1st chemo tomorrow!

system · 12 October 2009 10:46

JC - I have steroids plus two sets of antisickness tablets, plus anti-indigestion, plus mouth wash, plus something else that I don’t know what it does… I rattle for 3 days after my chemo! And yes, the chemo brain does go after a week or 10 days. I feel absolutely back to normal (whatever that might be), with 3 days till my third cycle.

Wills, I have a Hickman line - it’s not caused me any problem so far, although I hate it being there, hanging round my boobs all day reminding me of things when I could otherwise forget. It makes me feel very unsexy but my OH is benefitting in that the best way to hide it, in his eyes anyway, is to disguise it in a lacy basque with accompanying stockings! Or so he says! It does make things much easier for inserting the drugs - no hunting a vein or bruising, and it’s safer on your veins as there is no risk of extravasation. I hated having it put in - in the fluroscopy department of X-ray by a radiologist, but I think the PICC line is much easier and done on the chemo ward by the nurses. I will be getting rid of it as soon as I can, but think overall it’s better to have a line of some sort if you have small veins and particularly if you have to have lots of drugs like herceptin. I am so looking forward to having a bath over Christmas!

Loocie - good luck with the shaving. I’m still waiting in anticipation to find my hair has fallen out overnight. Not happened yet!

Have a good week all

Helen.

Loocie · 12 October 2009 13:31

Hi Karen. I’m having a PICC line put in tomorrow, and by all accounts they are a good thing. I’ve been told that I will have to go to the GP surgery once a week (or district nurse to come to me if nec) to have it flushed with a saline / anti-coagulant solution. The external port can also be changed at the same time too. You are able to bath and shower (just need a ‘shower sleeve’ or cling film) to make it completely waterproof but you can’t go swimming - hurrah!

Got my hair clippering ceremony booked for 4.00 this afternoon, and although I thought I’d never say it, I can’t wait. My hair hurts like crazy, and just feels so dead it will be kinder to put it out of its misery!

Had the all clear to go ahead with swampy tomoz, and they have changed my anti-emetics to Dex, Ondancetraon, Metoclopramide and buccastem. Wasn’t very helpful when I asked about a mouthwash…the best he could do was corsodyl, which is GROSS.

Will be in touch when I’m human again. Keep perky all
xxx

system · 12 October 2009 13:45

HI Loocie

beware the Buccastem - I had this for seasickness once and it made my mouth horribly dry - it dries up the saliva and makes you feel like you’ve been eating raw rhubarb or sloes. Not sure if it worked for me on the seasickness - I had patches to stick on, the dry mouth went a couple of hours after removing them.

Try asking for Difflam mouth wash - it tastes a bit antisepticy but it does seem to have prevented the ulcers this time round.

Helen.

system · 12 October 2009 17:43

Hi Trumpet !

I started my chemo in September and have now had the second one - thank god side effects not been too bad !! I too have to have 6 then radiotherapy oh well bring it on is all I can say and just think it’s just a mopping up process that is what my oncologist told me !!

The worst side effect is hair loss which is so hard to come to terms with but am getting there !! Mind you used to love a glass of wine with dinner “UGH” these days my taste buds have changed. After the first chemo I had a craving for banana sandwiches and if I didnt know better at the ripe old age of 58 I would have thought I was pregnant. Anyway this time it’s the same and it has to be brown bread, gone off fish which I adore ! I finish on 30th December how about you.

Debbie
(which is my real name)

xxx

system · 12 October 2009 22:00

Hi All,

Haven’t been on for a few days because just when I was saying ‘oh I think the nausea is better this time’, I then felt worse. I think it’s definitely better tonight - day 6. I think I get the same drugs as most of you ie Ondansetron, steroids, and domperidone. I am not convinced that the steroids work (but told to stick with them) and will have to get an alternative to domperidone as it def doesn’t work.

Helen and Trumpet - wish I had tried the cold cap now!

Hayz - Oh thought it was just me with the food cravings (?due to steroids). I was quite pleased the first time round as I had lost 5lbs but strangely this time round I seem to be craving all the wrong things…I love belgian buns at the mo and have got around 20 in the freezer to feed the nausea!! and I seem to have to eat every 2 hours or my stomach starts to revolt. I think I have put back the 5lbs and more…bit gutted really because it seemed to be the only positive side effect…lol.

Loocie - good luck with the picc line and next lot tomorrow, and Helen for Thursday.
Karen - glad you got the Emend, but awful that you still felt very sick, - sometimes if its that bad they weaken your dose but I know they try not to as they feel it might compromise your treatment.

