For those of you that not yet booked yourself on on the LGFB workshops, if you enter your poscode you will be able to find out when the next is in your area.
You do receive a nice bag of makeup and cleaning goodies - so worth going just for that
Just did Cycle 2 FEC on Monday. Got EMEND for 3 days plus usual Ondansatron and Dexamethazone for 5 days. I had really bad nausea on Cycle 1 and I really think EMEND has helped. Im a lot less nauseous this time.
I also bought SEABANDS this time and am wearing them.
Rosie Ro - I got the PICC from the start. I wrap my arm tightly in clingfilm and put on the plastic sock. I keep my arm up in the shower to minimise water contact and it works fine. I have no bother sleeping on that side. I also have no prob getting blood pressure taken on top of it just keep the catheter part out of the way
Sarah see above
Steph I am struggling to hold on to my hair. 5 days ago I tied it in a wee ponytail at the nape of my neck and kept it in with lots of clips. I have not taken it out since and its holding my hair in place quite well. I said already I sleep on a silk pillowcase which I think is a godsend - no hair falls out at night. I think I will get away with this for the rest of the week.
I hate my wig. Its too blonde and too the one colour so it shines a bit. They had promised me it would be darker at the roots like my own hair but I was so flustered I didnt say anything. I am going to have to phone them tomorrow and say I can't wear it.
Elaine thanks for the comments on the Look GFB session. I am now going to book into one - I'm told the free make-up is great!
I don't know if any of you are fond of a wee drink! My mother gave me whiskey last night - she takes that if she is car sick! I had a glass neat and it certainly settled my stomach a good bit.
So EMEND has helped me this cycle. I also got Metoclopramide to take when I need to - nausea control - and it does seem to work well too. I took Cyclizine the last time - turned me into a zombie for days - too severe.
I am going for lots of short walks even when i have nausea and the fresh air really does ease it when you are outside.
My next session is on Halloween. Last year my local hospital put up a cardboard Halloween skeleton in the front window for all the passing traffic to see - it was so funny!
Keep on keepin on ladies!
You seem to be at a very similar stage to me and I'm going to Look Good Feel Better on 24th.
Where in the country are you? I'm in the North West.
I am now day 6 of 2nd cycle of FEC. Have cold capped x2 but hair now thinning a lot. I had lots of thick dark hair before and I miss it! My veins are a bit sore today and I keep knocking my hand ( had FEC via cannula). Oooch! However, today I went to a pampering session at my hospital called "Look Good Feel Better". It was really good. I think there are quite a few hospitals nationwide who offer this, so check it out. I met some other lovely women all at different stages of their "journey" and the lady next to me has invited me for a coffee! I was given a lovely Goodie bag to take away with skin products etc. Not really into make up etc but came away feeling better and less alone. Wig fitting tomorrow...... , may just try to master the scarf thing. All the best to everyone.
Apologies for the radio silence these past few weeks.
The first couple of days after my 1st FECT (Docetaxcel) session on Monday 19th were great, I even managed to work. My experience since then hasn’t been so great.
I had awful stomach cramps and joint pains from Day 3 onwards, constipation followed by diarreah for a week, followed by a high temperature and low white cell count (I had the Neulasta injection). I was admitted on Day 6, spent 3 days on IV antibiotics and finally released late on Day 9 with more antibiotics to last me the week.
The stomach cramps gradually improved, however I felt tired and unable to do much until Day 14. The start of the 3rd week for me was a revelation, I had had more than 2 hours sleep and felt so much better, I met with the Oncologist and he reduced my Cycle 2 dosage by 20% which I had on Monday. The side effects are starting again this afternoon, just hoping they won’t be as bad as last time.
I am really grateful for all the comments and suggestions re: hair. I did the cold cap which was fine on the 1st cycle but much more hard going on the 2nd cycle this week, maybe due to having thinner hair on top. My hair is shedding at the moment, rather than clumps and is so thin on top, so I could well be making that call to the hairdresser in the next few days and my wig and headwear will make an appearance very soon. Thank You Steph for your last note, I think I may feel the same way.
I hope anyone experiencing SE’s starts to feel better very soon.
Big Hugs to all.
It's good people are getting some assistance with their side effects. I've spent the best part of 2 days in bed but feeling brighter and had a shower again today. The third week was just awful fatigue last time. Here's hoping it won't be this time as we have a short trip planned for our wedding anniversary. I had hoped it would raise my spirits.
