Wife newly diagnosed with NSCLC

Posted by daveb482 @daveb482, Oct 8, 2022

My wife had persistent cough some May. After X-ray indicated pneumonia potential in Right Middle Lobe (RML) two rounds of antibiotics , finally recommended pulmonologist to go in and take samples, adenocarcinoma found in RML. Follow up included CT and PET scans currently staged as IV as there is a nodule in lower right lung and left lower. Surgery ruled out, Radiation ruled out. No matching for targeted therapy drugs. Will be starting Carboplatin and Alimta chemotherapy with Keytruda immunotherapy. This will also be long term maintenance as required. Any comments?

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Did your wife have biopsy done?

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Sorry, meant to ask if nodes were biopsied.

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@daria

Sorry, meant to ask if nodes were biopsied.

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No, and the size is such that PET scan can not determine if cancerous

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Hi @daveb482, I'd llike to add my welcome to @daria's and bring in a few more members to this discussion like @wlgiles @burrkay @dedehans @ta52 @lls8000 @tns @sveiner @stanleykent. Some have stage 4 non-small cell lung cancer themselves or are caring for a partner with NCSLC.

Dave, if I understand your first post correctly, adenocarcinoma was confirmed and they staged her cancer as stage 4 because of further node involvement. Is that correct?

@burrkay and @lls8000 may be able to provide their experiences with maintenance therapy. When does your wife start chemo and immunotherapy? How are you doing?

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We are going to Mayo Monday for evaluation meeting to determine eligibility for a stage 1 clinical trial treatment. If ineligible or my wife decides it is not for her she will start chemotherapy and immunotherapy at our original medical provider the.following week. Concerning IVA due to nodule in left lung and complete consolidation of RML. It is stressful now because of decision to get Mayo consult Monday, port surgery Tuesday, then decide which path to go down, known approved treatment close to home (40 min) , unknown trial (2 hrs).

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@daveb482

We are going to Mayo Monday for evaluation meeting to determine eligibility for a stage 1 clinical trial treatment. If ineligible or my wife decides it is not for her she will start chemotherapy and immunotherapy at our original medical provider the.following week. Concerning IVA due to nodule in left lung and complete consolidation of RML. It is stressful now because of decision to get Mayo consult Monday, port surgery Tuesday, then decide which path to go down, known approved treatment close to home (40 min) , unknown trial (2 hrs).

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The trip to Mayo is worth it especially the Lung Team in Medical Oncology. Did you say there has been no biopsy? That's curious since they are already talking about a treatment plan using immunotherapy. What will be key is knowing what her PD-L1 expression is (that's a percentage).
I was on the immunotherapy plan as well and I was very fortunate that treatment went very well with quick, positive results. But, again, Dave, I wouldn't hesitate to use Mayo as my primary. I'm an hour and a half away and my wife and I consider our trips as a date!

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Exon 21 L858R adenoccarcinoms T790m not detected
My wife was diagnosed on July right lower lung tumor 2.5 x1.8 and mele both lungs and slight on 8th ribs. Onc dun need chem or ops - do target : Tagrisso 80mg 2 days once. All went well . Tumor shrink by 1cm , left clear - right a slight water. 3 months.
But last week - for 2 days , she feel breathless and cough . Went in hospital on tue- only right lungs for fluid - drain out 2.2 litre - stay 3 days , fluid is pinky. Pleural Fluid 40mg finding back as metastic non small cell carcinoma compatible with adenoccarcinoms. Culture report not out.
Can advise - is this bad ? is this MPE ? Or ?? Targisso still work ?? Thanks

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@patneo2

Exon 21 L858R adenoccarcinoms T790m not detected
My wife was diagnosed on July right lower lung tumor 2.5 x1.8 and mele both lungs and slight on 8th ribs. Onc dun need chem or ops - do target : Tagrisso 80mg 2 days once. All went well . Tumor shrink by 1cm , left clear - right a slight water. 3 months.
But last week - for 2 days , she feel breathless and cough . Went in hospital on tue- only right lungs for fluid - drain out 2.2 litre - stay 3 days , fluid is pinky. Pleural Fluid 40mg finding back as metastic non small cell carcinoma compatible with adenoccarcinoms. Culture report not out.
Can advise - is this bad ? is this MPE ? Or ?? Targisso still work ?? Thanks

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Addition : Blood test Ldh 205ul ,pleural fluid ph 7.5, lactate dehydrogenase 970.

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@daveb482

We are going to Mayo Monday for evaluation meeting to determine eligibility for a stage 1 clinical trial treatment. If ineligible or my wife decides it is not for her she will start chemotherapy and immunotherapy at our original medical provider the.following week. Concerning IVA due to nodule in left lung and complete consolidation of RML. It is stressful now because of decision to get Mayo consult Monday, port surgery Tuesday, then decide which path to go down, known approved treatment close to home (40 min) , unknown trial (2 hrs).

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I have to agree with Tom, Mayo is a great place for the consult, and ongoing treatment if you can make that work.
You also mentioned that she’s not a match for any of the targeted drugs. Without a biopsy, how do they know, did they do a liquid biopsy (blood)? The liquid biopsy will pick up on any tumor cells that are being shed into the blood stream, which works better when the tumors are larger.
Best of luck to you, hoping that you find the answers that you need. Please keep us posted. Lisa

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@lls8000

I have to agree with Tom, Mayo is a great place for the consult, and ongoing treatment if you can make that work.
You also mentioned that she’s not a match for any of the targeted drugs. Without a biopsy, how do they know, did they do a liquid biopsy (blood)? The liquid biopsy will pick up on any tumor cells that are being shed into the blood stream, which works better when the tumors are larger.
Best of luck to you, hoping that you find the answers that you need. Please keep us posted. Lisa

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A Pulmonologist performed a biopsy from which a portion was sent to Foundation Medical which performed the analysis that looked at the cancer cell genotypes and determined no matches to existing target drugs, got a 15 page report from them.

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