December 2016 Starters

[SALowery]

Is anyone private for their chemo or all NHS?

[Cookiepuss]

Sorry that was a bit long

Hi Belle - is Sue OK as I've not seen her post for a few days?

[Cookiepuss]

Agarside - I had my first cycle on 8 December.  The process for me was:

• Insertion of cannula into back of hand (I was advised to keep warm on the journey to the hospital but they also gave me a small hot water bottle on arrival to get my vein up). 
• Took some bloods and then put a drip into the cannula to keep the vein open whilst they prepped the FEC
• They got the FEC ready and gave me my first Emend tablet
• As soon as the blood test results came back (within 20 mins) they started the F, followed by the E (red stuff) and finally the C
• Once the C had finished they kept the drip in to flush through a full litre

The whole process took 2 and a half hours (I'm not coldcapping).  I think (but am not sure) they also pumped through some steroids at the same time (I will ask next time).

I was sent home with a bagful of drugs as follows:

2 x days of Emend (also known as Aprepitant) tablets to be taken every 24 hours - must take

3 x days worth of Dexamethasone (steroid for nausea and allergic reaction) - must take

7 x days worth of Domperidone (anti nausea) - must take

7 x days worth of Nystatin (anti-fungal) - must take

7 x days worth of Fluconazole (anti-fungal) - must take

3 x days worth of Lansoprazole (reduction of stomach acid) - must take and I had to get some more of these on prescription

"Just in case" were Granisetron tablets (for severe nausea and vomiting), Difflam Oral Rinse and Movicol.

I then went back the following day for my white blood cell boosting injection but they have said they will teach my husband to do this if he is up to it. 

I think the drugs list will change once the T bit starts as I have read that they give you steroids the day before you have this.

I must admit I was a bit "whoa steroids???" when they mentioned it but then thought with everything else that is being pumped into me it is probably the least of my worries.

I was advised to drink plenty of fluids(at least 2 litres) the day before (to help with the veins) and also to drink a few glasses before the chemo although they did provide me with water anyway.  Then to continue drinking 2 litres per day (3L if I was sick or had diarrohea) from then on.

Hope that helps.  I have my next one on 29 Dec as do several others on the thread so we will all be going through it together.

Snail -re the insertion of pictures I am typing this on my laptop and can see at the top of the box that I am typing there is a little icon of a mountain which when I put my mouse over it says "insert/edit image". 

[Belle]

Hi all,

Wanted to wish you all well as you start out. I started in June & finished in September. Not the easiest of times but the support you'll get from each other is second to none.

Rooner999 in answer to your question about vaginal dryness, oh yes, it happens! Especially for those of us who are ER+ve. Chemo can interfere with oestrogen production, stopping HRT will do it and later, hormone therapy (tamoxifen, anastrozole etc) will too. I can recommend Hylaofemme - used twice a week, comes with applicator, but other preparations are available. Try Sylk, Yes, or Pjur Med.

Hope that helps,
B x

[Daisy62]

Well I'm up late as been watching films... twiddling my hair and out it came! Looks like it'll have to be shaved tomorrow... will be 2 weeks Wednesday since first FEC ... was hoping to keep it till xmas but hey ho...

[Snail888]

Does anyone know how to post a picture to the forum?

[SALowery]

I've just looked it up and it's to with the Docetaxel that you have steroids something to do with allergic reaction and water retention!!!!

Hope I haven't freaked you out xxx

[Snail888]

Yes you will have a dexamethasone injection and some to take for 2 days after chemo. I also take my afternoon sickness whether I feel.feel sick or not. It was tip I learnt with dad becasue if you do suddenly get nausea you may not get the tablets down. I'm a wuss so prefer to take the tablets than find out if I'm going to feel unwell. I take a note book and write down everything they tell me to do because I don't think I'd remember otherwise. My next one (third) is 28th so we will all be in this together! Xx

[Snail888]

