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Starting chemo in September???

ScottyB
Member

Re: Starting chemo in September???

Hi All
I haven't been on here in ages posting the odd boy on Facebook and them forget about on here in fact I find I can forget an awful lot at the moment stupid foggy chemo brain evened sentence it just all goes blank!!
Well I'm now half way through the FEC on day 3 had a real struggle for sleep fri and sat was horrific but last night I cracked it got up today feel less energy than usual so just taking it easy.
Hope everyone else on here is getting on ok think at times we all have those moments of anxiousness on what is going to happen next.
Xxx
Pots14
Member

Re: Starting chemo in September???

Hi,

 

Nikki49 - no, not on facebook - just not for me for a variety of reasons, so am very grateful for those of you popping in to let us know what might be coming up and how to cope with it (nettew). Am very worried about tax 'cos with every fec I've felt worse espec. energywise (no energy to feel/do anything; feeling better today and know that every day until next week will get a bit better). So how's it with tax?

 

the - on fec I've had dex 2mgs to take 3 x per day for 3 days; for the tax (coming up on 19th nov barbs) I've got 8mgs to take twice for 3 days starting the day before chemo.

 

If any of you have tried the go cake - I only really like it when its hot with butter, but have discovered it's lovely as a substitute for bread in bread and butter pudding - whole family loved it, even teenager!

 

Love to all, Pots

 

 

The
Member

Re: Starting chemo in September???

Hi I'm in October Optimists and have been reading your thread. Just wanted to ask I'm due my 3rd FEC Thursday and do they up your steroids as I only have 2 x2 for 3 days and that's enough for me , thanks Tracy x
NetteW
Member

Re: Starting chemo in September???

Good luck nikki tomorrow.
I found the transition difficult particularly the day before I got quite worked up. It turned out to be a complete waste of energy as every thing went well. My nails have been fine and few of july's have complain of nail problems. Although I will always choose prevention over cure.
Just bobbed in to wish you all well going into T.
I start rads on Wed and I feel like I have been let out of a cage. It is brillant and there is life after chemo. I have bought a new mx swimsuit and I am going to start looking at booking holidays for next year. Winter sun here we come.
Best wishes to you all Nette x
Nikki49
Member

Re: Starting chemo in September???

Fec 3, Day 21
Got a busy day today, doing those last minute jobs before tomorrow's poisoning. I've just had breakfast followed by 4 steroids so hopefully that will give me the boost to get the shopping & ironing done. Although with another 4 steroids due lunch time I'm thinking I'm gonna be like the Duracell bunny.... Hope I can sleep tonight!
Tomorrows poison of choice is Taxotere, although there is no medical proof to back the idea up it is thought that ultra violet light reacts with T which can effect your nails, so I have painted my finger & toe nails midnight blue with some glitter on the tips of my finger nails, I will try to keep my feet covered with socks, shoes,slippers etc and when out of the house during daylight hours I'm going to try to keep gloves on, hopefully this will prevent me losing my nails.
I don't post here often as it seems everyone is on fb, I will dip in now and again as I think it helps others coming up behind us know what's coming & how we've coped with it.
Pots I hope you are doing ok, I don't think I've seen you on fb. Is there anyone else here not on fb?
Hope a you all have a great day, take care xx
Barbarella63
Member

Re: Starting chemo in September???

Pots it seems FEC3 has knocked most of us for six!! I feel your pain ( literally) over the poo saga I am the same and it's blooming murder. I've tried prunes,juicing,flax seeds,Lactulose,dulcolax etc etc and still I have problems grrrrr have a good dose of "farmer Giles" too just to put the icing on the cake! I too am looking forward to the tax trots, will prob regret that comment when I get them tho! Sorry to hear you're Neutropenic again, how rubbishy for you, I have escaped that one thank FEC ( so far...touching wood!)) when are you up again??i need to update my list!
hawkie
Member

Re: Starting chemo in September???

You take care Pots xxxx

Pots14
Member

Re: Starting chemo in September???

#3 day 10

Hi everyone, not been on for a few days as no energy at all. Am finding fatigue worse and longer with every cycle.

