What specific mutation?

[Mares]

My husband was diagnosed July 8th, 2021 with stage IV NSCLC. We attend appointments together in person or via phone. My first goal is to provide what he needs when he needs it which includes his mental health. It is imperative our knowledge is based on the most current information. 

My second goal is to become knowledgeable about his specific type of EGFR mutation which is why it’s imperative to be knowledgeable on his specific mutation to understand his treatment options better.  

My husband consistently informs me he’s unaware of the type. His doctor is very diligent and responsive. He could of simply forgotten or wants to protect me so I don’t Dr. Google everything. (Let’s face it we all Dr  Google medical information all the time  

How do I find out? Do I ask my husband for permission to look at his MyChart? Do I ask at the next consult? Do I leave it alone and avoid upsetting him?

 

[LouT]

Hi Mares,

I cannot tell you from personal experience about EFGR, but we do have a forum for it and you can find it here.  I hope this helps somewhat.

Lou

[Rower Michelle]

I wanted to know the sub type of my ALK mutation and asked my doctor to do some additional testing which he was willing to do however my husband didn’t understand the complexities of the Exons- 

We’ve been married for almost 30 years and my hubby has been more than happy for me to manage all of his portals, appointments and communication with the medical team- even before we got married.  
 

I suppose the question is how did you both manage medical appointments before the cancer?  Any sudden changes can disrupt the early days of this diagnosis when it’s a struggle to find a way to get grounded again.  
 

Sometimes the Exon information is in MyChart, sometimes it isn’t.   I would explain to your husband why you want to know and ask at the doctor next appointment.  You might also ask what is the doctors experience with the sub-type, how your husband will be monitored and what the next step would be if there are any changes.  
 

As you said, Dr Google is not our friend especially with EGFR since the research is changing so quickly.  All the Facebook groups have information about the various EGFR sub types. 
 

Having said that, it’s very important to know and understand what the subtype of a mutation is.  Irrespective of the knowledge obtained, diagnosis is not prognosis.   Having a good offense is the best defense in managing this disease.  

[Judy M2]

I had to specifically ask the nurse practitioner what my EGFR type and subtype were. I also had to request a copy of the biomarker test results for my records. I think my biomarker report came from the hospital where the biopsy was performed. 

Interestingly, today I watched a lung cancer presentation by Cure, and the oncologists suggested that patients get and keep their original  biomarker test results so that they can remind their oncologist of their particular mutation at diagnosis, if necessary. They said that after 4 or 5 years, that information might not be so easily accessible in the doctor's records. 

[Mares]

15 hours ago, Rower Michelle said:

I wanted to know the sub type of my ALK mutation and asked my doctor to do some additional testing which he was willing to do however my husband didn’t understand the complexities of the Exons- 

We’ve been married for almost 30 years and my hubby has been more than happy for me to manage all of his portals, appointments and communication with the medical team- even before we got married.  
 

I suppose the question is how did you both manage medical appointments before the cancer?  Any sudden changes can disrupt the early days of this diagnosis when it’s a struggle to find a way to get grounded again.  
 

Sometimes the Exon information is in MyChart, sometimes it isn’t.   I would explain to your husband why you want to know and ask at the doctor next appointment.  You might also ask what is the doctors experience with the sub-type, how your husband will be monitored and what the next step would be if there are any changes.  
 

As you said, Dr Google is not our friend especially with EGFR since the research is changing so quickly.  All the Facebook groups have information about the various EGFR sub types. 
 

Having said that, it’s very important to know and understand what the subtype of a mutation is.  Irrespective of the knowledge obtained, diagnosis is not prognosis.   Having a good offense is the best defense in managing this disease.  

Hello Rower Michelle, 

You bring up some excellent points. My husband and I have always been responsible for our own health care. This includes appointments, medication management, and all the other fun stuff. This is helpful in some ways because neither of us are totally responsible for the medical care of the other. 
 

