October 2015 Chemotherapy starters - please join!

[Debbie h]

Hello. My name is debbie. I had my second chemo last Wednesday. The first one when reasonably well apart from the Trauma of the hair loss! So I thought second one would be easier. Sadly I was wrong. I ended up in AE Sunday night with chest pain. They thought I had a clot. I didn't luckily but the said chest infection??? Maybe??? Prescribed antibiotics and sent home. Speaking to my Breast care nurse she seems to think maybe osphagitis due to chemo? Anyone know anything about this?

[Babygirl]

Morning. Sorry to hear about all the ladies experiencing sickness. I was prescribed Emend and so far no sickness just nausea. Absolutely banging headache so onc nurse suggested stopping ondanestron and take codeine or paracetamol. I find ginger biscuits helpful. 

I was was diagnosed in July 2015 stage 3 triple negative. Had mx and anc . Since then I went back to theatre haemorrhaging and then got cellulitis at my wound site. This put my chemo off for two weeks. It was a relief to finally get started on chemo as this is the only treatment for me. Adjuvant said 18% extra with treatment so prognosis around 68%. My treatment plan is 4 FEC and 12 T followed by radiotherapy. It's going to be a long journey. I'm not allowed to work as I work in the operating theatre and risk of infection.

its lovely to hear from others that are experiencing the same issues. Keep smiling . We can do this xxxxx

[Bibi44]

JoJo/Ele you poor things. I was just the same & hope u r through the worst now. I wrote my oncologist an e-mail politely but firmly demanding Emend with a blow by blow account of my 15 hour vomitathon.  That's how I got things to  change for chemo2. I asked for Emend & so did my chemo nurse, but I had some upper middle class horsey type of registrar who was "stiff upper lip you'll be fine". She was wrong! Vile woman. I wasn't assertive enough in the face of strong resistance. So basically my advice would be to request in writing & refuse 2 until they agree.  Sounds extreme, but all they're trying to do is save £70 per patient at the expense of our wellbeing. It's immoral for such a small amount in the context of the cost of chemo £2-3k per cycle.  Rant over😬XxxX

[FionaJMD]

I have got some Ginger Ale, Ginger biscuits and also Ginger tea. I didnt suffer much with morning sickness so hopefully I wont suffer too much, but who knows! Sorry you are both being sick!

[Sarahd-1]

morning ladies Im sorry to hear about all your sickness next time I would insist on having Emend they try to avoid as its very expensive! But you are best on having that and another as a back up. I hope you all feel better soon. Ginger ale great for the nausea xxx

[hopalong]

Morning

 Sorry you are both being sick,

Emmend is a drug that you have 1hr before your chemo and then on day 2 and 3. Most oncologists don't prescribe this immediatley as everyone reacts differently. It is the creme de la creme of antisickness.

I was lucky and got it from my 1st chemo as I had told my oncologist about my history with feeling being sick.

Like I said don't put up with sickness/vomiting there are lots that can be done.

[jojo2]

Hi Ele J. We seem to be sharing the same experiences. My 1st chemo was yesterday and really it was ok - felt a little light headed at times. Started to be sick about 6 hours later and more or less hourly since! I will give it an hour or so and if it hasn't settled will ring the helpline. I'm worried as I haven't kept the pills down. Speaking to a lady who was on her 3rd FEC treatment and has not suffered from many SE at all. We are all so different. Big hugs to all x

[Ele J]

Thanks both, I have indeed been throwing up through the night, but took dexamethasone and ondansetron this morning with a little cereal and kept that down for about 45 mins so hoping that may have been absorbed and start to work soon?  They gave me anti-sickness before the chemo and (I think) something else intravenously, so I think my mistake was to wait until late evening before taking the next one (as instructed) by which time I was already feeling and being sick.  I'll see how I go this morning and then ring the chemo unit if no improvement.  What is Emend? Is that a brand name and do you know what the generic name is?  Thanks all for your lovely words of support...it really helps!!  X

[Bibi44]

Hi Carolyn So sorry to hear your news.  Must be a real shocker.  I'm from August 2015 & we have a lady called Brave on ours who is on AC-T. Why don't you pop in & ask her? I know she bobbed up from London to Glasgow during hers, so you may be OK to work.  Probably best to blast it with the chemo first & stop it in its tracks. Some people's tumours reduce by 50% or even go away completely during chemo if you read some of the earlier threads.

