Lucy missed your post as had closed down my PC may try that next Thurs.Thanks. Tina thanks so much for your v.kind words of wisdom Was feeling much better today and got into work OK when a friend/colleague came round to my office and complimented me on looking so well ))) WOT but hey compliments definitely received resisited bursting into tears.She tells me I work in a toxic environment I take on board all you are saying and had not thought of my tearfulness as a SE just a case of me not getting a grip.Had never had anything like a panic attack before. I think you are right I probably do need to have a friend with me at the appt and a few have offered, as well as BCN who always comes out with me after the appt to discuss/ check that despite my 'brain fog' I have understood what has been said and she always has time for queries then or at a later date on the phone or in person.So I am really lucky in that respect as some ladies on the thread do not seem to see their Oncs or BCN hardly at all.Have got a few nice things lined up for the week-end supper with a friend tomorrow, she had BC 17 yrs ago but has just told me she has chest/rib pain so is referred for chest x-ray and mammogram. She was given all clear 2 yrs ago I do so hope she is OK. Then Sun daughter and boy-friend coming to me for supper so nothing too taxing. Ladies hope you all have as good a w/end as poss and hope the sunshine lasts even if it is still a bit chilly.Thanks as always for the positive support and encouragement you all give. LOL and hugs Jackie
Hi Jackie, you sound like you will need a lot of support to get you through this. Have you tried the macmillan to see if they can provide you with a local support who can come with you?
No one can make decisions for you but you need to be in a clear state of mind to be able to consider the options. You need someone with you who can take in the information clearly and relay it to you later if needed. I find things at the appointments go straight over my head and I am in a "brain fog"! Psychotherapy is probably really helpful, maybe even anti depressants if you are having panic attacks.
Feeling desperately upset is as much a distressing SE as being physically sick!
I hope you can get through this and will feel a bit improved soon. All of this is such a terrible strain on everyone, don't underestimate what you are dealing with! xxxxhugs, Tina.
I am sorry to read that you are feeling so low, I wondered if you would be interested in Live chat this evening, it runs every Thursday 9-10pm, here's the link where you can read more about it:
Hi All Van sorry to hear you are still having a tough time with the SE.I see Tina is having a portacath soon but it has not been mentioned to you. In my area it is used as a last resort but I think this must be a local thing, you could ask.Had 3rd FEC yesterday. Did not sleep well the night before, got to Hosp OK and then was gibbering and having a border line panic attack in the car park, and had found a parking slot OK too. Had a long wait to see my Onc as 1 Dr was off sick.BCN called today with MRI appt and appt to return to see Onc, he is off for 3 weeks and said he wants to see me himself with surgeon in tow for the results on polling day))If I am to go ahead with TAX it will be a 4 week interval which he says is OK as I will have missed the chemo days that week. I will be seeing my BCN next week as I need her to know how I feel about TAX (Onc spent several weeks persuading me to have chemo in the 1st place)I need him to know that I will go with what he thinks will give me the best chance.She will be at the next appt and also at the MDMtg on the Tues before my appt when my results will be discussed. Also BCN informs me that if I need a WLE, small lump awkward place, the surgeon will even things up by taking some out of otherside NO WAY JOSE that ain't gonna happen))My daughter cannot come to the next appt with me and I feel I cannot inflict my severe distress on a friend I was an absolute basket case at the last appt for results as 1st 3 chemo had not worked.So need her to know all this. Am feeling so sad and despearately weepy, but so far no awful physical SE like some of you are having such a bad time with. Got chemo day and today off sick back to work on Fri. Seeing Psychotherapist on Mon morning think I need to.Sorry about the wittering and hope you are all feeling a least a bit better soon LOL and hugs Jackie x
They havent mentioned the central line to me.... actualy I find that needle bit the worst bit. Well apart from cold cap but not sure I want to do that again.....
My vein is tender and arm is very sore.....
And so tired tonight.... day 10 ... maybe thats it...
I have to say it was easier with children this time for me as they have been at their dads.... so just me and Hector (my dog) which on these sunny days are great to walk and chill out with....
