Stephanie2024

I haven't spoken to the doctors and am not sure how to interpret this report, other than I still have the mutation in the blood. You make a good point that perhaps even the molecules blocked by Osimertinib would show up in the blood, so having the mutation in the blood doesn't necessarily mean that Osimertinib isn't controlling the cancer. I am just feeling nervous about what's happening. Thank you!

Thank you everyone for your advice! This is such an amazing support group. I am a 46-year-old Chinese woman diagnosed with Stage IV Adenocarcinoma in January of 2024 with metastasis to brain and bone. I completed 4 cycles of chemo (Carboplatin/Alimta) February through April and have been taking Tagrisso. The May scans showed significant improvement, negative brain MRI and reduced activity all over. The August scans show stable condition but some areas are still lighting up on a PET scan, some better and some a little worse (lung and bones 2.5-4.0 SUV range) compared to the May scans. Radiation oncologist reviewed the images with me and suggested waiting longer to make radiation decisions because the SUV's weren't noticeably worse compared to the May scans. I also had a consult with a very experienced lung cancer medical oncologist and he recommended additional chemo of Alimta to try to achieve a negative scan. His rationale is that my EGFR mutation is already controlled by Tagrisso, so whatever is still lighting up must be the other minor mutations revealed by the liquid biopsy. He ordered a new liquid biopsy.
I have some questions for this group:
1. Is the expected condition after 6 months of chemo/Tagrisso a negative PET scan? If so, what's happening now means I have other problematic mutations lighting up the scan and thus we need to take action to treat those mutations. 
2. Because my 6-month scans are not drastically better than my 3-month scans, is the benefit of Tagrisso maxed out meaning it can still maintain the status quo but not improving further.
3. Isn't it better to radiate the active areas early rather than waiting for it to become more active and possibly spreading to other areas?
4. Should I consider chemo? There are so many side effects to chemo, and I'm really hesitant to start it again. I also worry that chemo will weaken my body overall. If we need to add an additional treatment, I'm leaning toward radiation to achieve better results than what 4 rounds of chemo didn't achieve.
Thank you so much!

Thank you!

Thank you so much, Tom!

Thank you for your feedback last time!  I finished four rounds of chemo and it’s been three months since I started treatment for Stage IV lung cancer (chemo and Tagrisso).  I  just completed MRI and PET scans.  Brain MRI showed the met is gone.  Other MRIs show some abnormalities in my spinal cord and bones are showing improvement.  My PET scan showed decreased but still metabolic activity in lung and pelvis.  Is this expected?  I was disappointed that there is still active cancer in my body after chemo and hoping that I wouldn’t have to do radiation.

Thank you for your feedback last time!  I finished four rounds of chemo and it’s been three months since I started treatment for Stage IV lung cancer (chemo and Tagrisso).  I  just completed MRI and PET scans.  Brain MRI showed the met is gone.  Other MRIs show some abnormalities in my spinal cord and bones are showing improvement.  My PET scan showed decreased but still metabolic activity in lung and pelvis.  Is this expected?  I was disappointed that there is still active cancer in my body after chemo and hoping that I wouldn’t have to do radiation.

I am 46 year old Chinese female diagnosed with Stage IV lung cancer.  I started chemotherapy and Tagrisso.  So far I have done two rounds of chemo.  My most recent brain MRI shows the brain mass shrinking from 6mm to 3mm.  My lab metrics are all trending down, some dropping below normal ranges.  I wonder if I should continue chemo therapy (2 more rounds remaining).

Thank you so much for your response and for giving me more hope!  

I am 46 year old Chinese female diagnosed with Stage IV lung cancer.  I started chemotherapy and Tagrisso.  So far I have done two rounds of chemo.  My most recent brain MRI shows the brain mass shrinking from 6mm to 3mm.  My lab metrics are all trending down, some dropping below normal ranges.  I wonder if I should continue chemo therapy (2 more rounds remaining).