Ele sorry to hear about your sickness. It is miserable but it will go soon. Try & be strong. If it persists you need to call & get some non oral sickness meds.  I had it for hours on chemo 1, but they tinkered around with the drugs on 2 & I've been fine. Did you have Emend? If not demand for chemo2. Some places don't give first time. It's brutal. Chin upxx

[hopalong]

Hi EleJ don't put up with sickness, it can be dealt with. If you feel bad overnight you can always phone 111 for a Dr to come and give you an injection to stop you vomiting, or ringing your emergency number for advice. Then ring GP/chemo unit to prescribe different drugs tomorrow I was on a combination of 4 different ones
when you go back for your review or next chemo it will be worth mentioning your sickness as you may get prescribed Emmend. This made my chemo journey more pleasant. I also wore pregnancy/sea bands may have been psychological but they helped too.

Carolyn if you read the someone like me younger women section on the forum there is a thread about a private support group where sadly you will find lots of other triple negative women in their 20's

I will keep lurking and reading your posts for a couple of weeks until you all get your 1st chemo done and offer any help I can as others do/did for me and then I will leave you to support each other
take it easy x

[Ele J]

Obviously spoke too soon on the 'feeling fine' bit...started feeling sick earlier and have just thrown up for the second time.  Took an anti-sick tab after the first vom and was about an hour before I threw up again so hoping it will have been absorbed and might start to work now. The nurse did say to me that if you tended to have morning sickness when pregnant, you're more likely to have sickness symptoms with this, so I should have known!

Carolyn - sorry that's probably not the welcome you were hoping for! I think you probably have to go with your gut instinct, but leave your options open as you just can't predict how you will feel in advance.  If you have the kind of job you can dip in and out of I would imagine it's more feasible to work during chemo and just take off the days when you feel rough (if you have any - I've seen people on here who seem to sail through the the whole thing!). Good luck and let us know x

[carolynk]

Hi all, my name is Carolyn and I'm from Dublin (I hope its ok that I'm posting in a uk site). I was diagnosed with stage 1 grade 3 breast cancer 2 weeks ago. I'm still waiting for confirmation but they're pretty sure its triple negative.  I was living in Korea when I found the lump and got diagnosed so I had a very quick return to Ireland. I've opted for chemo first then surgery at the end. I'm due to start next week, this might be delayed depending on if I decide to get fertility treatment, I'm 29 years old. I'm going to be having 4 ac chemo treatments spread over 8 weeks and then 12 taxol treatments, one every week.

I'm really unsure whether to work through my treatment. My boss is super supportive and is not pressuring me in any way but I'm struggling to decide what will be the best option for me. 5-6 months off work is such a long time but I also want to make sure I don't hinder my recovery.

It has been such whirlwind. I feel as if I'm coping well with everything but I also think it hasn't fully hit me yet. It's great reading the forum and hearing other peoples' experiences and tips for getting through chemo.

[Jayneyb69]

Barry - fingers crossed for you and Nikki 🍀, and I hope you have a good nights rest Ele xxx

[Bibi44]

Well done Ele hope it wasn't as bad as you expected. Advice just take an anti sickness tab whilst you're still feeling ok & drink loads of water. If u get queasy eat little & often . . Toast, rice, porridge, smoothies worked for me, but we're all different. Big hugs & all the best for tonight xx

[Ele J]

And best of luck Barry to you and Nikki, really hope you get good news on the fertility treatment x

[Ele J]

Hi, back from my first session and feeling fine so far, but I guess it takes time for effects to appear? Drinking lots of water and have a bagful of medications to take (anti-sickness etc) but anything else I should or shouldn't do tonight?  Hope everyone else is doing ok.  Great that you have a date Jayney, it's so hard being in limbo. X

[bazza7676]

Glad you have a date Jayney. We visited another fertility clinic, once we know if we are getting it they'll be able to give us Nikki's start date.

[Jayneyb69]

Yeah, finally got my date, I start next Thursday 8th October, sounds weird but looking forward to getting started now. Hope today's starters are ok x

[Mariej2205]

Good luck today ladies and hope your feeling better soon to yesterday's starters!! Xx

[PeggyCat]

Hi Bibi, that's the second recommendation on here for Liposils so sounds promising. I too am worrying about the nails - in an squeemish way rather than an asthetic one as mine have never been that fantastic anyway. I have got some of the Dr Organics Manuka Honey Hand and Nail cream that several people here seem to recommend. Anyway, I'll add Liposils to my shopping list (along with laxatives after your later post )

And good luck to everyone having chemo today. Look after yourselves. xx

[shazza45]

Good luck all ladies having chemo today! Xxx

[bazza7676]

Good luck Ele, Jojo and Glenda x

[FionaJMD]

Thanks BB, do you mean anesthetic cream each time before you have bloods done. I am having it fitted by GA on Wednesday 7th October.

