I have a copy of the letter issued to my GP by the chemo unit. It gives a list of possible problems along with what to prescribe.
Sore mouth
Difflam mouthwash would help with any soreness. Should oral thrush occur, Fluconazole 100mgs for 2 weeks is recommended. Should patient be unable to drink fluids and show signs of dehydration, then hospital admission is recommended.
Having said that, most people on other threads seem to use Cordosyl Daily mouthwash as a several times a day mouthwash, and Cordosyl Treatment, as a specific treatment when ulcers appear. Corsodyl helps prevent imfection. Difflam is more of an anaesthetic to dull any pain…
For cold sores and sore lips, lipbalms are recommended. There is one in a black tube called lip blaster or something that seems to be recommended most. Forgot its name for now. (Boots)
Zinc and copper tablets help with sore mouths, also pineapple, ice cream, mini magnums especially!!!
Hope that helps!
Linda xxx
thanks Linda, I use cordosyl mouthwash and toothpaste as a matter of coarse as dont have great gums so I am sure these are already helping. Thanks for the other tips, I also came across Nystatin on the feb thread so will see what doc says tomorrow
Hi Pauline You will be given a steroid tablet before your chemo goes in and then you will take steroids for a further 3 days on FEC-T. This will happen for the 1st 3 cycles of FEC-T and then on your 4th when you change to TAX you will take double the dose on the day before your cycle. Everyone reacts differently to steroids but the most common SE are being unable to sleep. lots fake energy and feeling a bit jittery. Once I stop taking them on day four I crash and burn and I either sleep all day or become very emotional.
Morning Angels. Fec-t cycle 1 day 3. Only things ive noticed are dry mouth, weak headache, hot feet at night and hot face today, tired eyes. Not too bad for now. No nausia, eating well and sleeping only if I go very late to bed. I think I take steroid in tablet form but don’t know which it is as there are no leaflets in the packet. All I know is a nurse told me to take these at tea time and not at night as it can keep me awake. Is tea time too late? Its called dexamethasone. I also have one steroid injection every day for 6 more days in the tummy and have asked the nurse to come before dinner. I too have become OCD about anything that looks remotely unclean including kids, hubby but they are being great with me.
Welcome all new Angels. xxx
Pauline Sorry to hear about your dad. Lv to your family love conquers everything. And thanks for starting AAAs don’t know what i would have done without you all mentally.
Diggy how did you get on??? hope your ok. xxxx
PrimroseHill try and take your last steroid no later than 2 or you will have problems sleeping.
Are you sure the injections you are having for 6 days are steroids and not white cell boosting injections?
Good afternoon Angels
Fec-t cycle 1, day 1
Hey, I got through it. Fantastic nurse called Stacy who got the cannula in first time. Still planning to have a picc line before next cycle. Had a little weep on the 3rd dose, but OH was there to hold my hand. Started at 12 and out by 1.30. Got a headache but cured with paracetamol. The nausea started at about 4p inspite of domeridom was violently ill at 9pm. The last time OH held the sick bowl for was the night before our wedding 23 years ago! Slept most of the night with a couple of hours listening to the radio. Fairly normal for me.
How did it go Mamakaz? Thinking of you.
Welcome to Christine and Maisiecake - sounds like we have similar symptoms and treatment plans so I’ll keep posting my experiences.
Dear Pauline thanks for all your encouragement. Xxx best wishes to all. Diggywiggy.
Primrosehill - like funkilala says I would not take your steroid post 2pm (do check with your nurses though) I took mine as directed at 6pm on 1st night and was awake all night! Phoned nurse and she said as long as I wasnt feeling sick then take the last one at 2pm i.e only 2 per day instead of 3. I have done this the last 2 days and slept quite well.
Diggywiggy - glad you got on ok although sorry to hear you were really sick - I feel so lucky so far that I haven’t really felt sick at all. We’ll see what happens when i stop the steroids and anti sickness tabs over next couple of days
Away to get ready to go to hospital to see my dad, looks like he’ll be in a few days. Will check in later
Thanks Funkilala Ive just asked the nurse giving my injections. Your right, the injections are not steroid but for increasing white cells. x
Pauline now I know its the tablets that are the steroids and I have four per day so I shall take the last 2 at 3pm and hopefully sleep tonight. I have other tabs which I guess are the antisickness drugs, two a day. I am the same as you a little concerned that when the tablets run out will feel really ill. I Finish my last one Sat morning (great just when Drs are closing) but will let you know. Hope your dads ok. x
Diggy, I am sorry to hear you were ill. I had Emend to stop the sickness before i went and have had 1 tab each day since although taken last one of those today. I am taking other tabs till Sat morning have no idea what there for but think more antisickness. I already have Emend in for my next cycle at home ready to take. I asked for all the antisickness tablets i could have but you may be on a different regime to me. Youre lucky they let your OH in. They only allow patients in our clinic. Hope your good now. xxx
Primrose - you really should make sure you know what all your tablets are called and what they are meant to treat. Don’t just take them without knowing - some meds react with others and if for example you need a simple paracetamol you need to know what else you are taking at the same time. Hope you don’t mind me saying this, but in the long run it will help you. xxxxx
On Tax my steroids are dexamethasone 2mg tablets. 4 in the morning and 4 in the afternoon for 3 days starting day before chemo, plus a blast at same time as chemo. My nurse said take afternoon ones between 2 and 3 at latest, and make sure they are 6 hours after the morning ones - so in my case I have had to get my bum out of bed a bit earlier than normal!
