Gill, I am so proud of you. You didn’t go kicking and screaming demanding treatment, when you nust have felt like doing just that in the circumstances. No, you asked the wonderful ladies on this site for advice, conducted your research (which is a minefield), took the time to understand (always difficult) put together a strong case based on fact and presented it to your Oncologist. Throughout this time, the clock was ticking in terms of you not having any treatment at all (7 weeks) and no future plan.
I hope you are proud of yourself my love, you should be. To be told that you could not have Tamoxifen (because of health issues) and then no chemo would have sunk a lot of people, but you stuck to your guns and fought for what you believed was right for you.
Lisa - I’m on the TACT2 clinical trial which sounds like the one your on as well. I had the epi every two weeks with the GCSF. The time flew by. Anti-sickness meds prevented any sickness and, at worst, I just felt off my food. The time flew by and I had more good days than bad days. I felt v tired and had to sleep during the day for the first four days or so then I was bouncing back. I’m now on cycle 3 (of 4) of capecitabine/xeloda tablets which are going well. I thought about the cold cap too but decided against it. Waiting for my hair to come out was distressing but I am still me and those who love me don’t care whether I have hair or not. When I told my 4 yr old that my hair would be falling out, he looked at me with so much compassion and said “poor mummy”! I had it cut short when it started to come out and then a few days later, my husband shaved it off whilst congratulating himself on his hairdressing skills saying “actually, it doesn’t look that bad”!! I beg to differ! Anyway, the second half of my chemo doesn’t affect the hair and it is slowly growing back now.
Gill - you’ll feel so much better once you’ve started. I’ve had some unpleasant dreams as well but it’s always when I’m waiting for things to happen or be decided. On the chemo board, I’ve found the “top tips during chemo” thread that I was talking about and have bumped it to the top. THere’s some great advice in there on ways to ease things.
I did get some great “headcovers” from a US website but I’m not allowed to post the website address here. They have a huge range of indoor and outdoor hats etc that are a bit younger in style than some websites. They cater just for people with medical hair loss so the fit is secure as well. If you google then you’ll find it!
I think you may be referring to “Buffs”… google it and it’ll come up with the website details. I had a couple that I wore when hairless, just around the house to keep my head warm! It makes you realise just how much heat you lose through your head… brrrrr… They come in a variety of colours and patterns, and you can also get them in some outdoors shops, e.g. Blacks, or maybe Millets… Anyway, I went wigless last week, as I finish radiotherapy next week… YAHOO!! I was also on the TACT2 trial and agree with the others that it was do-able!!
Good luck with your journey… it’s a long haul, but I’m now 8 months after surgery and looking forward to getting my life back on track.
Thanks ! I will try the google for headcovers. I had my hair cut short last night to lessen the shock !
I’m glad you have been well on TACT2 it makes me feel better. I did not get the best one like you where you have the tablets aswell but having the EPI quicker helps then I will have the CMF as normal. How long was it before your hair came out ?
Unfortunatley my 9 month old has just started with the sickness bug this morning. If I get it too -highly likely- I wont be able to start chemo on Monday. Fingers crossed I will escape it !!.
Cutting your hair short definitely helps. Trust me, it is easier once it has actually come out. I think the TACT2 trial is good as you probably get monitored more and it was a big plus to get the epi over and done with quite quickly. I’ve heard that the CMF is the “gold standard”, i.e. a good one to be having. I think one of the CMF drugs is what my tablets convert into (the “F” one) so it’s actually a very similar treatment just done in a different way.
My hair seemed a bit slow to come out. At one point, I was worried that I’d shaved it off for no reason! I think I was nearly into the third cycle before it came out fully but I think that was a bit later than most women. My eyebrows and eyelashes didn’t fall out much until after I’d finished the epi and then within about 10 days they miraculously re-appeared as lovely thick new hairs (eyebrows looked a bit stubbly for a couple of days) and they honestly look better than before. Benefit do a lovely cake eyeliner that you wet then apply with an angled brush - it’s much easier to put on than standard eyeliner, especially if you can’t see what you’re doing without glasses!! I used a standard eye pencil as well as an eyebrow pencil for my eyebrows and they really didn’t look that bad at all.
Hope you don’t get the poorly bug. Some people have said to me that it must be extra hard to do chemo when you’ve got young kids to look after. It is hard from a practical point of view but it’s also much easier when you’ve got a ready supply of cuddles and distractions to pass the time. I always feel better when my two bounce in from school/playgroup.
I hope it goes ahead as planned on Monday. Good luck and remember every session done is one less to do.
