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fangmin7427

Mom is diagnosed recently with EGFR 19-del

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Hi Everyone,

I joined this forum because my mom is recently diagnosed with lung adenocarcinoma in China. It is a big shock to me and my family since she never smoked in her 70-year of life and we never had a relative who had any forms of cancer. My dad is a life-long smoker though. Cancer seemed so far away to me before and suddenly it is just right in front. I have done a lot of online research last month and it is still a lot to take.  I want to be more informed about lung cancer and its latest treatment through this community, and want to be part of group of people with similar experiences.

My mom was coughing for over a month and went to see the doctor in early June. The CT scan showed a tumor in lower right lung about 3 cm in size. She then had PET CT, MRI, bone scan, and enhanced CT. None of those showed the cancer has spread. However, during the micro invasive surgery, the doctor found out the cancer has spread to the upper and mid right lung and stopped the surgery without touching the tumor, but did took small piece of tissue with a spread dot for biopsy and genetic testing. The genetic test of blood showed nothing. But the genetic test of the tissue sample showed EGFR 19-Del mutation.

Her doctor prescribed Gefitinib (Iressa) for her first line treatment last week, saying her mutation responds very well to Gefitinib. However, i read that NCCN guideline is to use the 3rd generation TKI, Osimertinib (Tagrisso), as the first line treatment for EGFR mutation. Not sure if anyone here can shed some light here that which one is a better option. 

Also, I live in New Jersey. Are there any local groups in either New Jersey or New York that i can join?

Thanks you,

Min

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Hi everyone!  I am joining this because I take car of my dad who has Stage 4 lung cancer.  I just wanted a place where I could get some support,

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Hi Min, Welcome to the group.  My mom has adenocarcinoma as well, but currently has No Evidence of Disease/NED.  She has no known mutations, but a high PD-L1, which made her a great candidate for immunotherapy, which brought her to NED status.  So, unfortunately I can't comment on your mom's treatment recommendation. Also, live in a very small town on the opposite side of the country, so I am of no help with resources local to you, sorry!

My main hope was to welcome you and let you know that you are not alone in this journey.  As a care advocate for my mom, these forums and LUNGevity's website have been great resources for me. I hope you find they are for you as well.

Take Care,

Steff

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Hi Min, 

I was born and raised in Essex County, NJ- welcome to our group.  I can certainly understand the shock you are experiencing, the EGFR Lung Cancers affect primarily healthy women.  For some unknown reason, asian women most commonly have the EGFR driver mutation.  In the US, most EGFRs start on Tagrisso, however that's not always the case over seas.  I suspect it has to do with the cost of these medications (which range $13,000-$15,000 per month).  

In Millburn, you might reach out to St Barnabas, the head of thoracic oncology trained at Harvard, there may be some support programs there.   As you know Memorial Sloan Kettering is across the river and down in B-Town on the Jersey side.  I now live in KC where I was surprised there was no lung cancer support group, so I started one up.  

Keep us posted and we'll do the best we can to support you. 

Michelle 

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11 hours ago, Steff said:

Hi Min, Welcome to the group.  My mom has adenocarcinoma as well, but currently has No Evidence of Disease/NED.  She has no known mutations, but a high PD-L1, which made her a great candidate for immunotherapy, which brought her to NED status.  So, unfortunately I can't comment on your mom's treatment recommendation. Also, live in a very small town on the opposite side of the country, so I am of no help with resources local to you, sorry!

My main hope was to welcome you and let you know that you are not alone in this journey.  As a care advocate for my mom, these forums and LUNGevity's website have been great resources for me. I hope you find they are for you as well.

Take Care,

Steff

Thank you, Steff. It is great that your mom is in NED status. I heard that's what happens when immunotherapy works. It is definitely a comfort to know a website and forum in Lungevity with great resources. hopefully, i can join some local groups and meet people with similar experiences.

Best,

Min

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10 hours ago, Rower Michelle said:

Hi Min, 

I was born and raised in Essex County, NJ- welcome to our group.  I can certainly understand the shock you are experiencing, the EGFR Lung Cancers affect primarily healthy women.  For some unknown reason, asian women most commonly have the EGFR driver mutation.  In the US, most EGFRs start on Tagrisso, however that's not always the case over seas.  I suspect it has to do with the cost of these medications (which range $13,000-$15,000 per month).  

In Millburn, you might reach out to St Barnabas, the head of thoracic oncology trained at Harvard, there may be some support programs there.   As you know Memorial Sloan Kettering is across the river and down in B-Town on the Jersey side.  I now live in KC where I was surprised there was no lung cancer support group, so I started one up.  

Keep us posted and we'll do the best we can to support you. 

Michelle 

Thank you, Michelle. Currently, Tagrisso is covered by insurance in China as the 2nd-line treatment. But my mom's doctor said it might change in September this year. I will go back in August and my mom will have her first follow-up after taking Iressa. We will then have a discussion with the doctor to see if she will stay with Iressa or switch to Tagrisso.

Best,

Min

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