re the pain,when did you have biopsy, and did they put titanium markers in before chemo? My core biopsy was 9th Jan, and marker went in 26th Jan, and it's taken until now for the pain, bruising and swelling to go..after all the steroids it was worse.
It sounds like you are feeling a bit better, but if you need to rest or stay in bed then that's obviously your body telling you what it needs. Everyone reacts differently to this and I don't think it's easy for any of us regardless of how little or great the side effects are.
Ann, hope you are ok. I have moments of wishing I could just walk away from all of this but I can't.
Vouchers for wigs seem to depend on the nhs health trust. I opted for chemo via my employer's healthcare scheme as it avoided another 2 week wait on nhs, so I don't get any vouchers. However we don't pay vat on wigs for medical reasons, so if you have to pay extra on top of the voucher then vat isn't charged. I went to a local wig shop that a friend recommended and they said even within East Anglia where I live, the nhs trusts vary with the value of voucher. I was really amazed with the choice and quality of wigs on offer, so many styles and colours it was hard to choose! I also ordered a (different) spare online, which was cheaper but looks not bad, as long as I get my hairdresser to chop the fringe!
Max, yes the jabs to boost white blood cells are GCsf and they do cause some stiffness and pain. Mine wasn't too bad, it lasted about 4 days and was mainly in my bottom, neck and shoulders. Some people suffer more, some less. I had a single slow release jab, but others are daily for 3-7 days. Looking back, I can definitely relate to the feeling of being wobbly and not quite right, a bit sluggish. For me that lasted about 5-6 days and then lifted at the same time as the fluid retention from the steroids. Was very glad to be able to see the bones in my ankles again!
Hope you all ok today.
Liddy - welcome x
Jules - I've sent you a FB request. I'm Maxine Keane x
Tessa - cheers re your supplement info x
Zena - I like the badge story lol! Hope your toothache & bum pain are easing. Well done on your brave step with hair. The GSCF injections, is that the same as the white blood cell injections I've to take for 7 days after treatment? If so, didn't realise these gave you pain too? x
Mrs Orange cat - Fab news re no chemo!! I've been on Tamoxifen trial for pre-menopausal women for 5 years, with no side effects, Just periods slowed down, until I've not had one now for over a year. So fingers crossed for you x
JoJo - Hope your nausea is easing. I was given Emend to take 1 hour before treatment and 2 more to take home for the next 2 days along with Ondansetron for 2 days for nausea (plus steroids Dexamethasone). Todays is my 3rd day so have finished these & I've got Metoclopramide now to take if needed. I have to say so far I've not had nausea, so not sure if this is due to meds I've had or just lucky so far? x
Sparkydee - I'm on EC-T, 3x EC & 3x T. Took me a while to realise that T is the other name for Docetaxol! No F for me on the FEC. Yes, having the caravan will hopefully be a good place to escape durng this. Lovely area around there. I've never been given any info off anyone re wig appointments or the therapy/make-up sessions. I know I'm trying cold cap but thought I'd still be given info. Not sure who should be telling/giving me this?? My job is accounts, so not a streunous job and I work in an office on my own. My bosses have been really flexible so far through my appointments and operation. I've said I'll probably be off first week after treatment & then go in weeks 2 &3. But we've also discussed getting my work home to do there. Then I'm not worrying about my hair even if I feel ok. I'm taking time off as sick leave.Yes, you get sick note from GP & ask for medical presciption exemption form to not have to pay for any extra presciptions x
Ann - How are you doing chemo buddy? x
Well I'm on day 3 after 1st treatment and so far I've been ok. Dreaded waking up Friday & seeing how I was going to feel!! But was fine. Took my tabs & injections etc & ate ok. I did totally mess up my first injection though......I only pulled the plunger out instead of push, so none went in & was wasted.....doh!!!! So frantic call then to Christie to organise another for 7th day, as had to use another up...what an idiot I am!! Did think today I would feel worse as finished the main nausea tabs & a lot seem to say day 3 hits them worse. So see how I get on. Probably feel more tired than normal and have a feeling inside that I can't put my finger on, like I feel a bit weak or wobbly?? Hope I'm ok to attend my daughter's assembly in the morning. I really didn't want to miss things like this. Plus, the topic is inspirational people and she has only gone & done me! That brought a tear to my eye! But now I'm also thinking is this the best thing to sit in a hall full of kids with colds etc?? Still not washed my hair either, as they recommend not to if possible after cold cap, but I feel minging and certainly wouldn't want anyone to see me. I'm really sorry to those if that sounds selfish, who've lost their hair too.