Hope you begin to feel better
Take good care
I am in the same boat, lost 2 stone end of 2009, if I keep going this rate, I will not succeed keeping it off!
It's a week since the first FEC and my blisters/redness and sore of the vein they ended up using is still there, too. I hope it clears up. Did they discuss using a central line for you? I am going to have the portacath fitted after next blood count. I hope that will work.
You are a star for working, I am wiped out looking after the kids, house, dogs, not sure how I will get out the house for the school run after the next session.....luckily it was easter holidays this time around!
Love to all.xxxxTina
Not sure a real star Highball....
Maybe be bloody stupid.....
but it keeps me sane and busy....on most days...
thank you anyway x
Van you are a total hero - I can't believe you are managing to work through all this crap! What a fighter you are. And now you're giving yourself a hard time for putting on weight! It can't be helped, really - the steroids make you ravenous and anyway, you need all the calories you can keep down at the moment! Take care, you are a real star - do hope the side effects get easier, you certainly deserve a break!
Hey guys.... thanks for your comments...
Monday full day at work today..... feel better than the weekend but wiped out now....
cant stop eating.... is that right...or am i just greedy !..I lost weight before all this and now Im heading back to the bigger me....
Veins in right arm very sore... and painful... will that stop?
All these questions yet again
thanks for omments Michelle, Libby and Tina..... keep smiling
thanks Sandra for the kick up the butt xx
had the veins problem on my first fec attempt on Thursday, line went in half way up my arm on the 7th attempt but it still blistered and burnt. I am having a central line fitted so that won't happen again, like you full of bruises on left arm. Also not keen on the steroid, bit hyper and hungry when taking them! brrr, want my life back! xxxTina
Van so sorry to hear you are having such a c**p time it is OK to moan and strop. Hope tomorrow brings some relief from the SE. H (Sandra 4) you could always have an anniversary of your 62nd birthdayon the 17th Michelle your nausea sounds so extreme you poor thing. Hope tomorrow is better for all LOL Jackie
Hi Van-I'm a bit further on (done no.3)but have had same problems with veins and vomiting. Re the veins they have discussed putting a line in under my collarbone which apparently isn't as bad as it sounds, although I won't do it unless I really'really have to. I also work in high infection area(Nursing Home)so get paranoid. Had to go back to work as I don't get any sick pay from the company but they have helped me out by getting in an extra carer so I don't have to get to close to the people known to have a bug-it's worked so far!!! I only had steroids with the pre-med because they sent me manic for over a week so now I get extra Ondansetron but still seem to get violent vomiting 24hrs post chemo, then Gp comes out and gives me a shot of cyclizine and everything settles down. For me thats better than steroid-mania.I never did the cold cap-just shaved it all off. Its wierd at first but now I'm used to hats and bandannas and it feels perfectly normal.Noone has ever looked at me oddly or if they did I didn't notice
Good Luck-Michelle xx
Probably old enough (63 on the 17th) but still 62!
With two sons 34 and 36 have seen lots of tantrums. And now l have four beautiful grandchildren, Ben 5, Jack 3, Imogen 2 and Coby who is 2 months, and yes you can guess which one has the tantrums (Imogen) but then again they say we are the weaker sex,(lol) so we are allowed to have a tantrum or two.
Really hope tomorrow is a better day for you, have a 'spoil me' evening! eat drink and be merry, Oh perhaps NOT! try a good book and curl up instead
That made me laugh... you sound like my mum!
You have all the right in the world to be a moaning minnie, a little miss grumpy, and by the sounds of it having a big tantrum!
And why not, if you need to take your frustration out on anyone, then we are all here to hear you!
You are having a rotten time, so vent your anger, tomorrow is another day, and hey who knows you might wake up and be little miss happy, or little miss sunshine!
Wishing you Happier Days
Love and Hugs
Day 5........ not so great.... have awful indigestion.... and gob stopper..... and so flipping tired....... feel sick and bloated
AARGH!!!! I know amoaning minnie today
I am a right grumpy drawers today.... not going to do the cold cap again... id rather lose it all completely than find it everywhere.....
