Has anyone tried or considered molecular profiling of tumours services offered by Clearity Foundation and Caris Life Sciences for recurrence

[sophsmum]

The purpose of the service is that then choice of chemo's is then individualised to you rather than a one size fits all approach. Is this something that UK Onc would advocate if a patient wanted to pay for the service? I am new to the site and have a mother with Stage 3c Grade 3 Ovarian Cancer. She is just completing her final chemo now and has done really well on it but unable to have an operation.

[JacJac]

Tumour profiling appears to be something that is now going to be offered specifically for people with lung cancer as part of a trial. I understand that this is a way forward offering individualised programmes of treatment and may be offered in the future here in the UK. However I don't know if it is something we can request from our oncologists. I think Clearity and Claris life sciences must be American? so maybe tumour profiling is more available there already, providing individuals have the right insurance or can afford to pay. I suspect it is not on offer here in the UK but I stand to be corrected. I also suspect that it would be horrendously expensive. I would be interested to know more so will be interested to hear others thoughts or knowledge of this. All the very best jacjac x

[SandyL]

I have a friend who was dx with Stage 1V Ovarian Cancer almost 17 years ago. A few months ago she recurred so her Dr is recommending that she have the tumour profiling to establish the best course of treatment. A piece of her tumour has been submitted for evaluation and is still awaiting the results as we speak. Yes, she lives in the US, hence the reason she was able to access this service.

I live in Canada (born in England) so I'm not sure if those services are offered here either. Each province in Canada has different rules and regulations, so it's impossible to say if it's covered here or not. Touch wood I haven't required the tumour profiling yet, (Dx with Stage 1V in April 1999) but if I did, I'd be sure to investigate it if circumstances changed.

To me, it seems a logical way to assess the most appropriate treatment and I do hope it will soon be available in UK (if it isn't already).

Sandy.

[sharonforce]

The Institute of Cancer Research in the UK are developing a Tumour Profiling Unit see:

icr.ac.uk/press/press_archi...

icr.ac.uk/support_us/opport...

When I was on my trial at the Royal Marsden I took part in other research involving molecular profiling of my tumour. I must ask them again whether they ever received any information back from ICR regarding my tumour.

It looks like there are also private companies in the UK that have tumour profiling services, e.g.:

ogt.co.uk/news_events/news/...

Best wishes

Sharon

[sophsmum]

Hi - thanks for all the replies. It is definitely something that I will keep an eye on. I think it would only be worth doing with the buy in of your oncologist as they need to be able to want to use the info to help decide best course of treatment. Sometimes difficult to push for new possibilities. Also, on a slightly separate subject - my mum was told that Avastin was not available in Scotland - is this something she should be pushing for a bit harder or is it just a case as only available in England?

[HerThing in reply to sophsmum]

Hi the issue over the availability of Avastin has I think been confused because in England we have the Cancer Drugs Fund. Avastin is not available in England as a standard treatment on the NHS in the same way as it is not available in the devolved nations. To access it, an oncologist must make application for funding. There are certain circumstances where the drug is fast tracked for funding by the CDF, but if a patient is outside the criteria then the application process has to be followed either to the CDF or the local health trust. I know some ladies have received the drug in Wales despite the lack of a CDF though it appears by no means easy. As Scotland has its own procedures I assume the situation is similar there. i.e. While the drug is not routinely available, funding can be applied for if an oncologist decides it would benefit the patient. Of course applying does not mean it will be granted funding though.

Andy x

[sophsmum]

Thanks Andy - I will get Mum to dig a little deeper on this at her next visit to the oncologist - appreciate the quick response x

[HerThing in reply to sophsmum]

No problem. BTW keep in mind that Avastin is not suited to everyone nor is it a miracle wonder drug. While many ladies do appear to be doing well with it, others I know have not had such a positive experience. Whether your mum is able to access it or not I wish her a long and happy treatment free period.

[ScardyCat40]

I just wonder if at present whether any of the existing conventional treatments would benefit from molecular profiling so your oncologist may feel it would be a waste of money. Definitely get your to keep pushing for Avastin I believe there have been cases where is has been prescribed in Scotland one of the women on this site did a lot of campaigning for access to Avastin in Scotland but sadly she has now passed away.

[Em123]

Yes, my doctor suggested this for my Mum but she didn't end up having it done as she was too ill to travel to the hospital near London (Breakspear Hospital - they specialise in environmental medicine & Dr Jean Monro is amazing). It is private and consults are about £200 for the first and about £80 thereafter. They also offer vitamin C drips, hyperthermia beds etc. A truly amazing place

With the molecular profiling you can be tested for drug treatments, natural treatments or both. I think its about £2000 for both so not too pricey. Mum has responded so well to her chemo that this avenue wasn't pursued but I'm sure she will have the test if it returns.

Hope this helps. All the best, Emma