Hope all goes well for everyone this week
Lynn xx

system · 13 October 2009 08:49

Loocie

sorry - made a mistake on the Buccastem - it’s not what I remembered -it was another seasickness drug which is on a patch. The Buccastem is a little tablet you put between the teeth and cheek and let dissolve - it does work to a certain extent for my seasickness - although I do get stomach cramps with it - better than nausea though. Let me know how it works for you.

Off for some acupuncture before I start again on Thurs to see if that helps - I’ll let you all know. Might try some hypnotherapy too - if only to put me off scoffing large amounts of worthless food! Lynn - I know how you feel on the weight loss thing. I was hoping the chemotherapy diet might lose me two stone feeling great and slim for my wedding next year - no chance of that! Lunch for me on day 6 of my last cycle was chip-shop chips followed by a belgian bun - how unhealthy is that? Oh well, I suppose it’ll come off again eventually.

Debbie - I can’t drink red wine at the moment - it just gives me instant indigestion! I hope that side effect wears off. White wine is ok, but only after the first 10 days of the cycle. I also struggle with meat on the first week too which is odd as normally I love meat.

2 days freedom left… was due to go on a Virgin balloon flight this morning - would have been fantastic as it’s a beautiful day but it was cancelled due to fog. I’m gutted as we probably won’t get to go this year now and have to wait till next year. Oh well, more time to get some work in, I suppose.

Helen.

system · 13 October 2009 15:32

Hi all

Not been on for a while. Getting used to the news that I need chemo.

LynB - sorry to hear you have been through a bad time.

Helen and Trumpet - good to hear about the lack of hair loss. I am due to have my first chemo on Friday and there are so many different stories with some losing hair and some not, it is difficult to know what to expect. I am having 4 Epi and 8CMF and am going to try the cold cap. Got a wedding to attend in 5 weeks so hoping the hair is OK. Normally would have been getting it cut and coloured around now so not sure what to do.

I am thinking of working in between treatments and suppose it just depends how I feel. Hopefully have a better idea after Friday and the next week or so.

How long does everyone on average seem to be at the hospital for day of chemo? I have been told that it can take a while as bloods taken, see consultant, cold cap, injection etc. but not really sure how long that will all take. Might be nice to have an idea especially when got children to sort out after school.

Everyone take care.

Annie

system · 13 October 2009 16:44

Hello everyone,

I had my 2nd FEC last Thursday as an inpatient. I was home Friday night. I was still sick unfortunately so will need to go into hospital again for my 3rd installment at the end of the month.

I have been a lot better this time though but mum said I spent most of Saturday sleeping! The anti emetics played havoc with my guts so that wasn’t too pleasant and I had a rough night last night with tummy pain, but jelly, smash with ketchup and some great home cooking from my mum definately help. I have got a dodge throat today so I’m hoping its a side effect and not an infection

Hoping all you girlies are keeping warm on the sofa/beds and hiding away from those nasty bugs going around. Long may this process be over!!!

system · 13 October 2009 16:48

Hi Annie

Definitely go for cold cap - make sure it fits really tight, particularly on top. Wet the hair on top or put conditioner on it before cold cap - apparently it works better. Take small cushion to put round your neck - the hospital may give you one. And dress warmly! You’ll know by the second cycle if you are going to lose it. Mine’s still here although a bit thinner and I am about to hit my third cycle. I coloured mine the month before treatment but haven’t really touched it since - it’s so sensitive I only wash once per week, brush once a day, use sensitive shampoo and absolutely no products. Ok it looks an absolute mess but at least I still have it!

If you are having bloods, seeing consultant and doing cold cap all in one day then allow all day. I was in from 8.30 till 4pm last time - but the path lab did lose my bloods which delayed things a while. The first time I was out by 3.30. I am often the last one in the unit counting down the time till I can take the cap off. You need at least 3 hours with cold cap on, maybe more. Make sure you have someone to pick you up - you will definitely not want to drive home after all that - I was lightheaded and feeling sick by the time I went home. Get someone else to collect children if possible - you should be relaxing at home. The first few days are not a walk in the park so make sure you have some help. After a week you should be back on your feet. I have worked in between cycles - if you are like me you can write off the week after chemo (chemo brain means I can’t concentrate on work even if I am not feeling sick) but the following 10 days are absolutely fine, I’ve worked all the past 10 days.

Having said that, you might be completely different and either have no side effects at all and feel fine, or it knocks you out completely.

