Has anyone had to pay for prescriptions as part of chemotherapy?

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Hi Ladies

Not sure if anayone out there can throw some light on this. I am about to go on the TACT2 trial and was advised by my clinical nurse that I will be subjuct to some costs for the oral Xeloda( Capecitabine) and any other medication I may need during this time.
She said if I lived in Wales or Scotland I would not be subjuct to this whick OK I understand but to me it looks like it is just my hospital down here in Brighton that are charging?!!
Is there anyone else who has had to pay for anything whilst having chemo?

Huge thanks

Paula x

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I was not on any trial, but I never had to pay for anything during chemo. Everything was provided by the hospital, including the steroids & anti-nausea drugs that I took home with me, and the Neulasta injections (to keep blood counts up) which I also took home for a district nurse to inject for me.

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Paula

I have never heard of anyone having to pay towards chemo especially when you are on the trial, I would check that out with the PCT if I were you!!!

Linda
x

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I have the paperwork infront of me and the BC nurse also said that any drugs you take home you are expected to pay for those…eekkkkk I am going to call her AGAIN…!!!

Thanks

P

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Hi Paula

I’m also in Brighton and will be joining Arm 4 of the TACT2 trial once an infection I’ve picked up has cleared. Like you, I was informed that I would have to pay for the drugs I take home. I was advised to get a pre-payment prescription plan to help cover the costs.

Interesting that Brighton are doing this.

Gill

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I am apalled that you are being charged for cancer treatment like roadrunner I come home with all my anti sickness drugs steroids and neulasta and I am not charged for any extra for it

post code lottery again!!!

Linda

x

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Hi ladies

I have just called the trial nurse at Brighton and yes Gill looks like you are right I have to pay towards my chemotherapy treatment that I take HOME…ie. this tablet called Capacitabine(Xeloda) and any anti-sickness or anti-diarrohea tablets I MAY need. Just disgusting…she said this was across the board and not just Brighton. Ohhh helloooooo where are you?? anyone else advised of this?

I have infront of me the info sheet saying I will pay a total of £54.80 or if I get the prescription prepayment certificate I will £26.85 for 3 months.

If I was out of the trial my standard NHS prescription costs are estimated at £47.95

What can I say!!!Is this just BRIGHTON???

Gill hope you get over infection soon.

P x

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Hi Paula,

Absolutely disgraceful! I live in Durham and was on the Tact2 trial. Accelerated Epi, followed by Capecitibine. I paid not a single penny for anything, whether I had it at the hospital, or brought it home. It came as quite a shock when I had to start paying for Tamoxifen :slight_smile:

I have no idea who administers these things, but had assumed that the trial ‘people’ would be providing the drugs free of charge to the NHS. Obviously not! So, not only are they wanting to use you as a test subject (trying to avoid the term guinea pig), but they want you to pay for the privilage? oooohhhh, blood boiling time!

Don’t know if it is just Brighton, but I have not heard of anyone I know (in various parts of the country) paying for chemo drugs on TACT2.

Good Luck with it Paula - just going to try and get my blood pressure down :))

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Hi Paula

It’s quite gobsmacking isn’t it. I remember when being told that I was surprised, but thought it would be the same everywhere. To now know that it’s not, really makes me cross. Grrrrrr …! I too would like to know if any other areas are doing the same.

Hopefully the infection will clear quickly but given it’s a serious one on my wound, I might have to have my implant removed thus delaying the chemo even further. It’s a pseudomonas and possibly was acquired via the hospital - perhaps when I had my sermoa drained? I don’t know, but I’m not happy about this at all. I should have started the TACT2 trial yesterday.

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Hi Paula,

I completed TACT2 last year. i paid for all my prescription drugs except for Capecitibine. As adviced paid for a prepayment cert, this helped with the cost a little. I thought that if you entered a trial the trial drugs were free, you wouldnt pay if you were having intravenous drugs given on the chemo ward.

Regards

Carole

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Hi

Thanks for the replies. Yes you would think being on a trail they would be free but I am really peeved of that my hospital have said no this is across the board and it looks to me like it isn’t. They said any drugs that are done on site |( hospital) are free but any that you go home with are classed as paying ones.

Carole where did you have your treatment?

Anyway just one less stress to let go of I think…!!!

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Paula - ring the nurse helpline on this site for advice.I’m sure they will know the answer to this or at least be able to put you in contact with someone from the TACT2 trial co-ordinators. That seems illegal to me to pay for a trial drug.
I was under the impression that trial drugs were free to the hospital undertaking the trial so they should not be making you pay for the xeloda.
I’ve always had to pay for all the antisickness/steroids tablets post and pre chemo but never for the chemo itself and I’m in Hampshire.
Good luck
Kate

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Hi

I am in London and wasn’t on a trial of any sort. The anti-nausea drugs, steroids, and mouthwash were all given to me at the hospital during chemo. Just before chemo they prescribed antibiotics for an infection which I paid for. But anything associated with chemo itself was free. Obviously I now pay for Arimidex.

