This post follows up on a post a few days ago by Louise at Ovacome to this forum. Up to the present time I have been unable to post due to confidentiality, also apologise for lengthy post.
I am one of two patient experts on the NICE appraisal committee. The initial meeting I attended was at the start of a September and the committee will meet again at the start of November, I have been invited back to the second committee meeting. This is unusual. I am not sure what will happen in the second meeting but towards the end of this post is a bit about what I have said to the committee already.
This is where I am with all of this as this guidance concerns women with recurrent Ovarian cancer.
For women with recurrent Ovarian cancer maintaining quality of life is paramount. As we are all different with different OC, what works for one may not work for another women. Keeping all options open is paramount to ensuring that all women have a symptom free life as these drugs can give us, please feed back to the committee on this issue.
I have just cut and pasted the original post that Louise from Ovacome posted
The Department of Health has asked the National Institute of Health and Care Excellence (NICE) to produce guidance on using topotecan, pegylated liposomal doxorubicin hydrochloride, paclitaxel, trabectedin and gemcitabine in the NHS in England and Wales. The Appraisal Committee has considered the evidence submitted and the views of non-manufacturer consultees and commentators, and clinical specialists and patient experts.
The main recommendations made are Paclitaxel and Pegylated Liposomal Doxorubicin (Caelyx) are recommended. Gemcitabine in combination with Carboplatin, Trabectedin and Topotecan are not recommended.
This document is not NICE's final guidance on these technologies. The recommendations may change after consultation.
This is the link to the NICE document where feedback can be left. Will put link into another post to this post!
As one of two patient experts, I represented Ovarian Cancer Action for this NICE consultation and I have already said in the committee that all options should be kept open for all clinicians to be able to prescribe from as wide a pool of chemotherapy agents as possible. I also put it in the wider context, that there is no screening for ovarian cancer and consequently, there is an inevitability of recurrent ovarian cancer for women, after initial diagnosis. That being the case we need to have as many options as possible for symptom free survival and that we need to know that all options are there for our clinicians to use. See section 4.3.2 for both patient and clinical experts views.
I hope this helps to open up a very heavy and complex report and that as many of you will feedback to the committee, the outcome of this report affects us all and our continuing access to all chemo drugs for the treatment of recurrent OC, until such time that there are more targeted therapies for OC.
Love Wendy x