October 2017 Chemo Starters

[Meesh73]

Hi Sam34 that's what I thought re: the cold cap. Didn't think I was going to bother with it but had all my long curls cut short last week and love it so much think I'll be more upset to lose it now! Not had short hair since I was 12. Also went for wig fitting on Friday in case it doesn't work or I can't bear it.

[Meesh73]

Thanks SueC, I went shopping today, bought ginger everything for nausea and sickness. Couldn't find any ginger drops though what make are they?  OH does all the washing so no worries about that (I'm such a lucky girl)! Just making some soup and I have a journal to keep notes. I've not been given any meds yet (apart from laxative sachets for afterwards as they mentioned they would give me ordansetron which can make you constipated?) is it normal not to have any meds beforehand?

[Sam34]

Hi meesh I start hormone therapy Wednesday and chemo Thursday,yes I'm having the cold cap ( worth a try ) xx

[Sue C]

Hi Meesh and welcome.

You can prepare in some ways. The first week is the most challenging time, so stock up on food, get the washing done, and have all your meds at hand that you may need. Then you can just sit back and rest. Let others look after you if possible.

The chemo goes in cycles, so if you keep a diary of how you feel for the first round, then it tends to follow a pattern for the rest. You may be able to work some of the time during the good weeks and you're find that out as you go along.

Best of luck for Tuesday.

Sue xx

[Meesh73]

Sam34, do you also start chemo Tuesday like me?

[Meesh73]

Hi sueW and sam34, not sure what I'll do about work yet. I'm going to see how I go, the BCN said I'll probably want to dip in and out of work and my employers are fully supportive. I'm lucky (or not depending on how you look at it) I can work from home so may just do that. Are either of you trying the cold cap?

[Sam34]

Hi meesh I've also been advised to stop work from Tuesday during chemo as I work with food and people,and to be honest I'd rather rest and get better I'm sure I'll be off work now till march next year! As I have to operation after chemo xx

[SueW]

So low not flow low autocorrect got me again lol

[SueW]

Hi meesh won’t say it’s nice to see you here because obviously you would rather not but welcome x yes you have posted correctly
I can’t carry on working as I work at a School and my consultant has said as my immunity will be flow low to continue working is to risky x

[Meesh73]

Hi everyone, I've never posted anything on a forum before, so I hope I've done this right! I hope those of you who started last week are starting to feel a bit better. I'm due to start 6x fec on Tuesday 3 Oct. very anxious, read September starters and sickness seems to the main problem, especially if you don't get the right Meds to take home. I just feel so unprepared. Is anyone planning to carry on working through their chemo?

[Chaffinch17]

I start Wednesday too but don't know what my drugs are yet. Seeing oncologist again on Tuesday. Have a few appointments this week. ECG at 9am tomorrow then talk and tour of the chemo unit. Onc on Tuesday then treatment Wednesday. Such a rock and roll life! Hopefully organized but having seen my dad go through chemo I am expecting the unexpected

[Sam34]

Thanks both Sues x

[Sue C]

Hi Sam

I had TC chemo which is different again I'm afraid, so can't really help you with that.

But I just wanted to say that there is no reason to be scared. It really won't be as bad as you think. Fatigue is probably one of the common things to have to deal with. And some suffer with sickness, but this can be medicated. Just prepare yourself for the first week eg stock up the fridge! And then just rest. After a week, you will start to feel yourself again.

Best wishes

Sue xx

[SueW]

Hi Sam can’t comment on yours Hun I not met chemo nurses yet
Ali glad your feeling a bit better
Patch I have got s thermometer but not opened it yet so not sure if it is any good though my friend a nurse did suggest I open it and take temperature every morning so I know what my normal running temperature is do to speak
The bottle is an infusion water bottle if you use that title for amazon search
But have seen them in Sainsbury’s and the range x

[Sam34]

Trastuzumad ( Herceptin )

Pertuzumad ( Perjeta )

Docetaxel ( Taxotere )

Carboplatin.....


Has any1 had this? It's all new to me and like I say I see a lot of women on Fec-T which is very confusing,I start chemo Wednesday and to be honest I'm getting really scared! I'm having chemo 1st then surgery xx

[Patchworkgirl]

Just had the District nurses take my temperature and my new not cheap digital thermometer is giving me wrong readings apparently,  their readings show normal, what thermometers can you recommend girls that appear accurate so far? Also realised I have been taking half the amount of my steroids per day as directed, told to ring the hospital to check with them, cant believe I have done that! 

[Patchworkgirl]

Thank you Jay68, another one to try! And will bear that in mind.

[Patchworkgirl]

Thank you Ali49.  I am 51 but still not menopausal as not gone the full 12 months so an operation to remove my ovaries is on the cards after.  Glad the mouth wash etc is helping you a little.  

