I am starting chemotherapy next week, 16 September. I have looked at the posts for people who started in July and August and there are so many thought I would start a new one to make it easier to follow. Would be grateful for anyone joining to share experience ?
I am having EC , 6 sessions in total every 3 weeks. I went for my wig yesterday and this bought it home even more. Bought a couple of turbans and scarves too but hard to imagine what it will be like and what I will want to wear.
I have short hair but still hate thought of it falling out so have made appointmnet at my hairdressers to shave it all off before it starts to comes out, the wig lady thought this was brave but for me it just seems practical instaed of mess and upset of it falling out everywhere.
I have seen the top tips for chemo which are useful but until I actually start and know how it will affect me it s very difficult as those who have gone through it will know.
Hi
I am starting on sept 13th FEC-T. 8 sessions, every 3 weeks. Haven’t seen wig person yet, will wear hats and turbans I reckon.Getting around to having my hair cut. Will keep you posted as to how I get on x
Good luck with the chemo, the likelihood is that it won’t be as bad as you imagine, I know the build up was the worst bit for me.
I have had no 2 FEC today, feel just a bit fuzzy at the moment, but just wanted to share my experience with the hair.
I didn’t do cold cap, so they told me it would definitely fall out, which it started to do on about day 17. It is however still here, albeit falling like snowflakes every time i move my head, but not all over. I have a small bald patch on top and a couple of others which are hidden by hair, behind ears and on temples. My point is, with a hat or a cap you can’t tell and for the moment I am happy with this, and will keep it going as long as I can. I will have it shaved off, if and when I have just a few remaining patches, but my advice is don’t rush into it. I thought I was prepared to lose it, but the reality has been harder than I thought. I don’t have Demi moore’s lovely features so it is quite harsh, especially the no fringe look when I am trying the scarves on. If you do have a small head and finer features then maybe it will suit you? Perhaps I am completely wrong!
Is it because you want to do something, make a decision to feel more in control? I spent this time sorting wigs etc, filling the freezer, Just so I could feel I was making some decisions myself.
There’s a good thread on what to get in before you start, I’ll bump it up in case you hvnt seen it.
Best of luck in the meantime, keep busy, don’t read the scary threads,
X
Rusty
Hi I am starting chemo on the 15th September, my wig fitting isn’t till the 14th. Things got going quicker than I expected. Have you been round your chemo unit yet? If you like Carol I’ll keep in touch with you and we can take this journey together. Maybe we can also help each other. With me having my first one before you I can let you know how it goes etc. A couple of the girls on put my mind at ease and I know everything will be fine, everyone on here has done it and coped so we’re just like new recruits if you like. Not that we volunteered for this, hay ho. Just keep thinking this time next week we will probably wonder way we got ourselves in such a state about it all.
Debs
I had my first FEC yesterday. Feeling surprisingly fine and am waiting for the SE to start!
I have arranged to see the onc and get the bloods done on Tuesday so that my perscription is ready for Weds. The hospital rang at 10.00 and I was in and out by 12.30.The worst part was the canula as they couldn’t get a vein.After wrapping my arm in a heated blanket- 2 failed attempts so had to stick my arm in a basin of hot water and finally got one in on the fourth attempt!
Cold cap on at 11.05, chemo started at 11.20, all in by 12.05, coldcap off at 12.25, last of saline fluid in by 12.30! Then went for lunch, bit of retail theraphy, picked boys up from school, ate dinner, sorted uniforms/packed lunches/homework etc. Still feeling fine!!!
The downside so far is not sleeping! Managed 10pm to 2am and have been up and wide awake ever since! I took the steroids at 5pm as advised but sleep evading me.
I believe that around lunchtime I will feel crap so have farmed out boys just in case.
Will keep you posted.
Good luck to all of you
Andi
PS I am on a “low” dose of FEC 75mg per m2 which combined with the cold cap could mean I keep about 70% of hair. However wig on order and I have an ever increasing collection of scarves,hats buffs and a fringe to attach to them.I also had my shoulder length bob cut short in July and trimmed again last week.
Hi
Well done for getting number one over and done with.
Just had my 2nd fec and found with the first one that the tiredness hit on days 4 to 7 as the steriods keep the energy levels up to begin with. Don’t panic if you look very pale those days, just make the most of any sympathy you get!
Good luck with the hair loss. I decided not to use the cold cap and so far have lost about 70% of my hair, mainly on top as I had psorasis on my scalp and as the chemo cured this it’s left me with a bald patch. Still can’t win them all, hats look ok as I still have hair at the sides and for the first time in years I have no psorasis.
Good luck with the side effects
Ali.
x
Must say I feel a bit of a fraud at the mo. I had arranged for my childminder to come in at 7.30am Thurs and Fri of chemo weeks to take over when OH went to work and to take the boys to school week 2. Both boys off to tea with friends Thurs an Fri. I’ve just sat and chatted to her for an hour, catching up!