Lisa - So sorry to hear your little one is poorly, it is probably that bug thats going around that theyve talked about on the television. Keep your fingers crossed you dont get it and all goes well for Monday. xxx
Nicola - I bet you are well looked and monitored, well done for doing a trial to help others in the future you should be commended. xxx
Dyzee - thanks a million again for your support you are my rock. xxx
I seem to have escaped the sickness bug so far ! Even hubby came back from work early with a bad stomach. Ive been running round after them all afternoon !!
I did get time to order a couple of hats from the US website you recommended Nicola. Cannot wait to see what they look like - any excuse for retail therapy !
Which ones did you order Lisa? I’ve mostly worn the three seam turban in either cream or brown as it goes with most things and is an indoor sort of hat. My brother is in the US and ordered one lot for me and then insisted on a second order and although a lot of them haven’t been worn much, it was great to have a selection to choose from then find my favourites. I’ve got a terry towelling sleep hat as well. I still wear it as although have about 3mm of hair now, my head gets cold!
If you want an extra wig then there’s a couple of UK-based wig shops on ebay. I got a lovely blonde bob wig from there for about £25 delivered. I’m brunette naturally and have never dyed my hair in all of my 36 years! I’ve only worn my wigs a couple of times but when I turned up at a Xmas lunch at a hotel, my Dad didn’t recognise me!!!
Hi Lisa, So glad you are escaping the sickness bug so all will be well for Monday, will be thinking of you hon. I am going to go on web for those hats you have been on about. x
Nicola - I didnt know you could order wigs without trying them on! are there different sizes, do you have to measure your head? great price aswell, I am going to have a look, what is the quality like?
Well I am afraid I got the bug ! I was sick all last night and have been in bed all day feeling fluy. I will not be able to start my chemo tomorrow as planned, I will ring them in the morning and see what they suggest. Hopefully they will still let me start this week. I feel that everything is working against me at the moment.
Hi everyone had first session of FEC on Fri. Not the terrifying experience i was expecting. Felt a little queasy early teatime but this went off after having something to eat and sleepy later on. Saturday up early and went shopping in the afternoon to town with my two daughters and out with hubby for a drink at night time (thought i would make the most of it while i was still able) came home, watched TV and did not go to bed until 2.00 am. Sun got up at about 9.00am and was OK until teatime when i started to fade a bit. Had an hour but am now feeling quite awake. Only took sickness tablets both mornings as a precaution and haven’t needed them after that. Will keep you updated but so far so good.
Take care and love to you all Sandra x x
Lisa - poor you, I hope you manage to shake it off soon. I’m sure it won’t delay your chemo by long. Take care of yourself.
Gill - there’s lots of foreign wig suppliers on ebay but I used the UK sellers. The quality of the wig I bought was the same as the £80 wigs from the proper shop. If you do an advanced search for “wig” and tick the “UK only” box then it brings up a few ebayers (with shops). It’s easy to see which are proper suppliers (they only sell wigs and have ebay shops). I think the Kanekelon (sp?) fibre wigs are the better quality ones. Don’t forget you can always get the wig trimmed at your hairdressers. You need to think carefully about style and colour that will suit you. My ebay wig was my favourite over the two more expensive ones! Not that I’ve worn any of my wigs very much although it’s been nice to have them there as an option.
Good news I have managed to get my app moved to Wednesday 23 Jan - so I will be with you on day 1 Gill !! I am feeling a lot better having rested the last 2 days.
Sandra you have made me feel a lot better about starting treatment - I am glad it is going well for you.
Nicola thanks for the advice on wigs I still need to sort mine out. I shall have a nosy on ebay shortly.
Lisa - Great news we will have to hold cyber hands through it all, I am so pleased you are feeling much better. What time are you to go? I am there at 2 pm
Sandra - So pleased that you sailed through it, you brave lady, I am bricking it for tomorrow I feel a right wimp reading all the ladies on this site that cope so well with everything.
Hi again ladies just to tell you that things are still going well. Went to sleep on sofa at 9.30 last night and woke up at 12.00am. I think that was enough for me as i did not go to bed till 3.00 and could not get to sleep (seems like its having the opposite effect on me) Been shopping again today and still haven’t had a sleep. Here’s hoping that things carry on like this as I’m hoping to go shopping for post mastectomy bras tomorrow got to look my best (l.o.l) for this wedding. Hopefully things will go as well for all you ladies. Good luck for tomorrow Lisa and Gill i will be thinking of you both.
Love loads Sandra x x
Hi I am in at 2.45pm today my best friend is taking me to keep me company, I am feeling really emotional and tearful this morning - what are we letting ourselves in for !!
Anyway must pull myself together and do the school run.
I am new to this and just had my op on 10th January (Ductal grade 3, 26mm 2 lymph nodes) had reconstuction. I am due to see the oncologyist on Friday to discuss the Tact 2 trial that they have recommended. I am not sure what I am supposed ask any tips?