I think it takes about 30 minutes to go through the 3 drugs. I haven't timed it directly and im quite big so I have quite a lot to put in. The epirubicin goes first so that the vein is in good condition. This is the red one and it turns your pee red. Then I think they do cyclophosphamide and the the 5fu. Then they do steroids and antisickness. I then try and keep my main drip up for 30 minutes to flush everything through the vein. Depends on how much I has before how much I need to pee (it's a bit of a pain waddling to the loo with the drip) and how sleepy I am. Once that's done the canula comes out and if cold capping you have to wear it for about 90 minutes. This is where I generally go to sleep.
I really feel for you regards date changes it can be unsettling. Keep asking them the questions and they should give you paperwork for bloods for the next round and a date before your leave.
Hope that all helps you xx

[Agarside]

Hi SALowery,

Steriods??  Nobody has mentioned anything about them....  Is this normal for FEC-T?

I have Emend anti sickness to take.

Amanda

x

[SALowery]

Hi Agerside

I have my 1st Fec-t on the 8th December, I was given my anti sickness stuff through my cannula along with my steroids... it all took about 1 1/2 hours in total, didn't feel ill whilst having it, the only good advice I can give is drink plenty of water the day before helps with veins if your more hydrated, haven't heard anything about coffee but have gone right off it since I started the chemo (strange)

I was sent home with anti sickness tablets which luckily I never needed and 2 days worth of steroids

I'm glad you have a date and please try not to worry (easier said than done I know) but we will all be here for you xxxx

[Agarside]

Hi All,

Attended my pre assessment, ready to start my FEC-T on 29th Dec.  Not quite the warm and fuzzy experience I was hoping for, as my first cycle date had not been changed on the system, that we had negotiated last week.  So I was expected to move all my plans.... er no.  Ironically they found me my appointment when I said "I won't bother with the chemo" if they couldnt find a time slot for me.

So I am having a venflon/canular inserted then the bolus FEC, and is quite quick to administer - would be grateful if you could confirm this 🙂

Have been given conflicting info on drinking coffee, one says it interferes with chemo, one says it is because of dehydration and one says caffeine free is ok and part of your 2 litres....

Handed my anti sickness tablets and told to take them.  

Take care all

A

xx

[Cookiepuss]

I'm not sure about the fasting either.  My thoughts are that if I don't feel well enough to eat much after the chemo then I would rather "stock up" beforehand to tide me over.  If I miss meals then I feel sick and headachey.

Supertrouper - yes, they do seem to be making advances in treatment which can only be good news for everyone.  Hopefully there will be a day in the not too distant future when everyone will have a vaccination or similar to prevent all types of cancer.

My head is very itchy and yesterday it felt like someone had pulled my hair really hard - very sensitive scalp.  I am not coldcapping so expect it to start parting company fairly soon-I was told it is usually about week 5 after the first treatment.

[Snail888]

Wmj
I agree it's a pain with the crowds. We are lucky have a huge m and s which is open until 10 and dead after 7 so ill sneak up there later in the week.
My head has done various things
Burning
Crawling sensations
Itchy
Sunburnt feeling
Stinging
But my hair pretty much is still there. I was once a week so after chemo day it's left for 6 days before washing in organic shampoo and a very gentle combing with a wife tooth comb and that's it for 7 days.
I bought really cheap silky pillow cases and wear a little cap to stop any rubbing. Just like a faberge egg
I did hear some people lose very little even with the cap so we will see.
I'll try to put a pick up
I've done 2 x fec so far
Xx

[WMJ]

Hi All,

I too have been out all day wearing a face mask and gloves... Hospital then waitrose.....Don't care how I look as long as I don't pick anything up. Doubt I will be going out again for a while though, it is a good excuse not to have to do that mad last minute shopping I do year after year. I am calling that a positive the reason why is not quite so positive!

I am also starting to feel more like myself, but scared to say too much incase I tempt fate, plus still getting little funny feelings in my head/hair and as I am on day 12 of E&C, I guess my hair may soon start shedding 😞 Don't know how everyone else is about their hair/head but I am treating mine like it is a limited edition faberge egg. I don't want to touch it, not too keen on washing it and when I do I am so so sooo gentle with the shampoo & conditioner & further more I don't even want to look at it. 

Hope you all have a good evening.

XX

[SALowery]

Alieck

Thank you I feel so much better today, feel like myself 1st day with no headache today yay!!!