 

Am so glad others are talking about poo! Got bunged up a bit with 2nd cycle, and "go cake" recipe worked a treat; this time 9 days and oh my God - never sat on a loo so long unable to get up and coming over faint. Suppositories a godsend and am now on the laxigo which makes me retch every time I take it. I never want to go through that again! Chemo nurse advised me to pour kettle of boiling water down the loo and raise my feet on a stool to help get into a better postion. Sounds silly - but I recommend it. I would have tried anything. Still not fully ok, but much happier than have been. Right now can't wait for taxtrots - they sound marvellous!

 

Neutropenic again, but so far am not back in hospital - keeping an eye on the old temperature and keeping my fingers crossed.Keep telling myself am half way through, so glad fec is over.

 

Can't see the the light at the end of this tunnel yet, but family are being wonderful. they all seem to know now out what's ok to do and say and what and when it isn't. Emotions are somewhat all over the place, but gad I've got the enegy to have some emoition!  Very puffed. Love to all of you. Onwards and upwards for those of you with some energy and for those of you who haven't cuddle up on the sofa or in bedand be kind to yourselves. Now I've some energy thinking of you all -Pots

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Re: Starting chemo in September???

Thanks for your words of advice during Tax,I had my first one last week the S/E were the bones cannot explain how low it has made me feel but each treatment has its draw backs I will try to keep in mind the tips you have passed on it is good we can support one another take care.
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Re: Starting chemo in September???

Thanks Sakura1971 - i start Tax tomorrow & have been a bit worried as i had minimal SE's with FEC - here's hoping that that will continue but thanks for all the advise & tips - keep well & may you be clear of this horrible disease very soon 🙂
piggsytrotter
Member

Re: Starting chemo in September???

Hi Nikki and the rest of the Septemberists

I got my gel nail polish from Boots. I've got a Collection Lasting Gel Colour and Maybelline Super Stay Gel Nail Colour.They both last much longer than ordinary nail polish. It's annoying that different units give different advice regarding nails. My unit advised that nail polish would help prevent discolouration and possibly also nails lifting, Sakura's advised the opposite. As with all these things, it seem it's up to the individual i.e. you and me! Good luck to anyone starting Tax, it's quite different to FEC but again there's no way of knowing which SE you'll get except fatigue seems to be across the board. xx

Nikki49
Member

Re: Starting chemo in September???

Thank you for popping in to give us advice and tips, very kind of you and good luck for your last dunking this week may your se's be little ones x
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Re: Starting chemo in September???

Good morning ladies

 

Just popping over from July Junkies to share my experience of Tax with you 🙂

 

I am just about to have my 3rd and last session this week and am pleased to say I have not had any of the bone pain that a lot of people get. Instead I got Palmar Plantar syndrome. It is caused when the chemo drugs seep out of the capilliaries in your hands and feet and damage your skin. Hands and feet become sore, very red, cracked and swollen.

I have found a way to keep it at bay/reduce these effects which I would like to share with you just in case anyone gets it (I am told it is a rare reaction so hopefully you won't get it!). When you start to feel tingling/heat in hands or feet or you see them going a red, almost beetroot stained colour - get hold of some cold bottles of water or canned drinks and hold them for 15 minutes. Put feet on frozen bag of peas wrapped in teatowel. The cold helps to stop the reaction and closes the capilliaries and pores back up.

 

Keep repeating process whenever hands and feet start to play up again. Also avoid hot water/washing dishes/baths etc as this opens pores and makes it worse.

 

With regards to nails, my unit told me not to paint my nails as it hides infections. I haven't put anything on them other than my normal hand cream and I have no discolouring or lifting from nail bed. Hopefully this will continue after my last session 🙂

 

Hair appears to be making a tentative go at growing as the wisps I was left with after the FEC and a haircut are longer now.

 

I have constipation issues every cycle and find that eating prunes each evening and taking lactulose sorts this. If things get a little bit obstinate then I take some Laxido (nice and gentle relef as opposed to the slightly explosive ducolax that one doctor gave me!!)

 

I have worked throughout my chemo with the exception of a few days here and there and a week when the palmar plantar first hit me.

 

Best of luck ladies, and dont forget to come visit the junkies if you have any more questions. The ladies there are lovely and have lots of advice to share 🙂

michy1612
Member

Re: Starting chemo in September???

