Gene mutation testing: Hello all... - The Roy Castle Lu...

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Gene mutation testing

00kitkat profile image
4 Replies

Hello all, following on from reading on others blogs about tests dad underwent another biopsy last week tests have come back as negative for KRAS, EGFR, ALK and BRAF we hadn't got our hopes up so no great loss. Slightly confused as dates o the test results page are all prior to the actual biopsy seems a bit odd. Have been given options;

1.More chemo docetaxel (dad not keen after reaction to last chemo)

2.Send 4 grand to a clinic in Switzerland to find out which gene is faulty

3.Or do a phase 1 trial - waiting for a date for the phase 1 docs to meet dad

Has anyone else used this Switzerland clinic before? Doc said it was called cassir? I didn't get her to spell it and I can't find it on google. Has anyone got any further info?

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00kitkat profile image
00kitkat
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4 Replies
Billculbard profile image
Billculbard

Sorry I can't help. Bill

Andy12 profile image
Andy12

Hi,

My Wife has also been through a similar process as your Dad, she was also negative for the gene mutations listed in your message. She has been put on an indefinite course of Chemotherapy consisting of Avastin and Pemertrexed.

Our Oncologist also recommened Molecular profiling to determine the gene mutation she has. The profiling is going to be conducted by the CARIS TargetNow test from CARIS Sciences.

We are waiting for confirmation on the process at the moment, this does indeed have a cost of approximately 4,000. Our Private Health Company would not authorise this, but they did confirm that they will acknowldge the results.

I will let you know how things progress with my Wife as soon as we get the next stage confirmed.

Good luck and bext wishes

Andy

00kitkat profile image
00kitkat

Hi Andy,

Yes please keep me updated, the oncologist sent me an email today saying after looking into the CARIS testing it is infact the same test that he has had (i.e the mutations mentioned in my first message) I have googled it tonight but have not been able to make much sense of it as to whether it is more than the test we have already had.

Maybe it is worth mentioning this to your wifes oncologist before you go ahead just to check it is more than the mutation testing offered in the UK as is otherwise a waste of 4 grand. I will ask our oncologist about the chemo your wife is on, the docetaxel will be Dad's 3rd different variant of chemo

Do you mind me asking what stage your wives cancer is at? My Dad was diagnosed with Stage3a NSCLCplus local lymph node in Oct 2010 though had been coughing up blood for a year previous with his GP saying that was normal and then misreading a xray 6 months later. I am assuming he must now be stage 4 as the tumor is now much bigger and has grown back at a rapid rate after an initial 8 month clear period following the first round of chemo and radiotherapy. We have now moved to the Royal Marsden as feel they are ahead of the game with all the latest developments

chelemc profile image
chelemc

Hi, I was diagnosed with non small cell lung cancer stage 3b in oct 2007, I took part in the SOCCAR trial which was combined chemo and radiotherapy.I too had a delayed diagnosis I had haemoptosis for over 5 years and was told it was genetic! I had six monthly scans open biopsies etc. makes me so angry! I went to the Royal Marsden for a surgical second opinion and was impressed although I never got the answer I wanted! I wish your dad the best of luck maybe look at some homeopathic / alternative treatments to use alongside his treatment (check with the oncologist first)I do think they have a role to play and feel they have helped me although I know its not for everyone.

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