Cheers

Dilys

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Right Ladies now I am confused…doesn’t take much these days !!!

I am reading the jargon they gave me on this Trial and in one paragraph its states that the comapny who manufactures GCSF will provide it to hospitals at a reduced rate for patients on the tact2 trial. All other treatments are part of the normal National Health Service care.

The National heath service research and development executive are paying for the extra nursing and admin costs incurred by the hospitals. However at some hospitals including the Royal Sussex County, patients who are liable for NHS prescription charges will be asked to pay these if they are allocated to receive treatment with oral Xeloda
( Capecitabine) and the oral Cyclophosphamide.

If you do not take part in TACT2 trial and have standard chemotherapy offered by this hospital your NHS presciptions for chemotherapy drugs are estimated at £47.95 in prescription fees.

So there we have it…what can I say…lost for words, I know its not alot of money but I am blown away at having to pay anything…!!! Must be this area and this PCT…

I am trying not to get stressed about it…not worth it in the big scheme of things.!!!

Hey ho…

Take care

P x

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GillianG

hi Hun, good luck with that infection, sounds nasty. Best get that sorted before chemo…

take care and rest

P x

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Thanks Paula! :slight_smile:

And thanks for addressing the issue regards paying for our drugs. I haven’t got the time or energy at the moment, but perhaps at some point in the future I will write to the PCT and question their decision to charge. It would be interesting to hear their answer!

Gill

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I’m not taking part in any trial. I have to pay for all the drugs I take home with me, steroids, anti-sickness, mouth-wash etc. I have a pre-payment certificate which helps. Charges for wigs also appear to vary depending on health authority. I live in Essex and was give £52.00 towards a wig whereas when my Mum had chemo at Christie’s in Manchester her wig was free.

Liza.

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I am absolutely discusted that any of you ladies will have to pay for any of your chemo or anti sickness drugs ect. I was on the Tact2 trial arm 4 and although i normaly pay for perscriptions from my Gp, i never had to pay for anything given to me from the hospital , all anti sickness, mouth washes, steriods, creams, heartburn meds, constipation meds were all given to me free. Im appalled that you are being asked to pay for any of these , and as for paying for the Xeloda well i think id pull out of the trial what a cheek. get in contact with your MP thats what id do. Im already upset that we have to pay for Tomoxifin because other less serious deseases get there perscriptions for free. This realy is unbelievable.
all the best
Lindiloo x

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I also got all steroids and anti sickness drugs free but I am over 60 so dont pay any prescription charges anyway.

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Hi Paula and Gill,
I am absolutely outraged that you have to pay for any drugs you take home. I was 58 yrs when dx with idc, had 6 x FEC chemo (including cyclophosphomide). All my anti-nausea drugs, steroids, mouthwashes, pastilles etc were given to me in the Oncology Suite to take home and I didn’t pay one penny. In addition, my Oncologist arranged for the hospital to deliver to my home, huge boxes of Fortijuice vitamin/mineral drinks (I took 3 cartons a day for 4 months), as I could not eat any solid food without being totally faecally incontinent. I was on a small daily dose of Decadron (a steroid) during my 4 months of chemo, because I had to stop my normal chemo for Crohn’s. This was provided by the hospital pharmacy too, foc. I was astonished though, that I had to pay for incontinence pads at the chemist! I was, and am, being treated at Derriford Hospital in Plymouth.

In addition, I got free volunteer car service each day for five and a half weeks when having rads. I still don’t understand why I didn’t have to pay, as the cancer patients in Devon have to pay £4.50 each way for the car service. I live in Cornwall, so perhaps Cornwall County Council help towards the costs. None of the drivers could answer my query. I also got a voucher up to £125 to take to a designated hairdresser/wig shop in Plymouth - the wig is lovely.

We are not poor, not on any social income benefits, although retired, but no questions were asked about our finances. I didn’t fill in any forms.

I am wondering if this is because the Primrose Breast Care Centre, where I am treated, is a Centre of Excellence? At the time of my dx in 2003 my bc nurse said it was only one of 6 centres of excellence in England.

I think it is entirely iniquitous that cancer patients have to pay for their life saving drugs, even with a pre-paid prescription. I bought an annual pre-payment certificate for some 35 yrs for my Crohn’s drugs (4 different daily drugs and one weekly injection) and the National Association of Colitis and Crohn’s are now lobbying hard to have these IBD diseases classified as incurably chronic, as is diabetes etc. I hope bcc and other cancer charities are lobbying the government also. As for the Welsh and Scottish Assemblies, I just do not get it. How are their patients, from whatever illness, more deserving than us in England. I believe it is not only unfair, but possibly illegal under the Human Rights Act. Shall we ask Cherie Blair to help, although she is possibly too busy writing her memoirs and on the US lecture circuit? Luckily, now being 63 yrs old, the only benefit I can think of in getting old, is free prescriptions.

Hope the bcc helpline may have some positive advice for you both.

Liz.