Kip has given you some really useful advice there, especially the hydration. I don't know how you are having your treatment, mine is EC and is given via a cannula in the back of my hand. If this is how you'll be having yours I will add that make sure your hand is warm (keep it wrapped up) prior to your chemo, this also helps to keep the veins plumped on nearer the surface of your skin. I didn't realise my hand was cold and they couldn't see my veins so I had it wrapped in a heated blanket for about 30 mins then they got my vein on the 2nd attempt. I've only had the one treatment so far but will definitely be keeping the hand warm for my next one.
Unlike Kip I found eating in snack form increased indigestion but it resolved itself when I went back to eating 3 meals a day (no snacks). There are no hard and fast rules and you will find what works for you.
Like Kip, I didn't cold cap either and today (day 15) it's started shedding loads - have booked a hairdresser next tuesday (if I have any hair left) who specialises in chemo patients so hopefully she will tell me if I need to cut or shave. I've got my wig ready, which is uncannily like my original hair (the hair I had before I've gone grey and can't dye now) so that may be making its debut next week. If I don't get on with that I've also got some scarves and hats cheaply off ebay ready. Although I feel sad it's shedding at least I know the chemo is attacking the fast growing cells as it should be.
I had the injections too, the only side effect I had was after the third one when I suffered backache in the lower lumbar region but that responded to paracetamol and cleared up the day after my last injection. The needles are very fine and don't hurt, it's the thought of them that does. I gave them myself but did sound a fright when I was taking a deep breath and making whooshing sounds as I did it - the kids wondered what on earth I was doing. Some peoples husbands/partners help them with theirs and others have district nurses, it's whatever you feel comfortable with. I would say that a good thing, if you could possibly do them yourselves, is that you can fit them in when you want. My chemo nurse suggested to do them just before you go to bed as the worst effects would be when you were asleep - it worked for me. If you have to wait for the district nurse it could be anytime due to the number of patients they have to fit in - don't let that put you off though if you think that is best for you.
I'm not far in front of you and do know how scary it all is, it's hard enough coming to terms with the diagnosis never mind the wait and worry about tests, results and treatment plans, very anxiety provoking but we will all get through this, especially with the help and support from each other.
Thank you so much for the info this has really helped me so pleased it is all over for you.
Hello Dear May 2019 chemo ladies,
Firstly, sorry you have to be here, but all the same welcome, and glad you have found us. I thought I would pop in and add any titbits of advise I can regarding chemo, hair etc. I was diagnosed last year in April, had single mastectomy (no recon) then 3 x FEC and 3 x T chemo, followed by ANC (node clearance) and then 15 x radiotherapy and finished on 19th December. Where you are now is a scary place, just starting out, getting your head around whats happening and trying to understand all the terminology etc.
Regarding chemo I found with the FEC I generally felt a bit groggy and slightly nauseous for the first few days (bit like being pregnant I found), I ate little and often (you will find you just have to eat what you can when you can really), nibbling on dry crackers, ice lollies, ginger biscuits and lots of boiled sweets helped. After a few days I picked up again and was able to work throughout my chemo (I do have the benefit of working from home and only part time though). Make sure you drink plenty of water, especially the day before, the day of and the day after chemo, this helps keeps the veins plump and rehydrated and to wash the red part of the chemo through (The E part of the chemo makes you have red wee for a day or so.. don't panic). Be aware you may get an emotional slump when you come of the steroids after the first few days...it happened every cycle but I knew it was coming and so did hubby. It passes, try to do something even if its just a walk round the garden, it really helps to keep moving if you can. Having said that, if you feel you need to rest and sleep then do exactly what you body needs. If you get the "slimy mouth" part of chemo, some foods taste nasty, tonic water, lime cordial, ginger and fresh pineapple seem to taste good for a lot of people.
Importantly take the anti sickness pills you get given, take your temperature regularly and report any high temps to the chemo hotline number you should have been given. Don't be scared, I was for the first couple of times, but they are there to help you. If you find your sickness pills don't work for you, tell them, they have lots of different types and you may need something different. Oh just remembered... the steroids can cause constipation (or sometimes the other way) so good to have something on hand just in case. I was recommended a bottle of Lactulose and took a spoonful for a couple of days during those steroid days when things got slow. Indigestion can be a problem too, I had some Gaviscon when that was a problem. Sorry this sounds all doom and gloom, it really was bearable, and you get to know what works for you and hopefully you may not need any of this. Keep a diary of your side effects, they usually follow a pattern each cycle and you can tell the nurse at your next cycle if anything needs help.
