Hi Lady H my 4th to 6th cycles will be T and herceptin but I can’t remember if pertumazab will be in there too. I have already had lumpectomy and sentinel node biopsy back in December. I will be having radiotherapy after the chemo and tamoxifen after that.
I had the cold cap on first cycle and found it was okay. Who knew that swimming in the Moray Firth on summer holidays would get me in training for chemo! I am going to try it again although since I have had my hair cut really short since the last time I might find it too cold next time!
Going to get my wig tomorrow. Still not sure if I will wear it but if my hair does start really coming out at least I will have the option.
Hi Lady H. Glad you’re home now. 6 days in hospital can’t have been much fun 
Which hospital are you based at? I’m having treatment at Nevill Hall in Abergavenny and Velindre in Cardiff. I went to a wig salon in Cardiff (Salon Wills), and they were great. Good range of wigs and sensitive ladies. Tbh, last time I went through this (8 yrs ago) I went to the guy in Usk (Peruke) but found he wasn’t listening to what I wanted. But they’ve moved premises and got a second shop since then so might be different people.
Hi ladies
well my hair is starting to fall out and flora you are very brave shaving your hair I still can’t do it . My hair is long and I was hoping it was just Ribena that they gave me not epirubicin!
i find it hard writing a reply in thread as there isn’t the previous discussion there and so I forget everyone’ s name is there a tip or am I doing this wrong?
Was just wondering if any of you ladies are triple negative? I know there is a thread for it was just curious.
Lets hope this snow doesn’t delay treatment for anyone .
Thankyou I think it was Jude for the gelclair I will have a read.
hugs to everyone keep warm xx
So great to wake up in my own bed this morning ?
Chrissy if only it was Ribena!! Did you use the cold cap? My cancer is oestrogen + and HER2 +
Flora I’m having treatment at the Royal Gwent the staff were amazing during my stay. Been to Velindre for my MUGA scan (next one 9th April). Thanks for wig advice I wasnt sure whether to use Cardiff or Usk but I’ll go Cardiff now as my breast care nurse also said they were great. I hope you manage to get your chemo underway again this week.
Miss green hope your headache and thrush clear. Look after yourself and try not to worry about getting to work. You’re number 1 priority is you.
Wee bird I’m not using cold cap 2nd time. Felt so spaced out after 1st time If I can alleviate one side effect that’s a positive. My hair will come out by my 4th cycle anyway so have decided to embrace it, as much as that does make me cry ?
Hope all others with side effects are feeling stronger. Take it easy. Xx
Hi first time in making contact.
Really useful reading everyones different experiences. I am day 14 on first cycle of chemo and am only now starting to feel better. Had to inject filgastrim for 7 days which I had horrific side effects from. It s all just pretty pants really isnt it?
My question is when did people first notice their hair falling out? I am desperate to save mine. Used the cold cap for the first cycle which was pretty hellish but really want to save my hair. Just wondering when i ll know if its worked or not? Have got a wig but really dont want to have to wear.
Wishing everyone all the very best for their treatment and recovery
Stay well and warm
Kitty
Hi Kitty - I used cold cap for my first 2 rounds of FEC - on day 6 of round 2 now. My hair is starting to shed - I’m going to see if it just thins or falls in patches before I decide whether to use again. Hoping it will just thin and then regrow. I have a wig just in case or for a change.
Im really struggling with nausea this round - finding it difficult to do more than lie down on sofa as I get dizzy and feel sick - still taking Domperidone but not seeming to help.Ginger biscuits and ginger tea are quite soothing.
Here’s looking forward to better days - look after yourselves everyone x
Hi Kitty, similar to you I’m.day 13 1st cycle with cold cap. I was told it could start thinning day 20 so yet to know if it worked. Am not using next time so i assume will.come out quite quickly.
I’ve booked an appt for wig next Wed- Flora am going to salon wills.
Bibi i hope your nausea passed soon, must be dreadful.
Congratulations Jude on raising your money for shaving your head, sounds like you had a good evening with friends. Maybe I’ll do so.etging similar when mine goes, safety in numbers!! Xx
Kitty, I’ve not been using the cold cap and hair started to loosen up properly on Day 17, and I shaved it off on Day 23 as it went very flat and was pulling at my scalp and hurt a bit.
Good luck at Salon Wills, Lady H. The blonde lady there was very helpful. I love the location of the shop too! A lovely arcade. My mum and I made a day of it, when we went. I haven’t worn the wig yet though. I’ll Probably only wear it at work.
