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June 2016 starters?

netti37
Member

Re: June 2016 starters?

Those who have started.... Day 1 today on FEC. I'm feeling ok and my whoozy head has gone... But my legs are a bit achey. Manageable but feel funny. Is this normal?? X
Taran
Member

Re: June 2016 starters?

I've injected myself before too and the thought if it is worse than doing it. It's only a couple of seconds and all done. Definitely worth doing instead of dragging to the drs every day. I hope your count is better tomorrow. Nothing worse than getting psyched up for something and then it not happening.

RosieFlower, do you live in Cardiff? I'm not far from you. Having my chemo through Velindre but opted to have it at Royal Glam as it's much closer to me. We lived in Cardiff for years though and my in-laws still do.

So pleased to read that everyone starting today has come away pretty unscathed. Hope it continues for you all!xx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi Charissecarson,

 

You are right, the G csf injections are not given as a matter of course, unless there are specific risks of infection. so I am glad you are getting them. THey do help.

As to injecting yourself - I just could not do it - I have become so sensitive to any pain being inflicted on me by others, so doing it myself - not a cats chance in hell.

However, I got in touch with my local surgery and knowing which days I have to have them - day 3 - day 10

was able to prearrange appointments with the relevant nurse, for them to be given to me. I have a pretty little cool bag and freeze elements to keep them cool, when I go there. Over the weekend it has been arranged for me by my medical centre to attend the local minor injuries hospital, where they also do it for me.

Hugs

Sue xxx

 

Belle
Member

Re: June 2016 starters?

I've not injected myself recently but have had to do it in the past and once you get past the initial one, it really is ok.  I got really blasé about it in the end and was stabbing myself anywhere - toilet cubicle during a train journey, small sailing boat, other people's houses - you name it, I probably stabbed myself there 😉

 

However, it is possible to arrange for the practise nurse at your surgery to do it if you really can't manage it.  So you do have options.

 

B x

RosieFlower
Member

Re: June 2016 starters?

Hi Charissecarson.
Think it is a postcode lottery and maybe criteria fit. I'm in Cardiff and they gave me one only, and that's because my son is going into hospital next week to have surgery - so not a great place for me to be hanging around, esp as it will be Day 10 - 16 for me. My friend in Southampton however had a daily injection for 7 days and no children - so don't know how it works. I think they can organise for a district nurse to do the first jab and show you and then you can do them yourself - it is quite easy when you get the hang of it. XX
Charissecarson
Member

Re: June 2016 starters?

I'm not sure about the injections, I only learnt about them from on this forum but from what I can tell they seem to give them automatically to people that have small children but not if you don't. Not really looking forward to injecting myself but will try and learn otherwise I will have to go to the doctor every day. Has anyone that has done it got any info on what it's like or how to do it? X
Emma111
Member

Re: June 2016 starters?

Hi Belle

Glad you are feeling so good at day 13. I guess just have to remember when it's not so great, it's not forever. ... I'm thinking that may be easier said than done at the time but I will think of you feeling great at day 13 and try!

The whole injection thing is ridiculous if down to cost!! People already having a rubbish time shouldn't have to worry about that too and potentially have treatment drawn out!! Cost should never come into it when it comes to someone's health and wellbeing!!!xx
Belle
Member

Re: June 2016 starters?

Hi Charissecarson,

 

What a pain about your blood count!  I'm dreading that happening and am not surprised it's thrown you.  It's like being all dressed up and no where to go, isn't it?!  I don't get the injections either at the moment - it's all down to cost I think *sigh*

 

And Emma, Charissecarson is absolutely right, it is definitely not hellish.  I had a rough couple of days, and felt ropey until Day 10 but now (day 13) feel great 🙂  We've even decided to go away on our narrowboat for the night.  But I've stupidly forgotten the suncream so even though it's not that sunny I'm feeling obliged to stay inside!

 

All the best to you all for tomorrow and much love for those of you needing it today.

B x

Emma111
Member

Re: June 2016 starters?

Thank you for your kind words Charisse. I'm trying to be strong today and doing weird slow breathing exercises to help with the anxiety but you have def helped too.

Sorry to hear about your blood count. Why don't they give the injection in the first place!!?? Really hope it's better when you are tested in the morning so you will be closer to end of your treatment xx
Charissecarson
Member

Re: June 2016 starters?