The injections: some of you seem to have the self administered injections... they are scary but not to hard once you have done one. You may experience aches and pains in legs, back after them but you can take paracetomol/ibrufen if you do and it usually lasts a few hours or so.
Hair: I didn't cold cap, just didn't want the extra time on each cycle but lots of ladies do and it works for them. I was given a voucher towards a wig (I had to pay the first £70) and got my wig before the hair went. I had long hair which I cut into a pixie cut before chemo, and 12 days after the first cycle it began shedding big time, so I braved the shave. I won't lie, that was a tough day. But once it is gone, its gone, you just have to move on, lots of scarves, hats and things out there, and you save on shampoo!! You may find your head tingles when the hair is going to shed, it can get quite uncomfortable but once I had shaved it, the head was ok. My hair had started to grow back by the last chemo cycle and now 8 months on I have a thick head of "grey curls" (not what I started with but hey ho).
I hope I haven't scared anyone, I remember how I felt, but I got through it, managed to go out still (just avoid crowded places on that middle week when your immune is low), keep on the forum, you will find others drop in with bits of advice, keep ticking of the days and soon this part of the treatment will pass.
I am going to give cold cap a go also first time just to see start my treatment on 21st but tests before feeling very apprehensive but have found this forum so useful. Hope it goes ok for you on 17th.
Looks like I am joining the journey with you guys various appts next week with Chemo start of 17/5 at the stage where just seems a barrage of information.
Thinking of trying the cold cap at least once just to see if it makes a difference or not.
I will know what treatment plan is on Monday was stage 3 er+ 8/8 11mm but with oncotype result of 36 will have to take chemo route not just rads and hormone therapy.
Looking forward to understanding more soon and getting started my head sooner started sooner over🤞
I swithered with this decision too but decided not to go with cold cap. My reasons were that firstly there are no guarantees and the nurses kept telling me even if it works it usually only reduces hair loss by 30 percent. I felt if even some hair was coming out id be better taking control and getting rid of it all. Mines started coming out on day 16 after first chemo so i had it shaved it was very long but compared with everything else i was going through losing my hair wasnt as shocking as i expected. Im wearing scarfs and hats and comfortable with that. I got a wig too but not so comfortable with that.
Thanks for your reply.
Eeek on the glasses £££ but important for us to look as good as we can and for the practical things to work.
Like you, I hate taking pills and only take them as a last resort so this goes very much against the grain for me too.
That said, as a child (aged 2/3) I took a whole tub of junior aspirin which required a stomach pump and then a few months later downed a bottle of paraffin!!
You are right about not knowing which side effect is from which medication. I have my last injection this Friday and I
am looking forward to not actually taking any pills for two weeks until the cycle starts again.
This morning, after 3 days remaining in the house as I felt so awful, I showered at 8 and was out with my dog. I stopped off at Waterstones for a Chai Latte and had a read and some more pottering about and walking my dog on the green. Very simple stuff but it was so good to get out. I managed to avoid the rain too.
When I was out I got quite clammy and hot and feel quite faint sometimes. I just found a perch when I felt like that.
A difficult period we are all going through.
I have read your posts and I am writing to you about the cold cap.
I had my first treatment last Thursday (FEC) and decided to use the cold cap.
My hair grows very slowly so I thought I would give it a go.
So far no hair loss but I haven't had any hair loss from anywhere as yet and it is only 6 days.
Last Thursday I sat next to a lady who was in for her 5th treatment of FEC-T.
She has used the cold cap each time and has a full head of hair. She told me it had
thinned a bit but it looked completely normal to me.
The first 10 minutes of the cold cap is not great but it does get better and I coped fairly well
afterwards. That evening my head felt a bit strange but I didn't have any headaches.
At the hospital I am at they have a machine which is attached to the cold cap continuously.
I read that some hospitals don't have these machines and they have to re-chill the caps every 20-40 mins.
It may be worth checking what type your hospital has if you haven't already done so.
Hello girls - thank you for your responses.
Joemic, I've consulted with Doctor Google (!) and after a bit of digging, it seems that the decision on what type of chemo you have is based on many things, including size, weight and blood pressure. I have high blood pressure so perhaps that's why I'm having TC?! Goodness knows really, but it's as good an explanation as any!
Jury's still out on the cold cap. I might give it a go on the first one and see how it goes.
Hi Mars and welcome
Like you I am grade 3 stage 1, my onco test score is 40, blimey I thought mine was high but yours is the highest score I've come across so far - scary stuff isn't it. My chemo is 6 x EC followed by radio, it's strange isn't it how we all seem to have different chemo regimes when we appear to have the same type of bc, I wonder how much it is down to our oncologists preferred regimes, I think I'm going to ask my oncologist why this, is not challenging their decisions (I bet they have a lot of studying to do on each person) but more out of intrigue.
