ask me what's for dinner ...!
It's our 28th wedding anniversary on the 23rd, and this is the most I've ever been able to get him to do food wise so I'm never going to get more than this. All thing considered it's not too bad and at least I don't have to juggle children too. As for laying the floor - my husband decided to decorate the house 😉 They *mean* well!
I get a sore mouth & throat too. First time I had oral thrush which wasn't helping - nasty white plaques and very very sore tongue. Treated with Nystatin and it cleared up but my mouth remained tender for the whole cycle. This time I've still had a sore mouth, tongue & throat but no thrush. I manage it by drinking about 3 litres a day of either warm/hot drinks - mainly green tea or redbush, eating ice lollies, drinking soup. I clean my teeth three times a day, use Difflam twice as standard and when it's really sore up it to 4-5 times and gargle with it too. None of this gets rid of it but it does make it manageable. I think drinking gallons is the key for me.
My feet aren't sore particularly but the skin is peeling off my feet so I'm slathering them in moisturiser. Is your heel pain skin related or something else? I've had sort of muscle/bone ache in my knees which is weird. I'm not on the injections so it's not those. Managed that with ibuprofen when I've needed it but it is decidedly odd. Woken me up at times.
Never apologise for moaning, we all have bad days/weeks and that's the beauty of the forum - there's bound to be someone who can pick us up when we're down. It's always worth remembering that the chemo drugs themselves with give us days of being down as a side effect, aside from the general crappiness of the situation. I've found it quite helpful when I've been really miserable to see it as a drug side effect. That knowledge helps me to know it will pass.
Hope you have a better day tomorrow
Ah, not to mention I seem to have lost SO much hair! Even though I am cold capping... I think must have lost about 60%.. So distressing...
Not been here in a while.... To be honest, I've been feeling a bit low, and it's so hard to keep the spark going with two boisterous boys!
It's been about 8 days since my second FEC, and I was less sick than last time. But days of bloatiness and constipation. That has now made way for a very very sore mouth and throat. It's been like this for almost a week, and just seems to be getting worse. Even took it to the GP yesterday and got some mouthwash, but still no improvement. Also tried Bicarbonate of Soda wash, Bonjela gell... Nothing helps. I know it sounds like a minor side effect, but it's really making me miserable. Such pain! I can't sleep because of it, speaking is painful, and I wont even mention food. Anyone experience with this?
Weirdly, I now also have pain in my left foot/heel, and it hurts to stand on it. Not sure if it's related, but a bit weird.
Sorry, this was my moan for today.
Hope everybody's doing well.
I have the filgrastim injections to do and hate hate hate them. Have to admit that I completely wimped out and got my hubby to do them! I dread them more than the Zoladex implants I'm having even though the needle is tiny by comparison - I think it's the combination of having to do them at home and doing them when I'm feeling the most low from the chemo drugs.
I did try listening to a comedy radio show to distract me but found that if I giggled my tummy wobbled too much and hubby couldn't do the injection! 🙂
I believe that you can get a district nurse to do the injections, so you could look into that. They'd come to your home to do it (I think) but you'd had to work around their schedule. It might be worth exploring this with your GP if you can't get used to doing them yourself - I don't know how you set this up as I haven't looked into it, it was just mentioned to me as an option by my chemo nurse.
You could also try relaxation techniques to get into a 'good place' before you do it, or perhaps visualition exercises. I thought all this was mumbo jumbo until I did hypnobirthing and I really found it good.
Another possible option is to get some emla cream. I have this to use before my zoladex implants, though I haven't tried it yet. It's a cream that you apply a while before you do the injection and it numbs the area you're going to inject - so you'll still have to see the needle but won't feel it (well, that's the theory anyway). I haven't enquired about whether or not this should be used with other types of injections, but I can't see why not.
None of which makes it any less crappy of course, but might help!
So glad all is being adjusted so things become easier for you.
I have been given Lansoprazole from the outset and I have been told to take 1 casule every morning 30 - 60 minutes before I have my first meal. And I take it every day - chemo day, and straight after. So there seems to be no reason for you not to take it - however I am not sure whether it will work when you have already eaten?! Perhaps read the accompanying instruction leaflet?
The Lanzoprazole is fine for today. The sooner you get on top of the heartburn, the better.
I got very windy last time too! Not just burping, sadly 😉 Hope the new antiemetics make the difference. The change in mine revolutionised my last cycle.
Hope you get some sleep,
just an update: had 2nd EC today, and the combination of a competent nurse (bless her!) and wearing leg warmers on my arms and gloves on my hands, as well as drinking lots, really made a difference: she found a good veign first try, things went in fast, much less trauma and uncertainty. Definitely doing that again.
Off to sleep now, if the steroids don't mess it up.
Oh and I asked the competent nurse about the herbal supplements: she said cranberry pills to be avoided because they might cause kidneys to be over-active and remove chemo products too soon, valerian to be avoided because of possible liver side effects. She said cranberry juice, turmeric and fenugreek in curries are fine, just as Belle said. Relief!
I've lost at least 50% of my hair and developed a very thin covering on the crown now. Used the CC on all 4 chemos so far. I did have a LOT of hair though.
My scalp is far too sensitive to use a paddle brush (which I did before). Hopefully this will be better once chemo ends
That said I am happy to have any hair left and grateful for the cool cap. On the T & H hair loss (at least for me) has slowed.
It is perhaps a little dry, but I only say that because it's a bit itchy (which could be part of the soreness from the chemo, so not necessarily an indication of dryness) but the hair itself doesn't feel dry.
But I think you're right about not washing it - I can't see any reason why this would be a bad thing to do.
Incidentally, I've found some good advice from the NHS on post-chemo hair care (http://www.nhs.uk/ipgmedia/national/my%20new%20hair/assets/mynewhair-haircareaftercancertreatment8pa...) which talks about the oils to use.
How are you finding the cold capping is going? I reckon I've lost about 50% of my hair so far, but I'm hoping to continue with the cold cap even if just to protect the regrowth.
There are a lot of different types of meds that our doctors could be prescribing for us for sickness. There are at least 5 different pathways that could be treated in the body so different drugs may be needed as we don't know which one it needs to act on.
I've used Metoclopramide, Dexamethasone, Ondansetron and Emend and my doctor has just added
Emend was promised as the "all singing all dancing cure" but did nothing for my nausea. This tells me i need another drug for another pathway.
Cycilizine is helping it is not yet under complete control yet and that is 3 months into Chemo treatment.
Maybe for some of us a wide range of different things is needed?