Everyone seems to be on different steroids/timescales as well even though they are on the same regime. I am on Dexamethasone starting day 2 for 9 days reducing every 3 so today was my last day, anyone any ideas why it varies maybe dependant on Health boards or oncologists. I also have 4 different anti sickness meds including Emend. My nurse told me to think of domperignone champampagne when taking one of my anti sickness tabs so that’s what I have!
will post properly later
Xxxxx
It does seem odd that we have different meds, but steroids are for helping prevent allergic reactions to the chemo AND to help with nausea. FEC makes you more sick than TAX, so with Tax you don’t need them once any danger of allergic reaction is over as you are unlikely to be nauseous, but with FEC you can be nauseous for quite a few days. Maybe that has someting to do with it. Who knows.
Well done Wendy!!! Day 3 for me and still feeling well, very very minimal s/e’s. No steroids today so who knows how I’ll feel tomorrow! Couldn’t agree more about the unit. Brilliant. Brill that there are 4 of us there at similar stages, and 3 of us on same regime and same stage. How’s the heartbeat?
Linda thank you and I truly don’t mind. So much information to take in and they didn’t let OH into the suite during chemo and when they gave me all the tablets. OH usually takes over as secretary for me on the tablet side while I take everthing else in). My tablets are Dexamethsone so at least I know what they are now. Expected Leaflets of what they were inside the box when I got home, but nothing just directions how many and when to take on the front. Anyone have Ondansetron to take (again box with no leaflet). Will get this sorted asap.
Thanks for all for your advice.xxxx
Well I am home after having my portacath fitted under GA, less than an hour in theatre and recovery and lunch an hour later so I’m quite happy! Just hope my chemo goes as well as ops seem to! I’m now being waited on by my OH as I lounge on the sofa under a quilt. Tomorrow I am having my hair cut and a few friends round for coffee before my brother arrives on Sunday for a few days…it’s all go here but expecting it to get quieter once chemo starts next Wed…
Hope you have all had a good day and that the sun shone
Kate
Hi Kate,
lucky you having a GA for the portacath. I asked about it and was told as it required the services of an anaethetist I would have to wait longer for it to be done, and this would delay chemo even longer, so I went for the local. It was fine. I had my first infusions Monday and Tuesday (herceptin then chemo) and it was wonderful. No pain at all.
I’ve been lucky, too, with my recoveries. I breezed through two surgeries and the port fitting, and also my first infusions. Waiting now for the bomb to drop!
I’m hoping to follow your lead Lola65! I didn’t have the option for local…strange how different hospitals and consultants do things so differently isn’t it! Have you been given some local anaesthetic cream to put on the port area before you go for chemo?
Hope you continue to feel well and the bomb never arrives!
Kate
x
Hi AAAs and sorry that Maisiecake, Karma Queen, Lnmcg and Mrs Piggy find yourselves here too, but you’ve come to the right place as I’ve found more useful info here than all my hospital visits combined!
Good to hear that most SEs sound a bit less scary than I’d anticipated, but I start cycle one of FecT tomorrow so don’t want to jinx anything…
Maisiecake, I celebrated my 19th wedding anniversary on Tuesday with picc line fitting! It was not really that bad - not painful, just a little bit sci fi and will make chemo much easier I think, as they’ve always struggled with my veins. I have even managed to have a long bath (albeit holding my arm out of water), but I think they prefer you to shower.
Pauline, I know how you feel about your dad as mine was diagnosed with malignant melanoma about the same time as my BC and has just come out of hospital - my mother has felt terribly torn about who she should be worrying about most. I hope yours gets home soon.
LNMcG, I totally understand and sympathise about the weeks of waiting, but according to most on this site it is the worst bit and once you are off the staring blocks it’s much easier to cope with. I was diagnosed at the end of Jan, had bilateral MX and ANC mid Feb and first chemo tomorrow, but felt at my lowest and most overwhelmed waiting for my chemo start date, so I hope you will feel better when they give you your plan.
One (possibly dim) question: does anyone know if the white cell boosting jabs that you do at home are steroids?
Hope everyone’s SEs subside and that we get the promised sunshine at the weekend xxx Katie xxx
Ps I’m trying the cold cap…
TCH Cycle 1 finished - one more box ticked!