Gaby, a notepad is probably enough to jot down any side effects. On hindsight, maybe the spreadsheet was a bit overkill! xxx
Thanks for the water tips, makes sense, I need to start drinking more!!
Is anyone else on Paclitaxel? I am having it weekly and have my fifth chemo session tomorrow. So far my hair is falling out but I am not bald or even patchy yet. Today was the first day I started to wear a hat as it's got very thin but still there. I ahve been told it will definately fall out. Just wondering when to expect it all to fall out.
One down five to go!!
I had nurse led ec chemo, she was really lovely. A couple of strange sensations i must say lol.
Arm just felt abit sore and heavy.Was there about an hour, Im at home now snuggled up as feeling abit cold. Abit sickly but manageable. Hope i have an ok night, will let you know x
Hugs & love bee 🐝
I just read your blog, which I found really helpful - and it made me cry, particularly the bit about the daffodils. So much of what you say resonates with what I am feeling at the moment. I am trying to stay strong, not least for my family, but sometimes it's the small things that catch me unawares and the tears just flow. Had a look through your tips for chemo and will defintiively try some of them. I was very impressed you created a spreadsheet for your symptoms. Not sure I'll manage to do that, but I'm sure it's worth making a note of these things. I am already noticing that my memory is not very reliable, so who knows what will happen once I've started chemo next week.
I had my Picc line put in today. Wasn't half as bad as I had feared. I didn't feel a thing and although my arm feels slightly odd now, I think I will get used to this very quickly. At least I won't have needles being poked in to my arm every week. I don't like needles, but am fast learning to cope with all sorts of unpleasant and mildly embarrassing procedures.
I have also been told to drink lots of water and am trying to build up my intake - got myself a new water bottle that has a "well done!" marker for when I've finished. Pretty daft really, but oddly enough I am getting slightly competitive with myself about reaching that marker.
I've had a look at the scarves and hats on hipheadwear - has anyone tried their things? They're not cheap, but look well made and easy to use.
Ladies, the baldness anxiety is understandable, it's a no-choice style imposed upon you. My kids didn't want to see me bald, they wanted me to still look like Mum. I wore a wig and if it was a windy day I'd wear a newsboy cap over my wig as it felt better hanging on to the peak of a cap than my hair! You'll find your comfort zone with hats, wigs, scarves but it will take a bit of time in front of the mirror experimenting with "looks". My hair grew back exactly the same colour but is now a bit curly whereas before chemo it was very straight!
Kip is right about the water: it plumps up the veins which makes canulation easier and helps your body to cope with the chemo toxic load and also, with the FEC, it flushes your bladder out as you can wind up with severe bladder irritation. I always went for a wee straight after my FEC, before I left the hospital, as that first wee was really red and I didn't want that concentration sitting in my bladder too long. For anyone that hasn't seen my blog yet it's here and has a list of tips for chemo which worked well for me. http://lifeafterlola.com xxx
I found out from the girls on this forum so just incase you haven't been advised by your team..... you are entitled to free prescriptions for at least 5 years. I got a form from my gp.
Hi sunbean, with regard to drinking lots of water.
As someone has already said it makes it easier for the nurses to find a vein & less painful if your veins are nice and plump. I had a portacath so that didn’t matter for me.
I suffered awful nausea (was never actually sick) on FEC even though I was on the wonder drug Emend as well as granesetron and metoclopromide*, one of the ladies in my group had the same chemo but sailed through with barely any nausea, she swore it was due to all the water she drank. On the 2nd cycle I made sure I drank at least 2lts the day before the day of and the day after and pleased to say it made a huge difference, many of the other girls did the same with the same result.
*was switched for cyclizine as it turned out I was allergic to metoclopromide.
Hi Sunbeam, I think the water drinking helps (a) to flush the toxins through and (b) to help veins keep hydrated and easy to insert cannuala etc. If you are having FEC one of the drugs makes your wee red so it also helps to get that through quickly..so don't panic if you see red!!
Morning, I have just deleted by accident a reply so here is a shorter version of what I wrote. Thank you,it's so good to know others are feeling like me over their hair and the fear of hair loss is a normal reaction. I think I have without realising it been blocking my emotions about the shock of cancer with my fears of being bold. However I now see hair loss is a big issue in itself and it would be good for me to try to embrace my future boldness. This is going to be a big challenge for me but I am going to start today by going out to buy hats after all you can't have too many hats!!
