Relatives and friends

simon44

Oncofocus

After a discussion with the onc, decided nothing to lose (other than the cost!) to try oncofocus, awaiting the report within ten days, has anyone tried this yet, very little to review on the Internet. Dont want to miss an opportunity?

Bear G

Tagging @Charlotte Nurse Advisor for her comments on oncofocus. Not something I’ve heard of
:x::x:

Smu2

Hi Simon, we have also requested the oncofocus test. It is expensive but in our situation felt it might help. I suggest giving Oncologica a call - they were really helpful on the phone and via email. www.oncologica.com/

We were advised that they hope this service will be more widely available on the NHS within the next 12 months and by clubbing together we are lucky enough to have been able to go ahead. We should have results back soon so do get in touch if want to know more.

I wondered if anyone knew the difference between the Oncofucs test and this Caris Molecular Intellegence for guiding cancer treatment test which is even more costly!?www.nice.org.uk/advice/mib120/chapter/Summary

:x::x::x:

Barbara

I spoke to oncologica about a year ago with the blessing of my oncologist @Smu2 @Bear G @simon44
The outcome was to keep on with current treatment which is holding stage4 at bay and have test done when available treatments stop working. I think they had EU funding for some of the drugs although you had to go to a clinic in Dublin to access them and pay about 100 euros a month, though may be misremembering this. And the funding will disappear I guess my treatment still working so haven’t been back to them yet. Their testing is ‘dynamic ‘ updating available drugs every 12 weeks so if you have test done too soon the drugs checked will be a smaller range. They need a biopsy sample which can be from original operation.

Charlotte Nurse Advisor

Thank for the tag @Bear G,

I spoke with the company fairly recently after a query from another patient as I was concerned about how the results were interpreted and then how the recommended treatments could be accessed if not available in this country.

The doctor I spoke with explained that the test was done and the results were then sent to the patient (phone support was also offered to go through the results). Essentially he did clarify that the results may recommend the use of drugs that are not available on the NHS so patients may need to access these medicines either privately, from abroad or via clinical trials. Whilst he said that the company would 'assist' with accessing these medicines he meant more by way of supporting the treating oncologist in trying to get them for their patient.

I think this is an exciting development however patients need to be aware that accessing recommended treatment may not be straightforward and I would definitely recommend that this test is carried out with the full knowledge and support of your oncologist.

Charlotte

CD1966

Can you provide some more info on this @simon44 ? I would like to pass this on to my brother.

simon44

Hi. @CD1966
The best way I can explain it is that they examine a biopsie from a tumour that has been removed and look for a targetted treatment for that specific type of tumour. There is a 15% chance they wont find one, then the risk as explained above is how you get it and if your oncologist will prescribe it.
Please ring them for a better explanation as not only is it £1750 to do the request but then it could identify very expensive treatment that is not available on the NHS.
The company is called oncologica. Our results are due back by the 11th June.
Kind regards
Simon

CD1966

Thanks for that @simon44 - very useful. Keep us updated!

simon44

Hi @CD1966 the results have come back detailing approx. 7 or 8 targeted therapies that should have a positive effect, it details current trials that are using those therapies. The report suggests that the treatment being given for melanoma and lung cancer may have positive effects on Kellys tumours. They are going to contact me in a few days to give more info on the relevant trials , someof which are already approved treatments by nice but for different cancers. fingers crossed

david watt

@simon44
So they are suggesting keytruda, Pembro to treat your wife's cancer? Are they saying she is msi high or has a high tumor mutational burden? Otherwise the drug will be useless? I have completed 24 cycles of Pembro over 18 months, but am msi high. For some it works very well and others not at all. I am also considering a blood biopsy test but will try and do it via the NHS as a private patient as would probably be cheaper and don't need their recommendations.
Best wishes David

simon44

Hi @david watt
She is not msi high, to be honest I am out of my depth with which drugs are being recommended just going by notes I made from the call I had after receiving the report. My understanding is the therapy is all based towards BRAF.
We couldnt get this test on NHS, and I am desperate to make sure I am doing all I can for her and not leaving it too long. Just getting the MMR result seemed to take forever on the NHS without constantly asking!
Kind regards

Simon

Bear G

Tagging @nurses to see if they can help you decipher the results.