Is it worth it all..... I dont want to feel like this anymore....
sorry, having a big moment....I love laughing and being healthy but am so struggling with it all.....
just wanted to say I was glad to hear the new drugs are helping and your feeling a bit more cheery .Emend is supposed to be the best anti sickness drug I think. Lets hope it keeps the gob stopper away!
thanks for the post.... had a great night sleep last night.... have woken up a bit wobbly just maybe need to eat.... Also I have a red face.... I suppose that is the dye for FEC.....
Wearing my scarf today to work for the first time.... fingers crossed it will stay there!
hope you have a good day...weather looking good for this weekend for that sleeping in the sun stage.... wahoo!!
day 3 and feel so much better so far than last time.... thank you emend!
Hi Van Sorry to hear that you have a vein problem too.I'm not sure if you can take sleeping tablets with steroids but the latter is noted for keeping you awake which is why we get told not to take them too late n the day as they can make you buzzy.Sorry no idea about Emend either seems o some meds make you sleepless and some stop ypiu being sick can't win can we?Hop e you have felt better as the day as gone on.LOL Jackie
thanks for your response...
I checked with the nurse and she said they were ok....
Veins collapsed yesterday so took a few tries....nice bruise today on hand... war wound!
Been awake most of the night from the steroids which isnt great.... I need my sleep but now vomiting yippee.... very wobbly and all over the show..... but still not sick.....
Came away with lots of medication, but as long as it works....can you take sleeping tablets with steroids.....
They gave me 3 Emend...are they the ones that stop you sleeping....
Gonna eat some toast , walk my dog... and try to get around to all the nurseries to make sure they are all ok before I head back home for sleep.... I love my sleep
have a good day
Hi van and everyone having their 2nd FEC to-day /this week is OK. Re the honey I quickly take it from the spoon and have a spoon full of cereal and a swig of tea to get it down. I don't normally eat honey. Van do you know if the meds from Boots are OK, just wondering as some remedies do not go well with chemo? But I can see if you work with potentially germ ridden small children your immune system needs all the help it can get.Have been so exhausted ( sure it is insomnia not chemo doing this) recently went to my GP and she gave me some sleeping tabs last night I had the 1st full nights sleep I have had since Dx last Nov so am taking one again tonight. Good night all hugs and love Jcakie
Hello to all
thank you thank you for all your responses....
My medication has been changed to Emend and instead of 8mg of steroids its now 20mg......
I feel so spaced out and all over the show so off to bed soon....
I tried manuka honey but that made me feel sick putting it in my mouth.....
so i have bought some tablets from boots to boost my immune system so will give them a go.....
I work with children so need to be carful with bugs etc.....
so a good night from me..... I hope those who had their 2nd treatment today and this week lots of luck and love...
and to all those who send comments.... thank you again.... from the bottom of my heart x
Thank you for all the advice, getting a bit anxious now. Will get in lots of plain nibbles. Had really bad pregnancy sickness/nausea last baby and bit phobic about the sickness part now. The honey results are impressive, it's expensive but worth a try! Have not had a big appetite since all this BC business started at the end of Jan10, trying to recover from the surgery and now getting head around this! Did ask chemo nurse about the haircut, had about 2 inch taken off last week, it's just about chin length now and she said it's fine. Glad the kids are on holidays so no school run to manage but no3 son has a bad cold! Typical.