His oncologist is one of the top doctors in her field (thank the good Lord we live in an area with great access to medical care). He also has another oncologist who specializes in LC. So both have experience with mutations. But we do need to ask about monitor. At this point my husband goes in for monthly to six weeks consults. They do blood work. He goes in for CT scans maybe 3 months? Goodness I can’t remember. 
 

You are correct in pointing out to separate the diagnosis from the prognosis. Since it’s been four months I feel we both need to focus more on how his treatment will hopefully lead to NED. Thank you for your wonderful reply. We appreciate it greatly! 

[Mares]

Oops. I forgot to mention I will check with my husband and his oncologist to identify the mutation. I feel this is the best action to creat the defense. It’s very validating to hear it from others going through the same situation. Thank you again for your kind reply. 
 

~Mares 

[Mares]

1 hour ago, Judy M2 said:

I had to specifically ask the nurse practitioner what my EGFR type and subtype were. I also had to request a copy of the biomarker test results for my records. I think my biomarker report came from the hospital where the biopsy was performed. 

Interestingly, today I watched a lung cancer presentation by Cure, and the oncologists suggested that patients get and keep their original  biomarker test results so that they can remind their oncologist of their particular mutation at diagnosis, if necessary. They said that after 4 or 5 years, that information might not be so easily accessible in the doctor's records. 

Hello Judy,

That seems logical to get the records now. His NP didn’t give us any information about it obviously. But if we can obtain the original biomarkers testing it would be amazing. 
 

My husband’s oncologist is in the same hospital which he was diagnosed. Would I ask her to provide us with the records or just have them faxed over? It’s a bit confusing sometimes getting all the data and information straight. We do have a binder for these things. 
 

I shall watch the Cure. Where did you find it? 
 

Thank you so much for your reply. It’s very helpful to be validated by others going through the same journey. I hope you with will be NED soon (if you’re not already). 
 

~Mares 

[Mares]

On 11/14/2021 at 8:32 PM, LouT said:

Hi Mares,

I cannot tell you from personal experience about EFGR, but we do have a forum for it and you can find it here.  I hope this helps somewhat.

Lou

Hello Lou, 
Thank you for the link. I will check it out! 
 

~ Mares 

[Judy M2]

Mares, the link to the Cure Educated Patient is below. I don't know if the November 15th webinar is available yet. I can see it because I registered and attended. Cure Today has a lot of good information and I follow them. (I've also been interviewed by them in connection with the 20th anniversary of 9/11.) 

https://www.curetoday.com/webinars?display=recent

As to test results, I would start with your husband's oncologist's NP or medical assistant. They serve you and should give you anything you ask for. Remember that as the patient, your husband has the right to all of his records. If you aren't already his contact for HIPAA, it's important that he sign the necessary form for each of his doctors so you can call on his behalf.

Anyway, yes, I'm NED. I was stable or improving for 13 months after treatments and starting Tagrisso and got to NED in April of this year. 

[Mares]

On 11/16/2021 at 5:14 PM, Judy M2 said:

Mares, the link to the Cure Educated Patient is below. I don't know if the November 15th webinar is available yet. I can see it because I registered and attended. Cure Today has a lot of good information and I follow them. (I've also been interviewed by them in connection with the 20th anniversary of 9/11.) 

https://www.curetoday.com/webinars?display=recent

As to test results, I would start with your husband's oncologist's NP or medical assistant. They serve you and should give you anything you ask for. Remember that as the patient, your husband has the right to all of his records. If you aren't already his contact for HIPAA, it's important that he sign the necessary form for each of his doctors so you can call on his behalf.

Anyway, yes, I'm NED. I was stable or improving for 13 months after treatments and starting Tagrisso and got to NED in April of this year. 

Now that’s what I call a huge success! Congrats on being NED!!! That gives us hope he will be stable or NED without any reoccurring episodes. I shall as his NP for help. We have a meeting with her tomorrow. Thank you! 

[Mares]

Thank you for the link. I will definitely check it out. It’s going to be useful information for both of us. Thank you for suggesting it! 
 

~Mares