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
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Jings, you have done a lot of work, haven't you??? Congratulations!!! I don't think my oncologist would agree with gemcitabine not being one of NICE's recommendations, but that's NICE's problem. I having to ring his secretary at some point today, I am sure she will pass the message on. I do know that the gem/carbo/avastin combination is one he has mentioned several times, in the context of it working very well for women with OC. Thankfully, I haven't had it yet - I suspect I would be excluded from Avastin because of its side effects...
Again, very well done to you and Louise. Best, Vicky xxx (must rush off and do some shopping because our last litre of milk looks as if it's off...)
I do not think mine would either as I had gem/carbo with a touch of avastin for my first recurrence. Not as much work as it looks like as NICE look after patient experts so well and help with preparation although they do not know what questions the committee may ask. However, I was not asked questions I just seized the moment, whenever I could!
Controlled explosive mode, possibly decribes my mood at the committee meeting but had to hold on to my emotions and channel what I wanted to say as best to represent women with recurrent OC. I have lost three friends to OC since the beginning of this year and they were in my heart as I spoke.
You have done brilliantly to represent us so well on the NICE Appraisal Committee so thank you for all your work and time on this. It is absolutely brilliant that patients are consulted. I have a long wait this afternoon for my medical appointment before restarting chemotherapy. The RM have said Carbo-platin and Taxol for me - and for an important reason. I only had carbo-platin first time round and I am therefore excluded from trials if I don't have carboplatin and taxol as I would not have been on the standard route for comparisons to be made in a trial. I think this is a point worth making to the oncologist for women who have had a similar experience to mine.
Thank you for the URL to comment. I'll do my best to understand the document which will, I'm sure, be clearer for your post here, and will reply.
Hi Annie .. My oncologist has said I may go on a mek trial in the New Year but my chemo will have to start. I was going to suggest to her I'd wait for the drug trial and take ,y chances but then I won't have ad Taxol. I wonder what the reasoning is about having Taxol first. X x
Dear Tina, my appointment is a bit late so I'll take your question to Heike who's my consultant. I got the impression that with trials they're comparing like for like but I'll check on this and let you know.
I'll be deja vu if I learn I won't have Taxol at the last moment. I've psyched myself up for it, have read about the side-effects, and have bought some hats, head/hair decorations and had a make up consultation yesterday. Last time they told me on the first day of chemotherapy and I just burst into tears and felt so stupid. Well at least this post has given me some forewarning so I'll see whether they revert to Caelyx and will ask the question about trials.
My last oncologist in Wales suggested Caelyx Carboplatin because she said I wouldn't lose my hair and she thought overall Caelyx had less invasive side-effects.
Dear Tina, I asked the question as promised as to why Taxol, and have been referred to the senior consultant for an appointment tomorrow and a re-think. I have no idea what will happen tomorrow but I'm not worried. It's good they're thorough. xxx love Annie
I am thinking of you this afternoon and hope your wait is not too long. Thank you for replying when you are going through treatment. We always know that you are there for all of us.
You raise a good point about your treatment and hope you can feed back into the consultation with this.
The consultation looks at recurrent OC in terms of women who are platinum sensitive, platinum resistant and platinum refractory. This is most probably not the best way to look at the issue of recuurent OC and a better way would be to look at the five main types of OC and then do a comparison but they are a long way do from doing this at the moment.
The problem is that there is a gap between what we class as platinum sensitive and resistant. I had a partial response so I was in the 2% of those who respond in that way which is more than a 50% reduction.The rest of the disease was then mostly stable but there was some growth. Since I was taken into hospital four weeks ago with complicatiions, I now have to be categorised as either disease recurrent or disease progressive. I understand that what happens next under the treatment system depends on how im categorised. Some low grade disease is refractory, some partially sensitive and only 1% of women are likely to be fully sensitive and it does induce stable disease for many. I'm amazed though that low grade is treated with platinum but I'm glad it is because of my initial outcome. Also, there are precious few drugs out there. Love Tina x x
Hi Wendy ... I said I was surprised.. which is not really what I meant. I know there are few treatment options and many women get stable disease from platinum which is something to the good, but I would like to know how the distinction is made between resistant and sensitive. I suspect it may be up to the oncologist concerned rather than percentage response though I really have no idea about this. The issue may further be fuddled by the acquired resistant type of disease. Love Tina x x
Isn't that what FIGO (The International Federation of Gynaecological Oncologists) is supposed to do???? Gee whiz, what an alphabet soup...maybe a spaghetti put-a-nose-out-of-alignment perhaps? The only lingo they seem to speak fluently is, as an old friend once said, a mixture of B**** & B*******. That is supposed to be rude. Vxxx
Viper Victoria see below for an explanation of what FIGO is and does:
International Federation of Obstetricians and Gynaecologists (FIGO) Staging System for Ovarian Cancer
An international system of staging is used, and identifies the spread of the ovarian cancer at the point of diagnosis. It is important to receive correct staging as this can impact on treatment decisions.
