starting chemo in june 2014

[Athens]

Hi Roxie

Hope the earache & throat have improved.

Take care
Athens

[Athens]

Hi Rach

Hope you do not mind me asking you and others how you are getting on with wearing a wig in this hot weather eg does it get hot & sticky and do you just wash it regularly to keep it fresh? Any tips welcome.

By the way I love the new short hair cut I got today and wish I had got it cut weeks ago so I could enjoy it for longer! I would encourage others to just bit the bullet and get hair cut. I'll probably get the number 2 shave at end of next week. My hairdresser trimmed my wig today too so all set to go with that when the time comes.

Athens

[rach72]

Hi everyone 

I'm currently on day 14 of my 1st cycle. I also had waist length hair which I had cut into a bob about 4 weeks ago. Last week I shaved it all off on a number 2 but when I got home from work tonight and took my wig off, I've got loads of bald patches! I've been dreading this since I found out I'd be having chemo, but to be honest, I'm quite relieved that this is now another big hurdle out of the way. My scalp feels really tingly, except where the bald patches are so I'll be glad when it's gone now. My 9 year old son keeps rubbing the bald spots as he says they feel so soft!

I hope that everyone is recovering from any side effects and good luck to those of you starting this week.

Big hugs to everyone.

xxxx

[swm]

Dear runner29, thank you so much, feeling much better today. Went out to see a guy locally that provides wigs and feel optimistic I can find something.
Sorry to hear you had awful bone pain. Strange how it affects us all differently.

[Athens]

Hi all

I think the crumbling with sympathy happens to many of us!

Now on Day 5 of first cycle. I had 5 hours of uninterrupted sleep last night which made a real difference as for the last few nights my sleep has been very interrupted. Maybe the sleep has helped me feel better and brighter today after being a bit muggy & off colour yesterday and Sunday. I think a bit if exercise is helping, plus doing things like going out for lunch with family. I am continuing to walk and yesterday I went to a Pilates class for the first time and I am starting a yoga class on Thursday. I am also trying to eat regularly even if not hungry and so far no bad tastes. Tomorrow I am off to get my hair cut shorter as a half way house to getting it shaved when it starts to fall out. That might be a bit emotional with my hairdresser.

The anti sickness drugs I was given were ondansetron 8mg, one twice daily for 5 doses and then the steroids, Dexamethasone, 2 twice a day. Though I was off colour a couple of days it seems to have not been too bad, though maybe there is worse to come!

Hope all are doing ok.
Athens

[Roxie65]

HI runner29

I have toiled all day as to what to do but decided that I will be really conscious gong out with my hair looking greasy like this and the chances are I may not have it in a few days. So I am going to wash it and go out with my lovely clean hair and make the most of it why I can then have a bloody good cry when I lose it!!!

Have you thought about what you are going to wear when you run if and when your hair does go?  I have two lovely wigs but dont think I could run in them and to be honest I dont want to look like a cancer patient to anyone when I am out so want something that will hide this fact from anyone who doesnt know me.  I crave being treated normal and not pitied which everyone I know has been great about but my friend who bit the bullet and went out in a scarf got so many "aww poor you comments".  I know this is only people being lovely and supportive but my strength is in normality if you know what you mean.  I tend to crumble with sympathy.

I believe your a few days ahead of me I started the 5th so you are doing well with your hair.  You probably feel as I do and probably many others that hair is our identity to the world which is why its hard to lose but when I think about it we have long flowing clean hair not this what we are putting up with lol.  So tonight a gentle wash with baby shampoo and respectful treatment and hopefully it will repay me by staying for a little longer at least lol.

I hope what you decide goes well and heres to you keeping yours for a bit longer too!

Roxie x

[runner29]

Roxie I am in exactly the same boat as you. I have very long dark hair and with each brush stroke out comes more.

I also haven't washed my hair since Saturday morning when it began to come out so at the moment I am a total greaseball at work! I really do need to wash it tonight but as you are I feel very nervous as I am trying to hold on as long as possible too.

Are you going to go ahead and wash it tonight? I originally thought that I'm going to have to, though I have just had a text from a lady that had chemo the same day as me and she has had to shave hers today as clumps came out so now I'm debating rocking the greasy look for as long as my hair is willing to cling on for.

