Hi
just talking to Lisa, I was amazed that people seem to get different treatment and just wondered how many drugs you come home with each time?
On epi i am given ondansetron anti sick, domperidone anti sick, dexamethasone steroids,ranitidine reflux tablets, sennoside laxatives, ciprofloxacin antibiotics (ready in case needed) and good old Difflam green glory mouthwash. So seven prescriptions and because I am on a trial I get them all free. Then I get Emla cream to numb the skin before going for my next treatment.
How does this compare? We should all be getting looked after. Lets do a survey so we know what to ask for if necessary.
Lily
Hiya
I’ve finished my chemo now - but when on it I was given - granisetron anti sick, domperidone anti sick, dexamethasone steroids, lanzaprasole heartburn tablets, movicol laxatives, ciprofloxacin antibiotics, corsodyl mouthwash and nyastin for oral thrush - 8 prescriptions in total. My very last chemo - which unfortunately resulted in extravasion of the drugs, I also got - hydroscortisone cream, something sulfoxide lol, a whole pile of gauze dressings and an ice pack ! All of these treatments have always been provided by the hospital pharmacy and have never had to pay prescription charges for them - thankfully !!
Margaret
the only drugs i got on my first chemo on wednesday was domperiome anti sicknes and steriods nothing else
Joanne
I’m on Epi-CMF and just had 3rd Epi last week. I get ondansetron and dexamethasone as pre-meds to take before leaving home for chemo, then when I come home I have ondansetron and domperidone anti-sickness, dexamethasone steroids, omeprazole anti-heartburn capsules, ciprofloxacin antibiotics and fluconazole anti-fungals to take routinely on days 8-14, Emla cream to numb the port area, but use the Senokot and mouthwash that I have in the house anyway. I’m being treated through BUPA who have covered all the medications.
Lyn xx
I can’t believe I’ve had to pay for all my drugs for home use. I took out an NHS pre-payment certificate at the beginning of treatment as suggested by the chemo department. Had a selection of ondansetron, dexamethasone, metoclopramide and lanzoprozale each time and during the course of the cycles also needed prescriptions for hydrocortisone cream, laxatives, suppositories, antibiotics and aqueous cream.
It seems we get really ripped off being treated in Brighton.
Sharon
I usually send most of the drugs back at the hospital pharmacy (if I don’t think I need them) and if there are items I need that can be bought more cheaply (than £6.85 or whatever it is now) elsewhere, I get them elsewhere, e.g. vitamin B6 (a couple of quid in holland & barrett).
Jenny.
When I had my chemo I was given free of charge steroids,one lot of anti sickness and mouthwash.
The only items I had to pay for where anti biotics.Iam treated in Knowsley
Mary
x
Hi,
This is just not fair that some people get so much less. Where I am being treated, my drugs are all free and handed to me but my friend attending the same place with BC, who is not on a trial pays for each one and has to queue to collect them. My hope is that people can use this thread to ask for specific drugs to help with side effects. Keep adding to the list.
Lily
Hi Lily
I am not on a trial Ihave just assumed that every one is given them free.When I had my chemo the nurse would always ask if I had run out of anything and give it.
Mary
x
I was treated in 2003 - all my take home drugs were brought to the Oncology Suite by a porter and I didn’t pay a cent. Had dexamethasone daily for 4 months (yes! as I had a Crohn’s flare), got granisetron and domperidone anti-emetics after each chemo treament, Corsodyl mouth wash and nystatin lozenges for thrush. I also had Fortijuice nutritional drinks delivered from the hospital pharmacy to my home as I couldn’t eat anything, not even home made soup with the solids sieved out - 9 different flavours, all yucky, which I lived on for 4 months. Perhaps they thought I may not live to get further treatment and it would save them money in the long term! Bit peeved I had to pay for incontinence pads though. Such a cynic. ! But…it worked.
Liz.
Hi guys
I get the mouth wash, omeprazole ( indigestion) mouth wash, horrible stuff to move my bowels ( prunes are better) dexamethsone ( which I take 3x a day as it kept me awake 2nd chemo around i took the 3rd one @2pm as I am awake at 5.30am, it worked last night as I slept until 6 this morning) & ondansetron. I get these at hospitial for free. I only pay for diazepam as hospitial will not give me it for some reason they are happy for me to get it from GP, I have a prepaid presciption for my asthma inhalers and don’t use the diazepan very often. Although I did have one last night before bed which may have also help me sleep better.
It is frustrating to hear the differences in medication payments also the differences in information given and intial waiting for results.
what can we do about it?
Maggie
Hi everyone
Glad to hear you’re up to posting Maggie, I know it knocked you for 6 last time. I was awake alot the 1st 2 nights - bl**dy steroids but took yesterday’s 2nd (last) one at 2 o’clock and slept much better.
I get dexamethasone (6 tabs - 2 per day for 3 days), ondansetron (up to 5 days, 2 tabs a day) and domperidone ( up to 10 days, 4 a day). All anti sickness and not being given anything else but also not having problems with any other side effects. All of these are free of charge and so far have been brought up to me on the ward so haven’t had to queue at the pharmacy. My hospital is in Hants, if this adds to the survey.
It is really odd that there is no standard set up for these drugs in terms of costs. I can’t believe some of us have to pay for these when others get them free and we’re not all given the non anti sickness tablets, especially the 1st time when we don’t know what we’ll need. We can always return them or say we don’t need them when we next go.
Nicky x
Hi Im on FEC and then TAX
I get anti sickness and injections via arm first before chemo then to take home the Ondanstron (for 2 days), steriods for 2 days, then domperidone (6 a day) for 5 days! These were ready when had my chemo but when had check up ten days in with Oncologist woman who works under my consultant she gave me antibiotics just in case and added down next time to get something for acid reflux!
Wierd how different people have different dosages, tablets, maybe its something to do with the type of chemo!??
Lisa
x
Hi
Is anyone else paying for their drugs? Check out above to compare your treatment with others.
Lily x
Hello,
I get ondansetron, dexamethasone, domperidone and cordosyl mouthwash all free of charge from the hospital.
I also got some anti-biotics and laxative prescribed by the oncologist and I did not have to pay a penny. I wonder why they do not give anything for mouth thrush in my hospital, maybe they think that the mouth wash will do the trick, but I cannot bare this horrible mouthwash, it is really yacky…!!! The taste in the mouth after chemo is really unbearable, I wonder if anyone knows anything to make it better!
xx
Carla
I have not started my chemo yet, but a friend who was at the chemo stage 2 years ago (and now on tax) say’s she pays a yearly charge which I think she said was £70 or £100 (can’t remember) which makes it cheaper for her than paying for each one, so from that I gather I will be paying for my perscriptions as we are both being treated in East Surrey.
At present I get steroids,anti sickness (which I haven’t needed - lucky me) and difflam mouthwash (which I couldn’t survive without). I don’t pay for any of these and get the impression that any medication required whilst I am having chemo will be free as long as I go to the hospital if I feel ill.
I didnt have to pay for any drugs (am in Hampshire) whilst on chemo. I got steroids /anti sickness/diarrohea tablets/constipation tabs plus GCSF injections. Whatever I asked for they gave me
Jools
Dunno really - but they’re good - especially the steroids! Am saving the anti sickness for my boat trip this summer!
I had FEC in 2006 and my TTA’s (anti-emetics, steroids, mouthwash, cream, abx when needed) were always sitting waiting in the chemo lounge, I was never asked to pay. A couple of times they decided to give me extra things and one of the chemo nurses popped over to the pharmacy to collect them. I am based in the Banffshire/Morayshire area of Scotland.