July 2017

[Mishy18]

2nd fec today fingers crossed this one is kind to me!! Drinki good lots of water for my veins! Had weetabix for my bowels!!! Learnt that I don't want to be bunged up on top of everything else!
Need to ask for a wig voucher now I'm officially bald cold cap didn't work for me but don't be put off if your going to try it as it works for some x

[tatyana]

Hi missaconitum, I was on clarityn for hay fever and they said it was fine to continue, but I still got insomnia! Best thing for me is a small halogen bedside light that I can point at an angle so it doesn't wake my OH, and a good book. I've been able to catch up on sleep during the day, but I'm lucky as I work from home and can choose my own hours. Hope you get some sleep!

[Anniej]

Hi Missaconitum, I would ask your medical team or GP before taking anything extra. They can give you something that doesn't affect your chemo drugs. I'm like Mishy, just went with the flow. Woke up, cup of herbal sleepy tea (yuck) read, went to sleep again. Had lavender pillow spray which made it all smell lovely, but don't know if that really helped in early days. Most useful was Pilates relaxation techniques - I found the local Maggies centre offered classes. Very helpful not only with sleep but stress. Hope you get some sleep. X

[Mishy18]

I was scared to take anything else on top of all the sickness stuff and chemo so just put up with it I would ask your chemo nurse or onc when you see them they will probably advise you better x

[Missaconitum]

Hi all, hope everyone is doing okay? Anyone got any advice re insomnia? The first 2-3 nights after chemo I'll be lucky to get more than a couple of hours. I'm wondering if taking a piriton would help as it always makes me sleepy when they done my pre-meds.

[Mishy18]

Hi Annie how are you doing, it's lovely that you have decided to be a community champion BTW you kept my pecker up in my earlier days of diagnosis and still thank you!!

Yes I will definitely call in and look at the scarfs I have one which I got just in case but need some more now, I don't even know if they will let me cold cap anymore for the state of my hair this morning I have woken up to something resembling a birds nest all matted and patchy x so I think for my own sanity it will have to go x I think I will ring chemo unit and ask what they think xx
I'm definitely ready for round two, hoping I have no hospital visits this time mind you it just goes to show we all have different reactions to it and some peoples bodies are more tolerant than others x

[Carole M]

Please also join our Facebook group on Breast Cancer Care July 2017 Chemo Starters

[Anniej]

Mishy, pop into Macmillan on ground floor. They have great Fairtrade headscarves and the volunteers will show you how to tie different styles - and give you a bobble to make little artistic bits! I'm wearing the pretty scarf with straw hats over the top. Feel quite glam - very different for me!  💝X

[Mishy18]

Hi Tatyana welcome there are a couple of July threads on here I tend to pop in and out of both I'm a TN too, doing the Fec t had first one with two hospital admissions in first week! Same as you low blood pressure and temp resulting in near fainting and extreme weakness xx fine in 2nd week having next one on Monday x baldy patches all over the shop as cold cap hasn't seemed to have worked x
But onwards and upwards it will all be worth it in the end and yeah think I'll go on u tube for some head scarf tips cos loos like I need them!!

[tatyana]

Hi all you lovely ladies,

I started my FEC-T on 30 June, so I'm hoping I can stretch a point and join the July group! A brief history: My first diagnosis was in  June 2002, I had a lumpectomy, radiotherapy, 2 yrs zoladex, 5 yrs Tamoxifen and 5 yrs Letrozole.  Job done.

Then in May 2017 I got a whole new diagnosis: Same boob, same place, new primary with entirely different characteristics from the first one. So here we go again!

This time I'm triple-negative (so a special hello to Karen on this thread -- nice to meet you!), and the plan is 6 cycles of FEC-T (3 of each), followed by mastectomy.  Well, it's nice to have something to look forward to at the end of my chemo!

Well, my first chemo made me very sick; but they added Emend to the package for my second session (which was Friday 21st) and it made all the difference.  So I want to say to anyone out there who's suffering from nausea, do say yes to any additional meds that they might offer you! 