Hope you're ok. xxx

[Roxie65]

Hi All

Yesterday I woke up with earache and sore throat caught from my daughter so now on antibiotics.  They were very good at the hospital asked me to come in just to be checked and they done blood tests to see if I had any infection.  Due to being day 12 and my immunity levels they thought antibiotics just to be on the safe side.  Can't fault the staff in the oncology ward.

Day 13 today post 1st FEC and woke up feeling much better until I brushed my hair!!  Seems to be the day its started to fall out.  I have very long blond hair and with each brush stroke came a brush full of hair, needless to say  am now going to walk the dog with hair that wont be as brushed as normal.  Need to wash it later so not sure what will happen then and am rather nervous of doing so, not sure why as I know its going to go but its like holding on to it for the longest possible time is so important lol.

Hope everyone else is having a good day!!

Roxie x

[runner29]

Thanks Julie, yes I thought of getting mine cut shorter too but I've never had short hair and didn't want to be forced into it now so never did cut it!

Ria, hope you got on ok today.

Swm glad you are starting to feel better and hope you can get meds sorted out so you don't have to go through that again. I had intense bone pain so was speaking to my doctor today to get strong painkillers that will hopefully help on chemo 2. Xxx

[Pixie100]

Sorry to hear you were so ill swm, glad you are feeling better today and hope you now have good second and third weeks. I did cold cap and have not lost any hair yet but have not lost hair from anywhere else on my body either. Scalp feels very sensitive, using a chemical free shampoo but maybe even that's too strong. Second chemo is on Friday this week, bit nervous again and hoping it goes better this time..

[swm]

Bigpumpkin you have given me so much hope, thank you.
I am trying Paxman but everyone so negative, but determined to see it through and great news
You did and it worked for you.

[swm]

Had my 1st chemo 12th June FEC 75. Used Paxman Cool Cap.
Really impressed with how everyone else is coping. I didn't fair so well and ended up as an emergency admission in hospital with uncontrollable vomiting. I think I was very unlucky.
Didn't find Cool cap too bad. Felt very sick throughout whole process though. It may have been the steriods they gave me at the beginning. Will get meds changed for next time. Emend has been mentioned.
Much improved now though and should be back to normal in a couple of days.
Keep you posted on Paxman cool cap results.

[Julie286]

Oh runner29, that's rotten. Hope you're ok and you can manage to get through to the weekend so you can deal with it when you're ready. I had thought of getting mine cut short so it was less 'painful' when it happens - but haven't even managed to do that. Sending you big hugs. X

[runner29]

Argh so the hairloss seems to have begun, thought more than usual was coming out when drying my hair on Saturday, then this morning when I brushed my hair I had strands hanging below my hairline. It's my first week back at work since chemo so not the best timing! My hairs pretty greasy but I darednt wash it now as I get the feeling I know what will happen, just really want to try to hold on the rest of the week n then will try to get the courage to deal with it at weekend n shave it. I just don't feel emotionally ready yet to take that step, I've always had very long hair so it's pretty tough!

Hope everyone is doing ok xxx

[Cas164]

Hi books and wine,

Thank you for your tips and advice. It's good to be able to be a bit more prepared. Wishing you we'll for the rest of your journey. Casx

[booksandwine]

Hi I'm from the April 2014 thread - I have had 3 fec and now 1 of tax - next is due next Tuesay some things that might help

Headscarfs/coverings - cheaper options - In Lidel the other week I found a 2 pack of buff like head coverings for £2.  I wanted sleep covering but without spending too much - I found Muslim suppliers for under their scarfs £1 each

Things you may like to get on perscription to be ready - heartburn tablets (mylanta is often not strong enough), difflam, and biotene for mouth, sleeping tablets - I used just on tax as could not sleep to break non-sleep habit, hand cleaner I carry with me, difflam spray for dry mouth, pineapple dried lumps - really refreshing on yuck mouth time, lactouse & stenna - for constiption - and prunes if you can stand them.  If anyone is on tax - theory seems to be mixed re dark nails I am using vitamin e cream and strenthener 

Best to you all

[Julie286]

Ria, good luck. Thinking of you and wishing you well. Let us know how you get on xxxx

[Roxie65]

Hi Everyone

Had a great night in Reading!!  They started drinking on the journey at 11.00am I had one pimms and one on the beach cocktail but that was it as didnt want to ruin the trip.  Also had food we had packed to make sure didnt affect me.  When we got there they continued drinking round the pool but I stuck with water and non alcoholc drinks.  When we went to dinner I had two glasses of rose wine and had a bloody good dance at the disco.  From  then on stayed non alcoholic!!.  Disco was stopped for the footy at 11pm and this is when my energy waned and I am afraid had to give in and go back to my room at 11.40pm lol.  Sure if I hadn't stopped could have gone on!  My friends partied on til 4am but I had had a faulous time by then.  Today feeling really tired lol but so glad I went!!  Hope today I dont pay for it lol.

