Results not good

Hi

As some of you may be aware I was on a trial for triple negative breast cancer which was comparing Xeloda to Sutent - the Xeloda worked for 6 or 7 months but unfortunately the sutent only worked for 14 weeks. I say unfortunately but to be honest it has made me completely loose my appetite and all the taste buds on my tongue are gone so anything I do try and eat tastes like cardboard.

Anyway I’m now getting a hickman line put in and have to go back onto chemo. My onc just came back from the conference in Florida where there was presentation on triple negative and the fact that using Carboplatin along with Gemcitabine appeared to work well in TNBC - I can only hope.

I wondered of anybody else with TNBC had had this combination if so how long did it work for and where the side effects manageable?

Lastly, can anyone tell me the current state of play in England please regarding free prescriptions for cancer patients and the allowance to top up buying drugs with your own money. I live in Scotland and would like to get my facts right about what is happenting South of the border before I write to the health minister again and perhaps contact a paper as I feel Scotland is falling behind on these matters.

Thanks

Diane

Diane

Really sorry to hear about the sutent.

I had carboplatin and gemcitibine for 6 cycles Jan-May 2008. I had both drugs on Day 1 and then was supposed to have gemzar alone on Day 8. I only managed two Day 8s as it was hard on my bloods and was having delayed treatments even with neulasta. After 6 cycles my tumours in neck, chest wall etc were exactly the same size but grew again immediately I stopped.

As you know I am also triple negative. After gem/carbo I did 8 weekly taxol and 3 and a half cycles of vinorelbine. Got increase in tumour size on both. I have now stopped chemotherapy as no serious options left. I am probably going to the Marsden to discuss if there are any suitable PARP inhibitor trials.

My oncologist says regional tumours notoriously difficult to treat and chemo may be more successful on liver and lung mets.

Prescriptions for cancer patients are free in England and I am pretty sure the top up payments are now operating but don’t know the system.

best wishes

Jane

Hi Diane

Sorry to hear that your treatment has stopped working for you - it’s very hard, as I know at the moment, to be between treatments.

I’m not triple neg and haven’t had gem or carboplatin, so can’t help with that one, I’m afraid.

In terms of free prescriptions in England, that came into effect on the 1st April. It covers all people with cancer - both those currently receiving treatment and those who still need treatment because of the cancer effects (hope that makes sense). You get a 5 year exemption card and that covers all prescription charges (not just those that are cancer related).

Debsincornwall is the expert on top up fees - I’m not sure quite how it works in practice. The principle is that the NHS should not withdraw services because someone chooses to pay for additional treatment privately. So they need to continue to provide all treatment that would have been provided anyway but they don’t have to incur additional costs relating to what is being provided privately. SO if you were having taxol and avastin, the taxol would be provided on the NHS but not the avastin (and not the additional tests that you have to have eg kidney monitoring, because of the avastin). Things like scans would also continue to be paid for because they would have happened anyway irrespective of the avastin.

Hope that helps - and good luck with your next treatment. K xx

Hi Diane,
I don’t believe it I have just done a ucking long post and it has gone. Sent it went to read it saw Jane and Kay and mine has disapeared how I wish I could do the same with all our cancers for us.

Really sorry to hear the trial has not worked for you. It is so frustrating that at a time we should be able to enjoy what we have left of this life we have to spend so much time on research.

Re co-payment.
We are allowed to pay for the extra drug that the PCT will not fund but this can cause problems and you need to make sure you don’t get billed for things that are covered by NHS
A) taxol takes 1 hour pam 1hr 30 mins avastin half hour so you would only be charged for the nurse cover for the half hour
B) any tests that are unique to drug such as urine, blood tests are done for the other drugs
C) have treatment in main chemo unit not side room

Prescriptions have been free for all cancer patients since April.

Re publicity get in touch with Graham I am sure he will help I have his number if you need it.

I have not had the chemo combo but I think that has been dealt with by that others.

Sorry this post does not read as well as the one I lost. This new site tends to have the knack of making things vanish!

Love Debsxxx

Hi Diane

I am triple negative, and when rediagnosed with regional reccurance to nodes under arm in Oct last year they put me on carboplatin alone. It didn’t work, and the disease progressed to incurable by 2 cycles / end December.

Of course as with all of the convulutions of cancer, what doesn’t work for some, works well for others. I wish you luck

Nikki

Thanks for your comments, Debs i would appreciate his number I’m just about to go on another rant to the papers etc. The new SNP that now have the overall say in the scottish parliment are really s**t when it comes to health - all they want to do is impress the majority and knock £2 of everybodies prescription charges etc.

Diane