I hope your oncology appointment manages to allay some of your worries (I think we have plenty of them). I myself decided not to cold cap because I believed I was putting my body through enough trauma with the chemo, bisphophates and the radio which is to come, oh and hormone therapy not to mention the physical trauma I had with some of the tests to diagnose - one of which I found extremely painful and still have pain from now; so all in all I decided enough was enough and as there are no guarantees it would work, I wasn't willing to risk it. That being said don't let what I say put you off, there are many ladies on here who have cold capped and very successfully and some not so, just another decision for you to make.
I don't know how it is in your area for cold cap but I think some areas need to book it prior to your start to ensure they have one available - maybe book it then it will give you a little longer to think about it, if you decide to go ahead it will be all set for you; you can always decide not to go ahead with it if you decide it's not for you. I wish you the very best for whatever your final decision may be. Good luck with your t
I am from the February group and I am sorry to see you here. I tried the cold cap, I did cut my hair short as I had long thick hair even though I am 65 😀. It did not work for me and I lost all my hair after one dose. But there are others who have kept some hair. It is not comfortable but bearable. I think it's probably worth trying it once at least. You never know it might just work for you. I hope you get good news from your scans next week. Good luck. Dip into the other monthly threads there is loads of information and support available here. Us in the February thread are really chatty as you can see by the number of replies.
I'm new onto this site and have been reading your journey's so far. It's all like a whole different world following diagnosis isn't it and hearing about everyone's experiences has been so useful for me but upsetting at the same time (upsetting for us all as we're having to go through all this stuff and we didn't see it coming). My heart goes out to you all.
Following a routine mammogram, and then ultra-sound/biopsy, I had surgery 5 weeks ago to remove 2 tumours from right breast - Grade 3, Stage 1. SNB clear. Oncotype DX test score was 48, therefore TC Chemo is planned, followed by radiotherapy. As I have severe back pain I've recently had a bone scan, CT scan and next Monday a DEXA bone density scan.
Next apt with the oncologist is next Wednesday. I just pray that the scans don't show anything related to cancer. At that apt I should also be given the date schedule for the chemo, which he did say the aim was to start during the week of 20 May, then every 3 weeks - 4 treatments in total.
I'm currently trying to decide if to go with the cold cap option during chemo but I'm really struggling! Apart from the fact that it adds a couple of hours to the treatment time, if you can't wash your hair too often and can't use any heat on your hair (drier/straighteners), I'll need a wig/hat to cover it anyway. My hair without straighteners being used is a scary sight. Added to that, there's no guarantee that a cold cap will save the hair, so I'm really in a ponder over it!
Have any of you decided on this yet?
Love to you all.
To be fair I don't know what side effect is from what i've had so many things - the EC with Bisphosphate and then the injections, oh my goodness and this is from someone who rarely even took a paracetamol. I find it difficult to come to terms with the fact I have to take all these different meds just to prevent recurrence and that's before I'm landed with a hormone tablet as well.
But on the positive side this week I can honestly say I feel my usual self no nausea or fatigue. I am making sure I drink plenty and walk for about 3 miles a day (I haven't lost any weight or inches to say I've increased my activity levels though!).
Whether my next cycle will go as well I can only hope. As regards the cold cap I really don't think there is a right or wrong answer and good for you for deciding to go for it I really hope it works out for you, I've got an appointment at my local cancer Aurora charity which helps you with scalp care advice, headwear choices, basically they help you prepare for hair loss and I've been to my opticians to get new frames, I wanted them to cover my eyebrows so it won't be as noticeable if/when I lose them. I got a bit carried away and had them made into refractor? lenses so I don't need to keep changing to sunglasses when I go out, I nearly passed out when they said £300 - why do they never seem to cost that much on TV adverts lol.
I hope you start feeling better soon
I thought I would say a quick hello after reading your post to Spicey.
I started chemo last Thursday and have had mixed days since. Great on some but wiped out on others.
I also started the injections on Saturday which seem to have effected me quite a bit - much more tired
but perhaps that is the whole lot of everything that has been taken in the last few days.
I have opted for the cold cap because my hair grows so slowly.
I hope you are managing well, it is all quite scary and a comfort to chat to people who are experiencing
the same things.
I started my first chemo treatment last Thursday and I was very apprehensive and nervous too.