Take care ladies.
Hope you are all okay today. Sunday so no appointment and no fecking fec going on!! Hope you are all able to spend a nice day doing whatever you love best today.
I've set up the facebook page so look for me via broseley totally locally - Julie Owen
Just sent my FB request too Julie.
Zena, the butt pain will go! I had it for about 2-3 days then it eased off. I also had a feeling like I was getting a cold, a bit of a runny nose, and my lymph glands came up. The GCsf will give you some aches and pains, but if it reduces the risk of infection, I will suffer the aches.
And ladies, don't do what I did, and blow your nose too hard , as we are also prone to nosebleeds.....just what I did not need yesterday .....
Hello Liddy, I am originally from Fife and half of the extended family lived in Edinburgh so I know your part of the country well. Do you know yet what chemo regime you will be on? I think a number of us are on FEC-T, but it depends on many things.
Have a good day everyone!
Sorry - been a bit absent for a few days.
Hello to the new 'girls' too.
I've just been achy today and I'm tired but okay.
I can set up a secret facebook group but you will all need to Friend me so i can add you. Find me (Julie Owen) via Broseley Totally Locally
Jo your friend request seems to have gone - can you do it again.
I'll set a group up and we can all share photos and maybe some fun stuff too. Ann sent me a great email which i'll share with you on there.
Zena - I'm loving the badge idea. I must admit it is nice being waited on. Going down to my Mum's next weekend for more!! LOL
Liddy hi & welcome!
You'll find plenty of advice here and tons of support so don't be shy.
I'm Jo (JoJo, there's another Jo!) & I live in Christchurch in Dorset. Diagnosed in August 16 with grade 3 invasive interductal carcinoma with spread to lymph. Started on the ROSCO trial in September (4 chemo TC, surgery now 4 chemo FEC, then rads,then tamoxifen. Phew. It's a tough,long journey! But we will get through it.
Double surgery must've been tough for you, plus having children too. Well done you for coming here & getting lots of shoulders to lean on.
I think you'll find you'll get into a routine with you chemo. I strongly advise keeping a diary so you know the following months which days you'll start to recover & make plans. Do you know what regime you're on yet?
Don't hesitate to ask for help, anytime of day or night, and never feel alone.
I'm new to the board but have been lurking around the Jan and Feb boards until i got my confirmed chemo date. I start on 14th - happy valentines!
I am 44 and live in Edinburgh. I was diagnosed in November and had a lumectomy in Dec. Cells found in one lymph node and so my Christmas was jolted a bit with the news of having to get chemo - alsonleant telling my oldest child who is 9. I had to have a second op in Jan to imrpove the margins which put back my chemo to Feb.
I still feel like i am in a bubble and its real but now real. Does that make sense? Am sure the chemo will bring it crashing down to reality tho!
Anyway i wanted to say hi and pluck up the courage to stop lurking and get posting!
Jojo do you have Emend? That's meant to be the best one for nausea, but due to cost won't be prescribed in all nhs areas. I have it and have had no nausea but no idea if that's because of Emend plus all the others, or whether I wouldn't have had nausea anyway.
Re working during treatment, I work for a large FTSE100 company and they are flexible re working arrangements. Your employer has to make reasonable adjustments if you want to work, which could be reduced hours, a mix of working plus sick leave, working from home etc. The Macmillan website has quite a lot of good info on it, as I had a look last night. My original idea was to take all the time off as sick leave, but I am now thinking that I might have some of the time each cycle as sick, and work adjusted hours the rest of each cycle, but that depends on whether the side effects carry on through the entire cycle or not, and how tired I get as time goes on. My job is desk based with no travel, and I work from home already so my set up is probably easier than other jobs. Your GP can give you sick notes, or fit notes as they are now called, and they can always state that you might be fit to work with adjustments, and then list what they might be. Your employer should also give you time off for treatment but I can't remember if this has to be paid or not. Mine is, but might not be a legal right.