First time round I ended up in A&E twice -- once from the nausea, the second time because I fainted due to random low blood pressure (scenes of high drama in the village hall car park).  Second time round, I'm keeping my fingers crossed, but I'm avoiding the drama-queen action so far. Felt very washed out & feeble for several days (not helped by the fact that it was our wedding anniversary on Wednesday), but I've perked up a lot now.  Just wanted to say, it's lovely to have discovered this thread and the wonderful supportive message from all you people.

Now I'm going back to watching YouTube videos on all the different ways to tie a scarf!

[Mishy18]

Thanks I'm sure I will be fine probs just teething problems! Good luck with your next one too I'm sure you will be fine too the docs know what they're doing x

[Lindyloo]

Good luck for your next chemo xx

[Mishy18]

Hi I went in two days after 1st fec with weakness low blood pressure and sickness no vomiting but constant water brash and retching had fluid drip for two days it totally wiped me out which meant I only began to feel better after 10 days where I could leave the house next dose has been slightly tweaked to try to aliviate the symptoms maybe they will do that for you I know I'm bricking it for next one this Monday coming x

[Lindyloo]

Hi

i had my first round of FEC-T on the 19th Jiuly, and on the 20th I was hospitalised with severe headache and vomiting. The headache started just after the chemo was finished and got progressively worse as the day went on. I was admitted the next day and given IV morphine and fluids for 3 days, has anyone else had this problem I am due my next round on the 9th August and dreading it 

[Mishy18]

Good luck for today hope you aren't too scared not everyone reacts to chemo the same hope you are OK with it x Claire never heard of it my next one Monday hoping I'm better this time round onc has slightly tweaked my dose to see If I am better on it x

[JA48]

First chemotherapy session this morning.  EC,  all your posts have been really helpful,  I feel more prepared than I did.  Terrified but prepared ! 

[Clare01]

Are any of you ladies having Abraxane chemo drug as that's what I'm having instead because of a really bad reaction on the other drug I was taking? Thanks

[Clare01]

I've got to start another chemo drug on Monday got to go christies for it now as the other one I was having had a serious reaction, hopefully this will be ok and I can get back to my treatment fingers crossed x

[Mishy18]

My hair is still on my head atm after 1 round of fec with cold cap I'm day 10 so expecting to shed soon if it's going to fingers crossed eh! God feeling so much better today hopefully next time won't be as bad having dose tweeted a little, I went for a walk, did a little garden pruning x eating more actually really hungry!
Maggie centre called have booked me on a look good feel good Monday coming so I'm going to that x hope you are all well x

[Missaconitum]

Finished my first cycle of weekly Tax and Carboplatin today. Pleased to say the cold cap thus far is working and my hair seems to be staying in my head... Touch wood!
I know this might sound daft but has anyone who has had chemo first noticed a change in their tumor(s) after treatment? I've had a prod of mine after each session and it does feel noticeably less hard. I'm taking that as a sign the drugs are working.

[Mishy18]

Hi everyone hope your all having a good day and feeling well x

[AliOG]

Hello to the new ladies that have joined us. It's great to know that you've found our comments and shared stories useful. I think between us we have a whole heap of experiences that can really help see us through treatment so welcome aboard!

Mishy18, sorry to hear you've been going through it. Hospital admissions are what we all want to avoid but when it happens, just take comfort in knowing you're in the best place. Your docs sound like they know what they're doing so hopefully things will settle down.

Ive woken up this morning with more hair on my pillow than I would like to acknowledge. Turbans at the ready! 

X

[Mishy18]

Annie I am religious with mine, touch wood never been high, but surprisingly when I had to go in mine was quite low also not great they said, and low blood pressure again not good, my lovely nurse told me to drink fluids constantly and drink through the night if you wake up, I had to have 3 fluid bags because of my low blood pressure so watch out for signs ladies, extreme weakness I couldn't even speak I was so weak could only muster 1 word answers xx

[Mishy18]

Oh Carole hope you are OK, sorry to hear that you are in hospital x Claire I bet you had a fright when that happened, you know ladies we are all going through something quite shocking putting our bodies through this and yeah it can be quite scary Annie you are certainly not a wuss, but know how you feel as I felt so guilty for being in hospital within two days of first one, I scared the pants out of my family which kind of made me feel worse but you know when you aren't right when you ask to go to hospital! I feel better today and have lot of questions for my onc at today's clinic,

I normally ask alot of questions but for some reason I haven't much up to now, my nurse who looked after me whilst admitted was fantastic came and chatted for ages and did say that the best patients are the one's who ask the most questions!!!!