We will see how it goes on Thursday. Good luck to all this week. xxxxTina
Hi have just seen the comments about Manuka honey. My WBC were better after the FEC than after the MM chemos and definitely not expected.A friend had sent me a cutting about some honey, which I could not find, but I remembered that I had an unopened jar of Manuka that I brought back from NZ. Not sure how much to take but I have been having
1 tsp first thing at breakfast straight off spoon and my first blood test showed WBC back to what they were before any chemo( I have a WBC count on the low side of normal which I was not aware of) so easily compromised.Will see what my WBC does next Tues, day before 3rd FEC.Thought it might be a blip? Re cold cap I thought I was going to faint when I had the 2nd of the 3 caps I have during chemo. I felt so dizzy and my head WOW.( Think this may have been when I was having Cyclophosphamide part of FEC which can cause dizziness) so will check this out if it happens again. Thought I would have to tear off cold cap. But did relaxation breathing and it passed quite quickly. Still have hair so it was worth it, every day is a bonus.Re food I have nothing really to add except that we really need to stay well nourished to be in best state for surgery. May be easier said than done as I have a very poor appetite and malfunctioning taste buds too. Have been advised to drink loads of water or dilute squash too as I am told this keeps kidneys flushed through to excrete chemo drug residue and also small snacks instead of 3 larger meals if this suits you better. I guess we are all so different it is trial and error as to what suits you. But any tips are always well received.Love to all Libby 2010
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You have such lovely long hair - but if you are going to try the cold cap they recommend you cut it very short, so that the cap is in good contact with the skull. I had mine cut to 1" - was a shock at first, but got to like it quite quickly - in fact I don't think I will go back to my old style. Anyway I still have most of my hair after 3 FEC and 2 Tax - it's thinning now more with Tax but not so much I need to wear a hat, probably I'm the only one that notices.
As for food - lots of bland stuff in case you get nausea. Ginger biscuits are good - also I drink a lot of very weak squash as I find chemo makes water taste horrible - and you must make sure you drink at least 2 litres a day. Good luck - just go with the flow and try not to do too much.
ihi everyone,i had the cold cap 6 times while havin fec,the pain the last two was bad when my hair was really thin i carried on havin it because i got away with wearin hats but i had my head shaved when i finished so my hair grew back the same length,try not to worry about your next fec the time flys by,i can still smell the cold cap i wouldnt recommend anybody to have it,but then again the worse part of chemo is losin your hair.stay strong luv dawn xxxxxx
Joining the FEC club on Thursday, what kinds of foods should I be buying in, lots of water, too I suppose? Will try cold cap but get migraines so not sure if I can last the hours being strapped in the cap. How does the honey work?xxxTina
Just to say good luck everyone who are having their 2nd chemo this week.
Also to those having the cold cap, you do loose loads after the first treatment, even after the 2nd. But after that is does slow down. I had my 3rd FEC a couple of weeks ago and used the cold cap and still have hair - thin and patchy!
Do speak to the nurses about your SE's they can be adjusted. I felt quite poorly after my 3rd - it seems I wasn't taking enough of my medication.
Manuka Honey 15+ (£11.50 from Sainsburys) is supposed to be good for low blood count and general well being.
Lots of hugs
Amanda 🙂 xx
Good luck to Van and petal, fingers crossed for you both, hope not too bad. xxx
Sorry Mazzer saw you are also having FEC no.2 today so above message includes all having chemo this week.Love and hugs Libby 2010
Hi Van and Petal Good luck to-day not sure what else to say, be sure to tell staff/Onc about SE as they may well be able to change your meds to reduce SE Love Libby 2010
Van, I hope it goes ok for you today! Do tell them about your side effects and I'm sure they will look at your medication. I too tried the cold cap on the 1st FEC but it didnt work and hair started coming out before 2nd so I didnt bother again! Wore hats and scarves, as mine was last summer and wig was too hot!!
I worked full time for 1st 2 FECS just had a couple of days off, but as Im a teacher my 3rd fell in the summer holidays. I have to say I then didnt return till after chemo finished, I just had to give in. But everyone is different, just listen to your body and rest when you need to!
Take care, love Debs xxx
Hi Van, im having my second FEC on friday.. After first one felt not too bad had terrible heartburn which seemed to be my only symptom until the sore throats started, feel tired in the afternoon so sometimes have a nap. Ive heard from others you can have different side effects each time so not looking forward to experiencing anything else.. good luck for tomorrow let us know how you get on
Hi Van & Petal
Like you I am due to have FEC no 2 tomorrow & know how you both feel. Hair just falls out whenever I touch it (whole head seems prickly) so don't know if I will use cold cap tomorrow, need to start thinking about wigs -I can't do the bare head. Will be thinking of you both whilst I am at the hospital & hope all goes well for us all.
Make sure you ask for better anti sickness drugs - you shouldn't be sick for so long.