Good luck
Helen.

system · 13 October 2009 18:58

Hi ladies,
It is a week today since my first FEC and I am feeling better today now my thick head has more or less gone yay… I’m not sure if that was worse than the nausea which I was really lucky and only had mildly for about 3 days. However, I have now broken out in teenage acne which is only a little bit late now that I have turned 50. Very slight indigestion today, sandpaper mouth and that is honestly all the side effects I have had. I know there could be more to come but do feel I have been lucky so far. Hope it will be like this for the next 2.
I’m off to hospital tomorrow to have a heart scan, a muga scan, and blood test before. Guess they are just checking I am still alive.
Hair is not shedding yet but very greasy and limp, think the scissors are going to have to come out.
I decided against the cold cap and my first session of chemo with chat before and goodie bag only took around 2 hours. I have to have a blood test the day before and my onc appt is on a different day. I would expect the next session to only be around an hour. They told me if I wanted the cold cap to expect to be there for around 4 1/2 hours.
Hope you feel better soon Reemichick.
Take care and love to you all,
Jane

Loocie · 13 October 2009 19:24

Hiya, just making the most of the moment as i’m more asleep than awake.

Had 2nd FEC n And feeling do-able at the mo. PICC line went in ok And wasn’t too uncomfortable. bit tender now but that will pass. Got frozen to’ the bone so asked for heat pads which were lovely. IV Dex and Ondancetron did well n have had Metchlopromide b4 a boiled egg - which is still inside me! Hurrah

Ta for the heads up about buccastem - even tho it wasn’t obnoxious in the end - lol

tried to sleep but couldn’t so gonna turn out the light n listen to the Goon show. Keeping EVERYTHING crossed this carries on. Hope i havent hexed myself.

Hope those of you who are uncomfortable soon feel perkier; and for those that a facing the next round, that it is ok for you.

Nightee noo xxx

system · 13 October 2009 22:35

Helen

Thanks for your reply.

I had better go really prepared on Friday for first day. Getting lift to hospital from friend and they are going to come back for me later but don’t think either of us realised how long that may be. Been told to turn up for 10.30am so going off your experience will be late afternoon. Book, drinks, food - preparing checklist to take with me!!

Hair and cold cap - thanks for the advice about the cold cap. My hair is quite thick so hoping will not be too much of a noticeable loss. Not sure now whether to try colouring before I go on Friday, even if just do it myself so does not seem too bad.

I have organised the children for Friday thinking just in case I am a while and glad I did now. With treatments being on a Friday, means hubby will be around at weekend so not too bad there. Had thought about not working the week after chemo but maybe then the next two weeks so will have to see how I feel.

Thanks for the info. Hope all continues Ok for you.

Annie

system · 14 October 2009 02:38

Hi All you lovely chemo pals

I am on top of the world last two days as I feel almost normal again. Been shopping and interested in what I am buying - still having chronic memory loss but brain not quite so foggy.

Annie hope your first swamp goes ok - isn’t it worryng even not knowing how long it will all take - good that you have got some help with the kids as you will probably not be corpus mentus by the time you have got the cap off.

Glad to hear that some of us have still got hair! Mines like beetlejuice at moment but I wont cut the last lot off as I want to arrange a charity night for my darling hubby and anyone else who fancies it to get theirs shaved off along with me. Have been creative with scarves etc and ventured out last two days, building up my confidence.

Sounds from some ladies that so far 2nd chemo is a bit better than first - fingers crossed. I am seeing my onc tomorrow to see what he now has planned for me next week - hoping for a lowering from FEC 100 to 75 and new anti sicks - I’ll mention emend even though it doesn’t sound like it works for everyone. I have to have the tummy injections too - to build up the bone marow - on another thread I have heard you can get pain in the legs etc so will need to take painkillers - hope my temp does not go up again!!!

I asked about lines etc at last chemo and nurse said they try to avoid them unless really necessary! Also heard from another thread that apparently in France they do not flush them at all! This is all so confusing. I am going to enjoy the rest of this week and build myself up for no 2 on Tues. I am thinking of you all and hoping that we can all get through this together without the drama I had to endure last week.

I put on about 3 lb the first two weeks then lost it last week - think it was the hospital food lol. Really dont want to balloon as I lost over a stone from April to August, but I can recommend malteasers except I keep getting the big packs! My hubbie is on alert for the mad crying woman returning- if so i will try to just go to bed and hibernate.

