Molecular Profiling

[violetmia]

Has anyone had tissue analysed for molecular profiling? This is being offered privately. It aims to diagnose the precise nature of your mutated cells, and show which biomarkers and enzymes they express. This can be matched to existing treatments to show a likelihood of good response.

The question, I'm told, however, is whether the treatment can or will actually be prescribed. The drugs that 'match' may not have been tested on pancreatic cancer, and may not be liscenced for it.

I wondered if anyone has any experience of this?

[Didge]

A drug can be used off label I believe, which means that it has a license but has not been tested for your particular condition. There has been some success treating PC with drugs used for breast cancer when the patient has tested positive for the BRCA gene so I suppose that would be a good example. I always think get whatever information that you can even if you're not sure it will make a difference. You never know what may be around the corner and time is of the essence with pc.

[stepuha]

Hello Violetmia,

I had three biopsies done (one on the pancreas at the time of diagnosis, one on the liver straight after and the last one - three weeks ago). The first two biopsies did not provide enough material for profiling. PC is a solid tumour so lack of material is a common problem. I am still waiting for the results of profiling. I was told it could take up to three months to analyse assuming there was enough material. This is on social system in France, it should be much faster privately. I heard that there is about 1-3% risk of cancer spreading from the biopsy but don't take my word on it as I have not actually seen the scientific article claiming that. I read that one of the senior health executives in the UK is advocating for introduction of molecular profiling for all cancer patients at the time of diagnosis. The thinking behind it makes total sense and represent the future of cancer treatments (in my opinion). the only problem is that there are very few treatments available at the moment but more and more clinical trials will be starting in the near future. (E.g. Precision panc programme is in process of obtaining relevant approvals for their clinical trials and expect to be ready in a few months time). One other consideration is that pancreatic cancer continues to mutate, so your current mutations may not be the same in six months time and you will need to do it again. I believe this profiling will also give you an indication of what chemotherapy regimen may work best. E.g. BRCA positive cancer will react better to platinum containing regimen (i.e. Folfirinox). I don't know if Abraxane is available where you live and what chemotherapy you have been offered as a first line treatment. I believe about 49% of PC patients have so called actionable mutations that can be treated with existing drugs but everyone tells me (and I have obtained many opinions) that chemotherapy is the best first line treatment.

I would absolutely recommend going ahead with profiling as soon as possible. PC is a very aggressive disease. If chemo doesn't work there will be very little time to look for other treatments.

I wish you the best of luck in your/your patient's treatment.

Kind regards,

stepuha

[violetmia]

Dear Stephus,

Thank you for your reply. I'm being a bit thick with this forum, and keep getting lost, so my apologies for the late response.

We went ahead with the profiling. It revealed that my husband has the KRAS gene (very common) and should therefore be considered for a new trial drug targeting this gene. So that's great news. However, the trial oncologist said he would like him to first have Gem-Abraxane. We have just heard that this is not available to him. NHS England...

"Paclitaxel as albumin-bound nanoparticles (nab‑paclitaxel) with gemcitabine is recommended as an option for untreated metastatic adenocarcinoma of the pancreas in adults, only if:

· other combination chemotherapies are unsuitable and they would otherwise have gemcitabine monotherapy."

In my husband's case, he had Folfirinox as first line treatment for metastatic cancer, and therefore disqualifies for Abraxane.

I hope you're doing OK, and very very best of luck

Violetmia.

[Dandygal76]

I can imagine your frustration with this - it really is a sorry state of affairs when we want to give our loved ones every opportunity. Have you tried a chat with Sarah Cannon in Harley Street to see if there are trials coming up in the pipeline. There are many many private oncologists though with links but the LOC in Harley Street may have some advice as I always found them very informative. I know how much of a difficult time it is for you. The treatments are limited and at some point you need to try very hard to ride past the wave of desperation and enjoy your time. That is 'fine talk' coming from me though because I fought to dad's dying breath but I also thought we had time and options on our side. There really is a different outlook when you see this from the other side of the divide - where I hope you will never be. Sandra's 'enjoy your special times' rings in my ears constantly now. x