Snail888

Sod them at least you will be germ free 😜

Stay well everyone xxx

[Snail888]

Currently out at the shops. Face mask on weird looks a plenty. Hey its christmas 🙂 xx

[Alieck]

Hi Sara, I know what you mean about everyone asking how you are. I am usually very positive but get fed up saying what side effect it is today. Hope you are improving every day. xx

[Alieck]

Hi snail888, thank you for your message. I have been two lots of mouth wash nod they are working. Feeling a bit better today. How are you getting on? xxx

[supertrouper]

Cookiepuss - my first chemo was 4 x EC and then 4 x Taxotere followed by Letrozole tablets for the following 4 + years.  I was one of the unlucky ones to get a reoccurance.  Out of the 12 girls in our "starting chemo" group - three of us went on to develop secondaries.  Very scary to think about but not as bad as you think it will be.  There are so many weapons in our oncologists armouries these days - and every week there seems to be something new popping up.

[WMJ]

Yes read the research on fasting and understood how it could be useful. Some info on the forum too. No not suggested by anyone, as such.  However I discussed it with my Onc, who knew about the research and was happy for me to give it a go. Nobody ought to be fasting without prior discussion with their Onc or BCN. 

Good luck with the pre-assessment & I understand what you mean about not wanting it but at the same time just wanting to get on with it and getting it started. I felt the same but then like us all the enormity of it all hits me hard from time to time. 

Sweet dreams to us all. X

[Snail888]

I agree it was nice to see the ward in flow and actually how comfortable people were. My ward is very small 6 chairs but we're my dad went was 30 chairs and less intimate.

[SALowery]

Hi Amanda

I also had the sister on the chemo unit go through everything with me, they have a bit of a tick list to go through and it covered most of what I needed to know, if you have any questions make sure you write them down because your mind can go blank, it was abit scary seeing people having their chemo whilst I was there but also good too see that that aren't writhing around in pain!!!! Good luck

Not sure about the fasting have you read this or was you advised by the doctors!!!! I have about cutting down in sugar!!!

Today's been a good day felt like myself for the 1st time since my 1st chemo so trying to hold on to this especially till Xmas and my next one.

[Snail888]

Hi amanda
My pre assessment was about an hour long where the senior chemo nurse went through every single thing ever side effect but also some useful things like bringing something warm to wear if cold capping and a towel for wetting hair. I had a very long list of questions and she went through every one with me. She talked about the emergency number and showed me around the ward. Compared to my experience with my dad who had none of this is was great. It was good to meet the other nurses, try the cold cap on and answer the questions I had. Xx

[Snail888]

I wore my mask for my entire ct visit. I also separated myself from the hoards in the waiting room and sat in a little changing cubicle with the door open. Some dettol wipes or sprays are always good. Hopefully the time will pass quickly.
I'm not sure about fasting. I actually find I naturally eat very little after treatment and what I do eat tends to be meat free mostly peas and sweet potato mash. I think a little of what you fancy can't be a bad thing. Not sure I could go 2 days without eating! Good luck tomorrow x

[Agarside]

Tomorrow is my pre assessment or "Intro to chemo", not sure what to expect.

Have my folder with paperwork and a note book.

Time to get prepared and get used to it.

Part of me is wanted to get started whilst the other part is dreading starting...

Amanda

xx

[WMJ]

I fasted 24hrs prior, day of and 24hr post chemo Andreaj. I actually think it has helped and intend to do it again, although clearly haven't a comparison. My main concern is the feeling of nausea I get sometimes and I just have a biscuit or something for it, clearly I can't do this whilst fasting. 

Thanks for the good luck for tomorrow. What I am most concerned about at the moment is being with all those germs for the day, I will be wearing mask & gloves. I live around 40 miles from the hospital so can't return home whilst the dye does its thing for 3 hours, which is a pain.Then could be an hour for the scan.  Need to take all my food, drinks, medication etc. It reminds me of taking out the baby. I am hoping it is dry so we can go for a walk, so also hoping I feel okay too!  Guess I will be shattered by the time I get home tomorrow evening. 