Anyway ladies hope you are all well x take care for now x

[Anniej]

Ladies, dipping in here re temps. I had a very thorough pre chemo assessment including excellent advice re temps. Onco nurse advised me to buy as good a digital thermometer as I could afford. ( Got one on line in sale) To take my temp morning when I woke , and night before I went to bed, and to record temps. I also was given a sheet with side effects detailed on it, including temps and the dreaded rigors which happens in extremes. The body convulses and shakes to get rid of the heat . You need to get to the hospital asap( 1 hour) if that happens before the body goes into shut down.

The advice I was given has really been invaluable as each time I phoned the alert number I was asked when I last took my temperature . So far I have been hospitalised after each of the first three chemos.  Unfortunately I have also suffered rigor with a temp of 39.9. So the message here really is use the thermometer! X

[Anniej]

Mishy, I know exactly how you feel. X. I felt such a wuss too, ending up in hospital overnight just 24 hrs after having the first treatment! What was that all about?? The second time wasn't funny either. That was three days in hospital. My Onco reduced the dosage to help me tolerate it better. I tried to fight the decision, saying I was sure I could manage, that I needed the full dosage to make sure it didn't come back. He explained that he was helping me, that this treatment we are all enduring is adjuvant (additional) that the tumour has gone along with the cancer. Belt and braces he said. After the third admission he told me the risks outweighed the benefits , and that I could do one more and then that was it! He said four was enough, and Mishy, I have to believe him. So, you aren't a wuss, you have to listen to what your Onco says. As I realised, they want successful outcomes for you, so a reduced dosage is good and you will get there. In the meantime rest and let your body recover. All the best. 💋🍀

[Carole M]

I didn't realise I had a temp of 38 until I checked it routinely. It rose quickly to 39c. I'm still in hospital 3 days later. See post below x

[KJ1]

Hi ladies I have been following you from a distance and also found all your comments helpful.l am er +her+grade 3    2cm have had a lumpectomy and started chemo a week last Friday.  Fec 

l had a cold last week and a bit of a cough but was at work and felt fine. Friday l read a few forums and one about bleeding gums and taking temperatures. I didn't think l had a temperature but took mine just to be sure and discovered it was 38.1 rang the hospital and was admitted. So want to say thanks for making me think to do this and also to  Let others know that it is not always obvious when you have a temperature so check just in case.

also I have read about some finding that the tummy injection stings. Mine have been fine had home but when they gave it to me in hospital it really did sting.  The only difference l could see was that the chemo nurse told me once the injection is in to slowly push in fluid whilst the nurse did it really quickly. If you are having trouble might be something to think about?

Has any one else had low immune system how quickly did you recover and do you know if you have had this once are you more susceptible to it in the next round? My cough has almost gone as was given intravenous anti biotics but can't go home yet as my levels have gone down. Hoping they go up tomorrow so l can to go home but really can't complain as l feel well.

[Carole M]

Ladies don't forget Facebook group at Breast cancer care July 2017 chemo starters

[Carole M]

Well I was admitted to hospital on Thursday night day 14 of first FEC cycle with a temp of 39c. Still here now and been on IV antibiotics since then. My expander implant and port has a raging infection which doesn't want to go away and my temp won't settle. I'm due next chemo on Friday and I don't think it's going to happen. In fact I think it's likely I'm going to have surgery to remove it all. A complete pain as I've gone through a lot to get it, but my priority is to get on with the chemo before it's too late. Nobody has mentioned removing it but there's been no doctors around since Friday to even look at it. I know my surgeon won't be keen.

[Diamster]

Hi all,

Been lurking for a while soaking up all the wisdom on all the forums during my time since diagnosis and surgery.

Well my Oncotype score was 29 and I've been advised to have FEC x6 starting on 19th July.

