Next Genetation Sequencing

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Novagirl
Novagirl Member Posts: 123

Hi all,

I’m newly diagnosed with bones Mets. Im having a CT guided spinal biopsy next week. Has anyone done this NGS testing? It looks like there are several labs. I’m confused as to which one to use.

This drug for TRK has been getting a lot of buzz but I don’t know if breast cancers have the TRK genomes.

https://trkcancer.com/

Comments

  • Grannax2
    Grannax2 Member Posts: 2,551
    edited December 2018

    I only know of Foundation One for Genomic testing. Mine was covered by my insurance. There are others that might not be covered..

    I have ERS1 mutation. It hasn't helped me to change treatment, though. My MO says drugs like Ibrance and Afinitor have to be prescribed with an AI regardless of genomic testing.FDA rules.💞

  • Novagirl
    Novagirl Member Posts: 123
    edited December 2018

    Thank you Grannax2, this is helpful. Hopefully my insurance covers it too

  • JFL
    JFL Member Posts: 1,947
    edited December 2018

    The two big companies are Foundation One and Caris. The National Cancer Institute (NCI) accepts their tests to get into trials there. It used to be that those were the only two they would accept. I don't know if that has changed. Both are excellent. Caris tests for a bit more things but also requires a very large sample size which can pose a problem in many cases. There are other players in the game now as well but I don't know about their reputability. I just had a CT guided liver biopsy today that is being sent to Foundation One so that I can get myself into an NCI trial for FGFR amplifications. I know that when I previously had a Foundation One test, they never charged me. They sent me a consent that permitted them to try to appeal directly with my insurance company which I signed and returned. After about year, my insurance company paid them and Foundation One never charged me the patient responsibility which was at least a few thousand, maybe more than that.

    I also had a liquid biopsy last year, which my insurance paid for without dispute and the company never charged me the patient responsibility which was a few thousand. Interestingly, my first Foundation One report showed about 7 mutations or amplifications. The liquid biopsy showed none. I may have made the mistake of having the liquid biopsy when I was on treatment that was working. I suspect something would have showed up if I was progressing at the time.

  • Novagirl
    Novagirl Member Posts: 123
    edited February 2019

    JFL,

    Thanks for the information. It was very helpful. I got my results from Foundation One from my MO over the phone so I don’t have the report. I have FGFR amplification.

    Do you know a lot about this mutation? I read those with it progress quickly on first line endocrine therapy and that it’s assiciated with poorer prognosis.

    http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.1013


  • EV11
    EV11 Member Posts: 127
    edited February 2019

    Novagirl- have you looked into the MATCH trial https://clinicaltrials.gov/ct2/show/NCT02465060?term=nih+and+match+trial&ra nk=3

    or other trials using erdafitinib for FGFR mutated cancer? There is n0t any FDA approved medications targeting FGFR, but that drug, in trials, may be useful for you. I would definitely get in touch with one of the PIs on the MATCH trial or with the intake RN at the NIH (you can find that information on the NIC clinical trial info webpage) as well as have your onc looking other trials near you.

    Elizabeth

  • Novagirl
    Novagirl Member Posts: 123
    edited February 2019

    Elizabeth,

    Thank you for providing the match trial link. I first heard JFL use the match trial verbiage just recently. I’m going to be following along and hoping she gets an exceptional response.

    I literally feel like I have no clue what is going on and to think I thought I understood breast cancer somewhat...nope I don’t at ALL. This is an entirely different beast.

    I don’t know if you can answer this or not- I should try and line this up for second line therapy not bail on Ibrance correct? I’m going to ask my MO that as well

  • JFL
    JFL Member Posts: 1,947
    edited February 2019

    Novagirl, I have also heard that FGFR alterations are associated with aggressive disease, poorer outcomes and typically are found in Luminal B breast cancer. On the bright side, it is often the alterations associated with poor outcomes that end up having an effective treatment. I start erdafinitib on Friday and am praying it works for a decent stretch. The side effects sound pretty tolerable, nothing horrendous. With the NCI trials, any institution can apply to participate. My cancer center applied to participate and my MO told me it is possible to apply for other clinical trials that we discover. Not sure where you are treated and what the resources are like but if you are interested, it would be a good idea to get it on your MO's map now to determine whether your cancer center could participate. That being said, it wasn't until I failed my third treatment that my MO started considering trials. Many MO’s don't want to their patients into trials before trying a few more FDA approved treatments. Many trials have strict requirements, such as require someone to fail at least one chemo but to have not taken more than two. Then there are others where the patient must be deemed to have no further FDA approved alternatives or FDA alternatives that the patient finds tolerable. Given that I am now heavily pretreated, I only qualify for the “no further alternatives" trials, which is what this arm of the MATCH trial requires. Not sure if all arms require that. My MO and I both believe I have more alternatives but I have cycled through a lot.

  • Stephy01
    Stephy01 Member Posts: 11
    edited August 2019

    @Novagirl, can I know which NGS test you are talking about? I know there exists such a technique to sequence DNA or RNA and analyse the gene expression of cancer-related genes. Due to NGS, this can be easily done using the dna or rna seq data within a less period of time. Was the procedure of the test explained to you? As in what will be the result of this test? NGS can help us recognise and understand cancer but I didn't know that there was already such a test available. I work in a lab where NGS is done for sequencing and its applications are still in the early stage. There is a lot of research that needs to go into this to understand how the mutations are occuring and what is transforming normal healthy cells into cancerous cells. Please leave me a link of the NGS test if you are not sure of its procedure.

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