Thanks girls would love to join your fb page will pm u my name x
hawkie
Member

Re: Starting chemo in September???

HI Michelle, sorry you find yourself here but you have come to the right place.  Most of us are on the facebook page if you want to join that too.  Just private message one of us your name and we will sort you out.  Its a great place to share your experiences, we do have a laugh too but are helping each other thru this crappy journey no end!  Where are you up to in your chemo.  Ive got my 3rd docetaxel on wednesday along side herceptin and perjeata.  Take care and hope to speak to you soon.  Jayne xx

Cinderssarah
Member

Re: Starting chemo in September???

Hi michy1612 and welcome. Its a little quiet over here as we have a facebook group its a secret group but you are more than welcome to join. Its full of fab people all in the same boat and it raises a giggle or two along the way 😄
Sarah
michy1612
Member

Re: Starting chemo in September???

Hi all is this a chemo sep thread?.Started mines in sep still trying to find my way round this site and was wondering if i could join?.Could do with chatting to others going through chemo at same time as me.

Thanks!Heart

Michelle

NetteW
Member

Re: Starting chemo in September???

Hi Nicki
I get my gell nails done at a salon, they use a ultraviolet lamp to set it and it is completely dry when you leave. According to salon it lasts 2 weeks. I had mine redone after 3 weeks and I could have gone longer. The main problem is growth you can back fill with a matching polish. You also need to know that they use heat to remove so if you are not being redone there may be a charge. I have given up drink and the hairdresser and in fact most activities so a weekly massage and having my nails done, always toes and now fingers, is my chemo treat.
It sounded like piggsy did her own I will wait to see if this is correct.
Pamper yourself a little if you can we all deserve it.
Good luck to you all going into T. I was very nervous but really I think on the whole it is easier than FEC. The time also went quicker.
Nette x
Barbarella63
Member

Re: Starting chemo in September???

Thanks girls for your comments on nails and hair!!! Hopefully Tax will not be too cruel to us and we will hang onto them!! Thnk I'll be getting some gel polish and almond oil!! Xx
piggsytrotter
Member

Re: Starting chemo in September???

Hi Nikki and the rest of you September gals

I'm nearly at the end of second cycle of T and this has been so much better than the first.

My unit advised me from day 1 of FEC to paint my nails a solid colour to prevent light discolouring them. So I have been. I already used a product called Nail Magic because my nails split and are ridged. It really strengthens them. So I start with almond oil which I paint on and rub in, at least a couple of times to make sure it soaks in. Then 2 coats of nail magic and then 2 coats of a gel nail varnish. It lasts much longer than ordinary polish. Although my nails have felt sore for the first 10 days of each T they haven't started lifting so far. I have noticed a faint horizontal brown line across my nails, 2 showing so far and I imagine there will eventually be 6 as this is the result of the chemo.

Regarding hair, mine was gone by day 18 of first FEC but I did notice at the end of first cycle of T a bit of fuzz which has got a tiny bit longer/thicker in the last two weeks.

I should say I have been lucky with very few or severe SEs but am happy to share if anyone wants to know anything else.

Try not to worry too much, the fear of the unknown is far worse than the reality. xxx

 

NetteW
Member

Re: Starting chemo in September???

Just read some of your comments on oral thrush. I have made a personal study of it. I posted my conclusions on Oct 6 currently page 11 of 61 on July Junkies stream
Hope it helps
Nette x
NetteW
Member

Re: Starting chemo in September???

Hi Nikki and all you September babs,
I am FEC done T#3 Done day 11
In answer to you questions to July Junkies
Nails - I got no advise at my unit and my nails have been ok. They did start to go a little thin after T2 so I had some gell varnish put on and after 3 weeks I have had them redone for another 3 weeks. My toes are always painted and they are normal.
I have lost a bit more head hair during T. During FEC I had a grade 2 and I still look like a white orangutan.
During T I have lost my eyebrows and eyelashs. The brows I pencil in with the brow pencil with a brush end. I got at the Look Good Feel Better session.
My worst side effects have been severe fatigue days 4 to 7 when I have virtually had to take to my bed.
I have also had metal mouth which I can only say means food is so horrid I have managed to loose a bit more weight. Bonus.
Lemon has been my life line in getting enough fluids down.
Good luck girls you are half way there.
I have just had my rad tatto done and my dates. 3 of us JJ are at the same hospital at approx the same time. We are going to meet up. To me anyway the forum has been a life line.
All the best Nette x
Barbarella63
Member

Re: Starting chemo in September???