Can anyone tell my the reason to drink water before and after chemo. Maybe I have missed something.
lots of love and hugs
Hi ladies, stressing anout the hair loss is so common. I felt like it turned me into a cancer patient and i was worried about people looking etc but it didnt really happen .my hats and wignhave never fallen off and i think if they did i i would feel the people have the problem not me. Once the hair had been shaved i slowly got used to, i still miss it but by cycle 4 (i have had 3 fec and 2 T now) it is growing back, fuzzy little chick hair but it's mine! Youll get there just allow yourself to feel the emotions but actually nearly everyone ive chatted with in these forums has embraced the baldness... Saves hours of styling!
Big hugs Kip
Im due to start on Thursday and no your not alone!! Im totally stressed about my hair, and yeah so paranoid that people are gonna look at me.
I think it’s perfectly normal feel like that 😀
Love & hugs Bee 🐝 xx
Hi everyone, first time writting on this thread and I already feel supported by reading your messages.
I have started chemo and my hair is beginning to fall out and I must admit I am stressing out over it. Being
bold seems to be the main thing I am concerned about. I have tried telling myself to pull myself together &
stop being silly. There are more things to worry about like cancer!! Maybe I am using the hair loss as a
distraction from the real issue or perhaps I am just being vain. I keep thinking what if my wig or headwear
falls off my head when I am out but really so what if it does. I imagine people will be looking at me when I
have not got my hair but again so what if they do. I am fine with the cancer, treatment etc. It's just this hair
loss/boldness that is getting to me. Is it just me or is anyone else over reacting like me?
I agree, I've not googled anything about my cancer or treatment and am putting my complete trust in my medical team, who have been brilliant. I am trying to stay strong, not just for myself but also for my lovely husband and children. Just occasionally I crack, but I guess that's not surprising.
Just had a lovely offer from a friend to go dog-walking with her (her dog, not mine) when I feel up to it - somehow these small things seem to make a big difference.
More blood tests tomorrow, then Picc line on Thursday and a lengthy kidney test on Friday - what fun!
Its so lovely to hear from you ladies who have been there, really helps Thank you 😀
I have a 6yr daughter who has been great she knows whats been happening and whats about to happen, i will letting the school know on Wednesday (when she goes back) other mums have already offered to help with school run if needed. I will be off sick from work all the way through due to working around alot people (supermarket) get full pay so thats a bonus lol.
I will more then likely cut hair very short just after first chemo, dont wanna see big clumps!
Hi alittlepixie, Lisa, Mama Tony and Millie (good luck for tomorrow 🤞) xx
Hugs & love bee 🐝 x
I'm starting chemo for stage 2 triple negative on the 12th Sept. Waiting for this date is nerve-wracking, but I am being kept busy by my medical team with all sorts of tests etc. Am having a Picc line put in on Thursday. I have to go in for weekly chemo until December (is anyone else on a weekly regime?!) and can't face having needles poked in to me every week. I am also going to try a cold cap. I've got lovely long hair, but have a hairdresser appointment for next week to cut it short in an attempt to prepare myself for hairloss; not looking forward to that at all! I am hoping the cold cap will help, but there is no guarantee of course. Have decided not to go for a wig, can't face that. I'd rather order myself lots of fun hats and scarves - my 11 and 17 year olds will help me choose!
Like others here I have been completely open with my kids, who have been absolutely fantastic. Am meeting with my son's school today to discuss what they can do to help him over the next year, should he need it. My older daughter wants to tell school herself, which is very mature of her. Although this illness is deftinively the worst thing that has ever, ever happened to me, it is also revealing so much kindness and strength in so many of my friends and family, it's quite overwhelming.
When I was first diagnosed in early August this forum and the replies I got back were so incredibly helpful and comforting. It really does help to off-load and to know that we are not alone in this.
We will get through this together!
Hello all September ladies! Im .from June cbemc thread too! Its very scary starting chemo, fear of the unknown etc but as the others have said these forums really do help, we ask all sorts of things and sometimes just rant... Its good to get it all out there. i i ha had 3 x fec and 1 x T, having my next T today and final one on 24th September, the cycles do come round quickly really altough some days it xoesnt feel like it. Overall they have been .doable with some days when you feel bleuh but yiu geg through just listen to your body and always rinb uour nurse or hotline if you have problems, they will always hve something up their sleeves to try.. don't suffer in silence.
Hair... Mine was long but i cut it to pixie cut before chemo then about by day 15 of first cycle it was falling out quickly so had it had shaved to grade 1... Was very emotional i wont lie but son got used to it and its now startjst to grow back on firsf cycle of T. I have a wig and several hats but usually go bald at home... Saves a fortune on shampoo.