[Ele J]

Hi all, Jojo and Glenda good luck today.  I'm having my first chemo this afternoon too...kind of just want to get on with it now.  My husband is coming with me but I'm taking my iPad to watch stuff while I'm there so will probably end up ignoring him!  At least the sun is out today (here anyway) - makes it feel more hopeful somehow X X 

[Bibi44]

Sorry should say chemo not chemistry! Left that behind years ago when failed o'level!x

[Bibi44]

Baby girl glad u survived round one. You can take paracetamol for headaches. Jojo let us know how you get on. Fiona I had a portocath & it was miles better than the 5 needle sticks I had with chemo 1. Also it's under your skin, do not need to dress/flush between chemistry/you can have bath & do sport. If you do get one, make sure you put anaesthetic cream on at least an hour before. I found that out by chance when I had my bloods done, so went early & got it.  The lady next door didn't & she said hers really hurt. Funny how much of the info you pick up is off this site rather than official sources. In the interests of full & frank disclosure one lady earlier mentioned laxatives. I haven't had any issues with that because I read the April 2015 thread where it was a popular topic . . Forewarned & all that! BBx

[FionaJMD]

I have heard lots of people talking about a PICC line. I am having a Portacath fitted, anyone else had this?

[SuzyEB]

Hi Jojo. Hope it all goes well today. Once you start treatment it feels better. You will manage really well. Take all the medicines they give you. As has already been said Drink lots. Listen to your body. All the best xx

[jojo2]

Hi babygirl - calling you that makes me feel like I have ventured on to a different forum!!!! Glad you don't feel too bad. When you say feels like a massive hangover do you mean thumping headache.  When I drink I dont get hangovers I just get sick on the same night!

Really nervous about today,  I have decided to go alone as I think I will be better if I only have myself to worry about. xx

[Babygirl]

Morning everyone. Had my first FEC yesterday and didn't feel too bad. Now feel like I have a massive hangover. Not sure what pain relief I can take. Good luck Jo Jo xx

[Bibi44]

Peggy a girl I had only met twice at tennis, but who had BC in 2014, gave me something called lipocils for eyebrows/lashes. Very nice of her. It's supposed to bush them up so if you lose some it won't look too bad. She never lost hers. I think mine have got softer & look better as they were a bit overplucked. Don't think you're daft about the eyebrows, I more worried about losing my nails that my hair . . How weird! I am oiling & creaming them as often as possible & doing ice mitts/slippers. I've had 2 FEC & would have been fine for LGFB course on day 5 both times.

Marie I don't find the BCN that responsive by phone, but if you can get their e-mail they're pretty good at responding.  Same for onc's PA. we're told to ring her, but she never answers, no voicemail . . One time I had something super urgent to sort & eventually e-mailed onc direct (once you have one e-mail you can work out the rest as they all have the same structure). Turned out PA was on holiday for the week!

All the best to you all. BBx

[Jayneyb69]

Good luck with the first chemo Glenda and Jo Jo, I have been to see onc for a second time today, first appt was 2 weeks ago was a washout as she was sick. Well I spent all of 5 minutes with her, she asked me when I'd had my first chemo (I haven't even had my start date yet), and she prescribed me lorazepam for tbe day it does start. I have had my bloods done today and have my chemo new patient appointment tomorrow. Fingers crossed I get my date. Fed up of waiting 😴

[bazza7676]

Good luck for tomorrow Jojo! x

[jojo2]

Hi Glenda, like you I should probably be in September starters (actually I posted there today). I'm due to start chemo tomorrow so more or less October!
I'm 51, 3 children 24,20 and 13. Diagnosed in June with grade 2 ductal invasive bc with lymph involvement. Mastectomy July and node clearance august. In the last hour I've started to panic! Hope everything goes ok with you today and your SE are minimal xx

[PeggyCat]

Good luck today Glenda. x

[Boodles]

Hi glenda, hope all goes well today! Did you say which chemo you will be having ? Take all the anti sickness and steroids they give you as they really help xx

[FionaJMD]

Hi Glenda, best of luck for today. You are not a million miles from me. I am in Daventry

[bazza7676]

Hi Glenda. All the best for your first session x

[Babygirl]

Hi everyone. I'm Glenda from Coventry. I have 3 children, 8 grandchildren and a wonderful husband. I had my mastectomy on July 27th . Although not quite October I start my chemo today. I'm about as ready as I can be so come on chemo do your worse. Good luck to you all about to embark on this journey. 