Well done for getting through your first day ladies. Hopefully your night will go well. Just had my meeting with the oncologist before my chemo number 2 tomorrow and been told my white count is still down so may be delayed a week. Gotta go and have another blood test in the morning to see if there's any improvement. So annoying! He said I will be starting those injection for the next one to try and make it not happen again. Thrown me a bit as I just assumed stupidly that I would be OK and I just wanna get on with it! 🙄

Emma you have nothing to be scared of, hellish is farthest from the truth. You sit on a big comfy chair and chat to nice people whilst the drugs just drip slowly into your IV in your hand/arm. Please don't be scared. You'll be fine.

Taran I've never had any bad taste in my mouth at all so you may or may not get that. Weird that we all get different bits.

C xx
Emma111
Member

Re: June 2016 starters?

Hi Netti, glad you are home ok and feeling ok, I have been warned about the red pee so will be prepared for that. So would you say the experience today wasn't as hellish as you expected? I really hope I'm like you tomorrow when I get home. I'm so glad you've got over the first hurdle unscathed xx
netti37
Member

Re: June 2016 starters?

I've just got back home too. I feel ok. Hoping that's a good sign. Got a bit of a whoozy head, but I think that's stress related. Got red wee...(tmfi) but that's too be expected. 1 down ... 5 to go. Xx
Good to hear from you Rosie...hope your still feeling ok. Its the next few days I'm thinking of now. I was so nervous this morning, but my experience was very good..as it goes. Xx
Belle
Member

Re: June 2016 starters?

Hi Marije,

 

I'm afraid my friend doesn't do technology but I can tell you basically what she does.  You're right it is a restricted fast rather than a total fast - a bit like the 2 days of the 5:2 diet.  She drops to 600 cals 2 days before chemo, remains on that for the day of chemo and the day beyond.  Then she has a diet of no dairy, no caffeine and no alcohol with minimal meat (no red meat).  The week before chemo she has no carbs.  She takes various supplements which I'm afraid I can't remember.  She has checked all this out with her medical team and they have given her the go ahead.

 

Hope that helps,

B x

Emma111
Member

Re: June 2016 starters?

Glad you are home ok from your first treatment. I'm in tomorrow for my first FEC at 10am, felt ok this morning but as day goes on, more and more nervous! I hope you are ok for the rest of the day. Hope I'm like you tomorrow!!xx
RosieFlower
Member

Re: June 2016 starters?

Hi Marijie,
I too started last Friday, and am also interested in your friends 'fasting' experience Belle. I haven't been too bad apart from sleep disturbance, probably from the Dexamethazone tabs - I can't get off to sleep at night for love nor money! Am hoping that as I took last dose yesterday, sleep will return sometime this week (at night!) . Good luck all starting this week . Rosie xx
Anon16
Member

Re: June 2016 starters?

I'm home and all is good so far - had a craving for chocolate biscuits (nothing new there!!) so gunna relax and hope to feel fine still later. Let us know how you get on Netti
Marije
Member

Re: June 2016 starters?

Thank you Belle.

Intersted to hear you have a friend who's fasting too. Though she's doing a resctricted calories thing? I might be interested in that as well, as just a water fast was pretty challenging.. 🙂 

Do you think your friend might be interested in sharing her experiences?

 

Feelign OK today actually. A bit tired and a weird sort of clumsiness.. Shakey hand sometimes. But I cant complain x

 

Take care everybody.

xxx

Taran
Member

Re: June 2016 starters?

Going luck to anyone starting today. Hope it all goes smoothly for you. I'm living reading the lists of things to take. I probably would have just turned up empty handed if it wasn't for the advice on here!! I hadn't thought the yucky taste would start quite so quickly so will definitely stock up on some sweets to suck.xx
Sue H-S
Community Champion

Re: June 2016 starters?

For all of you amazing ladies

Comfort.jpg

Belle
Member

Re: June 2016 starters?

Hi Marije,

 

Welcome 🙂 And fabulous to meet you.  I went to the wedding of a dear friend recently - she married a man who is Dutch by birth & heritage but brought up in Scotland from about 8 to 16, or something similiar.  His accent is a marvellous mix of Dutch & Scottish - Dottish, if you will 😄

 

Back to your questions.  I'm day 12 following first FEC.  I found first day without steroids I just felt tireder, but I didn't get the jitters the steroids had given me.  It wasn't a massive crash, more a general knackeredness.  I was nauseous for about 10 days with some days worse than others.