Cas I am on FEC and it is day 11 day one being chemo day.  I found the first few days variable mostly with sickness but made sure I got out if I could.  I really believe it has helped me.

Athens how are you feeling hope still feeling good!!

Hair still feeling strong if I tug it but now the weekend away is out the way if it has to go it can go now!!

Hope everyone is having minimal side effects and good luck for the next chemo session!! xx

[budcat]

Mummy2dolly
I'm had my 3 dose of chemo on Thurs and yesterday my hair came away while blow drying
Got large bald patch on top of my head now so I've had to succum to wearing a scarf if I brush to try to cover more comes off. Not lost hair from anywhere else tho.
Its shock a first ,just another part of this difficult journey but all doable.
Side effects not to bad just tiredness and slight sickly feeling.

Hope you coping ok

[runner29]

Well done mummy2dolly for dealing so well with the hairloss. I really hope that I can be as composed as you appear to have been, though it couldn't have been easy I'm sure. X

[ria2056]

chemo start tomorrow and i must admit i am a little nervous!!

[Julie286]

Mummy2dolly, that's brilliant! They must have thought it was fabulous being real life hairdressers! I had the cool cap but don't want to do the whole 'hiding the bald bits'. If it's going to go it will be in about 10 days I recon and my husband will be away. My friend and my sister will be coming up from Manchester at various points and if it goes while they're here we're going to open a bottle of champagne and shave the lot - but I shall now certainly be giving my girls (15&16) a go with the scissors first now!!! Cas, hope you're feeling a bit better by tomorrow - how many days anti-sickness did you get? No steroids left now so expecting to be tired tomorrow! Athens, I walked on the day of my treatment and it felt really good. Went to my Zumba class this morning and have felt good today too. Going to try to do something every day as I read that exercise increases the white blood cells? Roxie - hope you had a great night! I'm off to London next weekend for a 40th birthday - with or without hair!!!!! Xxxxx

[mummy2dolly]

I didn't have the cold cap and my hair started coming out in handfuls yesterday. This afternoon I gave my girls (aged 8 and 6) a pair of scissors and let them play at being hairdressers.... They had a blast..... Then I went to my hairdresser and got a number two all over!

[Cas164]

Hi Roxie,

What treatment are you on? I'm 3 days post my first fec been a bit up and down. I want to be out walking my dog and dancing on the tables!

Have a great night out in Reading and if your up for it a glass of wine for me!

Cas x

[Athens]

Hi there

I had my first FEC dose at 3pm today. So far, so good, no side effects. I went straight to the cinema afterwards with my husband, enjoyed the film, then visited my mum. Afterwards I went for a 7 km walk with my brother and sister, then home for a bowl of soup which I had made a huge pot of last night in anticipation that I would not feel much like cooking or eating after the chemo.

At least a good first day and who knows what tomorrow will bring! At least I have a big bag of goodies to cope with most eventualities thanks to the tips on this forum.

Athens x

[Roxie65]

Hi Athens

Was a week on Thursday and am off to Reading tomorrow for the night with 9 women for a 50th birthday which involves a disco lol.

The first 5 days involved sick, a migraine, feeling nausea and fatigue.  Then my chest was a little sore and the spots in my hair and on my face hit with a few elsewhere on the body. Wednesday saw the first day I didnt even get out for a long walk with my dog.  But on Thursday I had so much energy that I spring cleaned the downstairs of my house.  I didnt go for a run as I thought with this heat I would be silly but had another long walk.  Today I have felt really good and only a little tired due to heat and packed my bag and had a dance around the living room lol.

If the can change my medication for the sickness then I will consider myself very very fortunate.  How are things going with you side effect wise.  Getting out definitely does help with the fatigue and my oncologist said helps your system with the immunity side so hopefully you will get out tomorrow!!

Hope you get out and have a fantastic time!!

Roxie x

[Cath2410]

Hi Everyone, I've finally got my chemo treatment dates which start on 25th June. I've been wanting to get on with treatment but now I have the dates feeling a bit scared and down.