Those of uou with children.. j have a 16 and 13 year old and tried to be very open with them and they seem to be ok, son took GCSEs during this and pased them all!! Get school on board tell them whats happening, our schools have been great with them offering the chance to meet and chat if they re worried. Their biggest worry was seeing me ill but iI'v only had a few days when ive not felt great but otherwise continued working (from home so very lucky). If you can and feel able try to get out for a stroll even a litle one helps.
Oh and book yourselves onto Looking good Feeling better course if you can, nice pampering session with loads of freebie make-up!
Take care.. big hugs
Hi Ladies, just popping on to wish you well for your chemo. I finished 8 rounds of FEC-T almost a year ago and life is pretty normal again, back at work full-time. I was stage 3 and had a mastectomy and full lymph node removal. Life moves on and I hope this gives you a light at the end of the chemo tunnel. Here is my blog which has lots of tips for managing side effects: http://lifeafterlola.com If you find anything useful in there you can share it with other ladies joining this thread later in September. Lots of love. xxxx
I just re-read some of the posts on here and see that a lot of people are worried about hair and how to deal with it.
There is no right or wrong way to do any of this; everyone is individual, but with FEC I have noticed that for many people, hair begins to get a bit weak after around days 10 - 15 and it is then that people tend to feel the need to make changes. I personally decided to buy in and play with a few scarves as soon as I found out I would need chemo, as I didn't personally like the wig option. Many do though.... and love them.
When on about day 13 I was bringing more than my hairbrush away from my hair when I brushed it, I decided to have my thick curly hair cut short. A few days later though, my daughter took it back to a grade 3 with clippers. By this point, the short cut was 'lumpy' under a scarf, and falling out unevenly. I haven't actually shaved it, but I'm wearing scarves and sleep hats all the time now, and there is still a little tiny 2 or 3 mm sparse bit of hair coverage, which I expect will be completely gone in a week or so. I still 'wash' what is left, but it dries in a few seconds😬!
Best wishes everyone 😘
Hi September Ladies,
I am Georgie Gee and I mostly appear on the August chemo starters thread.
Please feel free to ask as many questions as you need to.
Sometimes it helps to have 'real people' to talk to!
Just in case it helps anyone, I am currently having FEC-T chemo, with 2 cycles of FEC under my belt now and 1 more before I start the T part, also known as Docetaxol, and will also then have Herceptin once every 3 weeks for a year. Also 3 years of bone protection IV once every 6 months. As I do not have any hormones involved, I do not need the 5 or 10 years of tamoxifen or other hormone drugs.
I had surgery before the chemo, for removal of a 29mm grade 3 HER2+ invasive ductal tumour and complete node clearance from affected side. Also had 2 lymph nodes with cancer plus one with micro metastasis.
You will be starting to know the new terminology we all now have to understand once diagnosed with breast cancer, and one of the things I began to realise straight away when I joined this forum is that we speak from experience and help one another along the way as and when we need it.
Most of of the NHS hospitals seem to be similar with treatment, and we compare notes and share experience with one another on the forum.
All the best to everyone starting treatment this week.
I didn’t cold cap & decided enough was enough day 19 of first chemo (day 1 is chemo day). It gets sore a bit like pony tail head. I clippered it to a grade 3 & although it was v emotional it felt so much better. I couldn’t bring myself to actually shave it off and allowed to do its own thing, it was all gone a few weeks later. I didn’t like the scarves on me as I felt that I looked like a cancer patient.
The good thing about this time of year is that you can mess around with hats, I tended to wear beanies when at home and wiggy when I went out.
It soon grew back once treatment finished xx
Im probably not alone on this but im so nervous about possible side effects??? Ive been reading through all the past posts to prepare myself as never been through something like this before!! The main thing im stressed about is my hair! Its shoulder length ,im not even tempted by cold capping it just isnt for me. So im gonna brave the shave (is that wise???) cant bring myself to do it tho!!
Love & hugs x
Hello all, my first time posting since diagnosis in June and surgery in July. Am due to start 3 FEC 3 T on Tuesday 4th. Am feeling very apprehensive and a bit overwhelmed by it all like many who have trodden this path before I guess. I want to wish you all, all the very best for treatment. With each other's support we can do this, we are strong 😄 lots of love xx
Good evening ladies.
I was in your shoes September 2013
This monthly chemo forum was an absolute godsend & I am still in contact with a number of ladies that I met back then.
I was triple neg, had a mastectomy, axillary clearance, 6 rounds of Fec-t and later reconstruction.
As this is my 5 yr anniversary I felt drawn to come back here and will continue to pop in now & again to see how you’re getting on.
If you have any questions, pls ask I’ll do my best to answer x
Ooh top tip drink lots of water especially the day before, the day of and the day after chemo.
Best of Luck xx