The staging system is called the FIGO system, after its authors - the International Federation of Gynaecological Oncologists.
My understanding is that the FIGO staging system is for initial classification of tumours. When someone is unfortunate enough to experience a recurrence their own MDT make a decision based upon the individual circumstances. This is further complicated by the many different types of OVCA and the way an individual responds to chemotherapy.
I think FIGO publishes a report every year outlining the statistics they have gathered in women with all gynae cancers in the area they cover. There is also a five yearly summation, etc.. The interim and final outcome of various studies are also published. The data I have seen from them are very interesting.
Becky, this just makes the case even stronger in my opinion that the oncs have access to as many chemo options as possible for patients. Will take this further when I get back to the committee.
Yes... I think that would be better too so that the types are targeted with the right drug. Mine is advanced serous papillary primary peritoneal cancer which is essentially the same as ovarian though peritoneal takes up where ovarian left off. My sub-type is low grade which may or may not respond to the same drugs as high grade. A lot of work has been done of late about pathways of the different types and how the different cells can be stopped from multiplying and spreading. I'm hoping to go on a MEK trial which is an inhibitor (Though I haven't been given the name of it and I know it isn't Selumetinib. I'm hoping this trial drug isn't combined with weekly Taxol.) I suppose NICE can't give guidelines for the types and subtypes until there are proven treatments to guide about, but I feel progress has been made even from when I was diagnosed in March 2011. I live in hope! Love Tina x x
Wendy, thank you for posting this, it makes very interesting reading and gives me a lot more knowledge that could come in very handy at the appropriate time. Gill xx
This is all information for England and Wales - how do I find out what's happening in Scotland? I've been told my cancer looks like it's recurring (CA125 rising despite the Letrozole) but they are waiting for me to experience symptoms before they organise a scan and start me on chemotherapy, which she says will be the same drugs as the first time round (Paclitaxel regime) because that's all that's approved for OC treatment up here.
I am really sorry, I do not know what is happening in Scotland and as this issue has been raised by someone else. I have suggested it could be a good idea to start another post on this topic. If I do hear anything I will post in the forum.
They are proud of having a very fast turn around on their appraisals - about 6-8 weeks from licence being granted. (although I don't believe that they get as good a quality submission as its too quick for a lot of organisations.)
Hi, I dont want to throw a cloud into this but in my experience it is the individual Onc that determines, certainly initially, what you will have and IF you will have it. My wife was given Carbo/Taxol as a 1st line, our Onc didnt then want to give a 2nd line but we persuaded her to, so for a month she was given weekly Taxol.
With rising CA125 the Onc stopped that and said 'no more', again we persuaded her to refer us and she told us only chance of further treatment would be a trial. At the Marsden the Prof said 'loads of options, try gem/carbo' we did and and got some decent results out of it. Our original Onc after weekly Taxol had alread written my wife off.
To cut a long story short, when we eventually came back to our Original Onc, after finishing with the Marsden, we tried Letrozole without success, then we asked for another bash at chemo - ONC said no. So we asked for a referral - ONC said no.
So i started contacting differnt Oncs and found one, well a few actually, that were prepared to give more chemo, and the one that appealed was gem/carbo/avistin......so we went back to our Onc to say look please refer us - Onc said no.
By the time we went back and forth to'ing and fro'ing my wife had got into a depression and her symptoms had got worse, so she wouldnt have been strong enough to travel for more chemo anyway, although locally she would have been fine.