[Ali49]

Hi SueW, i am feel8ng ok thanks. Nausea has gone so just the sore mouth. Have been rinsing with warm salt water to try to heal it Jay. Patchwork hope you get your temp sorted. How are you SueW? Sending everyone a hug xc

[Jay68]

Another good tip ladies - with the sore mouth try a simple salt water mouthwash. Also check to see if it could be oral thrush - lots of us ladies in the May 2017 suffered it and we were prescribed meds which helped but sadly didn't cure!

[Patchworkgirl]

Brilliant idea again SueW, yes we need easy but health food inside us.  

[Patchworkgirl]

Hi SueW that sounds ideal, never heard of these bottles before but I do have frozen berries in, can you buy them from Amazon? My temperature is going a bit high and glands under neck seem swollen so waiting to see what the District nurses thermometer says, mine wasnt cheap but yesterday the readings differed.  Glad to see you are getting prepared for your first session, good luck with it all x 

[SueW]

Morning Ali how you feeling today ? X

[Ali49]

Hi Patchwork, no i wasnt given mouthwash but i bought biontene mouthwash and toothpaste which is super gentle and helping. I was her2+3 so drfinite for me. I went into menopsuse early and at 50 have been period free for 5 years and my fish test showed this. Hope your gurgling tummy improves. Try some cool boiled water - it helps me a little xx

[SueW]

I bought soup maker too so I can have lots of vegetables x

[SueW]

Posted not payed autocorrect

[SueW]

Patchwork I think I payed this on another thread but I bought a water infusion bottle the one you fill with fruit and I put frozen berries in the tube so as it defrosts it puts a subtle flavour into the water
I don’t know if it helps with taste etc as not started my chemo yet but might be worth a try xx they are about a fiver

[Patchworkgirl]

Thanks for the info re the drug Ali49, I couldnt find much info on it.  have had my lumpectomy and sentinel lymph node biopsy (positive in one node) already as my HER status was initially negative.  When they removed the tumour, all 1.3 mm of it they always retest and some cells were borderline so it was sent for a Fish test.  They tried 3 times to do the Fish test but the sample wasnt good enough so it has all had to be repeated and still awaiting results which I should get when I see the oncoligist on 15 October.  They started chemo as if positive will give me Herceptin 4th chemo onwards and had heart echo scan which was ok.  Were you given mouthwas? I was sent home with some, my mouth still isnt too bad at moment but I am a few days behind.  My sleep is rubbish at moment.  Having gurgling tummy bit myself.  Hope you manage to enjoy some food today. 

[Ali49]

Nausea and gurgling tummy from 2am ish for me and my mouth is gross. I wish i could take my tongue out, scrape it and put it back! Took one of the spare anti sickness that sounds like Dom Perignon but its not! Permuzetab is the new drug for her2 that has been available since April. This drug is the reason why i am having neoadjevant chemo (before surgery) and not adjuvant (after surgery). Hope everyone is coping ok. Xx

[Patchworkgirl]

Thanks Jay68, someone else mentioned flat coke to me and I forgot to try it, thank you I will try it!  Yes ready for stewed apples today, looking forward to it, nausea has replaced the sickness but it is getting less...love the tips thank you! 

[Patchworkgirl]

Hi Reboot, glad to read you have improved at day 6, gives me hope.  They gave me a mouthwash at the hospital, a sore mouth isnt nice is it... Mine isnt too bad yet but 3 days behind you so it may come but I do use organic virgin coconut oil a lot for ailments even before cancer and as it isnt a strong coconut taste am still managing to swill it around my mouth as it is good for germs and is kind to any soreness.  I watched a you tube video of a cancer patient using it she said she had no mouth ulcers or mouth problems throughout her treatment and whereas you can take these things with a piece of salt using it a lot myself over the years esp with any soreness us ladies can get I did find it worked for me.  I give it to my 17 year old dog too, he loves it lol but the rest of my family wont touch it.  

[Patchworkgirl]

Hi Cassie, my taste buds havent as yet changed too much perhaps delayed with all the day 1 sickness I had, not too bad a metal taste in mouth either, hope today is a good day for you symptoms wise 

[Patchworkgirl]

Hi Ali49, I may be having Herceotin too my sample was borderline twice so has been sent for a Fish test, must google the permuzetab bit of your treatment not heard of that! Well sounds to me you are enjoying much tastier food than I am able to at the moment thats great!  My nausea is less now though myself, hope it continues, but my sleep is rubbish hence my early posting lol...good luck today

[Sue C]

Hi Ladies

Just popping in......

I suffered from tummy problems at times during chemo, and was told by the Dr that Lucazode is really good for replacing salt and sugar. Tasted good too.

I found mouth problems ( i called it furry tongue! )did appear round about day 6, but only lasted a few days.

Sending hugs

Sue xx

[Jay68]

Patchworkgirl - I suggested the stewed apple, give it a go - it really does work.

Another good idea is to pour some coke/pepsi into a glass and let it go flat - then at half hourly intervals sip a little very slowly. It helps to put back salts/sugars through being sick.