 

I have a friend who is fasting too, for the same reasons.  Her side effects have been minimal - basically tiredness but that's it.  She's about to have her 3rd FEC and is very motivated to keep going as she's convinced what she's doing is helping.  I know it's not for me as I feel horrific on 600cals (her fasting intake) so am quite sure it would make me worse. However, keep us posted of how you get on.  It's always interesting to hear what others are doing.

 

Hello from Birmingham btw 🙂

 

B  x

Lucy Lu
Member

Re: June 2016 starters?

Belle. I think we just accept that we Ate going to have side effects and put up with them. I put up with streaming eyes for s week saying "it's to be expected " . Was persuaded by my daughter to speak to gp who prescribed two lots of eye drops and cleared it up within a day xx
Marije
Member

Re: June 2016 starters?

Hi everyone,

I have just spent a few days reading all your posts, catching up! 

I have just started my first treatment past Friday 17th. 3xfec + 3xt...

The coldcap was pretty torturous, absolutely horrendous, but did get better the longer it was on. I am now reading that everybody still looses quite a bit of hair about 2 weeks after? I have very fine, thin hair, so am worried it's going to look really weird! Not a fan of my wig, so better get some more hats and scarfs 🙂 

The first Fec wasnt fun, but not too bad either I suppose. Friday I got back from treatment, put my boys to bed (1yr & 5yr!), but about 3hrs after treatment I started to feel realy lethargic.. Hurled myself to bed, but didnt sleep at all, as was really nauseous, shivery cold & hot flushes, vomiting.. Bleh. This went into Saturday, and started to feel slightly better Saturday afternoon. Sunday a bit better again, and today I seem 'fine'. Though not 100%, and cant quite put my finger on it... Just a bit more lethargic, heavy body.. But nothing serious either. So it seems my side effects mainly lasted 1.5 days...

Though I've heard after you stop taking the medicines you might have a fall back again, is that right? Tomorrow is my first day without meds.... Anybody can tell me what to expect? 

 

I must add I had been fasting around the time of chemo... I know it will sound a bit controversial for some, and definitely not everyones's cup of tea, I understand that. But I read some interesting research on how it might reduce chemo side effects, and enhance the chemo (basically, your normal cels will switch to 'protection mode', but cancer cells cannot do that, so chemo hits them better).. For me it was more to try and reduce the side effects. Didnt completely work, as you can see! But maybe I can tweak my next trials 🙂

 

Anyway, nice to meet you ladies! Even if it is under these circumstances! I am generally still in denial about it all.. Weird huh. I dont even believe I 'have' cancer, and feel all these treatments are mighty unnessecary 🙂 

Tonight I had a bit of a wobble, when I realised that when chemo is over...it aint over yet... Still 1 year of Herceptin, then 5-10 years of Tamoxifen.... It feels so unfair that it takes away such a big chunk of your life! And with two small children, a few traumatic years behind us, I just wanted to finally get on with life and enjoy! 

Grr.

it's all just bloody unfair isnt it.

 

I'll be having my treatment in Edinburgh by the way (I'm from Holland originally, married to a Scot!) (so please excuse any spelling mistakes) x

Where is everybody else?

 

NIght night for now. 

 

Xxx

 

 

Belle
Member

Re: June 2016 starters?

Hope it goes ok for you Rosie (Anon16), I definitely found the waiting harder than being in the chemo unit.  I took a bag of bits with me including the following:

  • sweets to suck in case of instantly yacky tasting mouth - which I got about an hour into treatment;
  • 1.5 litres of water, half infused (basil, cucumber & lemon) and half plain;
  • selection of non-tea tea bags, green, mint, ginger;
  • crossword book & pen;
  • earbuds for iPhone with updated listening matter;
  • lip balm, gin & tonic flavoured, obviously;
  • book;
  • tissues
  • scarf/shawl thingy in case I wanted to wrap up

I used most of these things so I'll probably take the same again next time.

All the best & keep us posted,

B x

madhatter67
Member

Re: June 2016 starters?