All my nearest and dearest seem to have colds at the moment, so can't visit. There is only me & the hubby at home and thankfully he is germ free. XX

[Andreaj]

Hi All well the Duaracell Bunny is gone leaving me with a doozy of a headache, think I had been very fortunate til now as I had just had mild headaches here and there.. well they caught up with me today and HOW! Im guessing its the withdrawal from overprescription of steriods but at least I can sleep now and my painful stomach and constipation has eased off at long last.

Can hardly beleive its a week to christmas, I keep getting this feeling of panic that I havent done things because I still feel like christmas is my job 😉 or something, my kids are in their 20's and have thier own homes but I still feel I should be breaking out everything cooking hostesssssing and so on.. I have to learn to accept they can sort themselves out, and the shops are only shut for two days ...kicks self repeatedly!!

I see the onco consultant tommorow in the afternoon, I feel so nervous about it yet there is no reason to be,  its just a monthly consult re the first chemo I think yet Im still secretly fretting.

Robin J I can understand your feeling anxious with your dates being changed, one of the things that threw me while I was going through this whole process of getting to treatment was when I was told something would happen and they it was put back, that happened three times to me and it really pushed my stress button.  Once the chemo was underway it was no breaze but you kind of feel ok now we are doing real stuff.  My BCN reminded me more than once that a week here or there is actually nothing in the scale of things but it is very hard to beleive that when you are waiting, X

WMJ good luck with the bone scan .. fingers crossed the results are rapid and its good news too

SuperTrooper glad you found this group, Im working on the living in the now thing sounds like excellent advice. 

Anyone else working on changing thier diet to attack the cancer?  Im going to go back to very low carb eating for part of the month and fasting prior to chemo.

[Cookiepuss]

Runninggirl - so pleased to hear you enjoyed a night out and a walk.  It's those things that make us feel "normal" rather than a cancer patient. 

I'm a bit worried that the good days are a blip or that the reason I am feeling better than expected is because the chemo is not working. 

Supertrouper - you are on different chemo to most of us which I assume is because you have had a recurrence.  Just out of interest were you on Tamoxifen (or similar) the last time as I thought this was given to reduce that risk although I guess it's not 100% guaranteed.

Robin - I wonder if they have delayed the start of your treatment because of the Xmas period and it would mean that there is just not the staffing in that period. 

I have no idea how long I have had my tumours - I had a mammogram in Feb this year which was clear BUT they did another mammogram after they put some markers in and I asked the radiographer to point them out to me and due to the density of the tissue they can't actually be seen on the mammogram AT ALL, only on the ultrasound which is quite scary really.

[supertrouper]

I decided to go ahead with starting the chemo.  Left the unit with a carrier bag of various tablets which have to be taken for 14 days then a break of 7 days.  Very pretty pink tablets that are just taken once a week, and again more pink ones that are taken daily.  The very pretty ones made me feel sick within a couple of hours of taking them.  I had been given anti sickness tablets but hadn't taken any.  Silly me!   Side effects so far, apart from the first day of nausea have been minimal - but I am thinking that it will take a while for the drugs to build up inside me.  The list of side effects on the information sheets is very long.  One drug (Navelbine) list hair thinning/hair loss as one.  I lost all my hair the first time I went through Chemo and found this one of the worst things about the whole journey.   It was a big shock to find the cancer has returned - but I do not and will not despair or give up.  Not going to mention the "think positive" stuff that everyone spouts out when they hear you have cancer!  All I will say is just stay mindfull - and in the "now" - don't let your mind wander off into the future - all that matters is right now, and for now, we will cope!

[WMJ]

Rooner999 maybe try KY Jelly, or better still ask your BC Nurse.

That sounds unpleasant and uncomfortable indeed.       

Day 11 of cycle 1.

Hope you are all well Ladies,

I too have had headaches on a frequent basis.....I usually wake up with one. On the positive side they are not as bad as they were last week.

Yesterday got quite upset as had funny tingles in my hair/head which I suspect is a signal that my hair will fall.  

Sorry to hear about those of you who have the added stress of genetic testing.