I keep waiting for the dreaded sickness to start.I feel a little wooly but no worse than on a tired day.I will probably get the awful mouth ulcers,bad skin,nail lift…
Good news about the psorasis.With a bit of luck it will stay away.
Sorry you have had to join this forum. I am having my 5th chemo next week but I just wanted to say something about the steroids, I take mine at 8 am and 2pm to help with the sleep situation and I know some ladies on here taken them at 7am and 1pm.
I know you are all just starting your chemo or have started it and I just wanted to say good luck, for me it hasn’t been as bad as expected and it does go quick.
I am also a candidate for joining you as I had my first chemo session on Tuesday, and so far I haven’t had any side effects that I could have expected for which I am thankful!
Things I have done which are tips I have picked up on previous postings was to have a good fluid intake prior to chemo and in the days following - i know it sounds a bit anal but I kept a record of what I drank, as with my woolly head I would actually forget, over my waking hours I managed 4 litres ( mainly water & green / herbal teas)
Wig sorted and I too will have it shaved when I start to lose my hair.
I bought sea bands ( acupressure wrist bands ) as a colleague recommended that she had found them helpful.
Regarding steroids and sleep I take my last dose at 2pm and can’t say over the last two nights my sleep patterns have been affected that much.
I was really anxious prior to staring this next stage, but so far and I know naively it has only been 48 hours post chemo it has been OK. The nurse warned me about the dip in energy levels over the next few days and I shall just go with the flow and have a pyjama day(s) and watch all the mind numbing films stored in sky+!!
Love to everyone at this stage and lets keep at the centre of our minds that this is doable!!
Yes, sleep does go back to normal pretty quick after you stop taking them or reduce them as I reduce mine over the last couple of days. I was also given some sleeping tablets to take, called lorazepam which helped a lot on my second cycle. My taste buds normally go for about a week and I generaly feel rough from day 2 to 6.
I’m due to start FEC-T 6 session on the 23rd, a week after some of you guys and a little nervous but sort just want to get on with it now!
Andi, have you thought of having a PICC line to save all the upset of having a canula each time? I ask as I’m a total needle phobe so opted to have one, being fitted on the 20th (dreading that more than the chemo - but at least just be the once!)
I went to the headstrong support group yesterday to get some advice on scarf/hat options and highly recommend it, really fantastic. I’m actually looking forward to wearing my new hats! Check out the video on this site under headstrong, it’s free and worth a visit if you’re concerned about what to do with a cold head!
Good luck - love reading the tales of how everyones getting along
Hi Everyone
I Had my first FEC-T today,will have 6 cycles 3 weekly. Feel ok just a bit out of sorts is the best way i can describe how i feel. Ive got my wig & hats at the ready, im undecided on whether to shave the lot off once it starts to fall out or hang onto whats left,decisions decisions… Came home armed with anti sickness drugs & mouthwash as had chemo 24 years ago & i suffered terrible with mouth ulcers but chemo has come along way since then!
Once this is over ive got a double mastectomy with recon to look forward to,which is purely a precautionary measure due to the risk factor,want to be around for a long while yet,got my 2 boys to look after!
Good luck eveyone & look forward to seeing how everyone is getting on.
I had my first FEC today, and feel ok at the minute! The whole procedure was not bad at all, I too am armed with a small pharmacy and have written down in order what drugs to take when. I have finished knitting my woolly hat. I reckon I shall need that when the weather turns a bit chilly. Good luck to all who are about to start.
x sarah
Hi
Well done comercrab, it’s good to get 1 out of the way. Had 2nd chemo last week and se’s were same but harder than the first but only over the same 3 days. Keep thinking if 3 bad days out of 21 x6 kills all those cancer cells then it’s worth it.
Decided to have a picc line put in ready for next bloods/chemo as the back of my hand has been stiff and sore since last weeks chemo.
Typical but my best veins are on the op side.
Looking forward to the weekend as I’m off to my brothers on Friday. My daughter is going to a uni open day near them on the saturday so my sister in law standing in for me, while my brother, who has ms, and I have our afternoon naps. It helps to have things to look forward to in the short term as this whole process seems huge at the beginning.
Positive thoughts and vibes to those having chemo this week
Ali.
x
I started FEC today (13th Sept)9 hours ago and still feel fine. Felt “a bit odd” for a while but that has now passed.I thought I would be worn out but surprisingly wide awake (annoyingly)I will be having 6 cycles every 3 weeks. I know it is still early and I am not holding my breath but the apprehension was far worse than reality. Decided against the cold cap and will be seeing the wig lady as soon as arranged. Not decided on how long to persevere with the loss before shaving yet, I think it will a last ditched attempt though. I’m sure I will welcome all your advice as, and when, things develop along this journey.
We also have a free confidential helpline which you are welcome to call for further support and information on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2.
Hi everyone! Feel a bit woozy headed, and sleep was not fantastic last night. Just had my white cell boosty injection form the district nurse, 6 more of them to go!
Alicats, good call. 3 days out of 3 weeks isn’t so bad, still have fingers crossed.
x sarah