Meloni Posted February 5, 2018 Share Posted February 5, 2018 Hi All, I haven't updated in awhile. My ALK+ NSCLC progressed to the brain as of September 2017. The lesions are small, fortunately, but occupy an important region, the right thalamus. I underwent gamma knife in October, and the November MRI indicated the lesions were smaller. I also switched to a new TKI, Alecensa / Alectinib, which offers brain protection. The Xalkori I was previously taking did not provide that benefit. There is no evidence of disease below the skull as of my January PET. I have a brain MRI this Wednesday and follow-up appointment with neurosurgeon one-hour later. We are hoping for smaller lesions, no lesions, or no change in the lesions. The doctors are optimistic they can keep the cancer managed, if not cured. I appreciate their kick *ss attitude, and hope they are right. So far this little beast has been like The Little Engine that Could. On another note, February 15 is my two-year anniversary since I knowingly became a survivor of lung cancer. Meloni Link to comment Share on other sites More sharing options...
LexieCat Posted February 5, 2018 Share Posted February 5, 2018 Good luck, Meloni! Will keep fingers crossed and send you some good vibes. Sounds like you've got some great docs on your team--that really helps, doesn't it? My surgeon's attitude was a HUGE factor in reducing the level of anxiety when I had my surgery. Keep us posted--and congrats on the upcoming 2-year milestone! Link to comment Share on other sites More sharing options...
Tom Galli Posted February 6, 2018 Share Posted February 6, 2018 Meloni, Haven’t heard from you for a while. So glad to learn the change in chemo helped. Waiting for the Brain MRI results and really hoping NED is the result. Stay the course. Tom Link to comment Share on other sites More sharing options...
Meloni Posted February 8, 2018 Author Share Posted February 8, 2018 Good morning all, Follow-up to the MRI: the three brain lesions are still present, but they have not grown, and they might be a touch smaller! They are also fainter. No new lesions to be found. Doc says this is all good news and I am a boring patient. Meloni Link to comment Share on other sites More sharing options...
LexieCat Posted February 8, 2018 Share Posted February 8, 2018 LOL, one situation where being told you're boring is really great news! Link to comment Share on other sites More sharing options...
Robert Macaulay Posted February 10, 2018 Share Posted February 10, 2018 Intresting CT scan yesterday was scheduled and have had lots of these over the years but none like yesterday. Nurse got the vein for whatever they put in there and done flush no concerns .So I then get setup for the head scan and he then tell they are starting to inject the liquid all of sudden I feel the pain were the needle went in for IV Was on the borderline of severe but stuck it out as I was on my back and could not talk because of my previous cancer surgery and then he comes on the speaker and says we have problem. the liquid was not going into my bloodstream and the only noticed on the scan. they took the IV out and switched arms and completed the scan.. Time I got to my feet the doctor was there and my left bicep was enormous and the doctor said it will go down overnight with icing or hot compress which it did. First time for everything. lol Link to comment Share on other sites More sharing options...
Tom Galli Posted February 10, 2018 Share Posted February 10, 2018 Meloni, Simply WONDERFUL news! Stay the course. Tom Link to comment Share on other sites More sharing options...
Tom Galli Posted February 10, 2018 Share Posted February 10, 2018 Robert, Unfortunately, I've had my share of contrast eruptions. I don't let my scan guy machine-inject the contrast anymore. They run the first pass without contrast, then he shuts off the machine, and slowly pushes in the contrast media by hand to avoid a blow-out. Next time, try that approach. Hope the test reports are good. Stay the course. Tom Link to comment Share on other sites More sharing options...
Robert Macaulay Posted February 10, 2018 Share Posted February 10, 2018 2 minutes ago, Tom Galli said: Robert, Unfortunately, I've had my share of contrast eruptions. I don't let my scan guy machine-inject the contrast anymore. They run the first pass without contrast, then he shuts off the machine, and slowly pushes in the contrast media by hand to avoid a blow-out. Next time, try that approach. Hope the test reports are good. Stay the course. Tom Yes the strange thing was the initial pain at the very beginning, I thought I may as well stick this out till they finish. But what you say makes sense. Link to comment Share on other sites More sharing options...
LaurenH Posted February 16, 2018 Share Posted February 16, 2018 On 2/8/2018 at 1:22 PM, Meloni said: Good morning all, Follow-up to the MRI: the three brain lesions are still present, but they have not grown, and they might be a touch smaller! They are also fainter. No new lesions to be found. Doc says this is all good news and I am a boring patient. Meloni We've missed you Meloni! I definitely think that your doctor telling you that you're a boring patient is a great compliment! And happy two-year anniversary - we're very grateful to have you as part of this community. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
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