Hugs to you all - we are a fab crowd - respect to those trying to work through this xxxxx Lynb

system · 14 October 2009 07:54

HI EVERYONE,
new to this forum. I am waiting to hear when my 1st chemo starts. Have seen oncologist and had blood test, assume it will be very soon. I have had a left mastectomy and lymph node removal. I will be having 3 FEC and 3 Tamoxefene. The anxiety of waiting for the 1st one is awful. I hope the reality to not as bad as I keep imagining at the moment.

system · 14 October 2009 14:24

Hi All,

Annie - just dittoing what Helen said. I go in for around 10am and leave at 4.45pm - that’s getting bloods done on same day, seeing Onc team before, having my Emend tab and waiting 1 hour and then the chemo. So I suppose it is the best part of a day.

Jane - looks like you have been fairly lucky with side effects, well done. Are muga scans always offered? - they haven’t mentioned this to me.

Loocie - you sound quite perky considering you have had the picc line to contend with and then chemo - keep it up. Hope your next few days are as side effect free as poss.

Lynb - made me laugh when i read your recommendation of maltesers. I had been telling everyone how I have been having a craving of all things carbohydratey, like endless belgian buns but my all time favourite sweets are maltesers and however nauseous I feel I can always manage to throw a few down my throat. I have got through two large bags in 4 days. The nausea is better today so don’t seem to be having those cravings - so its back to fruit and veg now!

Bhoonie - let us know when you get a date and hopefully we can all give you loads of support.

Lynn xx positive vibes to you all

system · 14 October 2009 15:44

Hey everyone!!

I’m new to this forum and I just wanted to say hi!!
Just went for my 2nd round of FEC today and i’m actually quite happy about it as i just want to get it over and done with.

Used the cold cap during the 1st round but it didn’t help as i had a major hair loss yesterday so i decided to go without it today. Time to get some cool hats/caps/wigs!! Any recommandations??

Side effects weren’t too bad the first time round as the anti sickness pills worked their magic!! I love them! My only major problem as a bad tummy which lasted from the 2nd week onwards. Anyone had this problem? Even chocolates gives me a tummyache! how bad it that?? i think that’s just a huge disaster! haha

I had a portacath put in and i would highly recommand it to everyone especially those with small veins. Nothing sticks out of the body so that would be more convenient in a way.

Take good care lovely ladies and all the best to all who will have their chemo juice soon. We can do it babes!!! It’ll be all over and done with in a jiffy!

Sylvia ;D

Loocie · 14 October 2009 16:39

Hi folks - Day 2 and still fighting the good fight without too much trauma. Can’t believe that I even managed to leave the sanctuary of my parents house to have some acupuncture. I so desperately don’t want to loose this feeling.

It is fascinating how we all get told different things isn’t it? I guess it keeps us on our toes, and gives us something to discuss with our various health care professionals - only trouble is it is SO confusing. Some concensus would be welcome!

How’s your planning going Annie? Hope you’re not feeling too overwhelmed by everything? When the going it tough please try and keep in the forefront of your mind that it will pass veru quickly and you’ll soon have some ‘normalish’ days - it is hard to do, but it is worth having keeping focussed upon.

Reemiechick - sounds like you’ve really been through it? Hope you’re soon feeling brighter and that the throat doean’t progress any further…miserable for ya!

Off to bed now for a nice early night with Dan Brown - well the book (Lost Sympbol) anyway!

Laters…and love
xxx

system · 14 October 2009 19:06

Hi All,

apologies to those who read the other thread as am posting same message here as well!!!

well, can’t quite believe it, but here I am one day post 2nd chemo, feeling pretty brilliant. Hard to think that at the same time last cyle I was hooked up to a drip in hospital. Hope I’m not speaking too soon though!

Had chemo at 10.30 - chemo nurse was male and poor thing could not get the canula in for love nor money. He was getting really agitated and I was trying not to scream each time the plastic hit where it shouldn’t. He has apparently been doing this for 12 years and has never had to call for assistance - I have some lovely bruises!! He called another nurse over who found a vein on the underside of my foream and got it in first time - girl power!! Then I asked to go to the toilet before he started. Well - I was feeling quite giddy as I’d had some lorazepam, went to the disabled toilet with drip in tow and on the way out because I was concentrating on manouvering my drip the fire door slammed into my head. I really thought that he would be able to see a ring of stars around it. I sat back down in chemo lounge, explained what I had done in case I passed out and then jokingly said to Brian (I think his name was) that if a bruise appeared I’d tell my hubby that he was getting so fed up trying to find a vein that he went for one in my head - suffice to say, he didn’t laugh.

‘Brian’ was actually very nice and very clued up. He said that I wouldn’t feel as bad this time as the first time your body has chemo all your organs go into a panic as it has never happened before, but 2nd time they’re like ‘oh here we go again’ and hence cope better.