Hi - wish you luck with your first treatment

 

 

Anon16
Member

Re: June 2016 starters?

Good luck to you too. Doesn't feel real yet so I've had a glass of wine, watched game of thrones and come to bed now. Baby early tomorrow nursery then heading there for 9am. Just want it over with really. Xx
netti37
Member

Re: June 2016 starters?

Will be thinking of you tomorrow Rosie...I wont be far behind you. How are you feeling...I'm getting nervous now. Don't feel prepared, but just read a wonderful post (thanks Sue) on the July starters and there are loads of tips and useful hints of things to buy and get ready for. all the best, try and let me know how you've got on. xxx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi Anon16

 

All my best wishes go with you - looking forward to your update.

 

Take some music with you! - It will help to relax you and put you into a good mood.

 

Huge Hug

Sue xx

Anon16
Member

Re: June 2016 starters?

I'm in at 9am in the morning for first fec, wish me luck x
Sue H-S
Community Champion

Re: June 2016 starters?

Hi hazz25a 

Here in England we should get a £60.00 voucher towards the cost of the wig or we might be able to get an NHS wig for free, depending on our circumstances. Usually the wig should outlast your chemo treatment, as they are made to be worn for 6 moths on a daily basis.

They do not generally discuss G CSF injections at the pre chemo meeting. This is something which you may wish to discuss with your oncologist, who would prescribe it, if he/she deems it as beneficial to you.

Great re your decision on your hair. Many of us are actually finding that the 'great shave' is worse for the 'shaver' than the 'shaved' and we are discovering that we are quite beautiful without our hair.

Nothing wrong with focussing on the beauty side of things - we deserve a pamper or two - to say the least. I was a confident make up applier before all of this, but I am gaining more skills and knowledge, as I move through all of this.

Being scared as alone - Absolutely understandable - have a look at the July thread with regard of staying safe, should the unforseen happen. Recently posted a pre chemo checklist. I prefer to be on my own, when I am unwell, as I do not have to worry about others and can just veg out. Mind you I have a cat, too - and I am being 'groomed' like crazy by him, lol.

Great to hear, too that you are watching out for all to use the correct arm.

Wishing you well - and am here and on the July thread --actually nearly everywhere--to support as well as I can.

 

Hugs

Sue xxx

 

 

haz25a
Member

Re: June 2016 starters?

Hello Ladies,

 

Just been catching up on your posts. I've been on here but trawling through all the posts I can find about people who have had "TC chemotherapy" x4 as this is what I will be having. I'm aware that the majority of you will be having FECx3 then FECT x3 so it's slightly different for me.

 

I have my pre chemo assessment on the 29th June so thanks Sue for starting a July thread.

 

I had my eyebrows tattooed today, supposed to get top up in 4-6 weeks but obviously won't be able to do that as I'll have started chemo by then. Getting a short hair cut tomorrow as I have very thick hair in a bob at the moment and I'm going to try on wigs on Wednesday. Will get my head shaved once I have my wig as I can't be bothered waiting for it to shed or the mess of having hair all over the place. The cat does a good enough job of that without me adding to it.

 

I realise I have been focussing on the "beauty" side of things, which is strange as I'm not really that bothered, I very rarely wear make up etc. but just want to be organised in case I feel too ill/tired to do it once my chemo has started. Also, it's a bit of denial, I still haven't read any of the leaflets about my chemo regime etc. that the oncologist gave me although I have been reading posts on here about my particular regime which is probably better, reading real people's experiences as opposed to just medical literature.

 

I haven't been told anything about the injections to prevent infection, although they may tell me on the 29th at assessment. My unit doesn't do picc lines in the first instance. I've got good veins, although can only use my left arm as my surgery was on my right side.

 

I feel really lucky not to have to pay anything towards my wig, this is because I live in Scotland and everybody gets free prescriptions. I have spoken to one salon on the phone and looked on their website and they suggested the monafilament wigs but they're around £200. Are you only entitled to one wig? I have a wig bank near me where people donate wigs and the bank sterilises them etc. and sells them cheap so I might get a second one there if need be. I also need to place my order at Annabandana for my hats/scarves. Therometer arrived today, same Braun one that my GP uses.

 

Still a bit scared of going through chemo living on my own but I keep thinking of your post Sue. I actually really love living on my own, I like my own space, it's just when I'm ill I panic a bit!

