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Topic: Next Genetation Sequencing

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Dec 14, 2018 05:36AM

Novagirl wrote:

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/

Currently on first line treatment: Ibrance, Letrozole, Xgeva, Zolodex since 12/22/18 Mets to Lungs and Bones. Originally diagnosed early stage at 31 during the one year postpartum period. Dx 5/30/2013, IDC, Left, 2cm, Stage IIB, Grade 3, 2/12 nodes, ER+/PR+, HER2- (FISH) Surgery 6/26/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 8/29/2013 Herceptin (trastuzumab) Chemotherapy 8/29/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/27/2014 Breast, Lymph nodes Hormonal Therapy 3/29/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/19/2014 Fareston (toremifene) Dx 12/7/2018, IDC, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy 12/21/2018 Ibrance (palbociclib) Hormonal Therapy 12/21/2018 Femara (letrozole), Zoladex (goserelin)
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Dec 14, 2018 11:32AM Grannax2 wrote:

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.💞

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Dec 14, 2018 01:26PM Novagirl wrote:

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

Currently on first line treatment: Ibrance, Letrozole, Xgeva, Zolodex since 12/22/18 Mets to Lungs and Bones. Originally diagnosed early stage at 31 during the one year postpartum period. Dx 5/30/2013, IDC, Left, 2cm, Stage IIB, Grade 3, 2/12 nodes, ER+/PR+, HER2- (FISH) Surgery 6/26/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 8/29/2013 Herceptin (trastuzumab) Chemotherapy 8/29/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/27/2014 Breast, Lymph nodes Hormonal Therapy 3/29/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/19/2014 Fareston (toremifene) Dx 12/7/2018, IDC, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy 12/21/2018 Ibrance (palbociclib) Hormonal Therapy 12/21/2018 Femara (letrozole), Zoladex (goserelin)
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Dec 14, 2018 10:53PM - edited Dec 14, 2018 10:53PM by JFL

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.

Chart your own course. Dx at 30. Dx with mets at 38 while pregnant - extensive liver & bone involvement. Currently on Navelbine, Tamoxifen and XGeva. ER+/PR+, HER2 equivocal (IHC +2/FISH negative) as of most recent biopsy. Dx 9/2006, IDC, Right, 1cm, Stage IIB, Grade 3, 1/16 nodes, ER+/PR+, HER2- (FISH) Surgery 9/22/2006 Mastectomy: Left, Right Chemotherapy 11/6/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/15/2007 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/2014, IDC, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2- Surgery 12/26/2014 Prophylactic ovary removal Hormonal Therapy 12/26/2014 Aromasin (exemestane), Faslodex (fulvestrant) Targeted Therapy 6/18/2015 Ibrance (palbociclib) Chemotherapy 3/10/2016 Xeloda (capecitabine) Hormonal Therapy 5/14/2017 Aromasin (exemestane) Targeted Therapy 5/14/2017 Afinitor (everolimus) Chemotherapy 8/18/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 3/23/2018 Doxil (doxorubicin) Chemotherapy 4/26/2019 Navelbine (vinorelbine) Hormonal Therapy 4/26/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 12, 2019 02:27PM Novagirl wrote:

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


Currently on first line treatment: Ibrance, Letrozole, Xgeva, Zolodex since 12/22/18 Mets to Lungs and Bones. Originally diagnosed early stage at 31 during the one year postpartum period. Dx 5/30/2013, IDC, Left, 2cm, Stage IIB, Grade 3, 2/12 nodes, ER+/PR+, HER2- (FISH) Surgery 6/26/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 8/29/2013 Herceptin (trastuzumab) Chemotherapy 8/29/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/27/2014 Breast, Lymph nodes Hormonal Therapy 3/29/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/19/2014 Fareston (toremifene) Dx 12/7/2018, IDC, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy 12/21/2018 Ibrance (palbociclib) Hormonal Therapy 12/21/2018 Femara (letrozole), Zoladex (goserelin)
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Feb 13, 2019 10:29AM - edited Feb 14, 2019 06:32PM by EV11

Novagirl- have you looked into the MATCH trial clinicaltrials.gov/ct2/show/NC... 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

De novo stage 4 May 2015 ILC, pleomorphic, Luminal B. Mets to bone/marrow, ovaries, peritoneum, omentum, colon. Bladder mets 4/2019. Primary: ER+/PR+/HER2-; mets: ER+/PR-/HER2 equivocal; mutations: CDH1, ESR1, TBX3, NTRK3, ALK Dx 5/2015, ILC, Left, <1cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (FISH) Targeted Therapy 6/1/2015 Targeted Therapy 6/1/2015 Ibrance (palbociclib) Hormonal Therapy 6/1/2015 Femara (letrozole) Chemotherapy 9/7/2018 Xeloda (capecitabine) Immunotherapy 6/13/2019
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Feb 14, 2019 06:24PM Novagirl wrote:

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

Currently on first line treatment: Ibrance, Letrozole, Xgeva, Zolodex since 12/22/18 Mets to Lungs and Bones. Originally diagnosed early stage at 31 during the one year postpartum period. Dx 5/30/2013, IDC, Left, 2cm, Stage IIB, Grade 3, 2/12 nodes, ER+/PR+, HER2- (FISH) Surgery 6/26/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 8/29/2013 Herceptin (trastuzumab) Chemotherapy 8/29/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/27/2014 Breast, Lymph nodes Hormonal Therapy 3/29/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/19/2014 Fareston (toremifene) Dx 12/7/2018, IDC, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy 12/21/2018 Ibrance (palbociclib) Hormonal Therapy 12/21/2018 Femara (letrozole), Zoladex (goserelin)
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Feb 17, 2019 07:35AM JFL wrote:

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.

Chart your own course. Dx at 30. Dx with mets at 38 while pregnant - extensive liver & bone involvement. Currently on Navelbine, Tamoxifen and XGeva. ER+/PR+, HER2 equivocal (IHC +2/FISH negative) as of most recent biopsy. Dx 9/2006, IDC, Right, 1cm, Stage IIB, Grade 3, 1/16 nodes, ER+/PR+, HER2- (FISH) Surgery 9/22/2006 Mastectomy: Left, Right Chemotherapy 11/6/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/15/2007 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/2014, IDC, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2- Surgery 12/26/2014 Prophylactic ovary removal Hormonal Therapy 12/26/2014 Aromasin (exemestane), Faslodex (fulvestrant) Targeted Therapy 6/18/2015 Ibrance (palbociclib) Chemotherapy 3/10/2016 Xeloda (capecitabine) Hormonal Therapy 5/14/2017 Aromasin (exemestane) Targeted Therapy 5/14/2017 Afinitor (everolimus) Chemotherapy 8/18/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 3/23/2018 Doxil (doxorubicin) Chemotherapy 4/26/2019 Navelbine (vinorelbine) Hormonal Therapy 4/26/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 30, 2019 06:10AM Stephy01 wrote:

@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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