Eileainn Posted February 15, 2017 Share Posted February 15, 2017 My brother is 51 yrs old, a former long time smoker, and his CT scan last February showed a large mass in his left lung which encapsulates the left bronchus with supraclavicular, mediastinal, and right lung lymphadenopathy. Not long after his voice became weak (the mass was obviously putting pressure on a nerve that ran up to the vocal cord). He was officially diagnosed with either stage IIIb or IV NSCLC (moderately differentiated) in May at Tampa General's cancer center and later in that month after a PET scan confirmed it had spread to his vertebrae and was officially stage IV. He started chemo in July with gemcitabine and carboplatin. While on chemo it had shrunk a little. After a two-month break, a CT scan showed that the mass had grown. In November he had surgery to remove multiple vertebrae and had a cage and screws placed, we were told that the mass was putting pressure on his aorta and if it continued to grow that it could rupture. Also that same month he started Opdivo (nivolumab), as far as I understand he does not have any of the genetic mutations (ALK, EGFR, ROS1, etc.). We decided to transfer to Moffitt. So far on Opdivo, the scans have shown that it is neither growing nor shrinking. A few days ago he started coughing up a couple of tablespoons of fresh blood, numbness in one leg, and his back pain had increased so yesterday his GP wrote a note for him to go to the ER. He's currently in the local hospital. Besides the hemoptysis, numbness in one leg, and increase in back pain, there is nothing else out of the ordinary. His back pain coupled with leg paresthesia indicates to me that there is something going on in the vertebrae, possibly further metastases or perhaps something to do with the surgery. Anyway, anyone have advice? He doesn't want to do chemo again. Although if there is promising chemotherapy out there, I wouldn't be opposed to running it by him. Also, are there any promising immunotherapy drugs in the pipeline for those without mutations? Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 15, 2017 Share Posted February 15, 2017 Eileainn, Your brother indeed has a lot going on. Just some clarifying questions. Do I understand that your brother started Opdivo in November 2016? How long after starting Opdivo was the scan that showed his tumors neither growing or shrinking? Has experienced adverse side effects from Opdivo? And how long after the scan was his episode of hemoptysis, numbness and increase in back pain? The point of my questions is to determine if Opdivo is working. Some I know taking the drug get a stabilization of their tumors -- that is they neither grow nor shrink. Your mention of symptoms that caused his current hospital admission could be progression of cancer or as you indicated problems resulting from the surgery. My advice would be to learn what is causing the symptoms of hemoptysis, numbness and pain and hospital testing (during his current admission) will likely tell you this. Then, depending on the cause of these symptoms, consult with his oncologist to determine next steps. Are there promising immunotherapy drugs in the pipeline? Yes, there are many and a cancer center like Moffitt ought to have the latest information. Here is a rundown on immunotherapy and approved drugs. Many here have had both progressions and recurrences of lung cancer after treatment. Unfortunately, lung cancer is a very persistant disease. But the fact that we have so many long term survivors on this site ought to kindle hope for your brother's outlook. Welcome here. You'll likely have many more questions and this is a good place to ask them. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
Eileainn Posted February 15, 2017 Author Share Posted February 15, 2017 The doctor at the local hospital (not Moffitt/Tampa) says as long as he doesn't cough up more blood he can go home tomorrow. Although only a CT scan of his chest was done and not of his back. The doctor felt his back pain is from the Opdivo. I'm concerned of something being overlooked but I'm not a doctor so I don't know. He's suppose to wear a back brace since his surgery, but he doesn't always wear it. The last CT scan that was seen by his oncologist was done on the 6th. According to that, the growth has stabilized. That was also the last time he had an infusion. He has had six infusions so far. He goes back to Moffitt the 21st. And yes he started the Opdivo in November 2016. The hemoptysis started Sunday. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 16, 2017 Share Posted February 16, 2017 Eileainn, Ensure the hospital doctors include your brother's oncologist on the radiologist report of the hospital administered CT scan. That scan should show areas of concern along most of his back. I'm not sure I understand how Opdivo would cause back pain so ask the hospital doctors to explain their reason for this association. Any explanation by the hospital doctors for his hemoptysis? Pain from not wearing a back brace is something I understand and you should press your brother to wear it. Lung cancer that metastasizes to the bones often causes weakness in the bones. Has his oncologist ever mentioned the drug Zometa as an additional treatment? I assume your brother will meet with his oncologist on the 21st. If that is the case, then the hospital CT results, Opdivo caused back pain, and Zometa would be good topics for discussion. Can you accompany your brother to this consultation? If not, is there someone in the family who can. It is often important to have a second set of ears on hand to ensure all questions get asked and answered. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
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