I have my bone scan tomorrow, more waiting for answers!  

take care x

[Running girl 53]

Hi RobinJ.
I'm no expert just learning like everyone else but just wanted to say I can understand your concern but as you say i'm sure they would not delay if it was unwise. I have felt like this at times throughout my diagnostic period (3 weeks between initial diagnosis and meeting my breast surgeon for treatment plan). If I was you I would enjoy your Christmas feeling well and doing normal stuff. You have a date for January and you now know your treatment timescale. Plan for that it will soon come round just enjoy this couple of weeks. Xxx

[Snail888]

Robin j if it's any help here is my time line
July doctors referal went away for 3 weeks
15th August emergency clinic and biopsy
Went away again
Biopsy result 28th August
Surgery 29th September
First chemo 14th November
I was grade 3 with no nodes but large at 3.6mm
Certain delays are not always a clinical issue and im sure your oncologist would have dealt with it if need be.
I'm a November starter but find this group very supportive so I'm hanging about on both xx

[Running girl 53]

Well. My husbands Christmas party last night at a lovely hotel so made a weekend of it. Stayed up till 1am! Lovely country walk this morning after a hearty breakfast. I feel Normal! Hurrah for that. I don't take any good days for granted and get as much as I can out of them. Hope all you ladies are feeling well. Sending positive vibes to all. Xx

[RobinJ]

I probably should be posting this somewhere else but I just feel like this is the group I 'know' best and I value your cyber support!

Just want to say that I can't stop feeling disappointed that my chemo start date has been postponed till January 4th (from December 14th).  This is because they needed to do an MRI scan and then with Christmas and everything it just got pushed on.  I keep telling myself that the oncologist wouldn't have postponed it unless it was safe to do so, and everyone around me keeps trying to reassure me.  But the delay has made me anxious where I wasn't before.

That's all really.  Just wanted to share.

[Rooner999]

Ladies .. not the easiest of Q's but needs to be asked.  Has anyone suffered from vaginal dryness?  I seem to have it all the time and its realy uncomfortable, is there anything that anyone has been recommended to use?  Thanks.

On the whole, the first 10 days have gone well.  Only one day I can say that I wanted to end it all!  I have had most of the symptoms but in dribs and drabs, bad back ache today for some reason but finished the dreaded GSCF injections yesterday so thats a bonus.

Checking my pillow/brush/shower plug daily to see if anything shedding but no movement so far.  My hair is pretty thick (although now cut short) so hoping that might help.

My other half reads the forum everyday, and I have to say that it has been a massive support from him, I think partners can often get lost in the process as its just as hard, if not harder sometimes on them. 

[SALowery]

Ok so hopefully they will ease xx

[Snail888]

Sal
I had awful.headaches after round 1. Drank 4 litres of water a day and nothing helped it. Not had any after second round. Wonder if it's the body adjusting?

[Cookiepuss]

Yes to the headaches - I usually wake up with a horrible headache but today is the first day I was OK and didn't have to take any painkillers.

[SALowery]

Does anybody suffer from headaches?

Andrea awful to be taking too many meds!!! But bonus the house is clean.

I struggled today just taking the dogs out for a walk but the fresh air was good.

Think I have learned that people don't actually want the truth about how I feel so I might have to spout it all out in here.

Have a good evening all hope 2mrw is better for us all xx

[Cookiepuss]

Sara - how lovely of your daughter to cut her hair in sympathy especially as it seems to be the in thing for girls of that age to all have long flowing locks.

Snail - are you cold capping?  I asked my consultant if the cold capping would have any effect on the chemo and his response was that there is a 1% chance of mets occurring in the skull and a 50% chance I would lose my hair anyway so I decided not to bother.

I can definitely recommend the Corsodyl mouth wash for general daily use.  I also got prescribed some mouth drops and some tablets for oral thrush.  I have got a huge ulcer on the inside of my cheek but I am not sure if the toasted cheese sandwich I had earlier was the cause of that

Andrea - that is terrible that they messed up the dosage of your medication.  You trust them to give you exactly what you need and follow their instructions.  I would not be a happy bunny.