Max, the only supplement I am taking is ferroglobin otc liquid iron, as I have been prone to anaemia in the past, but not sure how effective it will be ( it's otc so much lower iron than prescription iron pills). My onc had no problem with me taking it so we'll see any effect when I next get bloods on 14th.
i am now day 9 after first FEC and today was the first day I felt kind of normal, albeit a bit breathless going upstairs but that's probably low red blood count.
Evening ladies, been keeping up with this, Jo, Max, well done on getting through today and Max the cold cap. Glad people get through it, gives me motivation to do the same.
thank you all so much for all the tips, on what helps, side effects to expect- btw, how many here on TCH?
i see more FEC people... I wish there was a glossary page for all the acronyms, the penny has only just dropped today that TAX might be taxotere!
Max, Pwllheli is on the west of north wales, I'm on the east, nearer Rhyl, or Chester.. about 1hr 45 from Pwll. Nice place to go, maybe a good place to rest after treatment?
ive got my bloods booked in, and wig appointment for the day b4 chemo starts. I've also booked myself on a "look good feel better" makeup session, has anyone done this? I'm hopeless at makeup and usually go bare/just mascara but some tips on how to make myself look ok ( work on reception) would be helpful!
Those of u who work, are you working in between? Are your employers classing time off for treatment as sick leave? Just curious, and do you get sick note from gp?
Sorry for all the questions, I'm trying not to worry about the SE's til they happen, thinking I might get lucky and not suffer too much.... xxx
Ah right Jo thanks. Might try it neat then when I get some.
Meant to say before, does anyone take any supplements/vitamins? And if so, which do you recommend?
Hope all ok today.
Good luck JoJo today & anyone else whose treatment today too.
Well I had my first EC, no F for me and all went fine. Apparently I've got very good veins! My appt was 12.30 & I got in the chair at 1pm, so not too much waiting around. Then my chemo nurse asked if I'd had my sickness drug, which I knew nothing about & should have had an hour before?! So only took it then, but with getting my cold cap sorted & it has to be on 30 mins before treatment, the hour was soon gone. At least I know for next time! Was a bit wary when she started putting stuff in as she was saying this & that can happen, so braced myself, but all was fine & that's when she complimented my veins haha! Treatment done by 3 but you then have to sit for 90 mins after with cold cap on & another 15mins after that for warming up, before taking cap off.Bit of a mix up at this point with one nurse's wrong info & I ended up with an extra 35 mins!! So finally left about 5.30ish, thought I might feel weird when I finally stood up, but was ok, just desperate for loo! So cold capping does add a lot of extra time on! It was bearable, once 10-15 mins gone it's numb anway, but before that I was thinking can I stand this if it gets worse. The worst bit actually is the tightness of the helmet and the neck strap, as feel like someone is squeezing your head. Me & my friend were just laughing at it though! I had some butternut squash & sweet potato soup (which I had made in morning ready) when I got home. Felt fine. Had a shower to rinse stuff off hair. Started to feel shattered from 8.30ish. Had a great sleep, only waking twice for toilet (due to extra water consumption!). Alarm goes off at 6.30 for OH & I stayed in bed till 7.15 before getting kids up, felt tired but no more than usual really when getting up early. Had my tablets in bed with 2 belvita biscuits as knew you had to eat with them but wanted them as early as poss so can have steroid at 2pm, going by what others have said. Have since had a bagel and I'm feeling normal at mo, but only day1! The thing annoying me most is not being able to wash hair, which I do daily and couldn't style it last night after rinse off, so it's looking delighful, as dries wavy and not how i like it! Anyway 1 treatment down, 5 to go!!
Zena - Hope you feeling better soon. And sorry to hear about you & Tessa suffering with your mouths. Big hugs for your hair shaving later x
Pinkloz - Welcome x
Ann - Hi chemo buddy x. Glad went well for you yesterday too. Hope you feeling ok today. With regard to the genetics, my gran had BC at 50 & had MS but no chemo & then lived till 80 & my mum had BC in both breasts at 42, so had double MS & chemo and is 69 ths year. So positive outcomes really. Do worry on results for me though, as ok I might go for double MS and hysterectomy, which I'm fine with, but I worry for my kids. My son is 15 & daughter only 11, so when testing would start I'm not sure, but sure it will be when they get older & will be monitored very carefully. Even my son would be tested as one of the BRACA genes can be linked to prostate cancer too, if my memory is correct. My daughter is already asking will she get it now after all the family history. It shouldn't be something she has to worry about & that upsets me.
