Ros1 mutation,stage 4 lung cancer, Non smoker

Posted by velmaforever @velmaforever, Dec 15, 2023

Diagnosed with stage4 right lung cancer in march, had a pleural biopsy in mid April and since then having pain on right side, mutiple CT scans, ultrasound showed nothing abnormal. So been left with nerve pain diagnosis. Anyone else have same issue. Ros1 mutation taking Xalkori

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pb50 | @pb50 | Dec 18, 2023

In reply to @velmaforever "Yes" + (show)

So I had VATS surgery - three holes - one for irrigation, one for camera, and one for surgical instruments. I still lhave persistent pain from my lobectomy. It feels like rib//diaphragm just don’t want to expand and every deep breath is painful. Not sharp or stabbing, but more like knee pain. That says “don’t do that again”
When I try to take a deep breath.

velmaforever | @velmaforever | Dec 18, 2023

Yeah it’s a dull pain but always there. It feels like something heavy in there. For four months after the thoracoscopy I wasn’t able to do anything, now back to work but it gets very tiring. I’m in my late forties and was in perfect health till my diagnosis.

pb50 | @pb50 | Dec 18, 2023

Yea I’m older but was very energetic.

For what it’s worth, my rheumatologist gave me prednisone
- max dose of 20mg x 4 days and then weaning down over 12 days.
And at the top two doses (15mg and 20 mg) my rib and diaphragm pain completely disappeared. You might ask your doc what he thinks.