 

Right, just thought I would check in to see how you're all getting on. I've got a Heart Scan on Thursday which involved having radioactive dye injected through a cannula in my (left) arm? Presumably this is because I will also have my first Herceptin injection the same day as my first chemo. Apparently I'll be there all day as they have to monitor you for 6 hours after Herceptin.

 

Back to reading some of these TC posts now, some of them go back to 2008.

 

Take care and Best Wishes all of you.

 

Hazel. xx

kalimera
Member

Re: June 2016 starters?

Hi everyone, just catching up on all the posts...Good luck to everyone about to start, think it's better once the ball is rolling. Belle and Charisse you look amazing! Your photo's bought a tear to my eye (doesn't take much these days!) Have felt fine since day 6, so am really pleased with that. Went to get my prosthesis whilst my brain was all foggy though and now I think it's too big! Will have to put a sock in with my real boob to compensate Smiley LOL xx

julie.galea
Member

Re: June 2016 starters?

Just catching up with todays posts,

 

Charisse.  Just WOW.  you look amazing.  Soo jealous.  You and Belle definately rock the shaved head look. 

 

Emma.  Talk through all your fears with the nurses on the chemo unit, they will totally understand and will have some good advice,  I didnt really get scared before the 1st one,  I think I was still in denial.  Im due for no 2 on Wednesday and am totally freaking out, even though I know what to expect.  Totally irrationaly but cant stop worrying about it.

 

Hi Charbutton.  Im having 3 FEC and 3 T as well.  Then 20 Radiotherapy sessions and 5-10 years of Tamoxifen, depending on what the most recent research says when the time comes.  My 1st treatment was on the 1st June. SE's are crap but after about a week and a half I started to feel better, still got a slight sore mouth but my taste is back to nearly normal. 

 

Anon16. Under employement law you are classed as having a disability.  I agree with the others.  Get some advice from Macmillan, they will tell you where you stand.  And go to your GP and get a sick note.

I have gone back to work.  I was off on Wednesday 1st June for my treamtnet, stayed off on the Thursday and went in on the Friday but only worked 4 hours.  I dont work weekends luckily as I wouldnt have been in and stayed off on the Monday,  have been back full days since then but I know if it gets too much all I need to do is say and I can go home.  I work in a small office with only 5 staff and 2 bosses so its easy for me to work what I want, and I like my job so its giving me a bit of normality, which is what I need.  Ive only worked there for just over 18 months, if I had still been in my old job I would have got a sick note for the whole time I was having treatment as I know they would have made my life miserable. 

Do what is best for you,  if they are not being reasonable, then dont go in.  You and your health are the most important things at the moment, added stress is the last thing you need x

 

Take care everyone and good luck and hugs to everyone having treatment this week xx

 

Belle
Member

Re: June 2016 starters?

That's really good advice, Lucy Lu, thank you.  I've been logging my side effects on my blog but it never crossed my mind to discuss them with my gp!  I just figured I had to wait until I saw my oncologist - honestly, dim or what?!

 

Those of you starting tomorrow or the next day, keep us posted.  You'll soon have your first one behind you.

 

B x

Anon16
Member

Re: June 2016 starters?

Looking lovely Charisse.

Sorry to hear that Judith, sending u a virtual hug x
Taran
Member

Re: June 2016 starters?

I'm sorry to hear that Judith, but glad they are steaming ahead with the next tests. I find the waiting the worst bit. Good luck for tomorrow netti. Will he me having those feelings this time next week and by then you will have a week under your belt!xx
netti37
Member

Re: June 2016 starters?

Thank you all. When does the feeling of "this can't be happening to me" go away? Or doesn't it?. Tomorrow is the beginning of a journey I never expected to be taking... And I want a full refund...oh yeah, forgot its not that easy!!! Just got to try and accept things and hopefully it will be over soon.
Hope all those already started are doing ok.xx Good luck Emma for Wednesday. Xx
Emma111
Member

Re: June 2016 starters?

Thank you Lucy, every bit of advice helps xx
Emma111
Member

Re: June 2016 starters?

Good luck Netti and everyone else starting tomorrow, I'll be just a day behind you on the Wednesday xx
Lucy Lu
Member

Re: June 2016 starters?