I think, I’m feeling so much better as I feel I have more power over the meds. This is what I did.
8.30am - lorzepam
10.30 - chemo - through drip dexamethasone, cyclizine and ordansetron
1.00pm - home
2.00pm - cyclizine and domperidone
4.00pm - ordansetron
6.00pm - huge vomit (tmi)
7.00pm - cylcizine and domperidone
9.00pm - little vomit
10.00 - lorazepam

Fab sleep intil 8.00am this morning when I took ordansetron and dexamethasone, followed by cylcizine and domperidone at 10.30am. Well, it works for me even though I’m a rattling pill box!!!

Hoping this good feeling will last, I know that I will be very tired once stopping the dexamethasone, but tiredness I can cope with - just not vomiting. Is it likely I could go back to vomiting again???

Update on hair - well, it was going so patchy that poor old hubby shaved it for me - it was getting so sore. Am having great fun trying out head scarves, but no wig yet!!! Lady is coming on Friday - so that should be interesting as she is still expecting me to have some hair - hope she brings a nice selection.

Hi Sylvia and welcome (in a strange way!) . You sound very positive about everything which is great. When was the decision made about your portacath?? I had quite a traumatic time yesterday with my small veins and would rather not repeat the ‘hit and miss’ hour with the needle??? Haven’t had tummyache during the second week - only thoughts are that it could be constipation?? Good luck anyhow, we’re def chemo buddies as I am a day ahead of you on the old FEC - 2nd time for me too.

Hello Bboonie - you’ll get some excellent support and advice here through the old swamp - keep us posted!

Hi LynB - glad to hear you survived no. 2. I have to have the injections now so off to do the first one!

Hi to Loocie, Jane, Helen and anyone else I’ve missed,

love
Al
xx

Oh, if anyone fancies being friends on facebook (there’s quite a gathering of us on there now) you can find me under Alison Colenso (quite easy to search for me as I’m pretty unique!)

system · 15 October 2009 01:51

Hi All welcome to new posters

Al I have not had 2nd yet - weeks reprieve - next Tuesay is D day. Saw Dr Mark onc today - he had forgotten to lower the FEC strength but has now reduced the Epi by 20% - said it would still work. he has also added arrepitant (emend) to my cocktail without me prompting and reduced the steroids. Something for thrush and difflam for mouth. My drug/chemo chart is now coverd with cross outs and amendments but he took it through to the chemo nurses to change on the computer.
My insurance company will not give me a cash benefit for my NHS hospital stay as it was under 3 days so I feel like asking the PRU Bromley to send them the bill for my two nights care.
My onc does not think I will get neuropenic again but if I do he has told me to ring the 5th floor London Bridge Hospital (private) and they will have a room ready for me once I have been diagnosed/assesed locally (serves Aviva right - they will have to pay).

My cousins wife Julliette came round tonight and has stiched the inside of my wig to give it a tight fit and cut a more natural fringe in - looks and feels much better, just had a hot flush and did not remove it! I will post new pic soon.

I will go on FB Al and send you a friend request I am already FB friends with Loocie, Rachel and Foxy Sharon!
I am trying out Bowen Therapy on Friday to help with relaxation and helping the body to self-heal will let you know how I get on.

Hugs to you all Lynb xxxxxxxxxxxx

system · 15 October 2009 07:16

Good Morning to All!

Hope you’re all feeling good today!

Welcome to the new ladies & good luck with your FEC!..the first week after we all have a right old moan, but usually by the second week we’re all back to ourselves! It’s really not that bad and very doable…bet you’re all sick of the word ‘doable’ by now!! LOL

Well, day 14 & I’m now feeling almost 100% human…just have an annoying sinus infection to get shot of! I knew it was coming so made an appointment with the doc to get some antib’s…didn’t think to check my temp over the weekend, but thought I’d see what it was on the way out the door on Monday morning…37.8…WOOPS!!

Can you believe the Doctor asked why I hadn’t been taking paracetamol over the weekend to keep my temp down!!?..I had to explain the whole thing to him!!

Just as well they explain everything to you in detail before your Chemo or you’d be in trouble!!..and I’ll make sure I’ll check my temp in future!

Lynb…enjoy your week! I’m planning on making the most of now until next Thursday when I’m due my next jungle juice…eugh…don’t make me go!! I think the worst part is knowing that you’re going to feel crap for the next week!..not sure how I’m gonna drag myself back for another 6!! :o(

Good Luck to everyone having chemo this week…hope you’re SE’s are minimal!!

Hazel x