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June 2016 starters?

Belle
Member

Re: June 2016 starters?

Hi Millasmummy,

I've gone bald all day today except when a sun hat was absolutely necessary! I now have ice packs sitting on my head and on the back of my neck with a mini fan blowing in my face and I'm still melting!

Are you back for more poison on thursday? I'm doing number 3 FEC then - bloods & onc appt tomorrow. Need to discuss family history in some detail as have just found out some more choice details - lovely! Breast cancer, the gift that keeps on giving!

B x
bagpus
Member

Re: June 2016 starters?

Hi Rosie,

 

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?!

 

x

Millasmummy
Member

Re: June 2016 starters?

Hi Ladies, flippin heck how hot is it today!! I've been at work and didn't wear my wig as just knew I wouldn't be able to stand it, (didn't think colleagues would be able to handle me whipping it off) so I wore a little cotton hat and couldn't wait to get home to take it off and put my head in the fridge! X
RosieFlower
Member

Re: June 2016 starters?

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.

 

Rosie

bagpus
Member

Re: June 2016 starters?

Hi popkit50,

 

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.

 

x

popkit50
Member

Re: June 2016 starters?

Hi Bagpus

Thanks for your reply. We must be having our third FEC around the same time. You've made me decide to carry on with the coldcap. I found it less painful the second time but maybe that's because I was more prepared for it & took painkillers beforehand.
A friend who went through it last year said its really important to keep an eye on the temperature gauge, to make sure it stays around -6 to -8 degrees as any higher and it's not cold enough. However I mentioned this to my chemo nurse and she disagreed and said -5 was the recommended. So I did worry that maybe it hadn't been cold enough?!
Let's compare notes after 3rd go! I do think you are right though that everyone is different as it has a lot to do with hairtype and how our bodies react differently to the drugs.
X
bagpus
Member

Re: June 2016 starters?

Hi popkit50,

 

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.

 

x

bagpus
Member

Re: June 2016 starters?

Hi Marije,

 

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

 

 

 

Anon16
Member

Re: June 2016 starters?

Two annoyances from my day:
1. Took my daughter swimming and may be my imagination but people were avoiding me in the pool and staring loads. It's just hair - well lack of it.
2. Wore my wig for the rest of the day - how hot!!!
RosieFlower
Member

Re: June 2016 starters?

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

xx

Sue H-S
Community Champion

Re: June 2016 starters?

Hi

just found this - might be of help in the meanwhile..

QUOTE

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.

END QUOTE

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.

Hugs

Sue xxx

 

 

On a diversion
Member

Re: June 2016 starters?

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

 

 

popkit50
Member

Re: June 2016 starters?

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

 

 

Anon16
Member

Re: June 2016 starters?

Can recommend pineapple juice lollies too - but beware toddler like them too!! I had mine stolen lol
Belle
Member

Re: June 2016 starters?

Hi Marije,

When I called my helpline, it was the out of hours gp service I was referred to and then I went to the local walk in centre but the helpline sorted it all out so I didn't have to sit and wait for ages. It was brilliant. Really good service.

B x
RosieFlower
Member

Re: June 2016 starters?

Hi Marjie
I am going to try and keep cold capping, though am aware having less coverage on the scalp may make CC more uncomfortable next time. Also my BC nurse said, hair loss slows down by FEC 3, and by chemo 5 hair starts to grow back as hair follicles become resistant to being bashed by chemo, and I guess trying to retain some hair is better than nothing.

Are you sucking or eating pineapple chunks as that's meant to be soothing and an anti-inflammatory for the mouth?
xx
Marije
Member

Re: June 2016 starters?

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? 

 

 

Xxx

Belle
Member

Re: June 2016 starters?

I'm sorry Rosie, I'm afraid I don't know what's in the cream 😞 I can try and find out but not till next week. If they're forthcoming, I'll let you know.

B x
RosieFlower
Member

Re: June 2016 starters?