I've been so inspired by you ladies and all of your stories and advice have given me strength and reminded me i'm not alone.  

My week has been a mix.  I had 6 inches cut from my hair this week (didn't like it), but also had my wig appointment which was actually good.  NHS in Scotland is very generous and I got an incredible and quite expensive wig which looks super natural so thats one less thing to worry about.

My big downer this week is my pre-chemo dental.  I had cosmetic work done qutie a few years ago (had very Esther Rantzen/horse teeth) and I was told this week that one of my front teeth wasn't done correctly and that the dodgy work has created a gap under my tooth which is an easy route for infection (even though its not infected now).  I have to have one of my front teeth removed completely and will have to wear a denture until my treatment is finished.  I'm 41 for gods sake!!  This just feels like the last straw.  I will be bald, swollen and toothless like a giant baby.  /rant over

Keep your chin up ladies and keep ploughing through it.  I appreciate each and every one of you.

[Shazza 52]

Hiya ladies

About to start Chemo on 24th. Will keep you posted.  Hope you're all doing ok 🙂

[Mishy18]

Hi ladies just home today from hospital stay was on a fluids drip and monitoring due to an absolute crash of exhaustion low blood pressure, was really worried as had been in over night then back in again by Thurs evening 😞 to be honest I was relieved as I felt so ill I was worried Annie I know you had a few hospital ads during treatment x the staff in freeman are fab have told me not to hesitate to ring and go back if happens again, feel better today managed a few bland light meals so fingers crossed,

On call onc said I need to speak to mine on Monday in clinic review, in case may feel my dose etc needs tweeked as it's quite high so fingers crossed x
I felt like an absolute failure not being able to cope with my first dose but they have explained everyones body copes different to chemo xxx
Sorry for the moan girls hope you are all doing well on yours x

[Clare01]

Hi ladies I hope you all are welll and the treatment hasn't been too bad for everyone upto now?

it's been a funny and stressful week for me it started off as positive I decide to brave the shave and shave  my hair off before I start loosing it completely what better way to do this is for charity. Was nervous of how it would look but it wasn't as bad as I thought it would look. everyone said it suited me which was a bonus, I was laughing while it was being done on the plus side I raised £250 for Macmillan and £250 for christies which I am well happy as I raised that within a week. Felt so good about it and to give something back for the great care I have received while going though treatment.

Then yesterday i was told my job was being made redundant and that I wasn't chosen for the new job roll, I knew about this a few weeks ago but this just confirmed I hadn't got the new position if timing couldn't of been any better right now kick me while I'm down that's for sure. The stress hasn't done me that good if I am completely honest try not to show it as my mum will worry as her health isn't always that great.

Then today I went for my third session of chemo after the drug was just getting into my system though the line in my chest It first starts off with me feeling dissoranted and then a really strong taste into my mouth. I had tummy pains then developed breathless and difficult breathing and my blood pressure went really high. then it made my face go bright red it was awful as I didn't know what was happening i was scared. Good thing my mum was their to let the nurses know about what was happening, they reacted right away to give me drugs etc react against this. I was told I couldntcarry on with the chemo drug today because of this as only 6 mg of the chemo drug was put into my system and my body to react to quickly against it. I was then checked over by a dr and I was allowed to go home a few hours later once my breathing got back to normal and my obs were taken on regular intervals. I did have a reaction towards the chemo drug over the weekend but it had died down within a few days of taking piritol and e45cream to get rid of the rash and pimples which appeared on my face, chest, neck and back. So when my body realised what was going into it today must of thought I'm not having that again. Only could happen to me was told they can either sort out what to give with my next chemo session so I can keep taking the same one or change it to something completely different, as I have 10 more to go yet with the herceptin every three weeks.

has any other of you ladies had the same reaction to the paxitaxal drug at all? Hope I've spelt it correctly.

sorry for the long message just needed to get all this off my chest as I don't think all he stress I've been in this week has helped the situation today at all. 

