How do you find a specialist oncologist

[Sammyboo69]

I have stage 4 lung cancer which is alk positive - I have had a great run on xalkori - a targeted Hersey but I have now had slight progression. I am the first person in Shropshire to test positive for the mutation and to be on these tablets and if I'm honest I have lost confidence in the oncology team that I see as they have no experience of this specific type of Cancer.

Has anyone experienced finding a specialised oncologist Ive tried various help lines to no avail.

Hope this makes sense

Kind regards

Susan

[Hidden]

Hi Susan, I've no experience of Xalkori, but have you tried the Cancer Research website and looked for trials in the uk. Good luck Rab

[Hidden]

Hi Susan,

As Alk testing is not yet standard practice in the UK, it sounds like you've had the Gold standard treatment so far. In which hospital did you receive your treatment and what has caused you to lose confidence in your team? I'm sure all of the members of the Multi disciplinary team are doing their best for you.

Best wishes,

Beth, on behalf of information and Support.

[Lifesab]

Hi Susan.

You may recall we "conversed" some 9 months ago as I had just started on Xalkori. At that time I mentioned I was one of a small number being treated at Guys Hospital in London. I think it is fair to state that it is a learning process for most hospitals as it is a new treatment for a comparatively rare genetic cancer. From what I gather a second generation of the drug we are taking is now being trialled. I do not know whether it is available for patients like us.

I'm sorry to hear that you have lost faith in your oncology team. My only suggestion would be for your doctor to consult with Guys as they are treating more patients with ALK at this present time.

Best wishes to you.

Colin

[Sharonie]

Hi Susan,

I am under the Royal Marsden in London(Dr.Popat). The lung cancer team have experience of ALK positive patients. I have been told that once the current drug I am on stops working, I will have xalkori. Then after that another drug should be approved that is currently in trials called ceritinib.

Good luck

S