I felt good Friday evening (the day after treatment) and on Saturday I was able to walk a few miles
(flat, not hilly) and also visited friends in the afternoon. I haven't been too clever the last few days
and have slept a lot. I think I wasn't getting enough sleep before then - only about 5 hours at night.
I also started the injections on Saturday evening which seem to have effected me quite a lot.
Are you having FEC-T?
Happy to chat if you would like to.
Hi, I will be having my first FEC on Monday 13th. From the beginning I have felt determined to throw everything at the beast! As the day approaches I am getting more apprehensive though, it's the unknown that I worry about, everyone seems to react differently. I plan on trying to work throughout treatment if I can, to keep some normality in my life. I really don't fancy the cold cap or wearing a wig so if/when my hair goes it will be scarves etc for me. I am telling myself that every side effect I suffer is another step toward the end and a better chance of no recurrence. I wish you all the best xx I will join the May chemo starters thread next week I think too. Hope you don't feel bad for long. X
You wouldn't have been told about the onco test because you are Her2 positive. I think it's because you have a targeted medication to zap the her2 positive and it's generally given with chemo; there are many women on the forums who are her2 positive who will be able to advise and help you much better than me (I'm her2 neg so this doesn't apply to me).
Your oncologist has told you much more than mine did me - just that my score was 40 hence chemo. I had better ask many more questions next time. Good luck with you're treatment and let us know how you get on on the May 2019 thread, (most people are on that one)
I was originally told lumpectomy and radiotherapy.
I had invasive DC, my tumour was 2.7cms. I had to have two further operations to get clear margins.
My tumour is ER+, HER2 neg and node negative, grade 2.
My surgeon asked my oncologist to do an oncotype DX test which had a RS score of 29. Anything above
25 they recommend chemotherapy. My oncotype report also stated that there was an 18% risk of distant
recurrence over 9 years and an absolute chemotherapy benefit of 15%.
Have you asked your surgeon why he didn't put you forward for an oncotype test? Are you HER2 positive?
I had my first FEC chemo yesterday. I didn't feel great last night and very lethargic today but this evening I am feeling
not too bad at all. I have been taking the anti sickness tablets which have done the trick today.
I also opted to use cold cap. It is a bit strange and initially unpleasant having head freeze but I am doing it
to try and prevent hair loss as my hair grows soooo slowly.
i am new to this do not sure if I have joined right? I had my first fec on Monday & still feel total **bleep**! Looking to see how others feel please?
Thanks so much for your replies so helpful I am HER2 positive start chemo on 21st x6 then 3 weeks radiotherapy. Hope your treatment goes well and will join the May Chemo thread to see how your getting on. x
Forgot to say join in on the May 2019 thread, it will get busier on there the more people who commence their treatment in May.
Welcome to the May group - not that any of us want to be here but I'm sure we'll all get to know and support each other through this darned disease.
I don't really know much myself but am trying to navigate the quagmire as best I can.
Like you I am grade 3 and was initially going to have lumpectomy and radio but have found myself in this scenario - still trying to get my head around it. Are you Her2 neg ? I ask because I had the oncotype test as I fitted the nhs criteria i.e ER+, node neg and Her2 neg. I ended up with chemo because my score came back as 40 (high risk of recurrence).
I am on 6 x EC - I had my first one last friday, also had bisphosphates (I will be having this every other chemo and will then change to tablet form). Luckily I have had very minimal discomfort just a bit of indigestion the first couple of days, the pre chemo nausea meds worked wonders for me. I was extremely tired for 4 days though and slept most of them.
I was surprised when I was sent home after my chemo with a course of 5 injections - hadn't been mentioned before. After looking around the forums it seems to be a normal treatment but I think people might have them for different amounts of days.
I was petrified before treatment and to be honest I still am, it's agonising hoping you make the right decisions.
I chose not to cold cap (didn't want to inflict any further trauma on my body, I suppose it is my little bit of control over this thing). Many ladies have chosen to do the cold cap so maybe have a look at their experiences, then you can make a balanced decision what will be best for you.
I am sorry you have lost your husband, this must make it even more difficult for you. There are many ladies on here who will be more than willing to help and support you and will be along very soon to say hello.
If there is anything I can help you with please give me a shout - we're all in this together.
Hi I am starting treatment on 20 May after lumpectomy grade 3 not spread to lymph nodes have read about the Oncotype DX test on here but not been mentioned to me at hospital. Feeling apprehensive about treatment as originally was told op then radiotherapy so chemo is a bit of a shock. Sorted a wig today would appreciate any tips at all really to help go through this lost my husband so going through this on my own. Many thanks.