Hi B

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 

Rosie xx

Sue H-S
Community Champion

Re: June 2016 starters?

Hi Marije,

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.

Hugs

Sue xxx

Belle
Member

Re: June 2016 starters?

Morning Rosie,

The vein ache is still very much there. I've got a cream from the complementary therapy team that the aromatherapist mixed up for me. I have no idea if it will do any good but am more than happy to try as it smells delicious. One of their colleague's used it last year for chemo veins to good effect so it has to be worth a shot. I'm seeing my oncologist on Wednesday prior to chemo 3 on Thursday so will mention the vein situation to him.

My lips are also sore & dry - been using lip balm like it's going out of fashion!

B x
RosieFlower
Member

Re: June 2016 starters?

Hi B
Was wondering how the vein ache is? I'm 8 days post 2nd FEC and feel tightness if I stretch my lower arm out. It feels like a pulling from above wrist to nearly the elbow - wondered if yours had settled yet? Rosie x
RosieFlower
Member

Re: June 2016 starters?

Hi Majrie

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

haz25a
Member

Re: June 2016 starters?

Belle, Not at all! I thought, hey I recognise that face. Lol!

Well done you. xx
bagpus
Member

Re: June 2016 starters?

Hi Marije,

 

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

Belle
Member

Re: June 2016 starters?

Oh poor you! I got featured by Cancer Research & I'm popping up all over the place! 😱
haz25a
Member

Re: June 2016 starters?

Hi,

 

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.Man Wink

 

H.x

Belle
Member

Re: June 2016 starters?

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!

 

Sleep well,

B x

Marije
Member

Re: June 2016 starters?

Thank you Belle.
Yes, it's weird for me to feel so low, I usually manage to at least act, haha! I suppose it's because hubby and me have been bickering too. He said he would look after the boys, but in reality he still seems to expect me to be around, or 'at least take 1', as 2 at the same time is so difficult'! Well yeah, I KNOW. And no way he can then do anything else.. No cups of tea, no cooking (he doesnt even think about it), no cleaning, laundry.. So I still do 'all the other stuff'. And him moaning he's so tired etc etc! (Granted, he does get up at night when the youngest wakes up).
Men...

The pain in heel doesnt seem skin related, more bone/muscle..
I really hope this mouth/throat thing passes soon. No mattter what I try the throat just gets sorer and the ulcers bigger!
Ok, off to bed now, with a sleeping pill (husband has decided to cut the laminate flooring and do some drilling tonight while everyone is in bed. He genuinly thinks it's a good idea, 'as it's the only chance I got'.. ). Have I mentioned he's getting on my nerves at the moment? Lol.

Thanks for letting me moan. Tomorrow I'll give myself a kick up the bum! X
Belle
Member

Re: June 2016 starters?

Hi Marije,

 

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

 

B x

Anon16
Member

Re: June 2016 starters?

Oh no, not sure what to suggest then. Hair loss is really hard isn't it. We are all here or you hun, rant away xxx
Marije
Member

Re: June 2016 starters?

Yes, it's Difflam.. But doesnt seem to make a difference.. Thanks for your reply x
Marije
Member

Re: June 2016 starters?

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...

Anon16
Member

Re: June 2016 starters?

What mouthwash did they give you. I've got Difflam oral rinse but find Aldi mouthwash is doing the trick as.its pretty powerful. Hope your ok hun xx
Marije
Member

Re: June 2016 starters?

Hi all,

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. 

 

Xxx

netti37
Member

Re: June 2016 starters?

Had 2nd on Tues. Mild se's no complaints really. Just got reflux and my vein is sore this time. Feel a bit fuzzy headed and not quite myself. Been out to fruit farm for fresh strawberries with the girls and hubby. Will enjoy those later. Hope your all feeling ok ladies xx
Anon16
Member

Re: June 2016 starters?

Another one down is always the best thing. I can't believe I'm already 2/7 done, feel like I'm getting somewhere at least despite the side effects. Hope you are all well.