[Ele J]

Thanks Holly, that's good to know! X

[hopefulholly]

Hi Ele, just noticed your post and thought you might like to know that my chemo nurse advised against baby shampoo as it's made to be strong enough to remove cradlecrap but recommended Simple products - they're boring with absolutely no scent but gentle on the scalp and skin.

[Ele J]

Thanks Hopalong, looks like baby shampoo in UK is parabens free too but I might try simple as seems less chemical somehow!

[Mariej2205]

Sorry that should say how chemo going to affect me!!

[Mariej2205]

Evening ladies and hi peggycat
No call from bcn today but nothing new there I hate that I feel so insupported but I do:-(
I also got the dates of the look good feel better workshops today but felt that maybe I'm being a bit premature and I should let someone else have the space until I've started chemo and really need it.
Someone told me today I should make a claim for PIP but had a look at criteria and it's hard to predict how chemistry going to be so not sure what to do? We have free prescriptions and parking at hospitals in Wales and I intend to try and work as much as I can with chemo so not sure if I should make claim or not...
Hope your all having a nice evening! Xxx

[Boodles]

Hi, i had my op in my right breast so i have blood tests , chemo and anything else in my left arm. I was advised not to have blood anything tight on my right arm because of having lymph nodes removed. Also i met with my oncologist about my chemo one week and started chemo the following week... Hope this helps x

[PeggyCat]

Evening all and welcome Ele J.

Marie, hope you got through to your BCN and things are a bit clearer.

Peta, thanks for your eyebrow experiences. I really am not going to worry about the loss of any hair further South than my head I can assure you.

I am booked on a Look Good Feel Better session in a few weeks but it's only five days after my first chemo so I'm a bit worried I'll be fit for it - what do you think? I know the sessions are in high demand and don't want to take a place that someone else can use if I'm not in a fit state. I also have my NHS free prescription card too. I was told they can take around six weeks to come through but was lucky and got mine in ten days so I'd say go for it asap. Your GP or BCN can give you the form - just make sure they don't forget to put the official stamp on it for you.

xx

[hopalong]

Janey the needle they use for your chemo is usually in your hand so they can do your blood pressure normaly but they only tend to do it once at the start of the session.
I ended up with a PICC line as my veins were not good enough.
My pre session was on the Friday and I started chemo on the following Monday, but will depend how busy your unit is.
For the person asking about shampoo I used Herbal Essences 0% range but others used simple. When you read the bottle it will say paraben free.

[Jayneyb69]

Hi all,

Just a couple of quick questions you might be able to help me with, firstly I know I am not supposed to have needles stuck in my bad arm, but what about a blood pressure cuff, usually if you have a needle/cannula in one arm they tend to put the cuff on the opposite, I've read conflicting things. Secondly I've got my chemo induction/ new patient interview on Weds, in your experiences how long after this appointment does the treatment tend to start.  I may post on September also, as a lot of you may still be like me and still waiting. Thank you xxx

[Peta]

Hi Peggy Cat

Eyebrows!  I lost all of the hair across my entire body (say goodbye pubes!) but my eyebrows stayed with me all the way through, until the very last month when they fell out.  Once I finished chemo they grew back really fast, from stubble to eyebrows in about 2 weeks.  So I was only totally eyebrow free for a couple of weeks at the very end.  Other people have different experiences, but you never know, your eyebrows may make it through! 

The lovely people at Look Good Feel Better will teach you how to apply make-up and eyebrows if you attend one of their free sessions.   They also give you approx £200 of free make up, skin care products, perfume and so on, lots of wonderful top brands in there, Chanel etc, so well worth going to to give yourself a bit of a lift. 

Here's a link to their site, the moderators may remove it.  If they do google "Look Good Feel Better"

http://www.lookgoodfeelbetter.co.uk/about

Also remember that you are all entitled to free prescriptions now, you have to apply for your exemption certificate.   My doctor didn't want me to come into the surgery at all when I was doing chemo because of the risk of infection, so we switched to telephone and email consultations.  Your GP may offer the same thing.  Basically I just emailed or called whenever I needed a drug or advise or something and they sorted me out immediately.  

Make sure you have bought a digital thermometer, you need to take your temperature and they are much more accurate and easy to use. 

[Mariej2205]

Hi all hope all having a good day! peggycat no date yet for chemo to start waiting on scan results to check aneurysms...oncologist did say though we have to start before 12 weeks since op and I'm on 8 weeks now.. I feel better now I know you also have only seen oncologist so far...bcn will be ringing me today so I'm going to have a chat with her thanks for you help. Have a nice day!!