I don't think working fulltime is realistic at all. It is not surprising you have been knackered and needed an anti biotic. You're asking way too much of your body. I know it must be really difficult if you don't have much sick leave.
I'm lucky and took sick leave from the first day of my chemo. You've got to be kinder to yourself.
I've felt sick, tired, sore throat, no taste, bad taste, heart burn etc. But I can pace my day, do something nice if I feel up to it and stay under the duvet if I don't.
Work is good for taking your mind off stuff, can you work part time?
aww, so sorry that you are having a rough time on FEC! I had FEC too, but igve finished mine now.
cold cap didnt work for me either, but i try to think at least i tried it! Dont like my wig, either- and always wear scarves.
Did you have anti sickness meds?? i used to have Emend, Ondanzatron, Metroclopamide, and Dex. Just a thought.
take care, eva
Hi All Oh Van you sound like you are having such a tough time.We are all here to listen and commiserate with each others bad times and celebrate the better times. Have you got some good anti-emetics? I found domperidone works for me, but I had to take 2 before getting out of bed,if I got up first the nausea kicked in within a minute and was harder to shift I do so hope your SE will not be too bad this time.I too am using the cold cap and although some hair is coming out on the comb it is still fairly OK, greasy fine nad floppy as am too scared to shampoo it.But one of my eyebrows is looking v.patchy My Onc left me in no doubt that it will go the last time I saw him before 2nd FEC. Carry a hat every where with me just in case.Oddly my white cells were better after 1 FEC than with the 3x MM although I am having GCSF injections on days 5,6 and 7 after FEC and will need to continue.I too have a wig ready and whilst I liked it in the shop have had to put it away in the cupboard as cannot bear it sitting there looking smug ( I talk as though it had its own personality)I have been working F-T but need to conserve full paid sick leave( I am on my own) as I do not know if I will need 3x Taxetere that will be chemos 6-9, then surgery and rads. It is becoming harder as 3 F-T ( out of a team of 4 have left) in the last 2 mionths and we were all working at over capacity with a bid in for 2 more F-T so only me left. Have finally had to take 2 weeks off this week and next week ( almost keeled over at work) and the relief is immense and the nausea has disappeared completely.I do not know what to suggest but You are the most important person and need to look after yourself. Can you at least take the day of the chemo off and the next day? Sending you thoughts and hugs for tomorrow please post and say how you are, will be thinking about you.
Love Libby 2010
I am on the same schedule as you - due for second FEC tomorrow and I echo a lot of your feelings. I was very sick the first few days. I don't know how anyone can work during the first part of the cycle. I just slept for the first three days and even after that was exhausted. I live on my own and just managed to look after myself and sleep!
I used the paxman cold cap and hair started to come out day 20. At present I still have a good covering and will use the cap again tomorrow. I have a wig ready but not sure I will wear it much. I will decide when I have to. I have also bought hats which I think I will be happier wearing.
Of course we don't want to go tomorrow but we will and it will be another one down. Keep positive and good luck tomorrow. I will be thinking of you while I have my treatment too.
oh van sorry to hear your having such a crap time... explain this when you go for your treatment and hopefully they will give you stronger anti sickness meds and may even adjust your dose of chemo which i know they do with some individuals.
be good to yourself and dont put a lot of pressure to be 'well'.
sorry the cold cap hasnt worked for you and that you dont like your wig but some hairdressers will trim it to a style that you feel happy with.
hope things get better
Im having my FEC no 2 tomorrow and dont want to go....
My first treatment three weeks ago was a nightmare.... I am normally a healthy happy person.... but the first week I was extremely sick... the second I couldnt keep my eyes open and grumpy, had to have 7 days of anti biotics and white blood cells too low for the next treatment....
My hair is falling out big time with the use of the cold cap... bought a wig, liked it in the shop but now I hate it... resorting to wearing scarves.....
Have a vile taste in my mouth.... and feeling so p***ed off and angry
I am still working full time... is this realistic,,,,
I am after advice, help and words on how other people are feeling.... I know everyone is different.....
thank you for listening