Hubby stabs me with the needle while I'm still asleep each morning, think he enjoys it!!!
Emma111
Member

Re: June 2016 starters?

Well second FEC for me done and dusted yest! Horrible night which is to be expected, guessing by what everyone else is going through im no doffered to anyone else so cant complain. But hurray, another one to tick off the list and shrink this ****!!
Hope everyone continues to get better through their cycle and are staying positive xx
bagpus
Member

Re: June 2016 starters?

Hi,

 

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!

 

x

sonyacheet
Member

Re: June 2016 starters?

Hi ladies.
Thanks for the advice. I took the lansoprazole and went to bed for a bit. Then I got up and had a brew and a piece of toast. I went to bed again about 3 hours later. Diddnt sleep much due to the steroids I suppose but I've got up this morning feeling OK. I've eaten rice krispies and toast and feeling quite good at the mo. Lollies are out again to keep my fluids up. I'm still on the steroids for 2 days so when they finish I may have to go on the cyclizine. I will see how I feel. Does anyone else hate doing the injections? I hate them but know they are essential for my health and wellbeing.
Hope you are all doing OK this morning xx
Belle
Member

Re: June 2016 starters?

It will work Sue, it's just optimum to take it prior to a meal. However, I take mine morning & evening and to space them 12 hours apart means I can't always get them both prior to a meal. I take them when I can to be most consistent and they definitely still work - phew!

B x
Sue H-S
Community Champion

Re: June 2016 starters?

Hi Sonyacheet,

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?

Hugs

Sue xxx

Belle
Member

Re: June 2016 starters?

Hi Sonya,

 

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,

 

B x

sonyacheet
Member

Re: June 2016 starters?

Hi ladies.
Just back from my 2nd EC, it was over much faster than last time. The ward was running an hour late but once I was upstairs i was called straight away. My Oncologist had changed my pre meds to netupitant and palonosetron which is rather a big capsule which has 3 little tablets in it. I wondered why it felt so heavy and it made a noise as I gave it a shake. I had emend last time. To help this time I have been given dexamethazone for 2 days then I have cyclizine. He has also given me lansoprazole as I had really bad heartburn and sickness last time. I'm feeling very tired now.
I've drank loads today and now I keep burping all the time. Does anyone know if I can start the lansoprazole today? Or should I wait till tomorrow. It's only because it feels like I have heartburn again.
I had Lancashire hotpot at the hospital before I came home so it could be that?
My hair is 90% gone now and my head still has its tender moments but it's not too bad. The nurse said to rub moisturising cream or e45 on it when it feels sore. Love Sonya xx
Julia S
Member

Re: June 2016 starters?

Hi All,

 

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!

 

Cheers,

Julia

Emma111
Member

Re: June 2016 starters?

Hi Bagpuss

I had my first FEC on 22nd June, 2nd one is tomorrow. I didnt cold cap and hair started to shed on day 18 but I still have a bit. I havent washed my hair since first FEC and my head doesn't feel dry or irritated and not too oily either if that helps xx
Charissecarson
Member

Re: June 2016 starters?

Thanks floppy, yeah I heard about emend so am hoping to change to that but good to know there are a few other options too.

Bagpuss in terms of hair loss I can't see why not washing it would be a bad thing. Means you won't be pulling at it etc. I didn't cold cap and have shaved my head but found that my scalp completely dried out and was really itchy and pretty painful so I now massage e45 cream into my head and the pain and the hair loss has actually stopped so maybe it's a miracle cure for hair loss. I still have my number 1 that I shaved it to after it started falling out 😳

Xx
Flopsy
Member

Re: June 2016 starters?

Hi Bagpuss,

 

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.

 

bagpus
Member

Re: June 2016 starters?

Hi Flopsy,

 

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.

Flopsy
Member

Re: June 2016 starters?

Hi Charisse,

 

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

Cyclizine.

 

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?