Good luck to all those having treatment in the next few days xx
Sorry to hear you had so many infections but it's really good to know that 4 week intervals worked well if the team decide to change my schedule.
Luckily my chemo is post surgery so at least I don't have the worry of that delay. It is now 9 weeks since my mastectomy and node clearance and the wound has healed well. One thing to be grateful for!
Good luck for your surgery if you haven't had it yet. 🍀
I had infections on every FEC cycle which was one of the reasons I changed from 3 weekly to 4 weekly. Simply wasn't recovering at all on the third week.
For the first infection I was admitted to hospital and got IV antibiotics. For the other two my GP treated me at home. It took so much out of me and was on top of the other serious side effects I had.
FEC worked really well for me at 4 weekly intervals. My lump shunk from over 3cm to barely there.
I know how you feel in a way. I was told about week 3 being recovery and I didn't have one of them!
Hi Rosie, with the PICC you can get a Limbo cover (waterproof for showers/baths) on prescription, so free.
The other covers cost about £18 and you get them from Live better with cancer. After a day or two you will not know it is there and it will not stop you turning over in bed. Exercise is just the same if and when you can manage it - keep it covered and honestly in a day or so you will be used it it and it will not interferre with whatever you want to do.
I hope you don't want to go swimming - I don't think you can do that. Or sit in a sauna.
Well, I'm at D 17 in my first FEC cycle and was looking forward to a week of near normality and little treats..How wrong was I. As soon as my neutropenia time was over, some old dental problems started to flare up and now I have an infection. My dentist, endo dental surgeon and onc team now have to figure out what to do to ensure I can have chemo 2 next Tuesday. My face is swollen and my head is aching due to losing my hair (remainder is going today). It's crazy but this set back has upset me more than it should. I guess I feel my week of feeling normal has been stolen!
Has anyone else started getting issues only in the final week? I had very few problems with the chemo itself, only really nausea and indigestion plus a little tiredness...
Well end of rant and back to the round of appointments.
I was booked into the hairdressers this morning, but my partner wants to cut off what is left of my hair himself as wanted to make it personal - he is really struggling with this.
I think it will be Ok,I still have quite a lot of long strands left - so he will just cut it very short - hope this is a good idea
Some good tips here for scraves, never thought of padding out the hat to add volume - great tip!
Hi See See,
I had to move to a 4 weekly cycle whilst on FEC as the side effects were so bad. Had 4 weeks after the last FEC infusion and then on to Docataxel (T).
Because I had so many side effects from FEC I asked for the dose of Docataxel to be reduced. Glad I did this as I didn't make it through the first infusion without throwing up.
The side effects weren't as deeply severe for me as FEC just different. Once on Docataxel I was able to go back to 3 weekly cycles and after making a formal complaint to the hospital we even found a combo of drugs that helped control the sickness.
It is really tough.
I bought a wig and wore it last Friday on my Birthday and it really felt like I had a dead cat on my head!
Going to have a look at getting another - just felt so frumpy in it!
Cannot comment on the PICC line as I have had a port cath inserted instead, but I am sure the other ladies will come along to offer advice.
Love this expression:- "I gently combed out several small kittens worth of hair" having what left of my hair off tomorrow - not sure how I am going to react at seeing myself with no hair!
I have spent quite a lot on scraves and hats (probably too much!) but I try and colour co-ordinate colours with what I am wearing - I know it does not hide the fact of what is happening to us but I have had a few compliments of how beautiful and sassy I look. Wishing you all well xxx
You put a smile on my face Dawn with regards to all the lotions and potions. I must admit I keep forgetting to put stuff on my toes nails.
Sarah- just to let you know I contacted my Oncologist regarding treatment as per your message and have an apt next week - will be interesting to see what she says, thank you for the advice. xx
Hope you are feeling better today
I am better than I was on Sunday & yestersay but now have a nagging back ache!
I cannot believe how this treatment is changing me and I don't like it one bit
As I am employed by our own company and can work from home although we do have a small office I cannot believe that it takes me until mid- morning or beyond to get out of my dressing gown - WTF is that about!
I used get up chose something to wear for the day and put my my face on and presented myself as everyone knows me as, now I look horrible, last bit of hair shaved off tomorrow - just another thing to cope with
After FEC 2 I spent days 6 & 7 in bed - sleeping, sore throat, aching and feeling generally awful. It seems it's the same again with FEC 3. They've told me I may need an extra week to get over this cycle before I start the docataxel. Is anyone else feeling this rough? My arm is still really painful and swollen from the injection of FEC 2 and looks a mess (like me). Tough stuff this going through chemo isnt it? 😳
I'm sorry you are having such a bad time, Lisa. Hopefully next time you can get the right meds to make sure the SEs are at a minimum.