I’m continuing my exploration of Welsh hospitals as will be re-attempting chemo #2 today at Merthyr Tydfil. Because of allergic reaction last Friday, they want me in a larger hospital just in case, but couldn’t fit me in at Velindre. I had the choice of today or Monday, but want to get this done. Am still on piriton and they’ll give me more by IV. If it doesn’t work, they’ve mentioned moving to abraxane, which is the same drug in a different carrier fluid. Apparently it tends to be the formulation, not the taxane that your body reacts to. And also my reaction - the second treatment of the second time of having it - is typical.
Have accepted I’m having 2 weeks off work at least right now. Part of me is relieved, partly annoyed! But I can’t focus on it anyway.
Flora can I say you deserve a medal to work throughout this journey and anyone else who is .
I admire you all for doing that.
I went to a pamper day yesterday at my local hospital don’t know if anyone else has but I would highly recommend it.
Also not sure if people are aware but Macmillan is funding hospitals that have action heart gyms. This means you can be referrred to the gym there for free for a 12 week programme.
i know that some of us it’s the last thing we would want to do but research has shown that some exercise can help with symptoms of fatigue. There are also dvds that you can do which gives you gentle exercises if you are like me and scared to socialise to much because of the risk of infection. I’ve been doing it in my living room when I’ve felt ok to do so.
Good luck everyone fingers crossed for the snow x
Hi Jude yes I got a lot of No 7 goodies I thought it was brilliant a nice treat .
Well I’m going to ring David Lloyd and see if they do it here thanks.
I found out by chance I’m nosey and google things and found out . The dvd was Macmillan too and Its good for days you can’t do a lot but if you can you can bump it up the next level . It’s weird my gym membership was due just before my diagnosis and I thought I’d wait until I’d seen the consultant. I’m glad now I didn’t pay out as I wouldn’t have been able to go following surgery as I had mastectomy and reconstruction together so was out of action for a while but now I feel I could do a little more on week 3 of chemo because I was dead the other 2 !!!
Keep warm everyone x
Chrissy, glad you’re feeling better through week 3. Almost human again, I hope! Those exercises sound very good - I am trying to get out with the dog on days I’m not too wobbly.
Second attempt at docetaxel didn’t work today. Despite lots and lots of piriton and hydrocortisone beforehand, I still had a reaction. They gave yet more of both drugs to reverse the reaction and a decision was taken not to try again. I’ll now be re-booked for next week and will try with abraxane instead, which is the same drug in a different solution. It isn’t usually given for primary BC, but they do give it for diabetics and those with allergic reactions. A couple more days of steroids and piriton to have, and then I hope I’ll get a clear head again.
Flora sounds awful experience again - fingers crossed for you that the next time it’s okay. It must be scary and frustrating at the same time.
Chrissy you don’t have to be brave to get your hair cut - I found it immensely empowering to take back control about one thing and also liberating not to worry about having to spend so much time looking after it.
Having said that I don’t know how I will feel when it does start coming out but just go for it. If you can rid yourself of one of the unpleasant symptoms you might have more energy left to deal with the rest.
Hope this hasn’t come across as cheeky- it’s meant with the best of supportive intentions.
Chrissy. I could capped last time as the thought of losing my hair scared me. Unfortunately it didn’t work and it started coming out and was very itchy and painful. I made the decision to have it shaved off and it was the best decision. No more pain or finding hair everywhere. And I got 2 lovely wigs and some scarves. My husband used to joke that he had 3 women on the go.
I’m not cold capping this time so it’s just a matter if time before it starts to hurt and fall out. I will admit that I’m not looking forward to losing my hair again but I know it grows back and took less than 6 months to be a decent length so gonna focus on that. This time next year we will all have a full head of healthy hair again.
Flora hope they get you sorted out with your meds soon.
Hope everyone has coped ok with the weather. I had a snow day from work. Too stressful driving in those conditions. Hope it’s better tomorrow.
Take care everyone xx
Chrissy. I cold capped last time as the thought of losing my hair scared me. Unfortunately it didn’t work and it started coming out and was very itchy and painful. I made the decision to have it shaved off and it was the best decision. No more pain or finding hair everywhere. And I got 2 lovely wigs and some scarves. My husband used to joke that he had 3 women on the go.
I’m not cold capping this time so it’s just a matter if time before it starts to hurt and fall out. I will admit that I’m not looking forward to losing my hair again but I know it grows back and took less than 6 months to be a decent length so gonna focus on that. This time next year we will all have a full head of healthy hair again.
Flora hope they get you sorted out with your meds soon.
