Learning NSCLC for stage four lung cancer

[Blue Fish]

Hello everyone! My mom was just diagnosed with stage 4 Adenocarcinoma in her right lung. I felt so helpless with so much information but so little time. I'm glad to have found the support group. My mom's cancer has spread to bones, liver, and brain. Her gene analysis just came out an hour ago showing EGFR L858R mutation. She is currently in China. The doctors there seem to have decided on the targeted therapy based on this report. Don't they need to find out if there are other types of mutations? Is it enough to know what medicine to use? Thanks for any information you may offer. We'd like to ask intelligent questions when we talk with the docs.

 

[CIndy0121]

Hello everyone! My mom was just diagnosed with stage 4 Adenocarcinoma in her right lung. I felt so helpless with so much information but so little time. I'm glad to have found the support group. My mom's cancer has spread to bones, liver, and brain. Her gene analysis just came out an hour ago showing EGFR L858R mutation. She is currently in China. The doctors there seem to have decided on the targeted therapy based on this report. Don't they need to find out if there are other types of mutations? Is it enough to know what medicine to use? Thanks for any information you may offer. We'd like to ask intelligent questions when we talk with the docs.

 

Perhaps because she tested EGFR positive, they didn't need to look to other mutations to determine the best treatment. Someone please correct me if I am wrong (I am EGFR negative and I have no idea what L858R means), but that's the mutation that has the most targeted, effective treatments. Stage IV eliminated surgery and radiation options for me; my metastasis is to the other lung. Hope someone will chime in if they think some radiation or surgery or ablation might also be appropriate to try to get rid of or shrink some of those bone, brain, liver mets. Sorry I can't be more helpful; my (limited) understanding based on my personal situation is that metastatic cancer can only be treated with a systemic treatment.


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[Tom Galli]

Blue Fish,

Welcome here.  I'm going to try and walk you through what the biomarker EGFR L8589 means.  Let's start with the easy explanation first and add complexity after.  Follow this link to learn about Targeted Therapy.  Read down through "What is a mutation?" (click on > [right arrow]), then read "How is biomarker testing performed?". then "What are targeted cancer therapies?", then "Available targeted therapies" and finally "EGFR (epidermal growth factor receptor) inhibitors"  Now you should understand what EGFR means.  There is a short video imbedded in the page that provides more information.  You will also note the statement that there are three EGFR-positive drugs approved in the US for first line treatment.  These are Afatinib (Gilotrif), Erlotinib (Tarceva), and Gefitinib (Iressa).  There is also an additional drug for EGFR-positive patients: Osimertinib (Tagrisso).  

So if your mother were a US patient, she'd have lots of targeted therapy treatment options to treat her adenocarcinoma EGFR L8589 strain of lung cancer.  I don't know if these drugs are available in China.

Now for the complicated explanation: here is a link to a My Cancer Genome description of the EGFR L8589 Mutation in Non-small Cell Lung Cancer.  This gets pretty deep quickly but you can carefully read about all about the mutation, its frequency, and probability of successful treatments in tests conduced as of the date of publishing the information. 

So to answer your question, the doctors have enough information to treat your mother's lung cancer, as I understand it, knowing they've discovered the EGFR L8589 mutation.  I'm not a doctor so I can't render an absolute opinion but I'm pretty certain.  Now that her mutation is discovered, treating it becomes the question.  I would focus on what drugs the Chinese medical system uses to treat the EGFR L8589 mutation bearing in mind they may have different names for the drugs.

I hope this helps.  Feel free to ask further questions and I hope your mom's treatment is successful.

Stay the course.

Tom

[Blue Fish]

Thank you so much for both comments! I know some friends from MD Anderson and they are helping me with the diagnosis as well, but the initial thoughts are similar to Tom's which is that the discovery of mutation of EGFR L858R itself is sufficient to decide the medicine to be used for targeted treatment. In China there are two medicines available as first line treatment: Erlotinib (Tarceva) and Gefitinib (Iressa). Beijing and Shanghai may have more options. The doctor prescribed Gefitinib, but the doctor seemed to be indifferent to these two drugs and asked the patient to choose.

Initially I planned to ship my mom's pathology slides and the paraffin blocks (remaining of the biopsy tissue that is left for future studies) to here and let MD Anderson's oncologist to give a second opinion, but it looks like it is a pretty cut and dry case. Should I be more cautious? The doctor in China says the treatment is quite standard around the world. My current plan is to start the treatment as soon as possible for her to stabilize her condition, once it is stable she can travel to US since it is almost sure she'll develop resistance. The question is: is it feasible to travel while under the Gefitinib treatment?

[Tom Galli]

Blue Fish,

i agree with your "cut & dry" assessment. No additional diagnostic value of additional path screen. A second treatment opinion by Anderson also appears to be of little value at this time.

Targeted therapy is becoming standard of care and resistance to some drugs is well established. But some don't develop resistance and if they do, timing is not predictable. You won't know how your mom tolerates Gefitinb until she starts treatment. Further she may have side effects that complicate travel.  So starting treatment in China appears to be the best course. I'd hold Anderson in reserve. 

Stay the course. 

Tom

[Blue Fish]

Thanks Tom! We were fortunate enough to have an MD Anderson lung oncologist review my mom's medical record and she came up with the same recommendation. So Tom you are right that the solution is quite standard, but given the severity of the situation it is nice to have the confirmation. The doc also recommend CT scan after three months and decide whether to add radiation therapy. The doc in China plans to do CT one month after taking Gefitinib, which is even better. CT is a lot less expensive in China. My mom has started taking her first pill so we'll see how it goes.

At the same time I'm trying to see what is good time for her to come to US since subsequent treatment options are much more abundant here. I know she takes the pill once a day. It might take a while to transition from China's doc's care to a doc here. The doc here may want to redo some tests. I'm trying to figure out the logistics so she will not have gaps of care.

Also insurance coverage is an issue too. I plan to buy individual policy on the marketplace. Do the health insurance policies cover all the treatment options: first line, second line, third line?

Thanks for the encouragement!

Blue Fish

 

 

 

[Tom Galli]

Blue Fish,

Coordinating oncology care and handoff between a China physician and US physician (say at MD Anderson) may be the least difficult logistics element. Given the US - China state of international relations because of North Korea and Spratly Islands disagreements, obtaining a visa might be the high hurdle.  It certainly is the most uncertain element.  

Purchasing insurance coverage for your mother is something you can start researching now.  I assume your mom will reside with you in Texas.  I'd start an online investigation with insurance carriers in Texas and run a spreadsheet.  I don't know details of Texas insurance coverages but suspect there are fine print conditions and exclusions that need to be investigated.  So, read every word.  Be mindful that insurance policies are generally in force for one year, then renewal price and coverages changes -- sometimes dramatically. You'll need to re-check your spreadsheet immediately prior to your mom's arrival.

Stay the course.

Tom 

[Blue Fish]

Thanks for the advice! Good thing my mom has green card so coming to US is not an issue. Thinking about buying individual policy, but with the volatile individual market it is not sure if Houston will still have a marketplace next year.I know it is annual enrollment so I need to wait until the end of year to enroll for next year. It will be a problem if preexisting condition is part of the underwriting process. So much uncertainty with the regulations on healthcare market. It is literally life or death for some patients with some potential changes. Very sad but it is a reality.

[Tom Galli]

Blue Fish,

Well a green card solves that problem.  Who knows what changes the politicians will enact that affect health insurance?  Perhaps given the uncertainty, she'll have access to more care options in China.

Stay the course.

Tom