I'm hoping my second, third, fourth, five and sixth cycles aren't as bad as my first!
Lisa - sorry to hear you are having worse SEs on your second cycle than on your first - in my case it was the other way round. I am now approaching the 3rd and last cycle of FEC, assuming the oncologist is willing to go ahead with it this week following the re-appearance of the infection, which has now thankfully cleared up again in response to the antibiotics. We are due to see him tomorrow morning so we'll see what he says. Fingers crossed...
Thank you so much Sarah really did not know that was an option? Not sure how to approach it because I really don,t want them to come back and say this the course ie 6 sessions etc and that I will have to have it Take care x
My first chemo session went like a dream, no sickness, not too tired and all Ok.
Had 2nd chemo last Wed and last night I felt so awful. All my muscles hurt in my head and neck.
My breast implant is bulky and uncomfortable to lie on my side, the other side in uncomfortable due to the implanted port cath, so can only lie on my back.
I feel uncomfortable due to bloating. Even my face muscles hurt yesterday whilst cleaning my face.
Hating all of this
I forgot to say, I had Ondansatron for five days, which worked well. I also had steriods for three days and a back up anti sickness to take as and when I need them. I didn't finish those but I've kept them in case I need them for the future. Ondansatron work on the vomit centre of the mind and my back up ones work on the stomach, if the nausea becomes too much for me. My nurse rang me on Friday to find out how I had got on and she said she was keeping my drugs as they are for the next cycle; I shall see how I get on with my own coping strategies this cycle and if things aren't improved I shall ask for stronger drugs.
No worries Aine. Even after one cycle of chemo my brain cells are dying fast!! I dread to think what I'll be like by cycle 6!!
My appointment is at 8am but last time I had a good breakfast (I'm a student nurse so I'm used to eating at unsociable hours!), a mid morning snack and a light lunch and I shall do the same each cycle because there's nothing worse than being sick on an empty stomach. I was also recommended Sea Bands a couple of days after chemo and they really helped with the nausea so this time I shall take them to hospital and put them on straight after my chemo has finished.
I'm thinking of it as 2 down 4 to go. That sounds better than finishing in January!
Aunienanna - good luck on Wed - it isn't really an unpleasant an experience - it is painless and the nurses have a good chat with you while it's being done.
The main thing is to try to fend off the nausea from the start.
Most of us have been having nausea problems and I had really bad nausea for 14 days - I'm back tomorrow for cycle 2 so have been thinking a lot about this.
Plenty of recommendations about anti-nausea med from our September buddies and I was stupid enough last time to give up on medication and suffered in silence - don't do that!
I am going to ask for Emend and Akynzeo and Ondansatron (my nurse says I should have stayed on that for more than 3 days as it is good). I had dinner at 1pm and a snack at 6pm and will only have a banana for breakfast. I will try to fast all day and drink water. I hope I will be ok cos I could not go through that nausea again.
Dawn - I ordered 2 sleeping caps but now i better order a few more.
Lisa - book early for your cruise. I have not been on one yet either. I hear great reports about Alaska and the Scandinavian ones if you don't want to do a hot one.
I got the flu jab and the pneumococcal one (dunno how to spell that!) two days ago. Flu no reaction but have a big sore swelling with the other one. Just took paracetemol.
My hubby is reluctant to get the flu jab cos he's a complete coward. Anyone else get their family members to get it?
Aine - I love this :- 'Don't tell me you are going to be with me on my journey unless you are taking me on a cruise!'
That's my plan next year - never been on one - what will start looking at booking on one next year!
Aine - glad to be of help. I forgot to mention, make sure you order in plenty of sleeping caps as soon as possible if you haven't already. These will not only help to contain the hair while it is falling out and reduce the mess, but will also keep your head warm at night and during the day around the house if you wear them under scarves, turbans and hats etc. Bohemia Headware and Annabandana have been very efficient at delivering orders to me, and if you just order sleeping caps only, they will deliver them by post in packages that fit through the letterbox, so no waiting around for packages you have to sign for.
Thanks for all your comments - this thread is such a great idea!
Blueash - no I'm not getting GCSF but will ask about it if there is a problem tomorrow
Lisad - congratulations on your birthday - I hope you were able to have a wee celebration!