[Reboot]

I found Day 3 the worst to be honest, but I'm now on day 6 and felt back to normal this morning. My mouth's started to feel quite sore today so although my appetite's back, it's soft food for me 🙂

[WhyteFawn]

I've had a jacket potato and cheese. Couldn't taste the potato but cheese was ok. Especially with a smidgin of brown sauce on to add flavour.

Cassie x

[Ali49]

Patchwork i am having 3 FEC then 4 docetaxol with permuzetab and herceptin. They gave me 3 days of sntisickness and steroid tablets to bring home and 7 GCSF injections. They also gave me 7 days of anti sickness tabs in case i need them. Anyway just had potato waffles with eggs and beans, cooked by the hubby, and it was lovely xxx

[Patchworkgirl]

Cassie, strangely my taste buds havent gone awry yet,  surprised with all the vomiting, nausea and heartburn I have had...keeping it very plain and simple, dry toast, nibble on a rich tea biscuit, dry cracker and they all tasted as normal.  Cant drink anything with milk in, none of my usual cups of tea and warm drinks the thought makes my nausea worse so its plain water and some heavily diluted ginger squash. I do Fancy trying a spoonful of stewed apple later as someone suggested.  Hope you can find something to eat that tastes pretty normal soon x 

[Patchworkgirl]

Ali49, thats strange how we come home with different medications, are you on FEC full strength x 3 like me plus doxetaxal after x 3.  Fish & chips that did made me smile, aw hope you feel better soon. I am on plain toast, and a cracker at moment and still nauseous with heartburn 

[WhyteFawn]

Taste buds well and truly knackered! I love a slice of hot buttered toast. Just had one and it tasted of nothing! Very disappointed. Watching Saturday Kitchen and the Hairy Bikers got me feeling hungry but thought I'd better take it steady and stick with toast.

Cassie x

[Ali49]

No snti sickness injections patchwork just the gscf injections in my fridge. To be honest i felt like fish and chips last night but now realise it was a mistake!! Glad your sickness is subsiding xx

[Patchworkgirl]

So thoughtful thank you SueW, hug gratefully received..Day 3 for me and the violent sickness of Day 1 for me has subsided, still left nauseous, legs hurt and ache, thick headache wont go, and heartburn probably as unable to eat much but to be honest now the sickness has subsided I can put up with the rest.  I came home with anti sickness injections to store in the fridge only to be given by a nurse and they saved the day in my case or I would have ended up back to the asessment unit, as they give you a sheet with green, amber and red symptoms at the appointment talking over your chemo as I was just one sick off the red.  The Emend anti sickness tablets seem to be the best tablets to come home with but in my case they didnt stop my vomiting.  I guess I was just unlucky as I am reading so many arent sick at all so we are all different.  Good luck for next week, will follow your progress and support where I can....oh and my hair started to shed a little after Day one! 

[Patchworkgirl]

Aw no Ali49, glad the extra anti sickness helped a little in the early hours.  Did you come home with anti sickness injections to store in the fridge as they are only to be injected by a nurse?  My sickness was so bad on the afternoon of my chemo that I was sicking back the anti sickness tablets so I had to ring the out of hours district nurses who came at 10 pm to inject me with one.  I had been violently sick since 4.30 pm and one more time of sickness I was in the red zone on the paper they give you of symptoms to go back to the emergency assessment unit.  Yesterday I felt extremely nauseous but not sick.  I still have bad heartburn, not eating much at all, just want a nibble of plain things at the moment.  Hope you feel better as the day wears on, and you arent actually sick,  but the injections do seem stronger anti sickness meds.  I am Day 3.  

[SueW]

Hope you lovely ladies feel better today x I can’t offer any practical advice because I don’t start until next week but can send you a hug xx

[Ali49]

First rough night for me last night. Have felt nauseous all night. Took an extra anti sickness at 4am which helped a bit. Got a gurgling tummy and just feeling rough. Day 4 !

[Patchworkgirl]

I have got some epsom salts in so yes will use them, the aches in my legs were so bad last night I slept in my anti thrombotic stockings which helped.  Wasnt expecting leg aches with FEC.  Oh right, just normal symptoms then, what a learning curve it all is, thanks so much CK

[Patchworkgirl]

Brilliant ideas for me to try, thank you very much CK

[CK]

Get some Epsom salts for a soak in the barh for aches and pains Patchwork and a spray mist for face! Keep window open. Rosy cheeks is rhe norm even if no temp.xx

[CK]

Hi Patchwork
I had milk to sooth my hearburn but you could try Gaviscon?Half teaspoonful of Bicarbonate of soda in flass of water and lemon could help too! Made ne burp In fact days 3/4 first cycle I only had croissants, biscuits and milk! Water tasted awful so put slice of lemon in it! Murray mints! Ginger drops! Skittles! Chocolate Minstrels! Ginger biscuits! X