So i guess thats a long way round to say guidelines are fine, but if you have an ONC that isnt 'batting for you', then you still face difficulties. I hope all that seek further treatment have better Oncs than we did, and good luck to one and all.
Your absolutely right, the onc knows the response rate for each chemo, some may give only 25% chance of success, others can be as little as 10%. The taxol/carbo I believe is 80% hence why it us favoured. They should however try anything that has a chance of success because they wont know the result as everyone is different.
Thank you for your post as this also raises again the issue that everyone is different and that the oncs must have as many treatment options open to them as possible, until such time they have the knowledge to give more targeted therapies xx
You are quite right the oncologist will prescribe what they see fit, however they do not have absolutely free reign. They will only discuss/prescribe that which can be funded, and this is what NICE is for. What is the evidence? What are the economics? What are the side effects? They jumble it all into a complicated figure called a Cost Quali and then make recommendations. The funding bodies (Local trusts make a determination as to what will be available in their area based on the NICE guidance and inform the clinicians what is available for them to prescribe.
Exactly Tina, although to be fair, NICE was created to stop the whole postcode issue. At least if a drug gets NICE approval, everyone (in England) has an absolute right to access. Wales & NI tend to adopt NICE guidance, and Scotland has a different system called SMC....
Thank you for raising this issue, it is always good to remember that you need to have someone batting for you and to challenge decisions, although much easier said then done, when in the midst of recurrence and feeling ill. xx
Hi there .. This is how I thought it might be. Some humans are of the half empty rather than half full leaning. I like the batting for you expression but feel sad that your oncologist seems to be the first sort. Love Tina x x
Hi Wendy, like moominkat, I read with disappointment that this refers to England and Wales only. What is happening in Scotland? I am waiting for information from Louise regarding what action Ovacome have taken here before I start my letter writing campaign - there is no point in writing without the proper statistics. Apart from Scottish medical council not approving the use of Avastin - I don't know much else.
Dear Joanna, I am very sorry to hear that this is the situation in Scotland and I do not know what is happening. If I do hear anything from my various contacts I will be in touch. Suggest you start a new post to maybe raise awareness in this forum. With respect to Avastin, it is truly appalling to know that it is not approved in Scotland.
You did a brilliant job in the committee meeting and hope that you didn't feel too drained afterwards. Its daunting the first time! Just to note, Avastin has been appraised and turned down in both England and Scotland. The reason we can get it south of the border is that we have the Cancer Drugs Fund here, but it's worth remembering that NICE said no
Hi Harley, please will you keep me in the loop as to what info you find? I'm starting to feel that we are the poor relations when it comes to NHS treatment up here and if we need make a fuss and be heard then I need to know how and to whom!
See my reply above. Scotland generally tends to follow NICE guidelines, though they make their own decisions. I am a retired GP with primary peritoneal cancer, and that was my general experience when working.
I havn't forgotten, but we are expecting an announcement very soon, so wanted to wait for that as it will save you a lot of wasted work! Should be this week!
Thank you Louise, I will have the opportunity to buttonhole Alex Neil, and other cabinet ministers at the conference next week so any info that you could pass to me would be great.
Many, many thanks to you for representing us so strongly. It's good to know there are people, such as yourself, being invited on this committee. It's just so important that the 'professionals' listen to the patients views. Afterall it's our lives they are making decisions about. Thank you again
Dear Annette, thank you for your supportive and thoughtful words. I am not quite sure how this invitation came about but I had to apply and there was My link with Ovarian Cancer Action. They generally post every week about opportunities to get involved with NICE consultations or other organisations. I would encourage anyone to put themselves forward for whatever comes up. The patients voice is a powerful one.
At a recent appointment with my consultant I was told that if reoccurrence was found only in one location that the guidance states that surgery is the most appropriate treatment does anyone know any more about this?
I know of one person who was in that position and they had chemo and then half way through had surgery to remove tumour and then chemo restarted. This was after recurrence and at least five years after initial diagnosis. In terms of guidance I wonder if NICE or NHS England, the latter are in process of having specifications for treatment of OC written up by clinicians at the moment.
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