Emma 111 sorry to hear you are feeling scared. You are not the only one. I think everyone undergoing chemo is scared if the Unknown. It is scary until you get the first one under your belt. Keep a diary of your side effects because for me they appear at the same day in each cycle. It will help you to manage the side effects as you go through the treatment. Remember there is a solution to every side effect so don't put up with anything get on to your gp straight away and get the prescription to sort it out. Stay on top of everything. I promise you it is not half as bad as you think j it will be. Good luck.
Charissecarson
Member

Re: June 2016 starters?

Thanks ladies, just glad to have gotten it over with.

 

Sorry to hear that Judith but now they know what they're dealing with they can sort you out the best plan of action to beat the bugger! 

 

Good luck Netti and anyone else starting tomorrow. Once you get there and you're doing it you'll realise it's pretty uneventful whilst you're actually there and the thought of it is way worse so chillax and try and have a nice evening. Make sure you eat something before you go so you have something in your tummy. 

 

C xx

netti37
Member

Re: June 2016 starters?

Judith, sorry to read your news. Always seems to be another battle with this disease. Xx Charisscarson and Belle, your photos are beautiful. Very brave of you both. Xx I start day 1 tomorrow, I don't know quite how to feel about it. But all your positiveness is helping and so inspiring. Xx
Belle
Member

Re: June 2016 starters?

Hi Judith,

 

I'm really sorry to hear this, it must be incredibly hard trying to wade through everything with chemo fog to contend with as well.  What a b*gger!  It is so tiring getting bad news after bad news 😞  I'm glad you're being well looked after.  Keep posting here and don't worry about not being positive.  Here has to be a place where we can come and just go 'Bleargh!!!' when we need to.  So many of us have to hold it together elsewhere that we have to have somewhere we can let go.  We will all do our best to hold you up.

 

Much love,

B x

judith63
Member

Re: June 2016 starters?

Woah Charisse,

 

You really look fab, No. 4 cut all the way!!  You have a gorgeous face for that look!  Also a very brave lady for posting straightaway. 🙂

 

I didn't get the news I wanted this aftenoon.  Sentinal node had an 8mm tumour, not visible on the ultra sound or MRI ...... Seems like mastectomy is now definite, but whether they wait until after chemo or do it immediately depends on results of next lot of tests.   As I live in the Netherlands luckily it's all systems go and I get to have lung photos and a liver and bone scan tomorrow.....Being told all this through a day 5 post AC haze has not been good:-(

 

Trying to remain positive, the sooner it all happens the sooner we get rid of the **bleep**...

Hugs all

Judith63

 

 

Taran
Member

Re: June 2016 starters?

So pretty charissecarson, both photos. You have a stunning face x
Belle
Member

Re: June 2016 starters?

Wahey!!  You look great!  Well done 😄

 

xxx

Charissecarson
Member

Re: June 2016 starters?

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Belle
Member

Re: June 2016 starters?

Hi Charissecarson,

 

Posting photos should be straightforward.  In the reply screen there are serveral icons, about 9 along (this is on a computer rather than a phone) is a picture of mountains & sun?  That's the insert image button, click that,  Add Image, Choose file and that should take you to your computer files and from there you choose the picture you want.  Hope that helps.

 

B xScreen Shot 2016-06-20 at 15.32.19.png

Charissecarson
Member

Re: June 2016 starters?

Hey ladies
So the hair loss got ridiculous this morning so I followed in Belles footsteps and shaved it all off. Went for a no. 4 so I still have a bit covering left and today is my wigs first outing! I'm gonna try and post the pictures but not sure how to get them here on the thread. Xx
julie.galea
Member

Re: June 2016 starters?

Hi bubbles.  I'm going to try the cold cap again on Wednesday and see what happens after that.  

I have really thick hair so to look at me you can't tell although I can feel it is thinner.  

If it keeps shedding after that I will probably stop using the cold cap.   

I'm totally not organised for losing my hair.  I haven't even looked at wigs.  The shop that has been recommended is 40 miles away so I will have to take a day off work to go and have a look I think. I will wait and see how it is in a week or 2. 

How are you feeling apart from the hair?

sharon james
Member

Re: June 2016 starters?

Oh I like that thought every hair loss is a c cell blitzed and gone.I'll hold on to that as I progress just on day 4 of first FEC