I hate the not knowing on how I'm going feel and the effects of the drugs. I'm on EC for 4 & Docetaxel for 4. At least I now have an end date to see there is light at the end of it all.

I'm finding these forum boards really useful because it gives an insight into how it affects everyone and the positivity of people on this roller coaster ride is amazing.

Best wishes to everyone going through treatment.

[Athens]

How are you doing now Roxie, one week on from your first session?
Hope you have been able to get a bit of running done and that the side effects have calmed down.
Nordic Walking is my thing and I have missed being able to use the poles since the surgery though I think now I am about ready to start using them again. Meanwhile it has just been normal walking and I am planning to go out with a new walking group tomorrow if all goes well, it is a group organised by a local cancer charity, do hopefully a chance to met so e new people and learn a bit.
Athens.

[polar_1]

I had my prosthesis fitted yesterday and the bc nurse told me that although she had not seen the results of my PET scan my chemo would go ahead on Monday 16th. This was positive news as it was supposed to start on the 2nd June but delayed because another scan needed. I will get the scan results on Monday but it seems I am good to go and get started xx

[Cas164]

Sandie,

I forgot to say when you use the Aussie leave in conditioner don't just spritz it on , really wet your hair with it !
Cas x

[Cas164]

Hi Sandy,

I didn't get chance to get my hair cut as the whole process happened so quickly for me. My hair is in a medium length bob anyway. The girls on the unit reckoned that it is worth shortening your hair length, I think it would probably help with condition of it etc. the cold cap was definitely worth a go. However as in other posts hair loss is not immediate. . I think you just have to keep in mind that these treatments make everyone feel different . I'm sure you will sail through it , keep smiling keep strong you will be fine. .

Cas x

[sandie73]

Hi Cas164

thanks for getting back to me. Will have to get the Aussie conditioner from Boots. Did you cut your hair before chemo? I have long, thick hair but don't know whether to cut into a short bob just in case the cold cap doesn't work.

How was the chemo for you? I am dreading it as even though got BC I feel well but know when the chemo starts with all the side effects that's when I am going to feel sick 😞 its weird you can feel perfectly well with cancer (in its early stages) but then get sick with the chemo and other treatments x

[Roxie65]

Hi Athens

Thats a bit unfair as its the waiting and not knowing that's the worse. I took all of the said and ended up having one cuppa they bought and a small bottle and half of water, the time went so quick that I never used anything else lol....good luck for tomorrow!! x

[Julie286]

I'm doing good thanks. I think I've been lucky with my anti-sickness drugs and they seem to have got them spot on. I've stripped beds, been to the shops and dropped my teenagers at various events!!! I'm going to ask for a lifetime supply of those steroids - amazing things!!! Although the nurse did say don't take one after 6pm or I'd be up all night cleaning the house! Thought that sounded unlikely at the time but I can see it now!! So glad your feeling better, long may it continue xx

[Cas164]

Yay feeling much better thanks Julie. I had to go back for my injection and was told I could take more of the anti sickness tablets, which has helped loads. Even managed some chores including washing and cooking dinner, I'd never thought I'd be rejoicing doing that! How are you doing?

[Athens]

Hi Roxie

Thanks for the quick reply. I will take a run over to Boots tomorrow.
I was sent home today after seeing the oncologist and told to come back tomorrow for the chemo. No explanation given beyond a mumble about scheduling. I was all set to go today - chemo wardrobe carefully chosen, books, magazines, iPad, sweets, ice cubes to suck, ice lolly chosen in the hospital shop so husband could go and get me me if needed....... Now need to get psyched out again for tomorrow!
Take care
Athens

[mummy2dolly]

Hurray for clear results Ria, let the battle commence indeed!!

[Julie286]

Hey cas. You feeling any better? Xxxxx

[Cas164]

Great news Ria all the best for your chemo .

Casx

[Cas164]

Sandie,

You can get the Aussie conditioner from boots however my husband has just ordered me some on line.