Hi pots glad you're back safe and sound, the thrush sounds vile, and everyone that is suffering with it has my utmost sympathy! I am however looking forward to the tax trots as I'm in the constipation camp and I'm not loving the piles groan!
Nikki49
Member

Re: Starting chemo in September???

Fec3 Day11
Morning Pots, pleased to hear round 3 has been kinder to you this time. I got nystatin from gp the day I spotted the white mouth on Saturday, mouth is no longer white but is still sore and I've still got that vile taste, like you I keep nibbling to take the taste away.... I'm gonna be the size of a mountain if this keeps up and there was me thinking this chemo lark was a sure fire weight loss programme lol
Tax trots will make a change from the constipation I've had each cycle... I'm sick of prune juice & a fibre diet.
I guess I will just have to switch from sennakot to Imodium on the next cycle, I also heard that you'd be really unlucky to suffer from any nausea on Tax, here's hoping eh?
Take care x
Pots14
Member

Re: Starting chemo in September???

#3 day4

Hi all,

tired, but sleep pattern up the swaney - keep thinking about work. OH off this wk 'cos of half term

 

little nausea this tme thank God - more like first treatment

Nicky49, - I've had trouble with my mouth every cycle so far, - oral thrush with cycle 2 which made me retch ever time I did my teeth - got some nystatin from gp - cleared up in tme to start again. Sounds as if yours has really taken hold - don't struggle - get some meds! Not found anything apart from continuously nibbling to take away the foul taste - hoping it doesn't happen with tax - mind you with tax trots to look forward to..........

Pots

 

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Re: Starting chemo in September???

Hi had my Tax chemo 4 yesterday felt fine after but got the trots this morning legs feeling sluggish good luck to the girls up for Friday xx jenny
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Re: Starting chemo in September???

Good luck Avonlady. Hope everything goes well with the Tax tomorrow. I'll be thinking of you. xxx
Barbarella63
Member

Re: Starting chemo in September???

Tomorrow's luck lady with the hot date is our very own Avonlady, good luck Jenny fingers crossed for a reasonable first Tax xxxxx
Nikki49
Member

Re: Starting chemo in September???

Fec 3 Day 7
Good luck at the bar tomorrow girls.
My se's this time have been, on the whole, much better than the first 2 times, unfortunately this time I've got oral thrush and omg my mouth is so sore it's just taken me half an hour to eat a yoghurt but I'll take that over feeling sick any time.
Take care xx
elma55
Member

Re: Starting chemo in September???

Good luck for tomorrow Pots, Austgirl, Nature girl and Lulu, may any side effects pass you by xx

 

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Re: Starting chemo in September???

Hi girls good luck for tomorrow all you lovely ladies.xx
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Re: Starting chemo in September???

Good evening Stars
Just a quick message to wish all the lovely ladies up at the bar tomorrow good luck, hope everything goes well and you escape the SE's.
Also lots of love to Frenchfancy currently holed up courtesy of the NHS. Hope you pick up quickly and you're back home soon.
Love and hugs to all Stars everwhere. Keep twinkling! xx
Barbarella63
Member

Re: Starting chemo in September???

Evening girls, just to fill you in, the lovely French fancy is currently "inside" due to the dreaded neutropenia, hopefully she will be sorted soon as and released sharpish! Tomorrow's unlucky peeps with the hot date are

Pots14
Austigirl
Nature girl
Lulu

Good luck gang may all you side effects be little ones....well we can dream can't we? Xxxx
Butterfly318
Member

Re: Starting chemo in September???

Hi Pots.

 

Just a thought.  I had Chemo from November 2012 to February 2013 and whilst i did try cold cap it wasn't successful for me and i lost all my hair pretty early on  It was long thick auburn so was devastated.  I had two lovely wigs from Dimples (Elle and Caroline).  I know they always looked fine but were not always easy to wear particularly as i like to walk outside and i was wearing the wig throughout the winter months.  I recall one Sunday where the wind blew the hair in my eyes and one eye was seriously scratched. Ouch.......

