EGFR Exon 19 Deletion with Brain Mets (Tagrisso)

[GBean]

Hello I am a caregiver of my husband, diagnosed with NSCLC in 2021 Stage 1B.  He had an upper lobectomy and recovered beautifully in 2022.  He had clear chest scans all year.  This past January he ended up in ER due to seizure which later revealed stage IV brain metastisis of multiple lesions (no cancer present in his lungs, thankfully). After resection of one of the tumors, EGFR Exon 19 deletion was confirmed lung cancer mets to the brain.  He has since had WBRT and has began Tagrisso in February.  He also has to take Keppra for seizure management.

His dosage of Tagrisso is 120mg currently and they want him to the max of 160mg for full penetration to the brain.  Does anyone here have experience on Tagrisso at this dosage?  The combination of the whole brain radiation, keppra and tagrisso is challenging with side effects.  Curious to see how many there are at this higher dosage as most I research people are at the 80mg dosage.

Thank you in advance and much health to everyone!

 

[Tom Galli]

GBean,

I'm a nearly 20-year survivor of progressed Stage IV, NSCLC. My type is squamous cell; when diagnosed, Targeted Therapy wasn't discovered! So I have no personal experience with Tagrisso except for hanging around this forum for about 15 years.

It is not unusual to see higher doses of chemotherapy that pass the blood-brain barrier given brain metastasis. Hopefully, WBRT will deal with the brain mets and the higher dose of Tagrisso will ensure they do not return.

Stay the course.

Tom

[GBean]

Hi Tom, that is wonderful news!  So glad you are doing well!  Great hope!

His is adenocarcinoma.  I just wish I could find others that are at this same dosage as him, just seems so hard to find.  Trying to determine if his side effects are more related to the treatment or the Whole Brain Radiation he had.

I noticed this forum doesn't seem too active for the EGFR folks.  Are you aware of other forums?

Keep up the great work Warrior!

 

[Karen_L]

@GBean, there's an EGFR-specific Facebook page called EGFR Resisters. There are a number of people taking the max dosage of Tag there.

Take care with sites beyond Lungevity. While it is helpful and comforting to not be in this lung cancer thing alone, I am concerned that sometimes people like to be the expert and tell others what they should do, or answer questions that are best addressed by an individual's oncologist. 

Chemo and radiation made me very tired for a long time. When I finished radiation-- not whole brain-- I was told the fatigue would get worse after treatment stopped, and then slowly improve. What does your husband's oncologist say about the fatigue? 

When you're doing multiple kinds of therapies at one time, it's tough to separate out which therapy is causing which adverse effect. Probably the only thing that matters is, what is your husband up for trying? I have a friend who seems to say yes to anything if it gives him a shot at being alive longer. More than a year ago, he was given the choice of chemo, which might kill him because he was so weak, or nothing, which would kill him in short order anyway. He chose chemo and is out and about, living his life today. It wasn't easy to be that sick and have such a hard treatment, but for him it was worth it. I think knowing how much we are able and/or willing to pursue is important to think about, at least for me.  

Best of luck

[Kimbertd]

@Karen_L @GBean I’m glad I stumbled on this forum. My husband was diagnosed with stage IV EGFR Kung cancer - that spread to the brain and spine in 2021. Was on 80 mg of Tagrisso for a year - no issue then the cancer spread - brain and bones. He had WBRT this past August and recently had shoulder replacement surgery. The cancer had spread to his humerus. Recent scans show a spread in lungs and adrenal glands. We too are contemplating increasing Tagrisso dosage or started Chemo. My husband is very weak from the WBRT and shoulder surgery- but he wants to fight this. We have young children. 

[Karen_L]

Hi @Kimbertd, 

I, too, am glad you found us. You're in a hard time, for sure, but you will find good information on this forum, and on the general lungevity.org site. Perhaps you'd do a separate post on the Introductions page. There are people here with young children and with lots of stories of mets. A separate into will make it easier for people to find you! 

I will tell you the story of friends of my daughter. 30 years old, bad back pain. They couldn't figure it out but saw that the spine was degenerating so went in to stabilize it. They did some biopsies and, there was Stage 4 lung cancer. Fast forward a year: she's off crutches, back at a demanding job, stable on a TKI, and newly married, to boot. 

Lung cancer is horrible and devious, but again and again, I've seen people come back from bad times. I wish you and your husband the best moving ahead. 

Please keep us posted.