I was in two minds whether or not to have a go but the nurses were really keen for me to try it. I spoke to some of the other girls undergoing treatment who encouraged me to try it and it was fine , a bit weird to be honest but if you don't try you don't know. I did take some paracetamol before which might have helped. My head just felt a bit fuzzy and heavy towards the end. At the beginning I just chatted away to my fellow comrades which took my mind off the bizarreness of the whole situation . I agree with your chemo nurse give it a go !
Hope it goes well for you Casx

[ria2056]

My bone scan has come back clear today so starting chemo on moday 16th. I feel i can come back down to earth for a few days, with CT scan clear aswell

Let the battle comence

I hope there are more happy ladies out there who have had good results

[Bigpumpkin]

Hello ladies, I hope you dont mind me dropping in from the February 2014 group. I see some of you are going to be using the Paxman cooling system and I would just like to reassure you that it does work. I have lost hair but remember each persons journey is unique. I would take 2 paracetamol before starting, thoroughly wet my hair and put on loads and loads of conditioner. Its uncomfortable for the first 10 mins or so but honestly- stick with it- you will be fine. Wrap up warm and wear old clothes that you dont mind throwing away or giving to charity afterwards, if like me you dont want to wear them ever again. I would wash my hair once weekly, and used a wide tooth comb for brushing. There are lots of good advice on the Paxman website, hair care products and testimonials. I lost more hair on FEC, this lessened when I started Tax. There is a helpline you can ring if you are worried about the hair loss and the advisors are extreemly helpful.
Good luck with your journey ladies
X

[sandie73]

Hi cas164

Which shops can you buy the Aussie miracle leave in conditioner?

What is the cold cap like? A part of me wants to try and keep my hair (just can't imagine myself with no hair). My hair is quite thick and long so even if it did thin out I would still have hair. However heard that the cold cap isn't pleasant and adds hours to the chemo session. The chemo nurse said I should give it a go x

[Janet_BCC]

Hi Gilly001

Welcome to the forum.  Yes it's ok to post a reply on a thread and I'm sure other members of the June group will soon be along to welcome you.

Very best wishes

Janet

BCC Moderator

[Julie286]

Hi soda stream! That's great news! You must be delighted!! My nurses were quite positive about the cap and when, in that first 10 minutes, I was ready to take it off, they encouraged me to keep it on. Is your hair really frozen when you take it off? Mine was only a tiny bit icy which makes me wonder if it was pressed against my scalp enough? We'll soon see!!!! Hope your side effects haven't been too bad. Take care and good luck with the rest of your treatment xxx

[Gilly001]

Good morning everyone - this is my first post so I am not sure if I should be replying to your post but I don't know how to post a new one.

I am starting treatment (6 x Docetaxel and Carboplatin) next Tuesday 17 June I am also having Herceptin starting at the same time.

My diagnosis was in both breasts - I had lumpectomies in both at the same time on 12 May, margins were clear and lymphs we're clear in both arm pits but cells showed HER2 receptors.

I was just wondering is anyone else has had the same diagnosis and if so how are you getting on?

Gill

[Sodastream]

Hi Ladies
I've popped over from the May 2014 ladies. I've had 2 sessions of FEC so far and had the cold cap on both sessions. I can report that I still have my hair. I am still washing, brushing and blow drying my hair and lose a small handful of hair when I do this, however it is evenly spread and you can't tell by looking (although I know it's slightly thinner as it doesn't take me ages now to dry like it used to). Every morning I inspect my pillow thinking is this the dreaded day my hair falls out but so far not 1 single hair on my pillow.
I know everyone is different but I agree that the nurses don't always have faith in the cap and it does add time to your session. For me it has been worth it and the first time I had it I can report it was agonising but when I had it the second time it was only slightly uncomfortable for a few minutes.
Wishing you all an easy time with few side effects. X
Hope

[Julie286]

Morning. First FEC went ok yesterday. I found the cool cap absolute agony at first (which surprised me) but then after 10 minutes or so it numbed down to a headache and I managed to keep it on!! I've not been sick (thankfully) but feel constantly queasy - it's a bit like morning sickness. I've been drinking absolutely loads of fluids (recommended by nurse) and I think that's helping - apart from being up twice in the night for the loo!!! Just taken my anti sickness and now going to have my steroid - which is supposed to give you loads of energy?! Might go out for a walk later - looks like a lovely day (and in scotland we need to make the most of those!!!). Cas, hope you're feeling a bit better? 1 down, 5 to go!!! How did others get on yesterday And good luck to those going today - drink loads and snack often seems to have helped me? Xxxx

[Cas164]

Hi everyone, how are you all. Had my first FEC yesterday and quite honestly feel like I have a hangover from hell. Quite sicky although taking all I've been given. Have to go back for an injection later. Hopefully I'll feel brighter by then. Cas x

[swm]

Having my first session with Paxman tomorrow. You are lucky to be offered the Paxman as not everywhere has them. I'll keep you posted.