I purchased a fringe (from Headstrong about £5) which was great under hats and so much easier to wear, it just looked like i had my hair tied back / tucked in the hat.  Great for walking / supermarket etc.

 

Hang on in there girls you are all doing great.   Gilly x

Lulu34
Member

Re: Starting chemo in September???

hello stars just popping in to say hiya as most of now on FB but dont want to neglect you guys either.

pots glad wiggy clung on in the wind... thing with the weather thats coming is glad you did a trial run.

im up again on the 29th too for no 5 of 18.... hope it goes well and its always an achievement to make it halfway,

good luck

sam take it easy and hope your feeling a wee bit better for the weekend.

ally good to hear the cold cap is being effective for you and well done finishing fec... if your on tax next you will find it doesnt cause nausea but can make you feel really tired and listless and some folk get a sore mouth or the tax trots... you are usually ok for about 3 or 4 days and then the effects start.... but some folk actually have very little problems with it.

take care girls xxx
Barbarella63
Member

Re: Starting chemo in September???

Pots I shall update the list my lovely! Glad you managed to get to the sea how lovely, blow some cobwebs away but not the wig thankfully lol hope your picc settles down, just another problem you could do without m sure! I'm now day 4 after last FEC and like ff I've got a rash, got some Piriton from the doc, it's not itch and I don't have a temp so fingers crossed it won't escalate! Got a horrid taste in my mouth this time too which us a bit of a pain but hey ho! Hope all stars are having a good a day as possible, Lulu only one up at the cocktail lounge today hopefully doing ok xxxxx
Pots14
Member

Re: Starting chemo in September???

Hi all,

 

#2 day 17

tested wig by sea-side on Sunday - very windy and wet. Did feel it moving up, but reassured by OH it looked fine. Feel its been well and truly tested! Still using scarves most of the time (easier!), but lovely to have wig for looking normal

 

Frenchfancy - picc being stuck sounds dodgy. D/nurses still having probs, but managing to flush with a 20ml syringe and a bit of effort. Hope yours is ok

 

Janey - I didn't try coldcap, but losing my hair was the least of my worries. My hair has thinned a lot (makes me look quite old and I couldn't go out without anything), but I do have enough left so that with a hat you can see long hair at the bottom (had very thick hair to start with). Lady garden somewhat pruned, but still hanging on in there! I would say if you're worried about losing your hair, try the cold cap - what have you got to lose?

 

Brillant petition - signed up already!

 

My next chemo's on tues 29th - dreading it to be honest, but at least will be over the half-way mark, then will be counting down.

 

Good Luck to all......................

 

Pots

frenchfancy
Member

Re: Starting chemo in September???

Signed the petition as well!!

Thought I was doing ok this time round. 3rd & final FEC for me too Nikki. Ok for first couple of days, moving around better, eating much more than previously but seem to have come out in a 'glow' overnight! What's that all about? Waiting for a call from my nurses but hopefully no visit to Hotel NHS required!

Also planning for at least a few days away (week if we can manage it) next weekend. Would be lovely to just spend some quality time with hubby before the next lot starts. And have also got my Look Good Feel Better session to look forward to, providing the extra dose of steroids don't mess it up!

Hope everyone is doing ok and any se's are easing off slowly. Have a lovely day to anyone venturing outside to do nice things xx
Nikki49
Member

Re: Starting chemo in September???

Fec 3, Day 3
I've signed the partition.
Yippe I'm halfway through, feeling quite good this time albeit a little more tired this time, typical that this being my last FEC I now seem to have sussed out how to stay on top of the nausea which is sofa surf, copious amounts of water & take all the drugs they give you even the as & when's before you start feeling queasy.
Are all the stars now on Facebook now, if not I'll try to pop on here more often.
Hope all stars recently dunked are managing their se's as well as me and everyone else I hoe you enjoy the day xx
Barbarella63
Member

Re: Starting chemo in September???

I've signed it
The
Member

Re: Starting chemo in September???

Found this in another thread. It has 520 signatures, but think we can do better than that!

Free dental checkups and sight tests for cancer patients

Responsible department: Department of Health
All cancer patients should receive free dental check-ups and free sight tests for five years, i.e. during all treatment, as per the prescription exemption certificate received. Especially as chemotherapy is known to cause dental problems, and tamoxifen is known to cause sight problems.