Hope everyone has coped ok with the weather. I had a snow day from work. Too stressful driving in those conditions. Hope it’s better tomorrow.
Take care everyone xx
I know it can be so upsetting to lose you’re hair. It’s part of our identity. But it is something we have to accept, so like the others I’m trying to focus on time saved washing and styling, money saved with not colours and cuts, and that it grows back relatively quickly. And you’ll probably still look like you with short/no hair. Just a different you for now.
Big hugs. I know it isn’t easy xxx
Thank you for all your support.
ok I’m going to take the plunge and do it or buy some gorilla glue!!
i liked the comment about hubby having 3 women on the go made me laugh .
take care everyone let’s hope the snow doesn’t last I don’t fancy walking 4 miles to hospital tomorrow!
big hugs xx?
Morning all - finally I have woken up feeling good - chemo effects seem to have passed - thank god ? Wondering whether I didn’t drink enough this time and that is why effects hung around for so long - will focus on that next time.
Had a lovely sleep after drinking Sleepy Tea and spaying pillow with Neom Pillow spray - kind gift from sister - can recommend- best sleep in a week.
Hope you are all feeling OK - Flora hope everything works out for you - sending you hugs.
Im at a point with hair as well trying to decide - it is coming out but not in patches just thinning- can’t decide what to do - may leave for a few more days and then see how it goes.
I have a pamper session booked for tomorrow but am wondering whether I will make it with all this bad weather - so far we have had v little snow (Midlands) but it is due tonight and tomorrow.
Have a good everyone , stay warm and be kind to yourselves.
Bibi so.good to hear you’re feeling much better ?
Flora am so sorry your Chemo didn’t go ahead again, fingers crossed the other drug will be ok. If you do get a chance to go the Gwent the staff are amazing and it is a big unit.
Chrissy I feel for you with the hair, I’ve Been more upset over losing my hair than all the treatment I’ve got to have. But after 1st chemo I’ve just accepted it now and when it’s time to go I’ll shave it off. Glad others have found this liberating, knowing we’re not alone.
I did cold cap but hair starting to thin already ? 2nd chemo on 8th so will it’ll come out soon after that .
Take care in the snow everyone xx <:snowflake:
Poor you, Jude :( That middle bit seems to be when the chemo really kicks in and attacks everything, so no wonder you’re feeling low. And I think mood swings are all quite typical. Not only are we on a ton of drugs affecting it, we’re actually going through something rather major and rather horrible, so are allowed to feel a bit down about it now and then. I try and be as positive as I can be, but I do have a cry every now and then.
I’m still getting used to my bald head in the mirror. Well, I still have a Grade 1 GI Jane haircut, but the bristles are rubbing out a little more each day. I’m almost tempted not to bother with the wig. I haven’t had to go out anywhere except hospital so far, so have just worn hats as no-one there cares about ‘another’ cancer patient. But my test will be when I go back to work next Monday/Tuesday. Trying to keep my wig on straight and chat to people at work for the first time with it on will be a test. I wonder if just continuing with hats might be better than faking it, IYKWIM.
My delays are frustrating, but I have been SO well cared for through it all. The nurses have seen it a million times before and react so quickly. Next week to try again, and in some ways I am really glad that I’m now going onto what seems to be a better (more expensive, more refined) drug that should (fingers crossed) go more smoothly from here. We shall see, but I’ve read good things about it.
Hello all, now on day 18 of my first FEC cycle and beginning to dread next week and going through the process of blood test and oncology appointment to find out if I’m ready for the next cycle. It was difficult last time not knowing what to expect but in some ways it’s worse this time knowing what is ahead.
I have been feeling pretty good and managing to get out for walks, even with all the snow however had a scare last night with chest pains. Initially thought I had pulled a muscle however it got worse instead of easing off. Consulted the symptoms check list in my chemotherapy record booklet and ended up phoning 999 as per advice. Ended up in hospital overnight being checked out for various heart issues and possibly tiny blood clots but thankfully all clear. I was advised to take aspirin while waiting for the ambulance. All we had was alka seltzer and I had to chew a tablet without dissolving it in water. It was vile but seemed to do the trick. So I spent the night feeling very guilty for taking up medical time on investigating me for something that might have been a dose of wind
Feeling really tired now after all the excitement. Time for bed and fingers crossed for next week going to plan.
It was a first though - never been in an ambulance before. As ever all the paramedics, doctors and nurses and even the hospital porters were marvellous.
Keep well everyone.
PS feeling my scalp itching as if I have dandruff. Is this the start of the hair coming out?