Yes that sounds like what I got LIPOCILS. It is definitely for eyelashes and eyebrows too.
You are a week ahead of me on this journey.
I got a funny card from a friend saying 'Don't tell me you are going to be with me on my journey unless you are taking me on a cruise!'
Old Dawn (you are not that old!) I will ask for Akynzeo too and thanks for all the supportive advice - you are right I won't suffer in silence again. And maybe I will keep some of my hair - fingers crossed. It is falling out a lot today. I used dry shampoo on it today. I'm afraid to wash it in case it all falls out. It looks awful but I just want to go to hospital with hair tomorrow. I will get the wig then.
However I noticed something yesterday which some others might have noticed.
I went out to walk the dog at 8pm in the cold air and I noticed that it almost stopped my hair loss for the rest of the evening. I think it was the effect of the cold on my scalp. Perhaps its the same principle as the scalp cooling cap?
Anyone else notice that?
Sarah04 that is very interesting that they changed you to 4 cycles.
I am doing chemo as a precaution in case there are any stray cells anywhere else. I was given the all clear after a mastectomy and implant reconstruction but they recommended chemo as the tumour was grade 3.
Heather's Hair was a great website and I have sent away for their hairband with hair at the back.
Also my daughter uses hair extensions sometimes so I sent away for some. Only £9 and you can clip them yourself quite easily onto a hairband. I tried them out and they look fine. There are 8 pieces so you can have a thick or fine look under a hat. You have to trim them to size which I haven't done yet.
Florata Fashion Hair clip-in hair extensions. jakeoffer.com
I got them from Ebay.
Keep your spirits up and CARPE DIEM everyone.
I didn't get my bulbs planted as it started to rain but that's my task for today!
yes you can get. Refund. I had a pre-payment card and you can get a refund from when your 'medical exemption' one starts. My pharmacy reminded me.
I second that - it has saved me a fortune too. I can get free prescriptions for all the medication I need, for anything, not just for the BC. For example, I've had several courses of antibiotics and dressings for my infection as well as Hydrocortisone cream for my eczema. Anyone who hasn't yet applied for a free prescriptions card should do it now. You fill in the form at your GP surgery, a doctor will then sign it and send it off for you and you should get the card in the post about a week later. You can also claim the money back for any prescriptions you have to pay for in the meantime, if you ask for a claim form from the pharmacy that dispenses your medication, provided that the date of the prescription post-dates the date on your card once it arrives. As long as this is the case, you can present your card with the completed claim form at any pharmacy and get a refund.
Thank you for that - was not aware that I could get some non presciptive items things free, even though I get free drugs as over 60!
Aine - glad your sickness is over now, and hope your second cycle is better. Sorry to hear your hair is falling out as well, if it's any consolation most of mine had too by the end of Cycle 1, but what's left (admittedly not much!) seems to have survived Cycle 2 without any further significant loss (it is now Day 16), as have my eyebrows and eyelashes, without any special treatment, although they have thinned a bit. I hope I can hang onto them through Cycle 3! If you want to get a full wig it is best to do it through a hairdresser trained to fit and trim them to suit you. Athough I've got a cheap and cheerful fringe from Bohemia Headware that looks OK, I did have to customise it a bit by removing the metal clips and sewing it onto the headband. The Headcovers under hat 'halo' wigs look good (as does Vintage's Gisela Meyer headband hairpiece), and I am tempted by both! Let us know what you think of your under hat wig when you get it. Regarding the nausea, if they give you Emend next cycle and it still doesn't help (as it didn't for me on my first cycle of FEC), insist on something better - and yes there is something even more effective at stopping nausea and vomiting than Emend, called Akynzeo. You may have to badger them for it if all else fails because it is not widely available for BC patients at the moment. They gave me Akynzeo on my second cycle of FEC and I had no nausea at all. Not even a hint. They still stuck me on 3 Dexamethasone a day for the 3 days following chemo though, which I was a bit annoyed about because it makes me hyperactive, ravenously hungry and affects my sleep - as a result I had to do withput back on all the weight I lost while in hospital by the end of Cycle 1! Anyway, whatever you do, don't suffer in silence next cycle, always ask for help if the anti sickness medication isn't working, or if you have any other SEs that make life difficult. That's what your oncology team are there for - you shouldn't have to cry to get what you need, but you must be firm. You could also consider taking a friend or relative along to the next treatment for moral support, preferably someone assertive who can tell them just how badly the first cycle affected you. Hope you get the support you need next time. XX