With regard to manuka honey, is that the best way to take it in hot water (think that was you Ann?) or are there any other ways to take please? Jo, I think you mentioned taking it?
Hugs to all and take care,
Dear Ladies, this is my second attempt at sending you a message this evening as the earlier one disappeared into the cyber world….. was I mad!
So all went well today with my first chemo cycle and the staff at the hospital put me at ease straight way as soon as I arrived despite my emotion and tears.
FEC - 1 down 5 to go Yaay!
I feel weird/odd with a slight headache but otherwise fine. Have been given plenty of anti sickness tablets, so hopefully I will be sorted in that department. I have lots of ginger things in the cupboard from biscuits to drinks and fresh ginger for my hot water, lemon, ginger and Manuka honey drinks which I have been taking for some months now.
Jo: thanks for the tips about the ginger products. I do have most of them but will get some Haribo tangtastics… please try to find me on FB Antonina Cannatella Anderson not sure which Joanne Coward you were.
Maria: I was feeling down last week as I had a cold and I delayed my chemo but we have to brave this thing together. I also was experiencing breathing problems last week. I do think it was symptoms of the anxiety as it is not a problem this week. If you are still worried call your BCN who I am sure can help you.
Tessa, I am good with the FB group page but don’t know how to do this. But agree we stlll need to keep the posts running on this thread….. thanks for the great tips re fibre food
Max: my chemo buddy how you doing? I was just leaving the hospital when you arrived. I decided not to cold cap. I was interested to read about your genetic testing. I am worried about my daughter. My mum has had BC twice in her early 60’s and early 70’s there were no lymph node involvement on both occasion and now me…. My mum is 85, suffers with some arthritis but is still going strong…
Pinkloz: welcome to the February 2017 thread. Keep in touch and I hopefully you will have picked some tips up already. If not just ask we will do our best to help you.
Zena: so sorry you are still feeling rubbish. I hope you went shopping with the Kardashians in Dubai! And they paid!......... I have been on a light diet for the past 48 hours. My mum made me a chicken broth with veg, carrots, onions celery and parsley. Put it in a large pot and boil away for an hour. I just drank the broth until this evening and where I slowly eating some veg too…. You can add pasta to it too if you wish. Hope this helps. We had broth as kids, when we were not well so I love it and I feel it will make better. It did when I was young. Let’s hope it works again….
Julie, Jojo Swampy, SallyAnn, Sparky : hope all is well with you. Hope I have not missed anyone.
It’s 0030 and I am wide awake hope to get some sleep soon guess it’s the steroids keep me wide away…
Take care, love and hugs to all
Hi Zena, have you called your nurse to see if she can give you anything? On chemo day I was given Difflam mouthwash, which numbs the mouth. You only need it twice a day, and not what it says in the leaflet ( every 2-3 hrs), so not sure if my initial overuse has contributed to my problem. You could also try biotene gel - although I haven't tried this yet. It is very frustrating isn't it
Ah, Zena, I have exactly the same re mouth. The skin feels dry along the gum line and it's tiring eating at times. Have you tried scrambled egg and avocado? Not a combination I'd usually eat but it's easy on the mouth and quite filling. I tried giving it to my kids to save cooking yet another meal, but let's say it didn't go down too well! Or what about some warm lentil soup?
let me know if you find anything new to eat, I don't have too many ideas other than trawling the supermarket aisles!
Hi, Pink, and all
good but also rubbish to see you here darl ( know what I mean)xxx
good luck all today.
im still feeling really pants....
and my mouth has now gone funny, like lizard skin inside.. yuck!!!!
eating weetabix and drinkng grapefruit juice with water. the odd poached egg and beef stew and dumplings from the freezer section ( not my normal diet but i need to eat bland stuff) x
District nurse said a syringe driver for anti emetic maybe last resort.
Just a note: anyone having crazy strange dreams? I was in dubai yesterday with the Kardashians ( I do not like them) so more of a nightmare.. very odd and like a proper waking dream, lots like that too. all really real..
big hugs to all you amazing fighters xxxxx
Hello lovely ladies!
just thought I'd say hi as I have my first chemo session on 15th Feb .. eek!
any tips welcome ☺
love to you all xx