I got a list of each drugs and details of how long I should take them for and when.  They even numbered the boxes for me to match the list to avoid confusion. My OH then produced a spreadsheet so that I can cross each one off as I take it.

Not feeling too bad today - scalp is very tender in places like someone has yanked my hair hard.

Energy levels pretty good - I was half tempted to do my normal Saturday morning training session; the only thing that stopped me was that I feel like I need to keep clear of people for the next few days as this is when white blood cell levels are very low and I don't want to risk getting an infection.

Hope everyone has a nice evening whatever you have planned.

[Snail888]

I only have dexamethasone for 2 days after fec 1 tablet.3 times. Have they told you to come.off them gradually? Good call to phone hospital. All the medications and things can be very confusing. I have a print out and tick them off that I made myself because it was getting confusing. I also carry a lost of medications and emergency number with me when I go out. Wish I'd felt like cleaning the house today's efforts have left me zonked xx

[Andreaj]

Fec 1st round day 8

well an interesting time here.  In the past 48 hours I had been improving well and was really pleased at the way I had energy but as time went on I realised I was actually not able to rest of stop I felt utterly wired and sahkey and couldnt stop cleaning or doing just anything. Sleep was impossible and I had this singing in my ears like tinitus.  Looking back I should have realised that it was the steriods but I just had no idea.

My reaction to stress can be to clean like crazy so I thought this was me dealing with the emotional stuff and my body bouncing back after going so slow for so long...

Last night I was literelly up all night cleaning the house having been moving furniture etc all day the day before because I simply couldnt settle or even contemplate rest or sleep. At half six this morning I phoned the hospital as I felt desperate and pretty much off my head.

Turns out I have been overprescribed steroids, my dose was double what it should have been plus they were meant to have stopped after 5 days while my pills said nothing about stopping and in fact they gave me enough to take them constantly, the sheet I was given with meds said to take three a day with no mention of stopping.

Im pretty annoyed and shakey today and am expecting some kind of crash feel really hazey wobbly and my ears are singing like mad eyes bleary, hubby says I should kick up about it but I just want to settle now Im too shaken to do anything else.

On the plus side its amazing how sparkling clean your house can be if you have a manic duracell cleaning bunny in your house who cant go out for a day or two lol

[Snail888]

The truth is we have rubbish days and I'm not sure when people ask that's what they want to hear. Do I say actually I feel awful I've tried to do some housework but it's left me breathless and clammy and I just want a big juicy bacon and cheese burger but don't want to eat out becasue I might catch something? Nah they don't want to hear that, glad I can say it here xx

[SALowery]

Alieck I feel for you and I'm dreading my next round too... everyone asks how I am but they don't really want to know!!!! Keep strong big hugs

Sara xx

[Snail888]

Alleck sorry to hear about the rough ride. Have you been given special mouth wash? Big hugs xx

[Alieck]

I had TCH chemo on the 9th. Not too bad for the first couple of days but Monday/Tuesday was awful with the metallic taste. I am having the injections also - last one tomorrow. Felt better thursday but by Friday I had blurred vision and a fungal infection and swollen tongue/ulcers. Have to admit that it was a bad day yesterday as I felt very emotional. Today a bit better but have to admit that I am not looking forward to going through this again and again but t s an end to a means. Hopefully things will pick up in the next couple of days and everyone else is getting better even if it is a bit at a time. xx

[claire36]

Sara Sorry to hear you have to wait for genetic tests. My friends recently had this due to her TN BC but her results were negative let's hope yours will be too.
Snail 88 Great news you haven't lost much hair. I hope I can hold onto some too.
Xx

[SALowery]

I've also got to go for genetic tests as my breat cancer is triple negative which means it's caused by a faulty gene, I'm hoping to god that this is not something I will pass on to my daughter (feeling devastated)

I decided not to go for the cold cap foolishly or not I didn't think I could cope with that too... will be interesting to see how it goes claire36

I'm trying to stay positive but very hard when anyone asks I just find myself saying I'm fine!!!!!

[Snail888]

Hi sara
I also had the wooly head and swollen nodes in my neck but no headaches this time round.
Are you cold capping? I've not lost much hair after 2 rounds of fec so hoping some hangs about
X