Ace Posted April 2, 2023 Share Posted April 2, 2023 Hi all, My 29 year old wife was diagnosed with stage 4 NSCLC lung cancer. My wife was pregnant throughout 2022 and had really bad symptoms such as a chronic migraine, bad pelvic pain, and blurred vision which were all put down to pregnancy symptoms. A couple days after giving birth her vision got really bad - we ended up going to an eye hospital who liaised with our local hospital to get scans expedited and then given the diagnosis 3 weeks after the birth. The cancer spread to her brain (with significant growth), bones, eyes, and liver. She had 10 rounds of palliative radiotherapy to the brain and 1 round to the back/spine. As her type is EGFR exon 19 del, she has been taking tagrisso/osimertinib. It is now been 5 months since on tagrisso and there has been improvement all around. She was on morphine at the start but no more painkillers and there is a bit more normality. We have a super active 2 year old in addition to our new born (who is coming up to 6 months) and are of course terrified for the future. Would love to hear from anyone in a similar situation, other people on tagrisso, people who have progressed. I am watching the blu-945 trials and hoping it gets released soon. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
GBean Posted April 16, 2023 Share Posted April 16, 2023 Hello...I am reading your story. Your wife and you are troopers! My husband also has EGFR exon 19 del and was diagnosed with stage 1b lung cancer back in 2021. This past January 2023, he ended up in ER with seizure to later find out that he had Stage IV Brain Mets from his NSCLC. They resected one brain tumor, however about 11 remain. He has had 15 days WBRT and has been on Tagrisso since Mid February. He has adenocarcinoma type. Might I ask the dosage of Tagrisso your wife is on? My husband is at 120mg, however doctor wishes for him to get to the max dose of 160mg for full brain penetration. He just can't handle the increase just yet. He is very fatigued and I don't know if it is from the Tagrisso, the radiation, or the cancer. I will check out the trial you mentioned. I have read many of the FLAURA articles and research. Some help but some do not. Hang in there Ace! Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Ace Posted April 24, 2023 Author Share Posted April 24, 2023 Hey GBean, Really sorry to hear about your husband, I of course understand your position. The dosage she is on is 80mg which seems to be the standard. When we asked our oncologist about higher dosage, she said it's not the norm for her to try this and if it's not working at 80mg, they would move on from tagrisso. Not sure I agree with that, definitely think it's worth exploring higher dosage especially for the brain mets. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Kamoto Posted May 27, 2023 Share Posted May 27, 2023 I wouldnt go past 80mg. just because you increase the dose doesn't mean you accelerate the reduction or removal of tumors. my brain tumor was the size of a pencil head, and within six months was gone on 80MG. my lung is reduced by about 80% and i'll now more on tuesday as i have a scan scheduled. Tagrisso can have some serious side effects. If she tolerates the 80mg does well, as I do, stay with that. i have zero side effects. I wouldn't want the heart issues which could come with a higher dose. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
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