Another Crazy Ruling from NICE

[suesal123]

Been to see my oncologist today and after having been told, one month ago, that I have one more treatment on Carboplatin/Pemetrexed and then moving onto Pemetrexed maintenance they have now changed the rules.

You can now only get the Pemetrexed maintenance if you have been on the Cisplatin mix so that means just for the sake of box ticking I am going to have to change my last treatment in order to qualify for the maintenance treatment. How crazy is this!!!

[LorraineD Partner Roy Castle]

Hello Sue

I am sorry to hear you are having conflicting information about treatment. In terms of the NICE guidance it is best to look here,

nice.org.uk

I am not aware of any recent changes in relation to recommended treatment. It is certainly worth talking through with your consultant what the best available treatment is, whether via the standard pathway or supported through the Cancer Drugs fund.

best wishes with the next treatment,

Lorraine

[Harrypalmer in reply to LorraineD]

Hi Sue, I'm not so sure that is correct as I was told only last week that I'll be having Almita maintenance after my 4th round of Carbo/Pemet although last year I had 4 rounds of Cisplatin/Navorabine which didn't work so wonder if that makes a difference. I would certainly get a second opinion. Good luck and please let us know how you get on. Moni x

[Harrypalmer]

Hi Sue, what treatment are now on to qualify for the Alimta maintenance. I have also just been told that I do not qualify and I've read a lot of positive outcomes on this drug. They want to put me on Taxotere when I've finished 5th &6th round of Carbo/Pemet. I'm thinking of maybe paying for it if it's possible. Moni x

[suesal123 in reply to Harrypalmer]

Hi Moni,

I had 5 treatments on the Carbo/Pemet mix before being told that if I had my 6th & last treatment on the same drugs I would no longer qualify for the Pemet maintenance, although I now believe this is not a NICE decision but still not sure where the decision has come from?

My oncologist said that to qualify for the Pemet maintenance you had to be on the Cisplatin/Pemet mix so we decided that for my last treatment I would transfer on to this. I had my last treatment on the new mix 5 weeks ago and started on the Pemet maintenance a couple of days ago. The Cisplatin mix did make me feel worse than the previous mix but thankfully it was only one treatment.

I had a scan at the end of my 6th round but still waiting for the results - next week? Maybe it is worth discussing this option with your oncologist as mine was keen for me to stay on the Pemet maintenance. Hope this helps

Sue xx

[Harrypalmer in reply to suesal123]

Hi Sue, thanks for the info. I will certainly discuss this with my oncologist. I have done some research on Taxotere and don't like the possible side effects. I hope your scan results are as good as mine were which showed significant shrinkage. Good luck and keep us updated. Big positive hugs. Moni x P.s. what hospital are you under.

[AmyKB]

My mum had one round Cis/pem then three rounds of carbo/pem and just started pem maint ... Good luck to you. I did read conflicting info somewhere too but put our faith in Onc x