Copy and paste the link below into your address bar:
http://epetitions.direct.gov.uk/petitions/53515

Pass it on!!!
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Re: Starting chemo in September???

Hi Janey

 

I have just had my 3rd & final FEC 🙂 and have used the cold cap each time and still have a decent head of hair with no bald patches. I did have really thick hair to start with so i think that did help. I would say that it is not comfortable but is bearable if you get through the 1st 10 minutes. The rest is down to boredom as it does extend the treatment session. My oncologist encoraged me to try it and advised that if i couldn't get on with it to then drop it.

 

I guess my advice is try for the 1st session & see how you get on.

 

Good luck xx

samjs
Member

Re: Starting chemo in September???

Hi stars,

Feeling a bit more nauseous this time but getting there.

Pots I wore my wig  out on Saturday night at an event for nearly 200 people that myself and oH had arranged. I knew I would get hugs and I wa sdreading it incase my wig flew off but it didn't. Rest assured. 

Camping on the sofa this afternoon. xx

Barbarella63
Member

Re: Starting chemo in September???

Tomorrow lucky victims are
Blue topaz
Nikki49
Lulu

Good luck girls
Lucy_BCC
Member

Re: Starting chemo in September???

KatePB
Member

Re: Starting chemo in September???

Sadly I am one of the ones who tried the scalp cooling cap.  Unfortunately for me after just twice my hair started to fall out.  My hair was fairly short but thick, I followed all the instructions given, eg weaing a hair net to sleep, having a silk pillow, wash only once a week using "simple" shampoo, combed once a day with a wide tooth comb and the rest, eg cap size, conditioner, etc, etc was up to hospital when they fitted it as you cannot tell the nurses their job.  My hair loss is the easiest of the side effects I am suffering and unless you like having a cap at -5 on your head for up to four hours I would not recommend.  I would say stay postive and if you loss your hair wear a scarf, wig, etc with a positive attitude that your hair will one day grow back.  Virtual hugs to all going through this dreadful stage of life. xx

 

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Re: Starting chemo in September???

Still not feeling 100%,so while I am still conscious I'd just like to wish tomorrow's Dunkees good luck. Hope the SE's keep well away. Lots of love to all the Stars, keep hanging on in there you beauties! xx
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Re: Starting chemo in September???

Hi Jayney, I have just had my 3rd FEC and been using the cold cap each time. I lost quite a bit of hair on the first round but hardly any on the second time, , my third was only on Friday , so don't know yet if I will lose more next time, but I am able to go out with just a headband rather than needing a wig or hats (although I have them too) . I have very fine hair and I do think people with thicker hair seem to do better, so I would really encourage you to try it. My tips would be: take paracetamol about 1/2 hour before start, as first 10 minutes are uncomfortable and some people get a headache, take a water spray bottle and conditioner (some units provide it) and make sure your hair is well dampened, right to the roots, the cap must fit firmly on the scalp, shouldn't move around, they come in different sizes so make sure it fits well, you will need it on 1/2 hour before start of chemo and 1 1/2 hours afterwards, so it does make the time longer, but I think a few hours is a small price to pay. Finally, don't make my mistake - I put my hair up in a towel turban when I first washed it, but there was a lot of loose hair and it got matted, so a lot got pulled out as I tried to untangle it! Instead, just pat it dry and if need be use a tiny amount of serum. I hope this helps and wish you well, if you have any other questions, just ask
Barbarella63
Member

Re: Starting chemo in September???

Hi jayney, I'm just back after fec3 feeling a bit groggy but thought I'd let you know I didn't use the CC but I shall chase the other girls in the group to give you their thoughts xxx barbs
Janey160359
Member

Re: Starting chemo in September???

Hi I am due to start chemo in mid November and are a member of the November newbies.
I am to have Fec x 6 over 18 weeks.
Could any of you lovely ladies tell me if the cold cap helps. I have really thick hair and I am hoping this and the cold cap will minimise the loss. Does having thick hair help at all?
I really would like my hair to hang on for the Christmas day dinner at my in laws. I am scared the kids will pull a wig off they can be quite giddy.

Thanks Janey x