Thanks clare 😊

[Missaconitum]

Hi Cpott, hope you're feeling a bit better today? I think we all have good and bad days- just try and take it one day at a time and if you're really struggling see if your breast care nurse can refer you to someone?
Welcome Brenda. Sounds like you've got a busy week or so coming up with the wedding! Something nice to look forward to 😊

[Brenda b]

Hi people                                                                                                                                                                   I am new to forum, i started chemo on 5th July  FEC T  into my second week  have had mastectomy,               Have finished my tablets ,then felt a bit sick a couple of days after so took sickness pill. My mouth feels like the bottom of a fish tank and my eyes are sore have lost my taste buds  but that's it. I've got my wig ready for when my hair starts to fall out luckily that won't be till after our daughters wedding next Friday.Its nice to know there are people out there. Xxx

[Anniej]

Mishy, poor you. Are you doing temps am and pm? I keep a little diary - day of cycle, temps, symptoms, foods etc. It's helped to chart similar symptoms for each cycle, so I can see when I am lowest and prepare, and when I am on the up. Just climb into bed, girl, and call in the troops. You can't battle chemo fatigue as it is so different to just being tired . Thinking of you. Big hugs. X

[Cpott]

Having a really tearful day my first one

havent used the forum before I have my second chemotherapy on Tuesday 

day 16 for me I'm sure I will feel brighter tomorrow 

[Mishy18]

Hey Annie ended up in hospital overnight went in Tuesday as temp was low and feeling ugh x gave me antibiotics but bloods weren't bad so they sent me home yesterday still feeling awful although I haven't been sick I'm very weak and have got bad water brash, hoping I will start to feel better soon as it's my first one!

[Missaconitum]

Good luck with the house move Angela!

Welcome Mrs J. I found the forums very useful in preparing me for my first round - everyone deals with chemo differently but some pointers from fellow members did really make the whole thing less stressful. Feel free to ask!

[feelthefear]

Morning ladies. I hope you are all doing well. I'll be signing out for a week or two as moving house tomorrow. Catch up soon.
Angela

[feelthefear]

Hi mrs j. Welcome to July starters. I had my first fec last Tuesday. Not nearly as bad as I feared. Two to three days of chemical hangover and a bit of constipation and that's about it.
Drink 2 litres of water the day before chemo and then another 2 a day for the following 48 hours. Also, I read somewhere that eating carbs before chemo helps with nausea. I'm not sure how true this is, but I did and haven't had any sickness so I suppose you've got nothing to lose giving it a try. X

[mrsjmm]

Hi all, I've been reading loads of posts on here and thought I'd join in the July chemo.  Appointment with oncologist yesterday after WLE and SNB in May. ER+, HER2+, clear nodes and chemo starting 20th July, FEC-T 6 cycles and herceptin. Not had a lot of time to think about it but feeling ok about it too. Reading all these posts are helping get organised as not had much info at all.  nurse did say she would post some stuff out so here's hoping I get it before 10am next Thursday! xx     

[Anniej]

Mishy, bleeding is not good. Phone up and check. The wounds won't heal with chemo and you don't need any infections! Are you using a baby toothbrush? It's much softer and won't scratch. I've got aloe vera toothpaste from H&B, plus Manuka honey 15+, So far no ulcers - 🍀. X

[Missaconitum]

Had a hickman line put in today. Given I almost fainted from just the blood test (I really am not kidding about the my veins 😂) it's probably a good thing I had it done sooner rather than later. If anyone wants any information I'm happy to pm.
Hope everyone is doing as well as they can at the moment!

[misyangel]

Mishy18 just popping in from May thread, I had really bad bleeding gums on first chemo and had to buy a children toothbrush I metioned this at my next review and I was given a mouthwash called Benzydamine which you use for 7 days and I have had no bleeding since then and have been using my normal toothbrush.

[Mishy18]

Hi I rang chemo unit recommended using corsydyl for a few days brushing lightly and if it happens again to ring them up x I was quite scared when it happened but only lasted for a few minutes and the corsydyl worked apart from that I feel not too bad! Like u all described a very bad hangover x

[Carole M]

My emergency card says to ring urgently with bleeding or bruising.

[feelthefear]

I'll just add that I'm also using a child's soft toothbrush which may be helping.